Fibro Fatigue

So I am on to another possible cure, using cholestyramine. My provider pointed me to chronicneurotoxins.com where the research of Dr. Ritchie Shoemaker lends information on the treatment as well as an online vision test for neurotoxins. A wide variety of chronically-ill patients have tested positive and been succesfully treated for neurotoxicity. I took the online test and tested positive. So I am taking cholestyramine now. I have never seen such fast results from a test I could pay for and take online. It seems to good to be true, but I will give it another try. Hope springs eternal!  I had been following the herbal detoxification I bought last week, and for the third time I was violently ill from the attempt. So I had just been wondering if the medical community had come up with SOMETHING to detoxify the body, when I heard from my provider about this drug. Cholestyramine causes the bile acids to be excreted rather than circulated back to the liver for remanufacturing bile. This i...

I think it worked: the OxyFlush product from Phoenix Nutritionals, developed by Dr. Whiting, has removed my candida-related symptoms! I drank the bottles of OxyAloe for the last eight weeks, carefully following the instructions but reducing the frequency to twice a day when I sensed a general weakening during the treatment. During the last two weeks I have cautiously re-introduced carbs and natural sugars into my diet. I am overjoyed to say I have not had ANY RECURRENCE OF SYMPTOMS (rashy-itchy skin, vaginitis, etc.) This is a major breakthrough for me. I have spent the last four or five years trying to control this scourge, and now I believe I have conquered it! I want to tell the whole world and the millions of women who struggle with this problem. OxyAloe comes in a liquid form, and is very palatable, even though its main ingredient is hydrogen peroxide. It tastes like berry flavor, and can be kept at room temperature, but you can refrigerate it if you prefer to drink it chilled. Th...

Much has happened since my last post in April. Time flies even when I am not having fun! I have visited a podiatrist twice now. He told me I have athlete's foot (tinea pedis) in three toenails; the pinky-toes and the next-smallest toe on the right. He started my on a three-month dose of Lamasil oral and said to use both Lamasil (drug name terbinafine)and Nystatin topically. (I later discovered I need a prescription for the Nystatin topical, which he gave me at the second visit). After a month, the skin breakage was healed completely and the skin was tougher. What a relief! However, the redness-burning-swelling in the feet has not gone away. On my second visit to him, he thought the swelling may be caused by lupus and said he wanted to refer me to a neurologist for nerve-muscle tests and that I should start shopping for a rheumatologist. This was not what I wanted to hear. I had gone that route eighteen and twenty-two years ago, having all the tests one with negative results, an...

So after a week of trying to get back into my normal routine of working out in the Y pool I am regaining my strength again. I still have skin fissures on my feet from Athlete's Foot, but I am living with it. I am going to soak them daily in hydrogen peroxide for the next two weeks to see if any improvement occurs. I still find antifungal creams OTC and applying cold the two most helpful treatments for my red, swelling feet. I also use New Skin (liquid bandage--just fingernail polish with antiseptic) on the fissures.   I have a home traction unit now from the physical therapy office. I like it! I hope this will spare me in the long run from further compression and impingement in my neck due to an old whiplash injury. P.S. I stopped using the traction unit when it strained my tight neck muscles too much. <script async src="https://pagead2.googlesyndication.com/pagead/js/adsbygoogle.js?client=ca-pub-7412919396529588"      crossorigin="anonymous"></script...

I have now weaned off Savella completely, and also dropped my Synthroid from 88micg to 50 micg. I am off iron too, though I should probably have that checked to see if my levels are normal. BUT I have been much more stiff and sore from lack of water exercise, because my feet have been too swollen/cracked to venture into the warm water and exacerbate the problem. It is a conundrum. I have had physical therapy on my neck for a couple of weeks, and it has been very helpful along with the exercises assigned. BUT I tried to detox and liver cleanse by drinking Traditional Medicinals Every Day Detox, doing a coffee enema, and do a liquid fast-diet, and on the fourth day, yesterday, I was in misery with nausea and vomiting. It was perhaps caused by too much toxins hitting my system at once, or was just too nasty in an of itself. It occurred to me that the same thing happened to me years ago when I tried to detox--I was sick as a dog. So what do I conclude? That there is indeed a toxic over...

In the last two months I have revolutionized my eating and cooking habits, and it is having results! I am using a combination of the Body Ecology Diet and Weston Price/Nourishing Traditions-style preparation. My goal has been to eat 66% non-starchy vegetables and more raw/organic food. I feel so much more nourished and stronger! The B.E.D. allows me to eat four grains once again--hurray! I love millet best, with quinoa mixed in. I am experimenting with homemade breads and having a grand time. (No, I'm not kneading the dough--I have a KitchenAid mixer and a breadmaker that makes it possible for me to make the bread. I also use a cheap food processor to grind my soaked whole grains just prior to baking. Thank you, Lord, for such appliances in my kitchen.) I guess I finally became convinced of organic as the way to go after watching the video Food, Inc. You can download it for free from Netflix.com. I highly recommend this movie. I was very skeptical and slow to believe what I was wa...

Oats, Peas, Beans, and Barley Grow, Oats, Peas, Beans, and Barley Grow, Oats, Peas, Beans, and Barley Grow, But better soak them too. :) Are you spending a lot of money on supplements to try and increase your mineral intake? I was until two months ago. I have been battling iron deficiency for years and relied on iron supplements to keep my levels up. Then I discovered I was probably wasting my money on supplements that my body was not even absorbing properly. Sally Fallon's book, Nourishing Traditions, has helped me realize the role that phytic acid plays in inhibiting mineral absorption. Phytates, or phytic acid, are responsible for inhibiting absorption of several essential minerals and is present in most nuts, grains, beans, and cereals. In addition, these foods have enzyme inhibitors that block the essential work of enzymes in breaking down all of our foods into absorbable forms. Usually, one can solve the problem by soaking these foods for 12 hours prior to cooking. The simpl...

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...