A few weeks ago, I began taking a very low dose of LDN. I had three reasons for this - it has been documented to help lyme disease sufferers in addition to thyroiditis and other autoimmune conditions. I figured it was worth a try, and my LLMD/ND agreed.
For those who have never heard of LDN before, it is low dose naltrexone. If you google it you will find a lot of information about its off-label use for many chronic conditions including Multiple Sclerosis, Crohn's Disease, cancer and other autoimmune problems... even HIV/AIDS. LDN has been in use since the mid-1980s and is becoming better recognized studies are being run to see how it affects many kinds of conditions.
From my understanding, LDN is an opiate receptor inhibitor and immune system booster. Here is a link to the site that can best explain more.
My experience so far with this low dose drug has been nothing short of a miracle.
Although I have a wide variety of lyme-induced symptoms ranging from thyroid and adrenal problems to interstitial cystitis and GERD, the problem that has recently been most debilitating for me has been pain, aching and severe inflammation from spinal injuries that I have had for a few years. Recently my L4-5 disc herniation has been very inflamed, making it difficult for me to bend forward or walk without pain. I have also (thanks to a recent fall and lots of stroller lifting in and out of the car) managed to injure my mid-thoracic spine and it has been a source of great pain.
I did not have much expectation surrounding LDN in fact I was quite nervous about taking it, especially after having a bad initial reaction to 1.5mg which is considered a low dose.
My LLMD encouraged me not to give up on the LDN after my first bad experience but to wait a week and try again at a lower dose, then gradually build up. I started again at .5mg which went much better, and have now built up to .75mg a night with no problems.
After taking the LDN for about four nights, I woke one day to discover that I had literally no pain anywhere in my body. Zero. My spine felt amazing and I felt about fifteen years younger. I thought it was a fluke but since that time I am happy to report that the absence of pain is real. I can function with great stamina and even a spring in my step upon occasion. I have to remind myself about the back injuries so that I will not overdo it, since the injuries are real and diagnosed by MRI. If I didn't know they were there though, I would never guess. The LDN has given me a lot of joy back. I just hope that throughout the rest of my life there will always be a physician willing to prescribe it in such a low dose to me for this off-label use. I worry about the government banning off-label prescription of medications now... something I never would have imagined worrying about before.
If you suffer from an autoimmune or rheumatic condition, I can only say that in my case it has been absolutely amazing. I am telling everyone I know that suffers from chronic pain just how much it has helped me. I am also sleeping better than I have in years.
I am excited to see what the future will hold for me, and can honestly say that I am feeling so much better. I feel very lucky and blessed to be on this path back to wellness. I am starting to genuinely believe that I will be around to watch my children grow into adulthood and maybe even meet my own grandchildren someday. This kind of genuine hope is such a blessing.
May this post bring you hope and perhaps insight into a new mode of treatment.
Monday, November 29, 2010
Saturday, October 30, 2010
Falling down the staircase...
A few days ago I was cleaning my house with my young daughter when I realized that my feet were cold so I went upstairs, pulled on a pair of fuzzy synthetic "fun" socks and began to run back down. Out of nowhere, and for the first time in my 34 years, I lost my footing and began to fall down the staircase. Time seemed to go in slow motion as I felt myself flying, trying to find my footing, slipping anew, and finally coming down hard on my extended right arm... whereupon I heard a large crack and felt a stabbing/aching pain all throughout my shoulder.
In all, I managed to tumble down six stairs - an entire flight.
I spent the morning at Urgent Care where they took 5 xrays and determined that I had not broken any bones. The doctor told me that until the inflammation went down they would not be able to determine if I had herniated any discs - and so for now, I've been icing and waiting to see a chiropractor on Monday.
As much pain as I am in, I know I was really lucky not to have broken a vertebrae or cracked my head on anything. I am grateful for that.
It made me think about how quickly something can happen that can change your life irrevocably. In a single instant, everything can shift.
My autoimmune journey really kicked off about one year ago (despite having had the Hashimoto's for a few years prior) and since that time, I have often felt like I was free falling down Alice's rabbit hole, unsure of my footing or where I would land. It has been an exhausting, frightening, anxious time.
Yet nearly four months since I learned that I might have a devastating collagen vascular disease, I am hopeful that I did hit bottom this Summer... that my diagnosis with lyme and babesia were just the beginning of my journey back to vibrant health.
So far, I have not noticed a lot of difference from the herbs I am taking - other than the diuretic effect of the Smilax. I am slowly trying to build up my tolerance to them, adding more drops every seven days.
Wonderfully, the treatment for my low progesterone seems to be extremely helpful and I have seen definite measurable improvements in some of my most frustrating symptoms since beginning to use progesterone cream. Before taking it, my progesterone levels were menopausal... now I am beginning to feel like a woman again.
I still have dark days, moments when I wonder what is yet to come and how I will get through all of this. I pray to find peace with each step of my path, even the difficult ones. I worry about the fact that there is no cure for Lyme and that I don't know what it will take for me to go into remission and stay well, with no advent of wretched autoimmune problems or other disease.
Yet, there are also spots of great illumination that keep me going... stories of remission from the Road Back Foundation bulletin board... new research breakthroughs... and even a story I read last night in the New York Times about a woman who was dying of incurable Clostridium difficile who received a transplant from her husband's healthy fecal matter and was cured within one day... thanks to his healthy bacteria completely wiping out the C.Diff.
Miracles do happen every single day in this world, in this country, in this city. For all I know, I am one of those miracles ~ currently in process.
May this post find you well and bring you even more health.
In all, I managed to tumble down six stairs - an entire flight.
I spent the morning at Urgent Care where they took 5 xrays and determined that I had not broken any bones. The doctor told me that until the inflammation went down they would not be able to determine if I had herniated any discs - and so for now, I've been icing and waiting to see a chiropractor on Monday.
As much pain as I am in, I know I was really lucky not to have broken a vertebrae or cracked my head on anything. I am grateful for that.
It made me think about how quickly something can happen that can change your life irrevocably. In a single instant, everything can shift.
My autoimmune journey really kicked off about one year ago (despite having had the Hashimoto's for a few years prior) and since that time, I have often felt like I was free falling down Alice's rabbit hole, unsure of my footing or where I would land. It has been an exhausting, frightening, anxious time.
Yet nearly four months since I learned that I might have a devastating collagen vascular disease, I am hopeful that I did hit bottom this Summer... that my diagnosis with lyme and babesia were just the beginning of my journey back to vibrant health.
So far, I have not noticed a lot of difference from the herbs I am taking - other than the diuretic effect of the Smilax. I am slowly trying to build up my tolerance to them, adding more drops every seven days.
Wonderfully, the treatment for my low progesterone seems to be extremely helpful and I have seen definite measurable improvements in some of my most frustrating symptoms since beginning to use progesterone cream. Before taking it, my progesterone levels were menopausal... now I am beginning to feel like a woman again.
I still have dark days, moments when I wonder what is yet to come and how I will get through all of this. I pray to find peace with each step of my path, even the difficult ones. I worry about the fact that there is no cure for Lyme and that I don't know what it will take for me to go into remission and stay well, with no advent of wretched autoimmune problems or other disease.
Yet, there are also spots of great illumination that keep me going... stories of remission from the Road Back Foundation bulletin board... new research breakthroughs... and even a story I read last night in the New York Times about a woman who was dying of incurable Clostridium difficile who received a transplant from her husband's healthy fecal matter and was cured within one day... thanks to his healthy bacteria completely wiping out the C.Diff.
Miracles do happen every single day in this world, in this country, in this city. For all I know, I am one of those miracles ~ currently in process.
May this post find you well and bring you even more health.
Tuesday, October 19, 2010
A little progress, a lot of hope...
For the first time in a year, I almost feel like my head is clear. It doesn't last all day, and it does come and go. Yet, I can think! My brain is working for me again and I love it!!!! There have been so many days - weeks really - in the last calendar year that were lost to exhaustion, depression, and mostly a feeling like I was swimming through pudding all the time. I forgot the words for simple items and found my speech slurring inexplicably. It was scary and frustrating, and more than anything, it simply wasn't me. After almost 35 years in this body, I know the difference between ME and NOT ME and let me tell you, I really wasn't myself.
It has been almost four months now that I have been actively treating the mycoplasma pneumoniae infection I was diagnosed with in July, and three months since I went gluten free again. Thanks to the wonders of Moducare 6x a day plus other supplements, good nutrition, better sleep, less stress and now a whole plethora of antimicrobials and anti-parasitic herbs, I am slowly getting my groove back. Better yet, I feel the fear receding. I now understand what I am challenged with, and I am up to the challenge. Just knowing what is happening has been a huge part of the battle for me.
Yesterday I got back more bloodwork results and - unsurprisingly to either of my LLMDs - I am positive for babesia microti. This is in addition to the positive Western Blot test for borrelia burgdorferi and the positive mycoplasma. My bugs and protozoa have names! Perhaps better still, we now know definitively that they exist in me and that they are at the root of much of the havoc that has taken place for me medically in the last year.
How can I explain to anyone who doesn't suffer from a health challenge, just how wonderful it is to actually know why these mysterious "autoimmune" things keep happening in my body! The explanation alone is so empowering, and better yet I know I am actively fighting this stuff. So I feel proactive and excited to see just how much I can heal in the next few years.
This is the list of miracles I would love to see happen:
This is what I am praying for every day, and yet what really keeps me motivated is the simple goal that I will be here to spend time with my children, help guide them, watch them grow up and maybe even see my own grandchildren. I want to watch them go through all of the seminal life events - graduations, weddings, holidays, births - and to give them love every step of the way.
For the first time in a full year, I really believe this is going to happen. I have assembled such a crackerjack team of professionals to help me - great lyme doc, great naturopath, great rheumatologist, great support network... I feel on fire with love for the world and confidence that I DO have a permanent place here, at least for two more generations :-)
It is good to feel optimistic again. That is probably the best gift of all.
If you are reading this and dealing with an autoimmune problem, lyme disease, babesia or just a group of mysterious symptoms that no-one seems to be able to pin down, I hope that this post will give you the hope to persevere until you can actually find a diagnosis and begin healing.
Much love.
