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

Mij

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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 ?
I think you can assume you're at the early stages just to be safe, the best advice would be to save your energy. This advice was given to me by an M.E specialist but I didn't listen and made myself worse.

I've been ill for 24yrs. During my onset I had extremely elevated thyroid antibodies- viral. I was not treated at the time but I improved on my own within the next year, when I returned to work and started exercising I relapsed and became "disabled".

I've had a long journey but have improved quite a bit with various treatments.
 

SOC

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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.
Yes, we patients are no experts either, other than on our own health situation. However, there are physicians and researchers who have treated and/or studied hundreds or even thousands of ME/CFS patients. They have seen all the variations. They are the ones I trust for solid information about the condition.
 

Mij

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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.
Interesting. I was the same way during the onset. When I saw my M.E doctor I told him I felt as though I had a fever, but when he took my temperature he said I didn't and that my temp was actually below normal. I don't remember his exact wording since it was so long ago, but he said that this was my bodies mechanism of trying to increase my temperature to normal.
 

Sushi

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Interesting. I was the same way during the onset. When I saw my M.E doctor I told him I felt as though I had a fever, but when he took my temperature he said I didn't and that my temp was actually below normal.
That has been my experience too. During the times when I "felt" feverish, I did not actually have a fever.
 
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Yes, we patients are no experts either, other than on our own health situation. However, there are physicians and researchers who have treated and/or studied hundreds or even thousands of ME/CFS patients. They have seen all the variations. They are the ones I trust for solid information about the condition.
I would try to reach somebody with experience here and my doc treat CFS patients himself. But there is a big difference in advanced medicine here and in the west. Our healthservice is child of Soviet one and there is no culture of constant professional growth (

I think you can assume you're at the early stages just to be safe, the best advice would be to save your energy. This advice was given to me by an M.E specialist but I didn't listen and made myself worse.

I've been ill for 24yrs. During my onset I had extremely elevated thyroid antibodies- viral. I was not treated at the time but I improved on my own within the next year, when I returned to work and started exercising I relapsed and became "disabled".

I've had a long journey but have improved quite a bit with various treatments.
Thank you for sharing ) Only thing that I cant decide is where to abandon swimming or not. It helps with POTS but it is also a extertion.
I am a "gym rat", its hard for me even to consider to get rid of excercise in my life ))
 
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I am a "gym rat", its hard for me even to consider to get rid of excercise in my life ))
So was I before the onset of my illness, I would work out 5-6 times a week. During the first few weeks I tried to push through my viral onset and lift some weights / do some cardio. I don't know if it did any damage, but I can tell you that it certainly didn't help me in any way or prevent the viscous onset of the disease. I've been disabled for three and a half years now and haven't stepped foot inside a gym since. Just be careful brother, the last thing you want to do is push to hard and potentially end up where I am.
 
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So was I before the onset of my illness, I would work out 5-6 times a week. During the first few weeks I tried to push through my viral onset and lift some weights / do some cardio. I don't know if it did any damage, but I can tell you that it certainly didn't help me in any way or prevent the viscous onset of the disease. I've been disabled for three and a half years now and haven't stepped foot inside a gym since. Just be careful brother, the last thing you want to do is push to hard and potentially end up where I am.
So similar, I excercise all this time, with pauses only while treatment - 9 months from initial symptoms.
Not any more I think.
 
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SOC, I fully admit that I am not an ME physician. The best I can say is that I have spent the last two years learning about ME from the people who know - the patients on PR - which I suspect qualifies me rather more than a lot of practitioners! I honestly do not think that we should be suggesting that someone without a clear diagnosis should be suggesting to their doctor to prescribe an antiviral. And I don't think we have any evidence for urgency in a treatment for ME anyway, much as it might make sense if the diagnosis was established. The best chance of recovery may be in the first few years but so far we do not have good evidence for that being due to any specific therapy.

It is a rule of PR that we do not recommend medical treatment. As a board member I am responsible for the fall out of this website so I am concerned that we should stick to rules.
 
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SOC, I fully admit that I am not an ME physician. The best I can say is that I have spent the last two years learning about ME from the people who know - the patients on PR - which I suspect qualifies me rather more than a lot of practitioners! I honestly do not think that we should be suggesting that someone without a clear diagnosis should be suggesting to their doctor to prescribe an antiviral. And I don't think we have any evidence for urgency in a treatment for ME anyway, much as it might make sense if the diagnosis was established. The best chance of recovery may be in the first few years but so far we do not have good evidence for that being due to any specific therapy.

