LDN Miracle

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.

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.

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:

• 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.

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.

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!

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!

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 :-)