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  • anyone with CFS tried antivirals or thyroxine?

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    Old 05-12-2005, 03:16 AM   #16
    greyzak
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    Re: anyone with CFS tried antivirals or thyroxine?

    Hi Peregrine,
    The treatment depends on which virus or viruses they isolate. Mine is the CMV virus so I am on Valcyte and it is reducing my titers. I will be on this treatment for 6+ mos. until my titers are down and my Holter, EKG and echo are within normal ranges.

    Hope this info helped.

    greyzak

     
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    Old 05-15-2005, 01:20 PM   #17
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    Re: anyone with CFS tried antivirals or thyroxine?

    I thought the medical researchers found that ME was not EBV, which they originally thought the illness was caused by as a lot of people got it when they had glandular fever, which is caused by EBV or CMV.

    I know that some people have had fatigue syndromes that have been caused by such viruses and that they have responded to antiviral treatment but I dont think everyone with ME/CFS has these viruses do they as the titers are usually in the normal range. I heard that it may be linked to lyme disease (borrelia) but then that is just another theory to go along with all the others.

    Interesting what you say about Dr Cheney though.

     
    Old 05-15-2005, 02:39 PM   #18
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    Re: anyone with CFS tried antivirals or thyroxine?

    HI Woozyguy,
    There have been a lot of theories put forth. Unfortunately, it is taking a long time to prove or disprove them. However, research continues and new discoveries are made regularly.

    What I have posted regarding the cardiac involvement that has been discovered and it's cause being viral is the latest research from the CFIDS community. Whether M.E., CFS, Gulf War Syndrome, Lyme Disease, etc are one and the same diseases has been discussed and there is still no consensus. However, with the latest research it appears that one thing is certain and that is that CFS is caused by some kind of pathogen, probably viral and probably from the Herpes Family.

    The researchers do believe that there are subsets within CFS that don't have the same characteristics. This can be explained by the fact that since CFS has been used as a category for people whom the doctors can't figure out what is wrong with them, they won't always have the same test results. I think that that screening is an important tool to define the true CFS patient so that the accuracy of the research improves. BTW- in Dr. Lerner's studies, 100 % of the patients have these cardiac abnormalities associate with specific viruses. He has also biopsied their hearts which has shown the virus in the heart tissue.

    Since Dr. Lerner's work is peer-reviewed and replicated, and since other CFS researchers such as Drs Cheney and Ablashi are discovering the same thing, I think we can have some confidence in the fact that Dr. Lerner is right.

    I know that it isn't comfortable hearing that this affects the heart, but I think it should make everyone feel better knowing that there is treatment for it and as a result, a treatment for CFS.

    I hope I've answered your questions. Do I think all the answers have been found? No, but I think we are getting very close and this viral induced cardiomyeopathy could very well be the most important discovery made to date. It is hopeful news for us all.

    Stake care,
    Greyzak

     
    Old 05-16-2005, 09:07 AM   #19
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    Re: anyone with CFS tried antivirals or thyroxine?

    Quote:
    Originally Posted by sleepyguy
    HI

    Has anyone with CFS tried antivirals> If so did it help? ALso has anyone tried thyroxine T4 or T3 or both? Any help? Did it help your brainfog too>

    Martin
    Sleepyguy,

    I was finally dx'd with FMS, CFS, & CMP back in 2004, first by my pcp, then a pm doctor, and confirmed by a neurologist. Along with not receiving any lasting improvement with the symptoms from western meds only.

    Through my journey I was led to a Dr Kent Holtorf of the Fibromyalgia and Fatigue Centers. Initially extensive blood work is done (34 vials drawn at first visit) and treatment started. Initially with a natural T4 and supplements that included addressing my fatigue issues.

    With the results things were adujusted and added as some of the symptoms stabalized another set of extensive blood work was done (24 vials) which resulted in the findings of a compromised immune system, no Lymes disease, previous Epstein Barr, 4 active blood infections of the following viruses; HHV6, CMV, Mycoplasma Pneumonia, and active chronic Candida. Low Serotonin, and some others.

    Now that my treatment includes antibiotics and fungal treatment there has been lasting improvement no brain fog, no fatigue, no more sore throats, and so much more.