It is a rule of PR that we do not recommend medical treatment. As a board member I am responsible for the fall out of this website so I am concerned that we should stick to rules.
I received some important advices here:
1. Cancel all extortions at least until proven that I don't have CFS
2. I could now arguably insist on further diagnostics
3. From this forum and this thread I know that best practice for CFS treatment is to consider Valtex and Valcyte. At least consider, for example my neutrophils are low so doc could say to stay away from Valcyte or use a smaller dosage.
4. I know now that time is crucial
5. I would ask if there is more specialized clinic on the matter locally.

Can I ask you a question that been a medical professional yourself you could answer ?
Local medical practice include treatment by immunoglobulins and interferon/inducers. Do you think it is appropriate and efficient ?
 
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I received some important advices here:
1. Cancel all extortions at least until proven that I don't have CFS
2. I could now arguably insist on further diagnostics
3. From this forum and this thread I know that best practice for CFS treatment is to consider Valtex and Valcyte. At least consider, for example my neutrophils are low so doc could say to stay away from Valcyte or use a smaller dosage.
4. I know now that time is crucial
5. I would ask if there is more specialized clinic on the matter locally.

Can I ask you a question that been a medical professional yourself you could answer ?
Local medical practice include treatment by immunoglobulins and interferon/inducers. Do you think it is appropriate and efficient ?
Well, please note that it is against our rules to actually give advice and the things you have mentioned are simply what individuals have suggested. I am not sure that there is any reason to reduce activity if it does not cause you problems and you do not have fatigue. If you have no diagnosis it is certainly reasonable to ask for further investigation but I am not sure about insisting! You do not know that it is best practice to consider valtrex and valcyte I hope, since neither are of proven benefit and people on this forum have all sorts of different ideas what might help. There does not seem to be anything in the information you have given us that would suggest going the anti-viral route. Time may be crucial but if we do not know what you have or how to treat it that may not help much!

Immunoglobulin treatment has been reported to be successful in CFS/ME in small trials that are not really conclusive one way or another. I am not aware of any convincing trials of interferon inducers. So I think the answer is that we do not know if these are useful.

I hope things go well for you but do appreciate that an awful lot of unvalidated treatments are being recommended and that you could waste a huge a mount of money trying them. And I come back to the fact that if you do not have fatigue or PEM then it is difficult to think in terms of CFS/ME treatments being relevant anyway. A lot of people on this site would consider PEM to be a necessary feature for the diagnosis. And again I would emphasise that we have no reason to think that this is one specific disease, at least in terms of causation.
 
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Well, please note that it is against our rules to actually give advice and the things you have mentioned are simply what individuals have suggested. I am not sure that there is any reason to reduce activity if it does not cause you problems and you do not have fatigue. If you have no diagnosis it is certainly reasonable to ask for further investigation but I am not sure about insisting! You do not know that it is best practice to consider valtrex and valcyte I hope, since neither are of proven benefit and people on this forum have all sorts of different ideas what might help. There does not seem to be anything in the information you have given us that would suggest going the anti-viral route. Time may be crucial but if we do not know what you have or how to treat it that may not help much!

Immunoglobulin treatment has been reported to be successful in CFS/ME in small trials that are not really conclusive one way or another. I am not aware of any convincing trials of interferon inducers. So I think the answer is that we do not know if these are useful.

I hope things go well for you but do appreciate that an awful lot of unvalidated treatments are being recommended and that you could waste a huge a mount of money trying them. And I come back to the fact that if you do not have fatigue or PEM then it is difficult to think in terms of CFS/ME treatments being relevant anyway. A lot of people on this site would consider PEM to be a necessary feature for the diagnosis. And again I would emphasise that we have no reason to think that this is one specific disease, at least in terms of causation.
Thank you for your answer.
I understand your point and even if it don't look like so you really changed my attitude towards diagnosis.
I read Cfs diagnosis criteria and understand that answer if I fit in it depend on doctor evaluation. On the other hand I know now that it could an onset stage symptoms, so I need doctor who could evalaluate a car 'while it still moving' rather then when 'the wheels came off'. It could be tricky though because as I understand there are no official guides on CFS.
I am very sensitive to budget so would ask different sources before spending anything. Actually I have done just that when asked you about immunoglobulins. It would be unwise to spend a lot of money on unproven staff and therefor not be able to afford for example Valtrex.
On the other hand there are some things that costs few dollars but could be beneficial and safe. For example Lauric acid or Lactoferrin.
 

heapsreal

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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.

Im guessing this is suppose to be medical advice, i just cant see where your telling the patient to take antivirals or even a dose.

I do see where your giving advice to see their doctor about antivirals, this seems very sound advice your giving, considering that one needs to be monitored when on these medications. Unless its seen as bad advice to tell someone to see their doctor about certain treatments.