It has been almost four months now that I have been actively treating the mycoplasma pneumoniae infection I was diagnosed with in July, and three months since I went gluten free again. Thanks to the wonders of Moducare 6x a day plus other supplements, good nutrition, better sleep, less stress and now a whole plethora of antimicrobials and anti-parasitic herbs, I am slowly getting my groove back. Better yet, I feel the fear receding. I now understand what I am challenged with, and I am up to the challenge. Just knowing what is happening has been a huge part of the battle for me.
Yesterday I got back more bloodwork results and - unsurprisingly to either of my LLMDs - I am positive for babesia microti. This is in addition to the positive Western Blot test for borrelia burgdorferi and the positive mycoplasma. My bugs and protozoa have names! Perhaps better still, we now know definitively that they exist in me and that they are at the root of much of the havoc that has taken place for me medically in the last year.
How can I explain to anyone who doesn't suffer from a health challenge, just how wonderful it is to actually know why these mysterious "autoimmune" things keep happening in my body! The explanation alone is so empowering, and better yet I know I am actively fighting this stuff. So I feel proactive and excited to see just how much I can heal in the next few years.
This is the list of miracles I would love to see happen:
- Hashimoto's thyroiditis - gone
- Adrenals healthy again
- Interstitial cystitis - gone
- Raynaud's phenomenon - gone
- Esophageal motility back to normal or improved
- Vulvadynia - gone
- All yeast and fungal infections - gone
- Continued heart, lung, kidney health!
- Direct bilirubin - normal
- Brain fog and anxiety - gone
- Able to remember things with sharp clarity again
- Parasthesias, electric charges, twitching - all gone
- ANA negative with no pattern... that would be AWESOME!
This is what I am praying for every day, and yet what really keeps me motivated is the simple goal that I will be here to spend time with my children, help guide them, watch them grow up and maybe even see my own grandchildren. I want to watch them go through all of the seminal life events - graduations, weddings, holidays, births - and to give them love every step of the way.
For the first time in a full year, I really believe this is going to happen. I have assembled such a crackerjack team of professionals to help me - great lyme doc, great naturopath, great rheumatologist, great support network... I feel on fire with love for the world and confidence that I DO have a permanent place here, at least for two more generations :-)
It is good to feel optimistic again. That is probably the best gift of all.
If you are reading this and dealing with an autoimmune problem, lyme disease, babesia or just a group of mysterious symptoms that no-one seems to be able to pin down, I hope that this post will give you the hope to persevere until you can actually find a diagnosis and begin healing.
Much love.
Wednesday, October 13, 2010
My "Balance" Doctor
This is an excerpt from a response I wrote today to a lady on the Road Back Foundation Bulletin Board about whether or not to pursue lyme treatment. I feel that it really sums up where I am right now in terms of my healing and my view on health altogether... so I am going ahead to post it here on my autoimmune blog as well. Maybe someday it will help bring encouragement or faith to someone suffering from a "mysterious" autoimmune problem ~ and that would be wonderful.
I wrote:
"At the end of the day, I had almost every single lyme symptom on any lyme checklist I could find. I figured it was better to embark on a treatment and see what happened, rather than continuing to live feeling awful and foggy - and having so many MDs offer to give me antidepressants because they couldn't come up for an explanation for my symptoms. Or even more frustrating, to have multiple doctors tell me that I was likely developing an autoimmune disease but only time would tell which one, and there were no cures for any of them anyway.
I am seeing a well respected LLMD/ND (naturopathic doctor) and I have to say that I am already noticing positive changes based on the protocol I have been on for 3 weeks. They are small changes. However, just knowing that I am actively doing something to improve my health makes me feel better and more positive.
I honestly view my lyme doctor as a "balance" doctor. She is helping me to get my body back into balance - and frankly, who cares how it got that way. I have tested positive twice (via Labcorp) for active mycoplasma infection, my hormones are off, my adrenals aren't functioning normally, I have Hashimoto's - you name it. Plenty of "traditional lab" bloodwork to show that my body isn't happy with something. I believe that following up with the lyme by taking appropriate antimicrobials, balancing out the hormones, healing my gut with probiotics, cutting out gluten and if necessary taking antifungals... all of this is just getting my body back into balance.
So many people have told me in the past week how much better I am looking, and I don't even need this wonderful validation because overall, I have more energy and I can think more clearly. I am less depressed. Something is really helping me.
Thanks to all of the last 3 months, I no longer believe in autoimmune disease or even cancer. (I was checking out the studies last night on PubMed showing a proven causal relationship between bacteria/viruses and cancer... there is so much evidence out there.) At this point, I simply believe that we are [mammals] exposed to bacteria, protozoa, viruses and environmental toxins - which combined with poor diet, lack of sleep and stress, create illnesses that we have classified into different categories and given names like "Alzheimer's" or "Scleroderma". I think the main thing is to be proactive in getting your body back into balance.
The great thing about Lyme doctors, is that they really do look at you holistically. My LLMDs are the only people who look at me and don't think it is crazy or tragic that I have thyroid, adrenal, bladder and vulvadynia problems, along with disc hernations. They nod their heads and say, "Yep, all of that is typical lyme and babesia." For them, I'm just a run-of-the-mill patient. I can't tell you how good that feels, to be viewed as simply a normal person who has contracted lyme and possibly co-infections."
I really am feeling different. It is hard to quantify just yet, since I have only been on treatment for 3 weeks. However, I know for sure the treatment isn't hurting me - I just had a CBC run last week and my creatinine was at its best level in the last year, my kidney function is awesome :-) All of my numbers looked great. Other than that, my skin has got its color back, my acid reflux is about 85% improved, my digestive tract has normalized in such a great way, I have more energy, and I can think more clearly. I don't think I have been slurring my words as much either. I feel positive and optimistic.
Of course, there are plenty of symptoms I'd love to see cleared up. I'd love to have the parasthesias around my body go away, for one. I'd love to improve my spinal alignment... had a disc go out this weekend and it was excruciating until the chiro put it back in. I'd love to stop feeling itchy, to have physical stamina, and to be able to remember things as sharply as I used to. Having been a "smart" person most of my life, it has been enormously humbling to feel not very smart most of the time. I'd love to have just a little bit of my mental edge back again, if only to enjoy spirited debates with my adorable husband again.
Still, I feel like I am on the right track for which I am so grateful. I'm not as worried right now that I won't be here to see my kids grow up... I'm feeling more optimistic all the time.
I wrote:
"At the end of the day, I had almost every single lyme symptom on any lyme checklist I could find. I figured it was better to embark on a treatment and see what happened, rather than continuing to live feeling awful and foggy - and having so many MDs offer to give me antidepressants because they couldn't come up for an explanation for my symptoms. Or even more frustrating, to have multiple doctors tell me that I was likely developing an autoimmune disease but only time would tell which one, and there were no cures for any of them anyway.
I am seeing a well respected LLMD/ND (naturopathic doctor) and I have to say that I am already noticing positive changes based on the protocol I have been on for 3 weeks. They are small changes. However, just knowing that I am actively doing something to improve my health makes me feel better and more positive.
I honestly view my lyme doctor as a "balance" doctor. She is helping me to get my body back into balance - and frankly, who cares how it got that way. I have tested positive twice (via Labcorp) for active mycoplasma infection, my hormones are off, my adrenals aren't functioning normally, I have Hashimoto's - you name it. Plenty of "traditional lab" bloodwork to show that my body isn't happy with something. I believe that following up with the lyme by taking appropriate antimicrobials, balancing out the hormones, healing my gut with probiotics, cutting out gluten and if necessary taking antifungals... all of this is just getting my body back into balance.
So many people have told me in the past week how much better I am looking, and I don't even need this wonderful validation because overall, I have more energy and I can think more clearly. I am less depressed. Something is really helping me.
Thanks to all of the last 3 months, I no longer believe in autoimmune disease or even cancer. (I was checking out the studies last night on PubMed showing a proven causal relationship between bacteria/viruses and cancer... there is so much evidence out there.) At this point, I simply believe that we are [mammals] exposed to bacteria, protozoa, viruses and environmental toxins - which combined with poor diet, lack of sleep and stress, create illnesses that we have classified into different categories and given names like "Alzheimer's" or "Scleroderma". I think the main thing is to be proactive in getting your body back into balance.
The great thing about Lyme doctors, is that they really do look at you holistically. My LLMDs are the only people who look at me and don't think it is crazy or tragic that I have thyroid, adrenal, bladder and vulvadynia problems, along with disc hernations. They nod their heads and say, "Yep, all of that is typical lyme and babesia." For them, I'm just a run-of-the-mill patient. I can't tell you how good that feels, to be viewed as simply a normal person who has contracted lyme and possibly co-infections."
I really am feeling different. It is hard to quantify just yet, since I have only been on treatment for 3 weeks. However, I know for sure the treatment isn't hurting me - I just had a CBC run last week and my creatinine was at its best level in the last year, my kidney function is awesome :-) All of my numbers looked great. Other than that, my skin has got its color back, my acid reflux is about 85% improved, my digestive tract has normalized in such a great way, I have more energy, and I can think more clearly. I don't think I have been slurring my words as much either. I feel positive and optimistic.
Of course, there are plenty of symptoms I'd love to see cleared up. I'd love to have the parasthesias around my body go away, for one. I'd love to improve my spinal alignment... had a disc go out this weekend and it was excruciating until the chiro put it back in. I'd love to stop feeling itchy, to have physical stamina, and to be able to remember things as sharply as I used to. Having been a "smart" person most of my life, it has been enormously humbling to feel not very smart most of the time. I'd love to have just a little bit of my mental edge back again, if only to enjoy spirited debates with my adorable husband again.
Still, I feel like I am on the right track for which I am so grateful. I'm not as worried right now that I won't be here to see my kids grow up... I'm feeling more optimistic all the time.
Friday, October 1, 2010
Sending love into the great beyond...
Things have been going very well for me. I have started on my protocol and so far, so good. At this point I have not had any terrible reactions to any of the herbs I am taking or the Transfer Factor, am relieved to have gotten all of the bloodwork done (still waiting on co-infection results) and best of all I have had a lot of energy and optimism. Since I stopped eating gluten again, my brain has lost its fog and I can think clearly. I've even found a new product that I am experimenting with for some of my less comfortable daily symptoms and that one seems to be stirring things up quite a lot.
But all that to the side for the day.
