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.
Showing posts with label scleroderma. Show all posts
Showing posts with label scleroderma. Show all posts
Saturday, October 30, 2010
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.
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!
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
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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