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Valcyte, Valtrex ? Newbie from Ukraine. Please help me with the treatment

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Andey, Apr 1, 2015.

  1. Andey

    Andey

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    Hello )
    I am 38 yo male from Ukraine.
    I have a number of nasty mutations MTHFR C677T +/+,MTR A2756G +/-MTRR A66G +/+, BHMT-08 +/+ and if its not enoughCOMT V158M +/+, COMT H62H +/+ and looking back I think almost whole my life I am B12 defficient. As a result now I have a lot neuropathy sympthoms, POTS and probably CFS.
    So far I havent experienced prominent fatique issues but I have swollen lymph nodes in the neck and light fever at around 37C that sometimes subsides, sometimes goes forward. It can be connected with my withdrawal from excercise when I feel myself worse and PENE reaction to the excersise after I feel myself better. All this sympthoms occure less than a year ago and all this time I lost in attempts to diagnose a illness. This search ended only when I discovered my SNP status and checked my symptoms against CFS and POTS.
    As for my POTS I definitely have some symptoms for years back, just didnt payed enough attention at a time.

    So my current status is no prominent pain or fatique, light fever, swollen lymph nodes, POTS.
    Some GI problems that could be attributed as IBS.
    I have IgG EBV, positive PCR for HV6 in saliva (my doctor at a time said it isnt a problem), No CMV.
    I also have low WBC count around 3.5 with low neutrophilies and somewhat distorted T cells immunology profile.

    To address my B12 defficiency I already started Folate and some sublingual MeB12, plus ordered B12Oils.

    To address probable CFS I need your advice on treatment. Lab capabilities in Ukraine are limited and I already done almost every test available. I read somewhere at this forum that If treatment started early on desiase and it is aggressive enough that there is big chance of a remission. Is it true and could it be achieved in my case ?
    Should I suspect that my main problems is EBV and HV6 ?
    What is the optimal treatment options for the cause ?

    I have a very limit budget to play with but can loan some money. And in any case I could not exceed $500 a month so would try to use some generics at lower dosages if needed.
    So far I started already
    Inosine
    LDN (just building up a dose for 2 days)
    And I REALLY appreciate any help with advice because I am so puzzled now and have zero experience on a subject.
     
  2. Andey

    Andey

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    P.S. Are there some definite sign of having CFS ? As I understand some signs overlaps greatly with POTS(that I definitely have) so I am not sure.
    Ive done DIY excercise test, some push ups and squats to the fatique limit. Immidiate effect is that my HR became increased till noon next day but no prominent symptoms of fatique. Now 2 days after I feel myself little bit more feverish but cannot tell is it really happen or significant.
    P.S. It also appears to me that my fever respond to antibiotics. During last months I gone trough Helicobacter Pilory eradication (14d of Ampicillium and Claritromicin) and my fever lowered almost to baseline starting from d3 than reaccured. As I recall my last excercise was on the 1st day of treatment.
     
  3. SOC

    SOC Senior Member

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    @Andey,
    It looks like you've made a good start with inosine and LDN. You best bet is probably to get an appointment with Dr Kenny DeMeirleir (aka KDM). He's an ME/CFS specialist who practices in Brussels Belgium and, I think, somewhere in Norway. In my experience, you waste less money going straight to a top specialist who knows what he's doing than fiddling around with local doctors who don't understand the illness. The local docs waste your money on doctor visits and tests that produce no results.

    There are quite a few KDM patients here, and some have reported on their treatment. You can find some of those threads by searching "KDM" using the Google Site search.

    Some KDM patients might also be willing to discuss how KDM might be able to help. @Sushi, @justy, @Valentijn
     
    justy, helen1 and Valentijn like this.
  4. SOC

    SOC Senior Member

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    The best sign of having ME/CFS/SEID is PEM/PENE as described in ME: International Consensus Criteria
    This is not the same as exercise intolerance, which is a known possible symptom of POTS. Note in particular that PEM/PENE can have delayed onset, prolonged recovery, and acute flu-like symptoms, while exercise intolerance does not.

    Fatigue is a tricky issue. It is possible to have CFS without extreme fatigue, although it's uncommon. PEM/PENE is the thing to look for.
     
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  5. Andey

    Andey

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    I understand and appreciate you advice but... I am really on low budget and going to Brussles is no option for me.
    I am really sad about this but I am not in position to get best help possible. With all this Russian semiinvasion staff our currency fall to the grounds...not a good time to get ill ((


    I was contacted by forum member and was warned that no medical advice allowed at the forum. I understand that.
    To clarify - I have my own doc and I will not do anything serious without his permission. Its more about collecting information and giving it to my doc. All I will do would be under supervision by actual medical professional. For better understanding - Its still very common to find advices to excercise more to treat CFS here. My doc is not so ignorant but still I need to collect all possible aids for him.
     
  6. Andey

    Andey

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    I read this before but I am still puzzled. My feverish feeling is almost constant and increase in symptoms that could be attributed as after excercise in not acute. Feeling of swollen lymph nodes is more pronounced.

    BTW My temperature pattern is 37C during a day but morning and evening is normal 36.6. Is it typacal for some condition ?
     