I just read on the Road Back Foundation bulletin board that a member from Pennsylvania that I had briefly corresponded with has passed away, quite suddenly, leaving behind his beloved wife. Tears filled my eyes the instant I read her post, letting us know that he has gone to heaven. I have read of so much miraculous healing on the Road Back board, I'd sort of let myself forget the gravity of scleroderma. This poor man had only just found AP one month before he became gravely ill, and had only barely started in on the treatment. He had suffered from scleroderma off and on for almost 50 years. Yet I know when I first read his posts, I truly believed that he would survive and thrive. Tragically, his case was very advanced and he has now passed away.
I grieve the loss of his life, and that his wife is now parted from the man she writes was her soul mate.
I will continue praying for him, keeping him in my warmest of well wishes and prayers, wherever his spirit may be along the journey beyond. Perhaps he and my father who died last year are both part of something bigger and brighter now, free of their suffering. I know one thing, the love that they gave and received will live on forever.
This news makes me more determined than ever to treat my lyme and co-infections, and follow whatever diet or lifestyle choices are necessary to beat these bugs and regain my full health and strength. Three children - jewels brighter than the stars - are counting on me to do so. I will do whatever it takes!
But all that to the side for the day.
I just read on the Road Back Foundation bulletin board that a member from Pennsylvania that I had briefly corresponded with has passed away, quite suddenly, leaving behind his beloved wife. Tears filled my eyes the instant I read her post, letting us know that he has gone to heaven. I have read of so much miraculous healing on the Road Back board, I'd sort of let myself forget the gravity of scleroderma. This poor man had only just found AP one month before he became gravely ill, and had only barely started in on the treatment. He had suffered from scleroderma off and on for almost 50 years. Yet I know when I first read his posts, I truly believed that he would survive and thrive. Tragically, his case was very advanced and he has now passed away.
I grieve the loss of his life, and that his wife is now parted from the man she writes was her soul mate.
I will continue praying for him, keeping him in my warmest of well wishes and prayers, wherever his spirit may be along the journey beyond. Perhaps he and my father who died last year are both part of something bigger and brighter now, free of their suffering. I know one thing, the love that they gave and received will live on forever.
This news makes me more determined than ever to treat my lyme and co-infections, and follow whatever diet or lifestyle choices are necessary to beat these bugs and regain my full health and strength. Three children - jewels brighter than the stars - are counting on me to do so. I will do whatever it takes!
Tuesday, September 21, 2010
Starting Treatment Protocol
for Lyme Disease
I've been a little nervy all day today. Things are going to change, starting tomorrow, and I'm praying that it will turn out to be for the better :-)
I never really explained throughout the last two months what has been happening with me, and I realize that to the average reader who is not already one of my friends or family members, it may have suddenly gotten a little difficult to follow my path.
In a nutshell:
1) After seeing two GI specialists, I learned that I do not have eosinophilic esophagitis or esophageal cancer. The peristalsis in my esophagus is very slow and smooth muscle is hypotensive, also the LES is hyptotensive. Oh, and a 2cm hiatal hernia. This is apparently seen in a variety of collagen vascular disorders, diabetes, hypothyroidism and untreated GERD. My GI in Sacramento said that he believes this is severe GERD and of course wants me on a PPI. I didn't respond well to the drug, and am now trying to go the way of probiotics, dietary change and sleeping elevated.
2) The rheumatologist said there are no current signs of Scleroderma. Bloodwork remains negative, although ANA was positive at 1:40 with a speckled pattern. Rheumatologist said this could be from my Hashimoto's thyroiditis, or possibly even just "normal". Apparently 1/3 of population has this particular finding. He will check me again in November.
3) I tested positive for Lyme disease via an IgM Western Blot serum test. Diagnosis was given in late July by one LLMD and confirmed yesterday by another LLMD/ND. Also confirmed via biofeedback, but I still don't know where I stand on those machines. I have also tested positive, twice, for Mycoplasma Pneumonaie IgM and IgG. Today I had my blood drawn for the last of the co-infection tests... babesia (two kinds), bartonella (two kinds). Also h.pylori. Very, very interested to get results back from this testing.
4) I have begun working with a very talented and highly regarded LLMD/ND who is going to help me walk this path of healing slowly and deliberately. We are going to address all of my known imbalances - female hormones, adrenals, thyroid, heavy metals, candida, bacteria. Starting up slowly with only adrenal support and one anti-microbial. Going to take it from there. It should be a long path but I am ready to do anything to be with my children well into their adulthood. I have been told that healing from chronic lyme and co-infections can take anywhere between 9 months and 3 years on average, possibly longer. I am ready.
5) I am following the lyme diet which means that once again I am going gluten free, and mostly dairy and sugar free. Hoping I will be able to re-add rice into the rotation without hurting my gut too much. I miss the comfort of the wheat bread but not the exhaustion, brain fog and acid reflux I was getting after every slice.
6) Thanks to the incredible generosity of a local clinic owner I am going to get infrared sauna treatments 2 - 3x per week for a price that my family can afford... also, they offer massage covered through Aetna (yay!!!) and I will continue acupuncture and using EFT for inner balance. Also acupuncture on Sundays, with the best acupuncturist in the entire world.
7) Not to mention, church on Sundays and spiritual reading/meditation every day!
8) And exercise as I can tolerate it :-) Lots and lots of sunshine.
9) Last but certainly not least, I am so hugely indebted to the support network I have found on the Road Back Foundation bulletin board. I can't believe how far I have come emotionally in the last two months and how much progress I have made in terms of getting a diagnosis and getting on treatment. I would never have come this far so fast without the RBF and I have received so much valuable advice and support from the other members of the group. I laugh and cry when reading their posts, and after hearing so many staggering stories of healing and remission, I truly believe in miracles.
10) Tomorrow is the big day.
I have been told by many, many, many people including doctors and clinic owners that I should expect to get worse before I get better... expect to feel like I have a terrible flu or strong flares of my symptoms as the actual bacteria or protozoa begin to react to getting chased by antimicrobials/antimalarials. Even though I am going low and slow with herbs and homeopathics to start, I am still expecting this.
But I am not very scared of the Herxheimer response ("herxing", they call it). I am more afraid that I will somehow be the one lyme patient for whom none of the many treatment options or modalities will work... and that I will just get sicker instead of getting well.
That isn't the best of me talking, though. Just the small, scared part. The best part of me knows that I have a ton more to do and accomplish in this world... most of all, to love and care for my children and husband who I adore. I have found the path of Road Back, AP, Lyme treatment, etc. because I am willing to do whatever it takes to get well and somewhere deep down, I really believe that I will. I am very excited to step into the miraculous!
So, that said... I'll let you know how it goes!
I never really explained throughout the last two months what has been happening with me, and I realize that to the average reader who is not already one of my friends or family members, it may have suddenly gotten a little difficult to follow my path.
In a nutshell:
1) After seeing two GI specialists, I learned that I do not have eosinophilic esophagitis or esophageal cancer. The peristalsis in my esophagus is very slow and smooth muscle is hypotensive, also the LES is hyptotensive. Oh, and a 2cm hiatal hernia. This is apparently seen in a variety of collagen vascular disorders, diabetes, hypothyroidism and untreated GERD. My GI in Sacramento said that he believes this is severe GERD and of course wants me on a PPI. I didn't respond well to the drug, and am now trying to go the way of probiotics, dietary change and sleeping elevated.
2) The rheumatologist said there are no current signs of Scleroderma. Bloodwork remains negative, although ANA was positive at 1:40 with a speckled pattern. Rheumatologist said this could be from my Hashimoto's thyroiditis, or possibly even just "normal". Apparently 1/3 of population has this particular finding. He will check me again in November.
3) I tested positive for Lyme disease via an IgM Western Blot serum test. Diagnosis was given in late July by one LLMD and confirmed yesterday by another LLMD/ND. Also confirmed via biofeedback, but I still don't know where I stand on those machines. I have also tested positive, twice, for Mycoplasma Pneumonaie IgM and IgG. Today I had my blood drawn for the last of the co-infection tests... babesia (two kinds), bartonella (two kinds). Also h.pylori. Very, very interested to get results back from this testing.
4) I have begun working with a very talented and highly regarded LLMD/ND who is going to help me walk this path of healing slowly and deliberately. We are going to address all of my known imbalances - female hormones, adrenals, thyroid, heavy metals, candida, bacteria. Starting up slowly with only adrenal support and one anti-microbial. Going to take it from there. It should be a long path but I am ready to do anything to be with my children well into their adulthood. I have been told that healing from chronic lyme and co-infections can take anywhere between 9 months and 3 years on average, possibly longer. I am ready.
5) I am following the lyme diet which means that once again I am going gluten free, and mostly dairy and sugar free. Hoping I will be able to re-add rice into the rotation without hurting my gut too much. I miss the comfort of the wheat bread but not the exhaustion, brain fog and acid reflux I was getting after every slice.
6) Thanks to the incredible generosity of a local clinic owner I am going to get infrared sauna treatments 2 - 3x per week for a price that my family can afford... also, they offer massage covered through Aetna (yay!!!) and I will continue acupuncture and using EFT for inner balance. Also acupuncture on Sundays, with the best acupuncturist in the entire world.
7) Not to mention, church on Sundays and spiritual reading/meditation every day!
8) And exercise as I can tolerate it :-) Lots and lots of sunshine.
9) Last but certainly not least, I am so hugely indebted to the support network I have found on the Road Back Foundation bulletin board. I can't believe how far I have come emotionally in the last two months and how much progress I have made in terms of getting a diagnosis and getting on treatment. I would never have come this far so fast without the RBF and I have received so much valuable advice and support from the other members of the group. I laugh and cry when reading their posts, and after hearing so many staggering stories of healing and remission, I truly believe in miracles.
10) Tomorrow is the big day.
I have been told by many, many, many people including doctors and clinic owners that I should expect to get worse before I get better... expect to feel like I have a terrible flu or strong flares of my symptoms as the actual bacteria or protozoa begin to react to getting chased by antimicrobials/antimalarials. Even though I am going low and slow with herbs and homeopathics to start, I am still expecting this.
But I am not very scared of the Herxheimer response ("herxing", they call it). I am more afraid that I will somehow be the one lyme patient for whom none of the many treatment options or modalities will work... and that I will just get sicker instead of getting well.
That isn't the best of me talking, though. Just the small, scared part. The best part of me knows that I have a ton more to do and accomplish in this world... most of all, to love and care for my children and husband who I adore. I have found the path of Road Back, AP, Lyme treatment, etc. because I am willing to do whatever it takes to get well and somewhere deep down, I really believe that I will. I am very excited to step into the miraculous!
