Fibro Fatigue

I finished a one-year course of ValCyte in October. My provider thought it was enough time, and retested my HHV-6 and EBV antibodies. The test showed I indeed have no current infection of either. So the ValCyte probably worked to rid any such viruses. But--I'm as fibromyalgic as ever. A friend just gave me a new book. The Bible Cure for Chronic Fatigue and Fibromyalgia by Don Colbert, M.D. The doctor seems to agree with my provider on most issues, including naming candidiasis as a major culprit or cause. Indeed, my systemic candida symptoms are worsening. Am using antifungal cream constantly on my swollen, red, itchy, burning feet. The swelling is not just my toes now, but has moved into the pads of my feet. Even in freezing winter temperatures (unseasonably cold for So. Oregon), I am sitting here barefoot as I write. A year ago I would have been donning socks and quilted slippers all day, and kept them on in bed at night. Go figure. After reading the book and sharing its conten...

Here is my present medication and supplement regimen. A.M.: ValCyte NaturThyroid 1.25 grains CandiZyme Multivitamin Iron 120 mg Sabella (antidepressant SNRI) Vit D D-Ribose and Ambrotose Acidophilus (or yogurt) Downed with milk or smoothie P.M.: just before bed ValCyte SeriPhos (reduces cortisol level) - 4 caps Sabella progesterone cream .8 cc cyclobenzaprine 3-4 mg Ambien CR 6.5 mg If I wake before 4am I take another Ambien CR 6.5 mg to get 2-3 more hours of sleep. P.S. June 2022 I take none of these now, and the only supps I take are: calcium and collagen powder and salt. I also take dessicated beef organ capsules. Beef is the best all-around nutrient dense food on the planet. For sleep I am weaning off Flexeril and Lyrica, and taking magnesium powder and ER melatonin. <script async src="https://pagead2.googlesyndication.com/pagead/js/adsbygoogle.js?client=ca-pub-7412919396529588"      crossorigin="anonymous"></script>

WOW! I actually made it to Hawaii for a week and back. See more about my trip at my other blog . I actually did better in Hawaii than I have been doing in a long time! Why? It wouldn't have been the heat; the temps in G.P. have actually been higher this summer than it was in HI. (My feet still swelled alot from the heat and I had to keep ice and antifungals on my toes,). I think the main reasons were: 1. I had access to a pool at the hotel and I worked out in the water twice a day (as opposed to my usual 3x a week); 2. I had a good night's sleep every night, no jet lag (who knows why?) 3. my husband was available and very willing to do all the lifting and hauling baggage (bless him); 4. I used wheelchair assistance at all the airport connections. Other factors may include the higher oxygen levels and humidity, the stress-free schedule, and the minimal road travel involved. I do fine on planes; in fact I enjoy riding on them. But I think reasons 1 and 2 are highest on the list. ...

So I saw my N.P. last Thursday and she has taken a fairly new tack. She used to favor alternative therapies, but after being reviewed by the state authorities, I think she's gotten gun-shy and is following the mainstream protocols. She wanted me to try one of the three "new" drugs now FDA-approved for fibromyalgia. All of them, from what I can tell, are not much different from what I've tried through the years. They are all called anti-depressants "but not prescribed to me for depression" (I've heard this before!). The older drugs were called SSRI (Selective Serotonin Reuptake Inhibitors). The new one I'm on, Sabella, is an SNRI (Serotonin and Norepinephrin Reuptake Inhibitor. This is based on the theory that FMS is caused by a chemical imbalance in the Central Nervous System, or brain. She said it increases dopamine in the brain. I am skeptical that it will help, but I'll give it a month. I have to titrate to the therapeutic level, and if I go...

Book Review: Waiting For A Miracle by Jan Markell A few years back I read a book on pain that made me mad. It was written by a rheumatologist who claimed to be a Christian, and who proceeded to blame his incompetence at treating fibromyalgics on--you guessed it--his patients. Rheumatologists, in my experience, are notoriously ill-equipped to deal with non-inflammatory pain. This doctor assumed his FMS/CFS patients' pain was in their heads, and he had resorted to using pseudopsychological counseling sessions on them rather than admitting his failure and referring them to someone else. I pitied his poor patients! As for his Christianity, it was syncretistic at best. His most egregrious error was in claiming that pain was a subjective experience, which flies in the face of common-sense medical practice. I was incensed. I have been searching for a good book that would treat the spiritual side of chronic illness properly--without sinking into blame-shifting, self pity or ranting--eve...

Boy has this been a difficult week. My back muscles have been very weak and spasming since Tuesday and I have spent most of the time in bed. Lying on the foam mattress causes its own sets of problems—my skin itches and burns until I don’t want anything touching me, etc. If I don’t keep my skin cool the redness breaks out into a rash. So I have spent several hours lying under the ceiling fan… I know it’s caused by yeast/fungal overgrowth.  It all started Tuesday when I reached up to hang a towel on the shower door. My back suddenly had a familiar twinge in my left side, and I headed for the bed. I felt frozen in pain. Within minutes I was shaking convulsively with a feeling of cold and needed a heat pack to stop. (Is that shock? It’s happened to me before; I think it may be an adrenalin reaction.) There I lay, face down on the mattress, unable to move. At least I had dried myself off. The Lord has been gracious to provide my husband within calling range two of the three times th...

