My Remission and How I Did It

First, because people were reporting that they had a lessening of their brainfog by using Ginkgo Biloba, I started with that. I had the same good results. However, I found it to be very dose dependent - if I forgot to take it, the brainfog returned immediately. However, when I increased CoQ10 to over 150mg a daily, the brainfog lifted permanently and I no longer needed Gingko. Additionally, with CoQ10, I can run out of it for a day or so and the brainfog doesn't seem to return for several days.

Then I started sorting the messages concerning reports of improvements from various symptoms and found they fell into some easily understood groups. They were:

HRT based only on one's low basal temperature was promoted heavily by the then Dr. Denis Wilson of Northcentral Florida. He can no longer practice medicine (and as of 4/98 is no longer listed as a MD at the FL Dept of Professional Regulation web site) since he was disciplined by the Florida State Department of Professional Regulation after someone in his care died from being prescribed too much thyroid medication. (This is a matter of public record and can be found by starting at the Florida Board of Professional Regulation site.) (Of note, of anything within my web site, this disclosure of public information initially generated the most vile hate mail imaginable.)

Dr. John Lowe, a practicing chiropractic, had founded an organization that was working along similar lines by giving HRT with the assumption that all our symptoms were secondary to hypometabolism.

Messages I had saved seemed to indicate that one or two people were doing reasonably well on these therapies. But, I've not heard any of the long-promised cures coming forward. However, some other folks have had thyroid problems develop before, during, or after their onset of FMS and they have attested that thyroid HRT did nothing for or worsened their FMS/CFS.

My former doctor refused to completely test my thyroid function, but my new doctor found that my TSH and T4 are normal and my T3 was low-normal. Additionally, when my thyroid gland enlarged for a couple of months, I had a normal thyroid scan. (It shrunk back to normal size when I stopped my kelp supplementation.)

However, like I did, I think that anyone who wishes to try this treatment should learn everything about the drug and give it a fair trial. An important point: if you're going to try this therapy, do not take the liquid cough syrup which has Guaifenesin in it - along with all that alcohol and sugar, you'd be drunk from the dosages needed! And buying those syrups would end up being much more expensive than generic Guaifenesin pills.

In any case, since I didn't have a knowledgeable doctor at the time, adding OTC nutritional supplements was something I could do for myself!

I got myself a good book on supplements ("Prescription for Nutritional Healing" by the Drs. Balch), looked at the amino acids, vitamins, and minerals that seemed to have some bearing on our biochemical abnormalities, i.e., my hair loss, weak fingernails, and my unending fungal skin infection, and started with them. When I didn't get any significant results, I began looking into contributing factors for non-absorbency of foods and supplements and decided that perhaps there was a gut problem. (You can read more about that at my Leaky Gut Syndrome link.) I then expanded my list of supplements to discourage yeast overgrowth and to promote liver and gut health. Within only two weeks on Caprylic Acid, I started getting some consistent results of lessening pain, increased feelings of well-being, and decided I was on the best path for me.

I've changed my diet entirely. I eat mainly fish and avoid sugars and starches. As a nurse, I must say that this is not necessarily a healthy diet nor endorsed by the ADA. When I began experimenting with it in January '97, I expected it to be a temporary solution that I wouldn't need for very long. High protein with limited vegetables and low carbohydrates is contradictory to every nutritional experts' recommendations. However, over the months, I found that carbohydrates increased my back pain. Bread = pain. Pizza = pain. Couscous = pain. Spaghetti = pain. Rice pilaf = pain. (You get the picture.) To try to make up for the absence of these vital foods, I feel that all the supplements I'm taking are helpful.

In the early stages of being on what I now call a modified Atkin's diet, I used Keto-diasticks to make sure I hadn't placed myself in a very dangerous situation called ketoacidosis (it never happened) and, actually, all my blood work is the most normal it's ever been. Additionally, my cholesterol dropped from ~390 to ~220.

I attended the First International New York FM Conference May 22-25, 1998, and it was delightful to hear from many of the presenters that I had been following their recommended diets.

It was also delightful to have validation for most of the other things I had been doing, especially from Jacob Teitelbaum, MD (for the nutritional supplementation) and Benjamin Natelson, MD (for using Neurontin in this disease). Please see the Conference Page for those transcriptions.