So, that said... I'll let you know how it goes!
Wednesday, September 1, 2010
Long Time, No See
I haven't posted for quite a while. However, this is not all bad. August was by and large a wonderful month for our family which included a much needed vacation to a local island (our first family trip in over two years) and also our annual 4-birthday bash. I felt blessed to spend time with my family, including my siblings who came from distant cities. It was a happy time, and in the midst of it, I saw the rheumatologist in Riverside who is so highly regarded by many. He did a thorough workup and said that for now, he saw no sign of scleroderma. Not only did he tell me this, but he also wrote it on his chart notes (which I got a copy of). That one phrase at the bottom: "No sign of Scl" is something I have re-read in bed at night, when I have had too much anxiety and could not sleep. Because really, I have to admit that I keep waiting for the other shoe to drop. I will be seeing him again in November for a followup checkup.
A lot of the supplements I was taking were making me feel terrific - clear brain, no fog, optimistic, patient. I made the mistake of trying to go cold turkey off of my proton pump inhibitor (Prevacid 30mg) though and boy has that been a HUGE mistake. The rebound hyperacidity has been outrageously intense, so much worse than any reflux I ever had in my entire life before going on the drug. That alone tells me that these pharmaceuticals are not healthy. I don't like the feeling that I have to go back on the drug to suppress the acid that is being caused by the drug. That feels like a pharmaceutical industry ploy to get people addicted to these things for life. So I am going to tough it out and pray that the acid will not damage my esophagus too much in the next few weeks. I am taking natural acid products instead, and have found a very good probiotic called GoodBelly BigShot 50 which has significantly helped.
I am excited about my upcoming appointment with a local LLMD/ND on Monday. I have read her book about the Lyme Diet and she shares my philosophy that food is medicine and that one can heal bacterial infection/hormone imbalance/candida overgrowth with the use of diet, herbals, antifungals and homeopathics - rather than relying solely upon antibiotics. I am open to both but really believe that rebuilding my gut ecosystem is going to be the key to all healing. The lyme connection may tie all of my autoimmune problems together, give them a root cause, and get me on my way to total health. I really believe the day will come when I feel 'normal' - energetic, optimistic, active and healthy just like I did years ago before having children.
I'll let you know how it goes :-)
A lot of the supplements I was taking were making me feel terrific - clear brain, no fog, optimistic, patient. I made the mistake of trying to go cold turkey off of my proton pump inhibitor (Prevacid 30mg) though and boy has that been a HUGE mistake. The rebound hyperacidity has been outrageously intense, so much worse than any reflux I ever had in my entire life before going on the drug. That alone tells me that these pharmaceuticals are not healthy. I don't like the feeling that I have to go back on the drug to suppress the acid that is being caused by the drug. That feels like a pharmaceutical industry ploy to get people addicted to these things for life. So I am going to tough it out and pray that the acid will not damage my esophagus too much in the next few weeks. I am taking natural acid products instead, and have found a very good probiotic called GoodBelly BigShot 50 which has significantly helped.
I am excited about my upcoming appointment with a local LLMD/ND on Monday. I have read her book about the Lyme Diet and she shares my philosophy that food is medicine and that one can heal bacterial infection/hormone imbalance/candida overgrowth with the use of diet, herbals, antifungals and homeopathics - rather than relying solely upon antibiotics. I am open to both but really believe that rebuilding my gut ecosystem is going to be the key to all healing. The lyme connection may tie all of my autoimmune problems together, give them a root cause, and get me on my way to total health. I really believe the day will come when I feel 'normal' - energetic, optimistic, active and healthy just like I did years ago before having children.
I'll let you know how it goes :-)
Sunday, July 18, 2010
Great First Step!
Essentially I am facing two problems currently.
1) My esophagus has stopped working correctly and has no wave function in its lower 2/3, making it impossible for me to swallow solid food. I would like very much to resolve this, so that I can eat dinner with my family.
2) Something has happened that has caused my esophagus to stop working. We need to figure out what it is, and make it better.
Today, I took a fantastic first step toward figuring out step 1. Hurray!
Over the weekend I have found two very exciting articles about the use of electro-stimulation to improve esophageal dysmotility. Here are the abstracts:
Kansas Research Hospital and Medical Center, Kansas City, MO.
Background: The treatment of progressive oropharyngeal dysphagias of neurological origin as well as esophageal motility disorders is extremely difficult and may involve artificial means of maintaining nutrition and hydration, such as the use of percutaneous gastrostomy and other surgeries. Acupuncture has been found to be beneficial in poststroke oropharyngeal dysphagia.
Objective: To describe acupuncture treatment of a patient with progressive oropharyngeal dysphagia and esophageal motility disorder of undetermined etiology.
Design, Setting, and Patient: Case report of a 68-year-old woman at a solo private practice in Kansas City, Missouri, treated beginning in 2004 and followed up through early 2007.
Intervention: Acupuncture treatment including electroacupuncture for 11 sessions. Points used were SP 6 and SP 9 (connected with 2.5-Hz stimulation), LU 7, LI 4, and ST 36, bilaterally. From the second treatment onward, CV 22 was added. Each treatment lasted 25 minutes.
Main Outcome Measure: Symptom response following acupuncture.
Results: The patient reported complete resolution of symptoms after 11 sessions, and she has remained symptom-free for 2 years without needing further acupuncture treatment or any other therapy.
Conclusion: Acupuncture should be considered as one of the therapeutic tools for treating oropharyngeal dysphagia and esophageal motility disorder.
and then,
Transcutaneous electrical nerve stimulation (TENS) improves upper GI symptoms and balances the sympathovagal activity in scleroderma patients.
Sallam H, McNearney TA, Doshi D, Chen JD.
Division of Gastroenterology, Department of Internal Medicine, University of Texas Medical Branch, Galveston, Texas 77555, USA.
Abstract
To assess the impact of transcutaneous electrical nerve stimulation (TENS) at gastrointestinal (GI) acupoints on GI symptoms and quality of life in scleroderma patients, 17 patients filled out SF-36 and GI symptom questionnaires before the electrocardiogram was recorded for two intervals: baseline and TENS. At home, patients applied TENS for 14 days, then were reassessed. Acutely, TENS application significantly increased sympathetic and vagal activities vs. baseline (P=0.02 and P=0.004), respectively. Prolonged TENS application normalized the sympathovagal balance (P=0.04), decreased GI symptom scores (P=0.02) and increased the physical functioning score (SF36), which strongly correlated with the change in the sympathovagal balance (r=0.6, P=0.02). In conclusion, TENS at GI acupoints offers a potential option in the treatment of upper GI symptoms, but further study is necessary.
...
With these two studies in hand, I visited the wonderful acupuncturist who has been treating me for the past eight months. Not only was he impressed with my research but he was very willing to give me the identical treatment that worked on the woman in the original study. So, we did it!
When he inserted the two thin needles in my abdomen (near my esophagus), my entire stomach jumped! It had such a quick and strong reaction. After he started the low electric stimulation in the needles in my calves, my stomach started to make all sorts of noises. It was bubbling and gurgling merrily away, things were really moving down there. I could not stop smiling the entire time. I kept thinking to myself, "This worked for that woman after only 11 treatments and I am already having my first treatment! I am on my way!"
I have no idea if there was any effect at all upon my own esophageal motility but I can definitively state that my entire body responded to the acupuncture and electro-stim today, and my stomach was digesting very well. When my gut jumped as he inserted the needles, my acupuncturist gave me a huge smile and said, "That is a very positive sign. Something was sluggish down there and it just turned back on."
Is it possible to do a happy dance online? I am so happy. It was such a wonderful day. I am feeling 200% better than I did just two weeks ago, my skin is looking so much healthier and my brain fog has lifted. I even managed to take 6 neprinol today and I feel that the supplements have been helping me so much. My whole aura is positive right now. I just know I am on the right path.
So, tomorrow morning we leave... and I hope that after Wednesday, I can write definitively that there is no cancer in my esophagus - that we are on the right track with the healing steps being taken, and that there will be plenty of time for my healing journey.
Sending much love and healing to you.
1) My esophagus has stopped working correctly and has no wave function in its lower 2/3, making it impossible for me to swallow solid food. I would like very much to resolve this, so that I can eat dinner with my family.
2) Something has happened that has caused my esophagus to stop working. We need to figure out what it is, and make it better.
Today, I took a fantastic first step toward figuring out step 1. Hurray!
Over the weekend I have found two very exciting articles about the use of electro-stimulation to improve esophageal dysmotility. Here are the abstracts:
Kansas Research Hospital and Medical Center, Kansas City, MO.
Background: The treatment of progressive oropharyngeal dysphagias of neurological origin as well as esophageal motility disorders is extremely difficult and may involve artificial means of maintaining nutrition and hydration, such as the use of percutaneous gastrostomy and other surgeries. Acupuncture has been found to be beneficial in poststroke oropharyngeal dysphagia.
Objective: To describe acupuncture treatment of a patient with progressive oropharyngeal dysphagia and esophageal motility disorder of undetermined etiology.
Design, Setting, and Patient: Case report of a 68-year-old woman at a solo private practice in Kansas City, Missouri, treated beginning in 2004 and followed up through early 2007.
Intervention: Acupuncture treatment including electroacupuncture for 11 sessions. Points used were SP 6 and SP 9 (connected with 2.5-Hz stimulation), LU 7, LI 4, and ST 36, bilaterally. From the second treatment onward, CV 22 was added. Each treatment lasted 25 minutes.
Main Outcome Measure: Symptom response following acupuncture.
Results: The patient reported complete resolution of symptoms after 11 sessions, and she has remained symptom-free for 2 years without needing further acupuncture treatment or any other therapy.
Conclusion: Acupuncture should be considered as one of the therapeutic tools for treating oropharyngeal dysphagia and esophageal motility disorder.
and then,
Transcutaneous electrical nerve stimulation (TENS) improves upper GI symptoms and balances the sympathovagal activity in scleroderma patients.
Sallam H, McNearney TA, Doshi D, Chen JD.
Division of Gastroenterology, Department of Internal Medicine, University of Texas Medical Branch, Galveston, Texas 77555, USA.