Still not much change in my symptoms, but I have had another antibody test and it appears that the titers are dropping on both HHV-6 and EBV. In fact the HHV-6 is now considered a past infection! It is perhaps a sign that the Valcyte may be working. My provider has offered to keep me on the Valcyte for another six months. In the meantime, she also found I have spikes in cortisol during the night and morning, and is treating that with herbal/natural supplements. I think it has helped my sleep and lessened my nighttime hot flashes, along with the progesterone cream. The waiting game continues. My muscles around the shoulder blades are weak again, making it very easy to pull and overuse them and leave me non-functional, on my back, for a day at a time. Very frustrating. I use medical tape for brief periods across the upper back to provide support (a trick I learned from a physical therapist), but can only stand it for a few hours before the tape irritates my skin too much. Yesterday I pul...

I went to see my provider on Friday, armed with more research I found on HHV-6 and EBV. I discovered information on ValCyte (ganciclovir) which has shown positive results on CFS patients with both viruses in two studies by Jose Montoya of Stanford University. To my surprise, Mary Lou had heard of ValCyte and had prescribed it once before but it was so expensive the patient opted not to take it. I am soooo grateful that God has provided John with a teaching job that gives us good insurance. It will cost around $13,000 for the six-month course of this drug, but I will only pay $2800. God is so good! The book "From Fatigued to Fantastic"  describes the protocol, and Mary Lou is following the book exactly. There is bloodwork to be done regularly to check for side effects. Now we wait, pray, and see. It can take four months before patients feel any better. The drug works to stop the viruses from replicating their DNA, thereby stopping reproduction, and they eventually die ...

Donna, a reader who found my blog sent me this article and case study on the benefits of fibrinolytic enzymes: http://lib.store.yahoo.net/lib/outletnutrition/NeprinolDiscoveryArticle.pdf I have been on this fibrin-fighting protocol for four months now. I may be experiencing some benefit, but it is subtle if I am, and am certainly not cured of my usual aches and fatigue. The pain that bothers me the most is in the pit of my stomach nowadays. I can't do abdominal exercises now and must consciously let go of those muscles throughout the day. P.S. June 2022 - I know now, that these were symptoms of an abdominal migraine. <script async src="https://pagead2.googlesyndication.com/pagead/js/adsbygoogle.js?client=ca-pub-7412919396529588"      crossorigin="anonymous"></script>

I have been using natural forms of the ISAC fibrin treatment, as described earlier on my blog: namely, blood thinning substances such as aspirin and grape seed extract, and lumbrokinase to break down the fibrin. I have not aggressively sought treatment with heparin, as it would require some travel on my part, as well as setting aside my family responsibilities, and that is a huge obstacle, given my condition. I wouldn’t expect the natural route to have very immediate effect, as it can take up to a year even with heparin. In the meantime I have been tested for and seem to be positive for two viruses: Epstein-Barr and HHV-6. They were antibody tests, and only indicate a history of infection. I would need to get tested again to try to determine if the infections are still active. In addition, Dr. Berg has emailed me saying my ISAC results indicate there is SOME live viruses present in my blood, and he suspected they were the two mentioned above. So I still need to confirm that is...

...and I'm about the same. with good days and bad days. The only thing I can tell is different is I have hot flashes and have lowered my thyroid med dosage. My provider is checking my T3 and T4 thyroid levels. I am in Roseburg, trying to help with my ailing father. At least I weathered the one-hour drive up here, which I usually dread. (My husband drove me and will come back to get me in a week.) I have to have a good night's sleep or I won't function well. Good night!

Dr. Berg's quote was music to my ears! I only wish it didn't take me 10 YEARS after these findings were first published before I found out about it. P.S. This proved to be another dead end.  <script async src="https://pagead2.googlesyndication.com/pagead/js/adsbygoogle.js?client=ca-pub-7412919396529588"      crossorigin="anonymous"></script>

If you have fibro, you know why I am so happy to find out that my blood test came back abnormal! We Fibromyalgics are cursed by normal blood tests that leave us at a dead end, and a doctor who is beginning to wonder if it's all in our heads. But when they come back with an objective, measurable problem, it's as good as getting a Christmas present--actually, better. I have ISAC: Immune System Activation of Coagulation. My fibrinogen level was high, though on the upper limits of normal, and the platelet activation index was abnormal. I am finding more helpful information on this on the net. You can too. Hint: type in "ISAC Panel" on your search engine. See especially this article by Dr. Dave Berg, who developed the test I had: http://www.springboard4health.com/notebook/health_hypercoagulation_ill.html Jacob Teitelbaum explains how he uses the protocol for this condition in his book, "Fatigued to Fantastic". You can buy this book on my widget at the top o...

I wrote: "I am hot on another possible explanation and cause of fibromyalgia: hypercoagulability. I received the tip from a Dr. Grams of Pennsylvania, whose site at hyperbaric4autism.com caught my eye. He is a chiropractor who has had good response to the treatment for it. He referred me to a Dr. David Berg of Hemex Labs, http://www.hemex.com/ . This website has scientific articles on the hypothesis that Dr. Berg, a chemist, first proposed nine or ten years ago. The theory is that the body, recognizing an infection and unable to shake it, begins a cascade response in the immune system which builds up fibrin deposits on the walls of the capillaries to "wall off" the infection. This in turn reduces oxygen-exchange out of, and re-uptake of waste products into, the bloodstream, effectively starving the cells of the body and causing pain and fatigue. This is the best explanation I have come across so far of my condition..." P.S. This rabbit trail didn't help me at al...