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It does not seem clear that you could call your illness CFS if you do not have fatigue. CFS is not a specific disease but a pattern of symptoms that includes fatigue. It probably has several different causes, so nobody can advise on any particular line of treatment unless there is a clue to a cause. I dont think there is any good reason to think CFS is related to B12 metabolism or SNPs to be honest. Nobody really knows much about the various causes. I would be sceptical about going to doctors who treat with antibiotics or antivirals on the basis of antibody tests because I do not think these are reliable for diagnosis. If you have a doctor who seems helpful I would take their advice.
     
    redviper likes this.
  8. redviper

    redviper Senior Member

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    Hey Andy,

    For most people suffering with ME/CFS one of the symptoms is a low grade fever, one that usually doesn't register with a high temperature. I just explain it to people that I often feel like I have a fever and my forehead/cheeks do occasionally feel hot, but I've never had a documented "fever" with a rise in temperature since I got sick.

    Also, these low grade fevers are completely unrelated to physical exercise for me.
     
    Andey likes this.
  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Many conditions can produce a low grade elevation of temperature during the day but not particularly CFS as far as I know.

    What was it that made you think you might have CFS?
     
    redviper likes this.
  10. SOC

    SOC Senior Member

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    None of us here can tell you for certain whether you have ME/CFS. You need a diagnosis from a top specialist to be absolutely sure, and there aren't many top specialists in Europe. All we can tell you is whether your symptoms appear similar to those of the majority of patients.

    Feeling feverish constantly is common, especially in the early days of ME/CFS. An increase in flu-like symptoms including swollen lymph nodes, after exercise is common in ME/CFS. It does not have to be severe. Long-elevated HR after exertion is also common.

    I will say this, in case it helps: Your symptom set sounds similar to mine (and my daughter's) in the early days. We have chronic EBV and HHV6 infections. Our conditions improved with Valcyte and Valtrex. If your doctor is willing to prescribe Valcyte, it might be worth trying. It has just become available as a generic, so the cost shouldn't be extraordinarily high.
     
    Andey, Mij and redviper like this.
  11. redviper

    redviper Senior Member

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    I obviously have no where close to the understanding of this disease or the contributing factors that you do, but for what it's worth (probably nothing) I have seen quite a high number of anecdotal reports of ME/CFS patients complaining of a low grade fever. I know for me it's been a prominent issue throughout the 3 years that I have been sick, some at more times than others for reasons I have yet to be able to identify. However, like you said, many conditions can produce a low grade elevation of temperature, so it's hard to say with any certainty.
     
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I agree that feeling feverish seems to be common, but the relationship between feeling feverish and actually having a raised temperature on a thermometer is quite subtle. What I have not heard of is clear evidence for raised temperature measurements - as you say it does not seem to follow. Although doctors are often taught to regard 37 as the upper limit of normal and hence 'normal' my own experience of temperature charts in healthy and unhealthy people is that healthy people do not go up to 37. So it might be that nobody has documented raised temperature in ME/CFS because 37 is regarded as normal but I don;t know the literature on this.
     
  13. Mij

    Mij Senior Member

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    @Andey I agree with what others are saying, you don't necessarily have to feel fatigue at the onset.

    I didn't have any fatigue for 9 months but had a mild sore throat/swollen glands and mild sore ear.

    I would not overexert or attempt exercise if I were you during this time.
     
  14. Andey

    Andey

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    I understand your point ) I definitely know that a hadnt have such temperature pattern before, when fever started than temperature started. When on some day temperature goes down I feel myself less feverish too.
    Personally I can assume that this is a CFS because sometimes I feel also some sore throat symptoms that could gone day later but cant associate it with definite event at my excersise days or mental state etc
     
  15. redviper

    redviper Senior Member

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    I didn't have a thermostat at the viral onset of my illness, but it came with severe headaches and a fever, along with many other symptoms. I wasn't able to test my temperature at the time of onset, but I would be willing to bet that I had a high fever just based on the intensity of my symptoms, which were strongest during the onset.

    After the onset I bought a thermostat but have never experienced fever symptoms similar to those I experienced in the viral onset, but I have regularly tested my temperature since and it's usually between 36.5-36.9. It doesn't matter if I feel like I have a low grade fever or not. There will be occasions though where my fiancée or other family members will touch my face/forehead and be stunned that I don't register as having a fever. I played football and boxing growing up and took some good hits, I would compare my ME/CFS low grade fever to the feeling I experienced after I would take a hard hit to the head. That's the only other time I've experienced headaches similar to my ME/CFS low grade fevers, in both scenarios it's almost like I can feel the inflammation in the brain.
     
    Andey likes this.
  16. Andey

    Andey

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    Thank you for advice.
    Can I assume that I am quite on an early stage now ?
    Have you started your treatment at this stage or later ?
     
  17. SOC

    SOC Senior Member

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    I think we need to be clear on this point -- Dr Edwards is a brilliant physician researcher in the area of rheumatoid arthritis, but is a relative newbie to the field of ME/CFS. To the best of my knowledge, Dr Edwards has never had an ME/CFS practice, or treated an ME/CFS patient. Is that correct @Jonathan Edwards?
     
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  18. Andey

    Andey

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    Thank you for sharing your considerations )
    Is it crucial to start treatment as early as possible or few months is not a big deal in this case ?
     
  19. redviper

    redviper Senior Member

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    Fair enough, I probably should have phrased it better to convey my point, I just meant to express that he clearly has a better understanding of medicine and many other related aspects than me. I suppose in hindsight you are right though, we do live this disease/nightmare every day, so I guess I'm an unwilling expert on ME/CFS at this point.

    Either way, it's great to have the contributions of Dr. Edwards to the community.
     
  20. SOC

    SOC Senior Member

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    If you have ME/CFS, current knowledge suggests that the sooner you start treatment, the better. There seems to be a 3-5 year window for the best chance of recovery, so it's best not to waste any of it.
     

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