Abstract
To assess the impact of transcutaneous electrical nerve stimulation (TENS) at gastrointestinal (GI) acupoints on GI symptoms and quality of life in scleroderma patients, 17 patients filled out SF-36 and GI symptom questionnaires before the electrocardiogram was recorded for two intervals: baseline and TENS. At home, patients applied TENS for 14 days, then were reassessed. Acutely, TENS application significantly increased sympathetic and vagal activities vs. baseline (P=0.02 and P=0.004), respectively. Prolonged TENS application normalized the sympathovagal balance (P=0.04), decreased GI symptom scores (P=0.02) and increased the physical functioning score (SF36), which strongly correlated with the change in the sympathovagal balance (r=0.6, P=0.02). In conclusion, TENS at GI acupoints offers a potential option in the treatment of upper GI symptoms, but further study is necessary.
...
With these two studies in hand, I visited the wonderful acupuncturist who has been treating me for the past eight months. Not only was he impressed with my research but he was very willing to give me the identical treatment that worked on the woman in the original study. So, we did it!
When he inserted the two thin needles in my abdomen (near my esophagus), my entire stomach jumped! It had such a quick and strong reaction. After he started the low electric stimulation in the needles in my calves, my stomach started to make all sorts of noises. It was bubbling and gurgling merrily away, things were really moving down there. I could not stop smiling the entire time. I kept thinking to myself, "This worked for that woman after only 11 treatments and I am already having my first treatment! I am on my way!"
I have no idea if there was any effect at all upon my own esophageal motility but I can definitively state that my entire body responded to the acupuncture and electro-stim today, and my stomach was digesting very well. When my gut jumped as he inserted the needles, my acupuncturist gave me a huge smile and said, "That is a very positive sign. Something was sluggish down there and it just turned back on."
Is it possible to do a happy dance online? I am so happy. It was such a wonderful day. I am feeling 200% better than I did just two weeks ago, my skin is looking so much healthier and my brain fog has lifted. I even managed to take 6 neprinol today and I feel that the supplements have been helping me so much. My whole aura is positive right now. I just know I am on the right path.
So, tomorrow morning we leave... and I hope that after Wednesday, I can write definitively that there is no cancer in my esophagus - that we are on the right track with the healing steps being taken, and that there will be plenty of time for my healing journey.
Sending much love and healing to you.
Preparing for A Journey
Tomorrow my husband and I will leave our three small children behind with their grandmother and a trusted babysitter, and head north to see an esophageal specialist. In the course of a week I will have three procedures - an esophogram (probably to confirm results of the last one), a TNE and a manometry. The results will be important, not only for my swallowing function but also in terms of at last getting us to a diagnosis. Or at least a lot closer to one.
While we are at the medical center, we will visit in person with a wonderful woman from the Road Back Foundation who called me at home during the very lowest moment I have had since this all started. She called to give me hope, tell me a story of healing, and let me know that I will make it through this. She also gave me the contact information for the doctor who may well save my life with the AP treatment.
I am still in wonder that this situation which is unexpected and a bit grim has already brought so many blessings into my life in the form of amazing advice and support from those who have previously traveled the path I am on. Three weeks ago I had no idea any of this was happening, and now I will meet in person a woman who may have preserved my health and our family in one telephone call. I can't wait to give her a hug.
There is another avenue we will have to look into, if the rheumatological path turns out to be a false lead. My naturopath advised me yesterday that I should also check into parasympathetic nerve disorders, as the autonomic nervous system controls smooth muscle response and the part of my esophagus that has stopped working is smooth muscle. He thinks it could possibly be related to that awful flu shot I had last October... the tingling, twitching, nausea and headaches I have experienced since that time. I guess it could be a postviral (post-vaccine) response. I have no idea how one could navigate successfully through that... but none of the supplements I am taking right now will hurt me in any way, so hopefully they are helping.
I wish I understood why I wake every morning so scared, even though I go to sleep peacefully at night and sleep well. I read last night about Sheldrake's morphic fields and the theory that our brains are like radios positioned to interpret the fields transmitting energy all around us. If my brain/radio has stopped functioning well, surely it must be possible to re-energize it so that it can take in the information about how to send the right signals to my esophagus again.
Maybe that ties into the success they have had with electro-stimulation (both through acupuncture and TENs therapy) to get the lower esophagus motility functioning again - or greatly improved. Maybe the electro-stim helps get the brain/radio back tuned into the right frequency.
I have so much hope and so much confidence that things are going to be okay. Whatever that means. I don't know what I believe about reincarnation, but I am working on finding peace in needing to let go of whatever I ultimately need to let go of -- eating solid food, other physical functions, even being physically present in my body to be near my family. I believe that love lasts beyond death so I am not worried about needing to let go of the profound love I feel for my family. That part will remain no matter what :-)
I guess the journey will get both harder and easier this week. Harder due to the separation from my children, and because we are going to get some concrete information about what is not working in my body. Easier because once we know what we are dealing with, we will be closer to starting a proactive plan for treatment. My lyme results should come back from IgeneX this week as well.
The important thing is, I am alive today and actually feeling pretty darn good. Ready to blend my breakfast. Grateful and appreciative for this moment, and for all of the love and support that surround me.
May this day bring healing to you as well. May all of our journeys be long and graceful.
While we are at the medical center, we will visit in person with a wonderful woman from the Road Back Foundation who called me at home during the very lowest moment I have had since this all started. She called to give me hope, tell me a story of healing, and let me know that I will make it through this. She also gave me the contact information for the doctor who may well save my life with the AP treatment.
I am still in wonder that this situation which is unexpected and a bit grim has already brought so many blessings into my life in the form of amazing advice and support from those who have previously traveled the path I am on. Three weeks ago I had no idea any of this was happening, and now I will meet in person a woman who may have preserved my health and our family in one telephone call. I can't wait to give her a hug.
There is another avenue we will have to look into, if the rheumatological path turns out to be a false lead. My naturopath advised me yesterday that I should also check into parasympathetic nerve disorders, as the autonomic nervous system controls smooth muscle response and the part of my esophagus that has stopped working is smooth muscle. He thinks it could possibly be related to that awful flu shot I had last October... the tingling, twitching, nausea and headaches I have experienced since that time. I guess it could be a postviral (post-vaccine) response. I have no idea how one could navigate successfully through that... but none of the supplements I am taking right now will hurt me in any way, so hopefully they are helping.
I wish I understood why I wake every morning so scared, even though I go to sleep peacefully at night and sleep well. I read last night about Sheldrake's morphic fields and the theory that our brains are like radios positioned to interpret the fields transmitting energy all around us. If my brain/radio has stopped functioning well, surely it must be possible to re-energize it so that it can take in the information about how to send the right signals to my esophagus again.
Maybe that ties into the success they have had with electro-stimulation (both through acupuncture and TENs therapy) to get the lower esophagus motility functioning again - or greatly improved. Maybe the electro-stim helps get the brain/radio back tuned into the right frequency.
I have so much hope and so much confidence that things are going to be okay. Whatever that means. I don't know what I believe about reincarnation, but I am working on finding peace in needing to let go of whatever I ultimately need to let go of -- eating solid food, other physical functions, even being physically present in my body to be near my family. I believe that love lasts beyond death so I am not worried about needing to let go of the profound love I feel for my family. That part will remain no matter what :-)
I guess the journey will get both harder and easier this week. Harder due to the separation from my children, and because we are going to get some concrete information about what is not working in my body. Easier because once we know what we are dealing with, we will be closer to starting a proactive plan for treatment. My lyme results should come back from IgeneX this week as well.
The important thing is, I am alive today and actually feeling pretty darn good. Ready to blend my breakfast. Grateful and appreciative for this moment, and for all of the love and support that surround me.
May this day bring healing to you as well. May all of our journeys be long and graceful.
Friday, July 16, 2010
Dark nights of the soul...
I wonder if most people who suffer from chronic autoimmune diseases find that the time leading up to diagnosis is the most difficult to bear. The search for answers can be long and winding, difficult to navigate even for those with faith.
Today I picked up the paper copy of my radiology results, the same exam which first alerted me to the possibility that I might be suffering with a rheumatic disease.
The paper says -
"Deglutition was normal for all substances and there was no obstruction in the neck and normal peristalsis in the upper esophagus. The lower two-thirds of the esophagus showed almost no peristaltic activity and the esophagus did not empty even in the upright position. There was marked stasis and the patient felt symptomatic. There was no esophageal stricture or evidence for achalasia. The esophagus was not dilated.
Impression: 1. Normal swallowing exam. 2. Primary motility disorder consistent with collagen vascular disease in this patient who has other autoimmune involvement. Consider esophageal manometry for baseline study."
Sigh.
So there you have it. I should be glad it isn't cancer, and I am. I truly am! That is a huge blessing by itself.
That said, I sure wish I could swallow solid food. It is starting to settle in that this may well be permanent.
There has been some good news today though. First, I met with a pulmonologist who said my lungs are currently at 100%, based on a breath test and blood oxygen saturation levels. So for now, no interstitial lung disease.
Got my rheumatoid factor test back. It was also normal, much like the ANA and Scl-anti-70 tests.
Nothing is really adding up just yet. I am sure we'll know a whole lot more after we meet with the esophageal specialist next week. They're going to run a bunch of esophagus specific tests and that should either confirm or refute the radiology report.
The good news is that I'll soon find out about Lyme involvement (if there is any) and if I do have a connective tissue disease, I'm meeting with one of the best AP rheumatologists in the world in two weeks who can get me started with treatment. I have every reason to be extremely hopeful.
That said, today I have been tired and very sad. Maybe it's just part of the process. I'm in my own dark night of the soul, trying so hard to move forward.
My five year old son wrote me a note today with his own unique spelling. So beautiful it made me cry. He wrote "Nies Mome, Frrr Mamme, Wel Mome, Lov (His name, His brother's name)". Translation: Nice mommy, for mommy, well mommy, Love - (my sons)". I pray to God and all things holy that I will be there for him and my other children all through their growing years, to teach them and guide them into adulthood. That is really all I care about. Solid food means nothing compared with that.
Whomever you are, reading this post - I hope this finds you well and healing. If you are having a hard day, I hope that you will feel less alone. We are all connected, and I believe that when even one person heals we all heal to some degree.
Much love to you.
Today I picked up the paper copy of my radiology results, the same exam which first alerted me to the possibility that I might be suffering with a rheumatic disease.