    I personally don't know if antiviral meds will help, however I do know that there is testing and treatment available now.

    I wish you the best in your journey with this, uvm

     
    Old 05-21-2005, 05:16 PM   #20
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    Re: anyone with CFS tried antivirals or thyroxine?

    hi
    well that would be great if it turned out that cfs was a herpes induced cardiomyopathy.

    I read petarcas book and he talks in one chapter all about Lerner and his findings. I did not know Cheney has found this too. Interesting. But I think not all people show positive titres of EBV and/or CMV, otherwise they would be deemed to have mononucleosis or chronic EBV/CMV.

    ANyway I am back on T3 and I think it is helping again as my symptoms have gone down again at the moment (thank God!!!!!!!)

    I also read in the scotsman that Dr Gow believes that turning off certain genes which are causing the immune system to work overtime will improve peoples CFS symptoms. Whether or not this may finally be found to be overactive due to the EBV/CMV cardiomyopathy i dont know.

    Anyway, things are on the move a bit now I feel.

     
    Old 06-03-2005, 12:47 PM   #21
    OraEtLabora
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    Re: anyone with CFS tried antivirals or thyroxine?

    I have been on Armour thyroid since about September, 2004, and have had resolution to many of my "CFIDS" symptoms. I was dx with "Fibromyalgia/CFIDS" about 16 years ago, and have learned recently (by obtaining my medical records from that period) that thyroid studies were never done on me back then. I was working with many human viruses at the time in a biotechnology firm, and so became alarmed when my EBV, HSV titres became elevated. In addition to this, I had many, many symptoms of thyroid disease. But it took 16 years to finally get a definitive dx of thyroid disease, since my TSH was always "normal" and so no other tests were ever done. It wasn't until I insisted on some further thyroid testing (after my mother was found to have had thyroid disease for probably most of her life, and my sister as well) that the extent of my thyroid gland's destruction was seen. My anti-thyroid Abs are higher than the lab can measure, and the destruction to my gland, it is clear, has been going on for many years.

    I could be totally off base, but I believe that my problem was NOT a "new" disease (CFIDS/FIBRO), but a very old and well recognized disease - Hashimoto's Thyroiditis. If one's immune system is in overdrive, due to the production of antibodies to the thyroid, then it would make sense that it would also be producing numerous Abs to other common viruses - viruses that cause no illness in most people. Was my chronic EBV the result of the Hashimoto's? I think it was. Mycoplasmas, Herpes, these are very common organismes found in more than 90% of the population, so naturally one would test positive for them. Even H.Pylori, which is shown to cause stomach ulcers in some people, is found in most people, but does not cause problems. Yet many people with Hashimoto's have H. Pylori and it causes great discomfort and distress. WHy? I think because the immune system is already in overdrive.

    I have been helped greatly with just the Armour alone. I suspect that as time passes, and I am on it longer, many of my other "CFIDS" symptoms will abate. I'm not saying I shouldn't be treated with antifungals and antivirals. I'm just saying that if my docs had dx me with Hashi when I first presented with Hashi symptoms 16 years ago, perhaps my immune system would not have become so comprimised that I became disabled from my job! It's just my humble opinion, but I think the root cause of much of this CFIDS/Fibro stuff is undiagnosed and undertreated thyroid problems that goes on so long the entire system becomes whacked out!

    It is curious that when the TSH became the "Gold Standard" for screening for thyroid disease around 1973-74, it took only about 6 years for the "new" diseases (CFIDS/FIBRO) to be diagnosed. Now it is being discovered that millions of people suffering from thyroid disease have been missed because the TSH is not picking up a high percentage of thyroid sufferers. Many of those were also diagnosed with Fibro/CFS, because of the symptoms (which are identical to symptoms of thyroid disease, especially thyroid disease that has gone on for a long time untreated).

    So, my theory is that the "new" diseases are the result of a failure to dx plain old vanilla old diseases, because many docs have become so dependent on numbers on a piece of paper and so-called "normal" values, that they can't recognize thyroid disease if it hits them in the face. I was taught in my laboratory training that you need both - but the patient, and his symptoms, come first.