Some CFS/FMS doctors recommend the Zone Diet, but I found it to be too complicated and apparently had too many carbohydrates grams for me. I've tried using the 40-30-30 Zone Diet powder (to help increase my protein, fats, and carbohydrates) but had to stop it because it added some weight without adding any benefits. If I lived a normal active life, I'm sure the carbohydrates wouldn't have added weight. When we find ourselves living essentially a sedentary life (through no fault or desire of ourselves), eating the same amount of food and their portions can only lead to increased weight. Add in those medications that makes us want to eat the refrigerator, it is not surprising to find that we've added 50 to 100 pounds to our normal weight. There are sites on the web that can help you measure the amount of calories one needs based on our activity level. The one that I found (sorry, I didn't bookmark it) estimated that eating more than 1200 calories a day would only cause me to gain weight. When I was even more bed-ridden, I only needed 900 calories a day. Trying to get my essential nutrients within those calorie limits required severe changes to be made. Since we don't metabolize carbohydrates normally anyway, they were the first to go.

If I don't get enough protein daily, then taking these medications is for naught, but if I take too much, it just adds weight. I added high protein powders to ensure that I was getting adequate levels of protein since, at the time, I didn't have the stamina to prepare healthy meals. I also finally stopped all intake of aspartame (Equal) in November 1997 because all our experts recommended it. Everyday, I drink 3 quarts of very weak green tea (2 regular-sized tea bags in 3 quarts of filtered water with less than 5 minutes of steeping time) with a quarter cup of turbinado sugar. To learn some more about the various supplements and how important they are to us, follow this link to the page on our Biochemical Abnormalities.

On June 23, 1997, after four months of the intense experimentation with diet and supplements, my new doctor confirmed that I no longer had tender or trigger points, no irritable bowel syndrome, no migraines, less brainfog, no fungal skin infections, no bruising, no mottled skin, no tinnitus, no fibrocystic breast disease, no chemical sensitivities, and no reflux esophagitis. Additionally, my hair was growing back nicely and had long given up my Rogaine and, for the first time since '89, I'd been able to give up fake fingernails because mine were now healthy, strong, and without ridges. And I haven't had a FMS flare since sometime in February 1997. I can assure you that my FMS was as severe as anyone's and the diagnosis had been given me first in 1989 by two doctors and in 1991 by a third.

In September of '97, I stopped all nutritional supplements for approximately a month to make sure they weren't contributing to my lack of energy. After two weeks, brainfog returned - swift and sure - as did some of the other FM symptoms. I resumed all the nutritional supplements because only they seem to keep me FMS/MPS-free. That's why, even after four years of relief of my all of my FMS and MPS symptoms, I still call it a remission rather than a cure.

I still had sleep dysfunction. On June 30, 1997, I began taking 5HTP - the precursor to serotonin. As my immune system had been boosted by my other supplements, I found that adding the 5HTP caused me Serotonin Syndrome-like problems and quickly stopped it. I've now changed from the Ambien & Klonopin combination that I used for 2 years to the far more reliable Restoril 30mg.

From 1995 to until the Spring of 1998, I had less than 25% of the energy I used to have. My new doctor has found that I have a severe Immunoglobulin Subclass 2 deficiency and, in June 1997, I began a series of IV Gamma Globulin infusions to help treat that. The first two infusions were wonderful. I had energy and fell asleep without any sleep medication! After that, they produced no significant benefits and we stopped them. (I had another series of three infusions in March, 1998 that produced no discernible results. My new doctor has also placed me on low-dose Ritalin and it has been helpful for jump-starting my brain and helpful in decreasing brainfog. (Contrary to popular notion, at the low dose prescribed, it does nothing for my physical energy.)

In February '98, I visited an Immunologist to get another opinion on how best to treat my immune deficiency. I gave him the result of my subclass tests. After a fairly thorough exam and history-taking, he determined that I didn't "look like anyone with an immune deficiency." Frequently throughout our hour, he asked about my mental state. My mistake was being honest. Few of us haven't considered suicide at one time or another and I mentioned that. He picked up on that (of course, he should have) and then spent a lot of time asking when I had therapy and what kind. I've had therapy before and during my illness and had also seen a psychopharmacolgist in '95. That appeased the doc somewhat. Then I told him of the studies that showed we are not clinically depressed, but are depressed secondary to the illness. I think he finally settled down when I told him that if he could cure me, I'd go back to work. Anyway, he ordered some tests and the first one that came back showed I now had a new IgA immune deficiency. So much for not looking like I have an immune deficiency!

I've had one IV Myers Cocktail that didn't produce energy for me but did temporarily clear up all my skin lesions on my fingers and dramatically lessened the bumpy lesions inside my mouth - probably as a result of some immune boosting.

After a short run of Prednisone which gave me complete relief of pain and had increased my energy dramatically, my doctor started me on methotrexate to help modulate my upregulated immune system (which is probably why the Prednisone worked since, at that time, I had no known inflammatory disease). It was anticipated that the methotrexate would lessen my cytokines (particularly Interleukin-1) and, thereby, decrease my pain. We stopped the methotrexate after a couple of months because we "tipped" my immune system too far and I suddenly started having continual reactivations of my EBV and HSV and a problem tooth re-infected three times.