The paper says -
"Deglutition was normal for all substances and there was no obstruction in the neck and normal peristalsis in the upper esophagus. The lower two-thirds of the esophagus showed almost no peristaltic activity and the esophagus did not empty even in the upright position. There was marked stasis and the patient felt symptomatic. There was no esophageal stricture or evidence for achalasia. The esophagus was not dilated.
Impression: 1. Normal swallowing exam. 2. Primary motility disorder consistent with collagen vascular disease in this patient who has other autoimmune involvement. Consider esophageal manometry for baseline study."
Sigh.
So there you have it. I should be glad it isn't cancer, and I am. I truly am! That is a huge blessing by itself.
That said, I sure wish I could swallow solid food. It is starting to settle in that this may well be permanent.
There has been some good news today though. First, I met with a pulmonologist who said my lungs are currently at 100%, based on a breath test and blood oxygen saturation levels. So for now, no interstitial lung disease.
Got my rheumatoid factor test back. It was also normal, much like the ANA and Scl-anti-70 tests.
Nothing is really adding up just yet. I am sure we'll know a whole lot more after we meet with the esophageal specialist next week. They're going to run a bunch of esophagus specific tests and that should either confirm or refute the radiology report.
The good news is that I'll soon find out about Lyme involvement (if there is any) and if I do have a connective tissue disease, I'm meeting with one of the best AP rheumatologists in the world in two weeks who can get me started with treatment. I have every reason to be extremely hopeful.
That said, today I have been tired and very sad. Maybe it's just part of the process. I'm in my own dark night of the soul, trying so hard to move forward.
My five year old son wrote me a note today with his own unique spelling. So beautiful it made me cry. He wrote "Nies Mome, Frrr Mamme, Wel Mome, Lov (His name, His brother's name)". Translation: Nice mommy, for mommy, well mommy, Love - (my sons)". I pray to God and all things holy that I will be there for him and my other children all through their growing years, to teach them and guide them into adulthood. That is really all I care about. Solid food means nothing compared with that.
Whomever you are, reading this post - I hope this finds you well and healing. If you are having a hard day, I hope that you will feel less alone. We are all connected, and I believe that when even one person heals we all heal to some degree.
Much love to you.
Monday, July 12, 2010
Band of Angels
My faith has grown throughout the past few years, especially since having children. Never before though have I felt that I was consistently witness to miracles happening all around me every day.
In less than two weeks, I have met a score of women from around the country and the world who have taken me from a place of desolation and despair to confidence, hope and even joy. These women that I have met through the Road Back Foundation are either patients, mothers, or spouses of people who suffer from scleroderma and rheumatoid arthritis. They have each found their way to the Road Back Foundation and many of them (or their loved ones) have achieved partial or complete remission from their illness.
The main thing about getting your body back into a steady state from rheumatic disease is that it is not a quick fix. It is a slow burning, life long process of approaching and hopefully achieving remission that must be maintained forever.
Perhaps due to the lengthy and unpredictable nature of the process, these amazing people are fully invested - not only in their own situations but also in being there as a true emotional support for each other. Never have I seen such selfless kindness shown by so many in such a short time. I have never had such a powerful and immediate response of love from total strangers who are moved to act on my behalf. I am overwhelmed.
I received a letter late last night from a woman who recovered from scleroderma over the course of five long, difficult, committed years. She had been given only months to live when she found the AP, and was deep into the process of an excruciating death from multiple organ involvement. Through the AP she found a path to healing and she bravely took it. Her patience and commitment to the process, despite setbacks along the way, is awe inspiring.
Even more amazing, she offered to be there for me throughout anything I may face in my own journey in the coming weeks and months, with the understanding that I will pay it forward.
I read her message with tears in my eyes and felt as though I have been placed directly into the core of a comet or a lightening bolt. I have suddenly become part of something vital, life-changing, life-saving. I can't wait to begin to heal so that I too can give this kind of unconditional support and caring to another person just like me, someone scared and overwhelmed that needs a little gentle guidance toward achieving health and remission. I can't wait to pay this forward.
I believe that sometimes we are placed in situations that are difficult to understand (at least at the time) to help us grow in ways we could not possibly have imagined. Two weeks ago I would never have imagined that I might have a serious rheumatic disease, and I certainly would not have fathomed that close at hand were a band of angels waiting to watch over and guide me through the process of finding all that I will need to heal.
My biggest wish right now, other than the yearning that underpins everything (please let me stay alive to nurture and guide my children into adulthood) is that I will be a (living) angel for others too... that I will be able to powerfully give to others this same gift of hope and help. Where there is hope, there is everything.
May this blog bring hope to you. Much love.
In less than two weeks, I have met a score of women from around the country and the world who have taken me from a place of desolation and despair to confidence, hope and even joy. These women that I have met through the Road Back Foundation are either patients, mothers, or spouses of people who suffer from scleroderma and rheumatoid arthritis. They have each found their way to the Road Back Foundation and many of them (or their loved ones) have achieved partial or complete remission from their illness.
The main thing about getting your body back into a steady state from rheumatic disease is that it is not a quick fix. It is a slow burning, life long process of approaching and hopefully achieving remission that must be maintained forever.
Perhaps due to the lengthy and unpredictable nature of the process, these amazing people are fully invested - not only in their own situations but also in being there as a true emotional support for each other. Never have I seen such selfless kindness shown by so many in such a short time. I have never had such a powerful and immediate response of love from total strangers who are moved to act on my behalf. I am overwhelmed.
I received a letter late last night from a woman who recovered from scleroderma over the course of five long, difficult, committed years. She had been given only months to live when she found the AP, and was deep into the process of an excruciating death from multiple organ involvement. Through the AP she found a path to healing and she bravely took it. Her patience and commitment to the process, despite setbacks along the way, is awe inspiring.
Even more amazing, she offered to be there for me throughout anything I may face in my own journey in the coming weeks and months, with the understanding that I will pay it forward.
I read her message with tears in my eyes and felt as though I have been placed directly into the core of a comet or a lightening bolt. I have suddenly become part of something vital, life-changing, life-saving. I can't wait to begin to heal so that I too can give this kind of unconditional support and caring to another person just like me, someone scared and overwhelmed that needs a little gentle guidance toward achieving health and remission. I can't wait to pay this forward.
I believe that sometimes we are placed in situations that are difficult to understand (at least at the time) to help us grow in ways we could not possibly have imagined. Two weeks ago I would never have imagined that I might have a serious rheumatic disease, and I certainly would not have fathomed that close at hand were a band of angels waiting to watch over and guide me through the process of finding all that I will need to heal.
My biggest wish right now, other than the yearning that underpins everything (please let me stay alive to nurture and guide my children into adulthood) is that I will be a (living) angel for others too... that I will be able to powerfully give to others this same gift of hope and help. Where there is hope, there is everything.
May this blog bring hope to you. Much love.
Saturday, July 10, 2010
Connections
One of the most exciting things about this past week for me has been the incredible amount of information I've discovered and been directed toward by my band of angels at the Road Back Foundation. I am reading and learning as quickly as I can. There are more connections than I ever imagined possible between the mycoplasma bacteria and difficulties I have had with my reproductive health for well over a decade.
In fact, so many pieces are falling into place - it is very relieving. All of the "mysteries" I have gone through are now lining up, making sense.
Mycoplasma is related to:
...and there are bound to be many more connections!
I am positive IgG for mycoplasma pneumonaie, which indicates a more distant infection. I will wait to speak with my rheumatologist about the significance of this, but sounds like it isn't likely to be related to either the flu shot I received last October or how sick I got one month later with the actual flu. (Yes, the dreaded H1N1.)
I am also fascinated by the concept that bacteria may be able to be passed to the fetus in utero and the belief by some doctors that this will ultimately be discovered to be the cause of what we currently believe to be "inherited autoimmunity".
Dr. Attila Toth writes, "Along with this shift in perspective will come the realization that some diseases now thought to be genetic in origin are, in fact, carried down through a generational line by pathogens that the fetus picks up in the uterus. Strictly as a matter of conjecture, I think it’s possible that the list might include such currently baffling illnesses as Alzheimer’s disease, Parkinson’s disease, Lou Gehrig’s disease (amyotrophic lateral sclerosis), autism, multiple sclerosis, and schizophrenia. A number of congenital abnormalities may also be connected to intrauterine infections, most notably heart defects, spina bifida, omphalocele, and a number of chromosomal defects including Down’s syndrome."*
Dr. Toth prescribes a mix of low dose antibiotics for extended times to treat infections that hamper fertility, very similar to the antibiotic protocol that I hope to go on shortly for my own rheumatic situation.
All this is so exciting! I can't wait to tell my older brothers that they need not succumb to the fate of our father and grandparents - Alzheimer's may be bacterial, and could possibly be treated with antibiotics. This is definitely worth a lot more research and I feel so incredibly blessed to have started down this path with the AP.
Miracles come in the strangest of packages. Perhaps at the end of this, I will have the joy of giving a lease on life to all of the friends and family I love who may ultimately need the help of an antibiotic protocol to overcome their own health challenges. I can honestly say that for this one moment, far from being upset or depressed, I feel so blessed. Maybe I will be a messenger of healing :-) What an amazing destiny!
Much love and healing to you.
*This quote shared via the kindness of a posting today by another member of the Road Back Foundation
In fact, so many pieces are falling into place - it is very relieving. All of the "mysteries" I have gone through are now lining up, making sense.
Mycoplasma is related to:
- Endometriosis - Experienced severely from 1999 through 2004
- Infections in utero - My DS1 and I were both placed on IV antibiotics for 4 days following his birth due to me spiking a fever during the grueling 60 hour labor
- High risk pregnancies resulting in early c-section - My DD born last year brought me the most challenging pregnancy imaginable, complete with Down Syndrome risk, suspected parvovirus infection, echogenic bowel and wrapping herself 4x in nuchal cord. She wanted to get out of there!
- All 3 of my children have the same strange birthmark on their spines, which I now believe to be tied to a bacterial cause
- Pneumonia - Which I have experienced 3x in my early life, severely
...and there are bound to be many more connections!
I am positive IgG for mycoplasma pneumonaie, which indicates a more distant infection. I will wait to speak with my rheumatologist about the significance of this, but sounds like it isn't likely to be related to either the flu shot I received last October or how sick I got one month later with the actual flu. (Yes, the dreaded H1N1.)