     
    Old 06-03-2005, 02:12 PM   #22
    peregrine
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    Re: anyone with CFS tried antivirals or thyroxine?

    I also have Hashi/Hypo and take Armour, and have for many years, but my CFIDS symptoms continue. Having both - thyroid disease and CFIDS for 12 years - I believe they are not the same animal. As I said, my Thyroid problem is under control, but I continue to have CFIDS "flares". I have come to know that the symptomology is different. I am glad, however, that you feel releived of all your symptoms, so perhaps your problem was the Thyroid and not CFIDS. I also agree that many people diagnosed with CFIDS actually do have a Thyroid problem and that this occurs because a good many docs are not really savy about either condition.

     
    Old 06-03-2005, 02:32 PM   #23
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    Re: anyone with CFS tried antivirals or thyroxine?

    peregrine,

    Oh, I'm not convinced I don't have CFIDS - I just think it's a result of my Hashi's being misdiagnosed and untreated for so many years. In retrospect, I can see signs of thyroid disorder in me from clear back in grammar school. I just think that once the immune system gets whacked out, in my case, from Hashi's, I was a sitting duck for the other. Not all of my symptoms have resolved - notably, the horrible muscle/joint/soft tissue pain. Also, I still suffer fatigue, sore throats, tinnitus, swollen salivary glands (but some of these are Hashi's symptoms, that I don't know if they will resolve soon, since I only just started treatment almost a year ago).

    What CFID's symptoms do you still suffer from? And, what dose of Armour are you on? Have you tried adding T4 to the Armour? (Some people do that because they find their Free T4 is low in comparison to their Free T3, even with Armour, so they supplement more T4, and it seems to help them). My sore throats resolved completely after a few months on 3 grains of Armour, but since I had a hysterectomy 9 weeks ago, many of my ear/throat symptoms have returned (I'm on only 2 grains Armour now, and am on the way up).

    What were your thyroid symptoms that have resolved with Armour? I'm not as familiar with CFIDS as I am with Hashi's, since I've read more about the latter. But I thought the symptoms were very similar. I am interested in learning more about taking antivirals, since I know I have high titres to several. And I'm not convinced I don't have high titres to Mycoplasma (which has been implicated in Hashimoto's).

    Appreciate your help and input.

     
    Old 06-04-2005, 02:55 AM   #24
    peregrine
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    Re: anyone with CFS tried antivirals or thyroxine?

    Quote:
    Originally Posted by OraEtLabora
    peregrine,
    What CFID's symptoms do you still suffer from? And, what dose of Armour are you on? Have you tried adding T4 to the Armour? (Some people do that because they find their Free T4 is low in comparison to their Free T3, even with Armour, so they supplement more T4, and it seems to help them).
    What were your thyroid symptoms that have resolved with Armour?

    My TSH levels are within range, I'm not cold all the time (I used to be, even in Summer!), no more dry skin and hair or hoarseness, or difficulty swallowing (from the goiter), etc. I take 90 mg. of Armour a day. I have had my Free T-4 checked (actually, recently) and it is fine.

    Re. CFIDS symptoms, first of all, the onset is very different from many other illnesses, which is outlined at any of the CFIDS web sites. Although the severity and frequency of my "flares" has decreased throughout the years, the virus (if, indeed, that is what it is), is still alive and well in my system and I can tell the minute it rears up. Unlike a Thyroid disorder, CFIDS "flares" are often accompanied by a distinct fluey feeling. Also, CFIDS can affect any body system leading to mouth ulcers, cognitive and other central nervous system breakdown, of course, profound fatigue, joint pain, GI problems, etc.............. Additionally, I believe the "triggers" for CFIDS further separates it from Thyroid disorders, such as exercise intolerance, alcohol, certain odors, sensitivity to many meds., etc.. ...

    I suppose one could still argue that there is no difference between the two, but having had both for a good many years now, I can tell the difference in my body between, for instance, the feeling of tiredness that accompanies Thyroid problems and the utter depletion that is typical of CFIDS flares - for the first 9 months of the illness one could find me in one of two places, in bed or lying down on the couch and going from one to the other was an extreme effort. I was so constantly and extremely ill that I actually got my will in order, and I know others with the illness who report this as well. However, 12 years ago not much was known about CFIDS, so the myriad of docs I was sent to hadn't a clue as to what I had. Nowadays, we have (a bit) more information and we also know people don't die from it.