I completed a run of "pulse" therapy of IV Solu-Medrol 125mg per week in December '97. Although it's a corticosteroid, because it's given intravenously, it has fewer nasty side effects than Prednisone. It had been prescribed because of the polyarthralgia and/or elevated cytokines that seemed to be causing the majority of my pain - and it was very successful. On this regimen, I no longer needed Ambien to get to sleep, usually sleeping 10 very restful hours each night, and it dramatically lessened the need for analgesics and muscle relaxants. After taking a month off from this medication, I was to receive 3 more doses of IV Solu-Medrol 125mg every 7-10 days, but it again was too much for my immune system and the same tooth again re-infected for the fourth time.

In January '98, I had a series of thoracic and cervical X-rays to rule out any pathological reason for my spine and neck pain. They found previously-undiagnosed scoliosis of the spine, arthritis, bone spurs, and osteoporotic changes in my neck. (I don't have the Arnold-Chiari Malformation.) These pains were always "there," but didn't become evident until my tender and trigger points were eliminated. Now I know that those pains were not FMS-related. Since these pains might be the type that might respond to Neurontin, in late February '98, I started it at 100mg three times a day. Amazingly, the spinal and neck pains were eliminated! I slowly "ramped up" the dosage to 3600mg a day and, at this dose, I got some increased energy (FINALLY SOMETHING!). After the NY FM Conference (mentioned above), I was prescribed an increase to 4800mg a day, but soon found that I didn't need that high of a dose and returned to the 3600mg daily dose until February 2000 when I found I no longer needed it at all. (!!)

I don't know whether I am one of the Neurontin success stories or not, but the fact is that after two years of taking it, I suffer only with some spinal pain that is managed with Oxycontin 20mg every other day and an occasional Baclofen 10mg.

I have been meeting and hearing of hundreds of people who are having excellent success with Neurontin. I've started a Neurontin email group for people who are using Neurontin. We have provided each other with a lot of support and help with the expected and transitory side-effects. The drug is not for everyone and is certainly not a cure. If you are using Neurontin, or want to use it, contact the List Administrator at: neurontin-l-request@maelstrom.stjohns.edu to join the Neurontin Email List.

Are you having bladder problems? Please don't "assume" that this is a "normal" CFS/FM symptom without thorough testing to rule out bladder or kidney infections. I deluded myself and spent three months with frequency, bladder, and kidney pain before I finally had it checked out. Instead of an "irritable bladder," I had a chronic bladder and kidney infection that was quickly cured with the proper antibiotic. Please check yours out!

The following lists are a lot of pills and, initially, were very expensive. I've divided the list into two tables; the first contains the supplements I found to be essential to my remission, and the second contains those that I take for other complications of this disease.

Other than the few prescription drugs, they are all available over-the-counter in drug or health food stores. (I refuse to buy from Multi-Level Marketing schemes.)
No one pill is going to work by itself. This disease is far too complex for, say, just Magnesium and Malic Acid to work by itself in the long run. Taking a multi-vitamin tablet a day isn't going to make a dent on this disease! And nothing is going to work if one's gut and/or liver isn't working correctly. And, please don't forget to address those perpetuating factors!

On July 2, 1998, I received my compounded amino acids supplement that is based on my blood levels. Since that blood test, I no longer have to guess which amino acids are low. The compound base is comprised of the correct percentages of the essential amino acids one should intake daily plus additional amounts of those which are deficient.

The testing is somewhat expensive and, for that reason, I'm not mentioning the name of the laboratory. The compounded product should have allowed me to stop all the amino acid pills listed below but I've found I've had to resume many of them, probably because I was tested only one week off of all my supplements (it should have been after a two-week wash out but I couldn't stand the pain that would have ensued). The monthly cost of the compound is about the same as maintaining the full complement of those pills.

I'm quite pleased with this development. It's what I've wanted from the beginning, but my Good Doc had resisted it.

In March, 1999, I started a run of Biaxin for a sinus infection. Within three days, my hands, elbows, knees, ankles, hips, and shoulder joint pains were eliminated! After two weeks, since it wasn't working on my sinuses, I asked my doctor for a Zithromycin prescription to see if it would work better for my sinuses and to test whether the Biaxin effects were valid.
Within three days of the Z-pack, all my joint pains returned! I finished up the Z-pak anyway and returned to the Biaxin and my joint pains were again relieved.
I continue with the Biaxin to this day since several wash-out testings proved it remained the most beneficial treatment for my supposed "arthritic" pains.

At this point, we don't know whether it's treating Lyme's Disease, mycoplasma, the Stealth Virus, or syphilis, but I no longer care!

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Since July 22, 2001