I am also fascinated by the concept that bacteria may be able to be passed to the fetus in utero and the belief by some doctors that this will ultimately be discovered to be the cause of what we currently believe to be "inherited autoimmunity".
Dr. Attila Toth writes, "Along with this shift in perspective will come the realization that some diseases now thought to be genetic in origin are, in fact, carried down through a generational line by pathogens that the fetus picks up in the uterus. Strictly as a matter of conjecture, I think it’s possible that the list might include such currently baffling illnesses as Alzheimer’s disease, Parkinson’s disease, Lou Gehrig’s disease (amyotrophic lateral sclerosis), autism, multiple sclerosis, and schizophrenia. A number of congenital abnormalities may also be connected to intrauterine infections, most notably heart defects, spina bifida, omphalocele, and a number of chromosomal defects including Down’s syndrome."*
Dr. Toth prescribes a mix of low dose antibiotics for extended times to treat infections that hamper fertility, very similar to the antibiotic protocol that I hope to go on shortly for my own rheumatic situation.
All this is so exciting! I can't wait to tell my older brothers that they need not succumb to the fate of our father and grandparents - Alzheimer's may be bacterial, and could possibly be treated with antibiotics. This is definitely worth a lot more research and I feel so incredibly blessed to have started down this path with the AP.
Miracles come in the strangest of packages. Perhaps at the end of this, I will have the joy of giving a lease on life to all of the friends and family I love who may ultimately need the help of an antibiotic protocol to overcome their own health challenges. I can honestly say that for this one moment, far from being upset or depressed, I feel so blessed. Maybe I will be a messenger of healing :-) What an amazing destiny!
Much love and healing to you.
*This quote shared via the kindness of a posting today by another member of the Road Back Foundation
Friday, July 9, 2010
Waiting for the Diagnosis...
The Roadback Foundation Bulletin Board has been an incredible gift to me within the last week. Only one week ago I was told that I might have scleroderma, after my modified barium swallow and cine-esophogram showed esophageal dysmotility with an apparent absence of correct wave function.
Then, only a few days later, I found the rash on my back that could be my first skin involvement. It seems like things are moving very quickly... but I've had signs for a few years now that my body wasn't at 100%. The blessing is that with early treatment I feel there is such a strong chance that I can live a long and productive and healthy life.
In only one week, thanks to the amazing volunteers and members of RoadBack, I have located both an experienced AP (Antibiotic Protocol) doctor and a Lyme Doctor. I have been given a visceral sense of hope that I really can heal from even this. I've ordered my Lyme test kit and I'll get the results of my ANA and Scleroderma antibody tests next week. It's ridiculous that I am so nervous about those results, when clearly they are just a number and have no effect whatsoever upon my actual physical wellness.
Today, the three books I ordered from Amazon arrived. They are "The New Arthritis Breakthrough" by Henry Scammell, "Scleroderma: The Proven Therapy" by Henry Scammell and "Scleroderma: The First Year" by Karen Gottesman. I've just put the kids down to nap and plan to spend the afternoon reading through them.
In the long term, especially once I've started treatment, I really don't want my life to revolve around scleroderma or MCTD. I hope that one year from now, these things will just be one small facet of who I am... even if I still have to blend my food for the rest of my life. There is so much wonder and beauty in the world, I can't wait to get through this so I can get back out there and experience it with my family.
Much love.
Then, only a few days later, I found the rash on my back that could be my first skin involvement. It seems like things are moving very quickly... but I've had signs for a few years now that my body wasn't at 100%. The blessing is that with early treatment I feel there is such a strong chance that I can live a long and productive and healthy life.
In only one week, thanks to the amazing volunteers and members of RoadBack, I have located both an experienced AP (Antibiotic Protocol) doctor and a Lyme Doctor. I have been given a visceral sense of hope that I really can heal from even this. I've ordered my Lyme test kit and I'll get the results of my ANA and Scleroderma antibody tests next week. It's ridiculous that I am so nervous about those results, when clearly they are just a number and have no effect whatsoever upon my actual physical wellness.
Today, the three books I ordered from Amazon arrived. They are "The New Arthritis Breakthrough" by Henry Scammell, "Scleroderma: The Proven Therapy" by Henry Scammell and "Scleroderma: The First Year" by Karen Gottesman. I've just put the kids down to nap and plan to spend the afternoon reading through them.
In the long term, especially once I've started treatment, I really don't want my life to revolve around scleroderma or MCTD. I hope that one year from now, these things will just be one small facet of who I am... even if I still have to blend my food for the rest of my life. There is so much wonder and beauty in the world, I can't wait to get through this so I can get back out there and experience it with my family.
Much love.
Wednesday, July 7, 2010
It takes a village to heal a girl...
So many people have come to my assistance in such a short time, it fills my heart. From the RoadBack Foundation bulletin board I have received letters and messages from at least six women who have been in my exact situation and recovered at least partially, and all of them are so encouraging.
My naturopath has risen to the fore and he was the first person to think to check my mycoplasma levels.
The wonderful woman at Scripps connected me to her equally caring esophageal doctor specialist in Davis, CA... both of them have done everything in their power to get me the best treatment as quickly as possible.
My family has called and written from all over the world to offer support.
My husband has been trying hard to get his head around what is happening and he made me a very thoughtful blended dinner last night, and spent a long time researching rheumatic disease.
My younger son tells me about every five minutes, "Mommy, I love you."
And I have begun a new regimen of Vitamin D3, fish oils, Moducare, aloe vera juice and hopefully a lot less stress. Going to get tested for Lyme Disease exposure, and really looking forward to finally getting on the antibiotic protocol once I have been properly assessed - hopefully no later than September.
I am trying to breathe. I don't understand why I wake full of fear each morning, even though I go to sleep so peacefully. I think it must be a biochemical response to what is happening in my body.
Need to get off the computer now and give my kids 100% attention - going to make the best of every second we have together.
Thank you for reading and much love.
My naturopath has risen to the fore and he was the first person to think to check my mycoplasma levels.
The wonderful woman at Scripps connected me to her equally caring esophageal doctor specialist in Davis, CA... both of them have done everything in their power to get me the best treatment as quickly as possible.
My family has called and written from all over the world to offer support.
My husband has been trying hard to get his head around what is happening and he made me a very thoughtful blended dinner last night, and spent a long time researching rheumatic disease.
My younger son tells me about every five minutes, "Mommy, I love you."
And I have begun a new regimen of Vitamin D3, fish oils, Moducare, aloe vera juice and hopefully a lot less stress. Going to get tested for Lyme Disease exposure, and really looking forward to finally getting on the antibiotic protocol once I have been properly assessed - hopefully no later than September.
I am trying to breathe. I don't understand why I wake full of fear each morning, even though I go to sleep so peacefully. I think it must be a biochemical response to what is happening in my body.
Need to get off the computer now and give my kids 100% attention - going to make the best of every second we have together.
Thank you for reading and much love.
Tuesday, July 6, 2010
Mycoplasma Confirmed
First of all, I am the luckiest woman in the world. I have now had my worst fears come true and I realize that I have the strength to withstand all of them. Today I received bloodwork back showing positive IgM for Mycoplasma Bacteria, plus I found a patch of scaly skin on my back that has just thickened and gone a little numb. With this plus the Raynaud's and Esophageal involvement... it's pretty clear that this is not only rheumatic, it's likely Scleroderma. Should get the antibody tests for that done next week... bloodwork on the way.
I wept a little bit, but then I walked to the beach and dug my hand deep into the sand at the edge of the water. Some day I will be part of that sand, but today is not that day. I looked out at the horizon toward the land where I grew up and I swore that I will never be scared of anything again in my life. Ever. No matter what.
So, it's time to move forward.
I am excited about this blog because it is going to be my vehicle for publicizing to the world the amazing research that has been done relating autoimmune conditions such as the one I am facing (scleroderma) to infection with the mycoplasma bacteria. I don't know why more doctors aren't ardently promoting antibiotics as a method of putting autoimmune diseases into remission, because the evidence is out there (all the way back to the 1940s) and it is very clear.
In this recent study done by the University of Massachusetts Medical School in 2004, it was clearly demonstrated that when infecting mice with the mycoplasma bacteria the scientists were able to create a scleroderma-like condition which can be remediated with antibiotics. As it says in the article, "We previously showed that the major targets of autoantibodies in scleroderma are centrosomes, organelles involved in mitotic spindle organization. Here we show that centrosome autoantibodies are induced in mice by mycoplasma infection... Antibiotic treatment of mice prevents autoantibody development."
I feel so blessed with this information, and saddened for the millions of families who have lost a member to autoimmune illness and were never told once that the use of low dose antibiotics might just have saved them. The rheumatologist that I am going to see in Riverside states directly on his website that he has successfully treated 70% of the patients who have come to him with scleroderma, using the antibiotic protocol.
I will be writing more about the antibiotic protocol soon. I have ordered a few seminal works about this subject off of Amazon.Com and will write an entire post about the books once I have read them.
For now I am sending much love to anyone reading this post - whether a friend, family member or someone like me who is dealing with scleroderma and looking for information. You may be feeling scared, but I have hope for you. There is a real treatment for this thing and I am going to take you along my journey to find it.
I received such an uplifting email from a woman who has had scleroderma for 6 years and is in complete remission. She told me about the vacation she is leaving for today with her husband and sons, and how strong and vital she feels. "You would never know that I have scleroderma unless you closely examined the capillaries of my nail beds" she announced. She says she personally knows 30 other people all on the antibiotic protocol that are ALL improving and many going into complete remission.
This stuff ain't rocket science! It also isn't new-agey or alternative. It's just good medicine, and I think that with the research currently underway, soon autoimmunity is going to be something we deal with just like a UTI.
Much love to you all, wherever you are.
I wept a little bit, but then I walked to the beach and dug my hand deep into the sand at the edge of the water. Some day I will be part of that sand, but today is not that day. I looked out at the horizon toward the land where I grew up and I swore that I will never be scared of anything again in my life. Ever. No matter what.
So, it's time to move forward.
I am excited about this blog because it is going to be my vehicle for publicizing to the world the amazing research that has been done relating autoimmune conditions such as the one I am facing (scleroderma) to infection with the mycoplasma bacteria. I don't know why more doctors aren't ardently promoting antibiotics as a method of putting autoimmune diseases into remission, because the evidence is out there (all the way back to the 1940s) and it is very clear.