    I am not in any way trying to minimize Thyroid symptoms as compared to CFIDS, afterall, I do have the disorder myself, I just do not think they are one in the same.

    Last edited by peregrine; 06-04-2005 at 03:07 AM.

     
    Old 06-04-2005, 08:35 AM   #25
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    Re: anyone with CFS tried antivirals or thyroxine?

    Thanks, Peregrine, for your reply. I'll have to read more on CFIDS - I was dx with it over 16 years ago, and what little reading I did back then depressed me so much, since there was no treatment or agreement as to cause, that I just quit.

    I have had resolution of my sensitivity to meds, odors and exercise intolerance just from taking thyroid hormone. I always thought those things were due to the fact that my metabolism was so messed up from the thyroid not functioning. Speeding up my metabolic rate has resolved some of that. I haven't had any alcohol to drink, so I can't tell if that is better, but even my son noticed just yesterday that a certain perfume I used to get sick over before, I now thought smelled "good." I should mention, though, that I am on a higher dose of Armour (180mg/day, which I take sublingually, 90mg AM, 45 at noon, and 45 at bedtime). Also, it was determined that I have adrenal fatigue, so I take 5mg natural cortisol in the AM, and 5mg in PM. I also take bio-identical Estradiol and Progesterone, and notice a real difference in my energy levels when my Est/Progest ratio is off.

    Everyone is different in how things affect them. I have known that extreme fatigue - where I couldn't even get dressed because it was too exhausting to lift my arms over my head to put on a shirt! I recently just went through that again, with severe depression, sore throat, and found out that my Est/Progest ratio was way off (way too much Progesterone) - as soon as I adjusted my dose, I felt great - within 8 hours. I guess maybe I'm just looking for more simple, natural answers and explanations. My profession before getting sick was a senior Virologist at a large hospital, then at at biotech firm studying rapid identification of HSV, CMV, EBV. I had no exposure to these viruses prior to my entering the field, because I had to have baseline titres done, and they were done twice to confirm the negative result (it's rare for an adult not to have at least had exposure). My titres rose dramatically while I was working (I'm currently disabled), so there's no doubt I was exposed to those viruses while working with them. Then I got sick, so it was natural to assume it was from the viruses I worked with. But now, I believe that it was really my low thyroid that made me more susceptible to the effects of those viruses. Otherwise, why would they disable me, and not my colleagues?

    That is the question I keep asking myself.

     
    Old 06-04-2005, 01:25 PM   #26
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    Re: anyone with CFS tried antivirals or thyroxine?

    Quote:
    Originally Posted by OraEtLabora

    I have had resolution of my sensitivity to meds, odors and exercise intolerance just from taking thyroid hormone. I always thought those things were due to the fact that my metabolism was so messed up from the thyroid not functioning. Speeding up my metabolic rate has resolved some of that. I haven't had any alcohol to drink, so I can't tell if that is better, but even my son noticed just yesterday that a certain perfume I used to get sick over before, I now thought smelled "good." I should mention, though, that I am on a higher dose of Armour (180mg/day, which I take sublingually, 90mg AM, 45 at noon, and 45 at bedtime). Also, it was determined that I have adrenal fatigue, so I take 5mg natural cortisol in the AM, and 5mg in PM. I also take bio-identical Estradiol and Progesterone, and notice a real difference in my energy levels when my Est/Progest ratio is off.
    I had to work up to the 90 mg (also sublilngual) Armour because it made me so jittery and nervous. I can't imagine tolerating the high dosage you take. Did you increase gradually? I'm also interested in the Cortisol and bio-identical Estradiol and Progesterone you say you take. Were these prescribed by an allopathic doc or are they available at a HFS. I do use natural progesterone cream but would like to hear more what you have to say about these things.

    Thanks,

    P.