In this recent study done by the University of Massachusetts Medical School in 2004, it was clearly demonstrated that when infecting mice with the mycoplasma bacteria the scientists were able to create a scleroderma-like condition which can be remediated with antibiotics. As it says in the article, "We previously showed that the major targets of autoantibodies in scleroderma are centrosomes, organelles involved in mitotic spindle organization. Here we show that centrosome autoantibodies are induced in mice by mycoplasma infection... Antibiotic treatment of mice prevents autoantibody development."
I feel so blessed with this information, and saddened for the millions of families who have lost a member to autoimmune illness and were never told once that the use of low dose antibiotics might just have saved them. The rheumatologist that I am going to see in Riverside states directly on his website that he has successfully treated 70% of the patients who have come to him with scleroderma, using the antibiotic protocol.
I will be writing more about the antibiotic protocol soon. I have ordered a few seminal works about this subject off of Amazon.Com and will write an entire post about the books once I have read them.
For now I am sending much love to anyone reading this post - whether a friend, family member or someone like me who is dealing with scleroderma and looking for information. You may be feeling scared, but I have hope for you. There is a real treatment for this thing and I am going to take you along my journey to find it.
I received such an uplifting email from a woman who has had scleroderma for 6 years and is in complete remission. She told me about the vacation she is leaving for today with her husband and sons, and how strong and vital she feels. "You would never know that I have scleroderma unless you closely examined the capillaries of my nail beds" she announced. She says she personally knows 30 other people all on the antibiotic protocol that are ALL improving and many going into complete remission.
This stuff ain't rocket science! It also isn't new-agey or alternative. It's just good medicine, and I think that with the research currently underway, soon autoimmunity is going to be something we deal with just like a UTI.
Much love to you all, wherever you are.
Monday, July 5, 2010
Crisis = Opportunity
The Beginning
My name is Andrea and I have started this blog for several reasons. For about nine months I have been dealing with a bunch of weird symptoms that included tingling in both legs, electric buzzes or pulsations in my head, intermittent nausea, exhaustion, brain fog, unexplained weight loss and intermittent chest pain that felt like a heart attack but turned out to be GI related. I've been to over ten doctors in the last seven months and for a while it was looking like all of my problems were related to the over-production of histamine. That may still be a contributing factor, we'll see.
Then a few weeks ago I lost the ability to swallow normally. It started to feel like food was getting stuck in my throat and after that sensation lasted for four straight days, I got worried that there was actually something stuck in there.
Everyone told me that it would be okay, it was just acid reflux or some kind of esophagitis. I spent a long time trying to find a GI or ENT that could perform a transnasal esophagoscopy (TNE) on me to figure out what was wrong without needing to use sedation, since I react badly to so many medications and chemicals.
The ENT I saw referred me for a modified barium swallow with cine-esophogram, and I feel so blessed that he did. I was able to arrange one for the very following day thanks to an absolutely amazing speech-language pathologist working for one of the best hospitals in my town. She moved heaven and earth around to squeeze me in before her summer vacation. I will never be able to thank her enough.
As it turned out, the results really weren't what we were expecting. Thankfully, there was no sign whatsoever of cancer or a stricture. That is certainly a huge relief.
Unfortunately, there was no sign of esophagitis either. Rather, what the radiologist found was a "lazy esophagus". As he described it to me, the wave function was simply not working correctly. He asked if I had been diagnosed with any other problems and when I told him that I do suffer from both Hashimoto's Thyroiditis and also Interstitial Cystitis/Vulvadynia, his eyebrows shot up and his eyes widened. He nodded. Then he said, "I think what is happening with your esophagus is directly related to your autoimmune conditions." Then he asked me if I often get a funny feeling in my mouth after eating something, and if it is ever coupled with tingling or cramping in my hands.
He was pointing toward Scleroderma.
I am a 34 year old woman, which happens to be the exact demographic that scleroderma usually affects. It often goes hand in hand with hypothyroidism, and its presenting symptom can often be esophageal dysmotility.
When I looked up scleroderma on the internet, what I really wanted to know was, what is the life span or prognosis.
I have three children under the age of five. My greatest fear is leaving them and that they will not have me as their mother to help them navigate childhood and their teen years. They mean everything to me, along with my husband.
When you read about scleroderma online, things look pretty bleak. Apparently there are three different kinds - limited, diffuse and sine. Some people get only skin involvement which progresses very slowly over many years, and they generally have an excellent prognosis in terms of life span.
Others have a fast moving, aggressive form of scleroderma that spreads quickly across many body surfaces and affects internal organs.
The limited scleroderma (formerly CREST) stands for calcinosis, Raynaud's Phenomenon, Esophageal involvement, Sclerodactyly (a tapering deformity of fingers) and Telangiectasia (small red spots on face or inside mouth).
Scleroderma Sine Scleroderma is where you have internal organ involvement but no obvious skin problems. This happens in up to 5% of patients.
The scariest thing about learning all this information for me has been trying to determine what kind of scleroderma I am presenting with, if that is indeed what I have. I have suffered for years from mild Raynaud's syndrome and GI complaints, never guessing for one second that it could be part of a greater illness. At the present time I have zero skin involvement and I know that my kidneys and heart are in great shape. So, I will need to get my lungs checked and then perhaps I can take a deep breath. CREST traditionally has a much better prognosis than diffuse, although anything can happen to anyone!
The next few months are going to be full of taking steps to get an actual diagnosis, hopefully get my esophagus working again, and trying out the Antibiotic Protocol. I am very excited and hopeful about this, and grateful for the advice and input from Roadback Foundation volunteers. Already I have found two doctors nearby who are willing to treat me with antibiotics and who have both had good success with the protocol. Reading all of the remission stories for Rheumatoid Arthritis and Scleroderma has given me so much hope. This protocol works for so many people, even people who have been much sicker than me for many years. I have a lot of confidence that it is going to work for me too. I am so thankful.
I look at this blog as a way to chronicle my healing journey and raise awareness about alternative methods of healing. Although many doctors will tell you that the AP does not work for scleroderma, I have read hundreds of anecdotal reports now from real people (with pictures, names, email addresses, etc.) who state definitively that it does work. I look forward to being one of those people, and I hope that some day my blog will give hope to another newly diagnosed person terrified by what they are learning and facing.
Much love and healing to you.
Then a few weeks ago I lost the ability to swallow normally. It started to feel like food was getting stuck in my throat and after that sensation lasted for four straight days, I got worried that there was actually something stuck in there.
Everyone told me that it would be okay, it was just acid reflux or some kind of esophagitis. I spent a long time trying to find a GI or ENT that could perform a transnasal esophagoscopy (TNE) on me to figure out what was wrong without needing to use sedation, since I react badly to so many medications and chemicals.
The ENT I saw referred me for a modified barium swallow with cine-esophogram, and I feel so blessed that he did. I was able to arrange one for the very following day thanks to an absolutely amazing speech-language pathologist working for one of the best hospitals in my town. She moved heaven and earth around to squeeze me in before her summer vacation. I will never be able to thank her enough.
As it turned out, the results really weren't what we were expecting. Thankfully, there was no sign whatsoever of cancer or a stricture. That is certainly a huge relief.
Unfortunately, there was no sign of esophagitis either. Rather, what the radiologist found was a "lazy esophagus". As he described it to me, the wave function was simply not working correctly. He asked if I had been diagnosed with any other problems and when I told him that I do suffer from both Hashimoto's Thyroiditis and also Interstitial Cystitis/Vulvadynia, his eyebrows shot up and his eyes widened. He nodded. Then he said, "I think what is happening with your esophagus is directly related to your autoimmune conditions." Then he asked me if I often get a funny feeling in my mouth after eating something, and if it is ever coupled with tingling or cramping in my hands.
He was pointing toward Scleroderma.
I am a 34 year old woman, which happens to be the exact demographic that scleroderma usually affects. It often goes hand in hand with hypothyroidism, and its presenting symptom can often be esophageal dysmotility.
When I looked up scleroderma on the internet, what I really wanted to know was, what is the life span or prognosis.
I have three children under the age of five. My greatest fear is leaving them and that they will not have me as their mother to help them navigate childhood and their teen years. They mean everything to me, along with my husband.
When you read about scleroderma online, things look pretty bleak. Apparently there are three different kinds - limited, diffuse and sine. Some people get only skin involvement which progresses very slowly over many years, and they generally have an excellent prognosis in terms of life span.
Others have a fast moving, aggressive form of scleroderma that spreads quickly across many body surfaces and affects internal organs.
The limited scleroderma (formerly CREST) stands for calcinosis, Raynaud's Phenomenon, Esophageal involvement, Sclerodactyly (a tapering deformity of fingers) and Telangiectasia (small red spots on face or inside mouth).
Scleroderma Sine Scleroderma is where you have internal organ involvement but no obvious skin problems. This happens in up to 5% of patients.
The scariest thing about learning all this information for me has been trying to determine what kind of scleroderma I am presenting with, if that is indeed what I have. I have suffered for years from mild Raynaud's syndrome and GI complaints, never guessing for one second that it could be part of a greater illness. At the present time I have zero skin involvement and I know that my kidneys and heart are in great shape. So, I will need to get my lungs checked and then perhaps I can take a deep breath. CREST traditionally has a much better prognosis than diffuse, although anything can happen to anyone!
The next few months are going to be full of taking steps to get an actual diagnosis, hopefully get my esophagus working again, and trying out the Antibiotic Protocol. I am very excited and hopeful about this, and grateful for the advice and input from Roadback Foundation volunteers. Already I have found two doctors nearby who are willing to treat me with antibiotics and who have both had good success with the protocol. Reading all of the remission stories for Rheumatoid Arthritis and Scleroderma has given me so much hope. This protocol works for so many people, even people who have been much sicker than me for many years. I have a lot of confidence that it is going to work for me too. I am so thankful.
I look at this blog as a way to chronicle my healing journey and raise awareness about alternative methods of healing. Although many doctors will tell you that the AP does not work for scleroderma, I have read hundreds of anecdotal reports now from real people (with pictures, names, email addresses, etc.) who state definitively that it does work. I look forward to being one of those people, and I hope that some day my blog will give hope to another newly diagnosed person terrified by what they are learning and facing.
Much love and healing to you.
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