     
    Old 06-04-2005, 02:15 PM   #27
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    Re: anyone with CFS tried antivirals or thyroxine?

    WHen I first went on the Armour, I was so anxious to begin to feel better that I went up too fast, and before long, was at 480mg/day! I was sweating a lot, and had heart palps, and insomnia - my doc freaked a little, lectured me, and took me back down to 180. Then, I had surgery (total hysterectomy/oophrectomy) and was taken off thyroid by an Endo my GYN consulted with.

    My doc, who is a M.D., treats with a holistic philosophy, (which is the reason my GYN and he Endo consult didn't consult with him when I had my surgery). For almost 16 years, I was filled with anti-depressants, anti-anxieties, anti-seizures, and tons of other meds that didn't help me one bit, but only caused terrible side effects and more suffering. Then I found my current doc. He felt that much of my problem was hormone imbalance from years and years of being hypothyroid and receiving no treatment for that. After my surgery, and all the horrible symptoms I suffered from being suddenly taken off my hormones by the GYN and Endo, my holistic MD put me back on Armour at 30mg/day to start, and I increase by 30mg/day after 2-4 weeks, depending on how I feel. I am doing much better with the slower increase, and almost immediately the horrible panic/anxiety attacks stopped, the flushing and chills, and freezing and burning and crying I was experiencing after the surgery all stopped.

    Prior to my surgery, I felt great, and was actually beginning to think I might be able to go back to work someday. I was on bio-identical estradiol/progesterone/testosterone/DHEA/ and Pregnenolone, as well as Armour. After the surgery, as I said, I was a mess because they took me off everything, and I am just now starting to feel better. I'm still not where I was pre-surgery, though.

    I have done so well on the natural hormones. As you know, we CFS people just don't tolerate most meds well. I tried synthetic HRT, and swelled up in my hands, ankles, feet, face, and breasts. Breasts were tender, head ached, and I was cranky. The natural hormones eliminated all those symptoms. I have to watch, though, because the Progesterone makes me really sleepy, and too much makes me depressed, so my blood work is done every 6 weeks and doses are adjusted accordingly. The estrogen acts as a natural pain killer, so I sometimes feel a lot less pain when my estrogen is where it is supposed to be. I'm still learning how to tweak my doses on my own.

    The doc I see is listed on the Net as one of the best Thyroid docs in the country. I was lucky, I feel, to find him. I have gained functionality that I never thought I would get back, although I am still nowhere near able to return to work full time. I have more hope now than I ever have before this. The hormones I take are all made up specially for me by a compounding pharmacy located in my home town. (Except the Armour and the CORTEF). The cortisol is CORTEF, a natural hydrocortisone. My saliva cortisol levels were below normal at 8AM, above normal at NOON, low normal at 4PM, and below normal at 11PM, so I take 5mg CORTEF in the AM and 5mg in the PM. So far, I've noticed a lot less burning in my ears and throat since taking the cortisol - I believe the low levels were why I suffered so much inflammation in my ears and throat.

    Some people take T4 with their Armour, to get the higher dose of T4 without taking too much Armour. Are your Free T3 and Free T4 in the upper 1/3 of normal? THat is where many people say theirs has to be to feel good.

    Has the natural progesterone cream helped you? Have you had your Estradiol/Progesterone levels tested? When I first saw the holistic MD, he tested me and I was way below normal for Estradiol, Progesterone, DHEA-S, Testosterone, and, of course, Free T3 and Free T4, although my TSH was normal. He checks me every 6 weeks, at least until I get to where I can stay at the same dose for awhile. It's been kind of up and down because of my surgeries (had 3 this year so far).

    Hope this helps.

     
    Old 06-12-2005, 07:42 AM   #28
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    Re: anyone with CFS tried antivirals or thyroxine?

    Greyzak, How is your therapy with the anti-viral going? From all I've read of Lerner's work and seeing that Dr. Paul Cheney is now essentially saying the same thing about CFS and cardiomyopathy, I am convinced this is the route that is going to find help for many of us.

    I am scheduled for an echocardiogram June 22nd, and my doctor just ran a series of sensitive blood assays so I think my dear most knowledgable doctor is also thinking along this pathway.

     
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