I actually cant recall @SOC giving actual direct medical advice, only mentioning her own and her daughters experiences as well as passing on her knowledge of what she has researched, which many of us do, if we didnt then there wouldnt be a forum. I do recall soc mentioning quite regularly about the need for constant monitoring and blood testing done by ones doctor. This being very appropriate advice from a well informed patient who cares about others safety and wellbeing, who also understands their suffering and need of a treatment to regain their life back.
 
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Questions )

I have a long conversation with my doc yesterday and his main points are
1. No one (at least in Ukraine) could say have I CFS now or not.
2. It would a great stupidity even to consider using Valcyte without 100% confidence that I need it. Adverse effects list is too long for that.
3. He willing to consider immunoglobulin, interferon (Pegasys), and Valtrex treatments even without that confidence level because of much lower hazard to health they could bring.
4. We agreed to return to this discussion when I settle my methylation cycle with B12 supplements or when new symptoms occur.

So the question - as I understand I should consider Valcyte only in case when my CFS caused by CMV or HHV6.
As I mentioned early I dont have CMV at all. I have tested positive with PCR HHV6 only in saliva and in low numbers (my docs said), 2 tests for PCR in blood was negative.
My EBV is marked positive for igG EBNA and VCA, negative igG EA and igM VCA, no PCR DNA in blood and saliva - which my doc attributed as past infection, typical for healthy subjects. He see my test result combined as pretty normal and not indicative of any problem, light fever and lymph nodes are just unexplained thing.

Are there any test or something how I could exclude or diagnose HHV6 as a cause of my problems ?
Or maybe my problems with lymph nodes, fever etc could disappear when I sort out B12 deficiency ?
Is it wise to wait until B12 kicks in ?

Thank you in Advance ! )
 

minkeygirl

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Start on whatever you can as soon as you can. Delaying does not help And Imo there is no benefit to wait for new symptoms.

If your doc is willing to give you gamma globulin I'd do that. I've been trying to get it for ten years. Many people her get it and have good luck with it. Check out ema and daffodil.

Also, with my limited knowledge there is no reason to wait for b12 to work before starting any other treatment. They're two different animals.

If your Doctor doesn't want to do valcyte have him look into famvir, valtrex or acyclovir. There is some thinking that we have virus not known so antivirals can possibly help them. I did well in Acyclovir and also know famvir is helping me.


I am not diagnosing.
 
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Thank you )
I've read also some info on diagnostic tests for hhv6 and understood that there are no reliable tests available. So only path available is trial and error.

I am concerned about immunoglobulin treatment because it's made of human blood and there are some risks to get an additional infection from it.

Surprisingly there are a bunch of immunomodulating products made exclusively for local market. With claims set high but no reliable trials behind it. Some of those products could be beneficial, who knows. One of the doctors that have a good practice here recommending one of this drugs to treat cmv infection. Product based on peptides and have claims to boost nk cells activity.
 

heapsreal

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Thank you )
I've read also some info on diagnostic tests for hhv6 and understood that there are no reliable tests available. So only path available is trial and error.

I am concerned about immunoglobulin treatment because it's made of human blood and there are some risks to get an additional infection from it.

Surprisingly there are a bunch of immunomodulating products made exclusively for local market. With claims set high but no reliable trials behind it. Some of those products could be beneficial, who knows. One of the doctors that have a good practice here recommending one of this drugs to treat cmv infection. Product based on peptides and have claims to boost nk cells activity.

Yes there's a few good immune mods u can get in the ukraine. Probably alot cheaper than what we can buy online compared to yourself locally.

cycloferon is something I have tried and it did help me as well as it increased my nk function. It helped for a couple of months but I think we get some type of tolerance to their effects. Maybe changing to another immune mod like arbidol for a month or so and another I haven't tried but would like to is called immunofan.

Interferon inducers are the broader name for them. Hard for us english speaking people to find info on these interferon inducers but I have found some. If u find any good info and able to translate, it would be appreciated.

cheers
 

msf

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Hmm, I think this thread has become rather confusing - it's not clear to me that Andey has a disease like the one most of us have. If he does, he is in an unfortunate, but common, position, that of not being able to see one of the very small number of well-respected ME docs. If this is the case, it might be wrong to suggest any treatments, but I don't think it would be wrong to tell him to look into different ME doctors approaches, and see what makes most sense to him, and whether he can get his doctor to prescribe any part of that regimen.

I appreciate that Prof. Edwards is conservative when giving advice, as a doctor who isn't seeing a patient should be, but I think the idea that every patient should shy away from doctors who prescribe either antibiotics or antivirals for ME-like diseases is not something I would agree with as a patient. I believe Prof. Edwards was referring to the difficulties there are in diagnosing things like Lyme, but those difficulties do not mean that Lyme or other illnesses do not exist, and it therefore stands to reason that, if you are one of those patients who actually does have one of these infections, then finding a doctor who will diagnose and treat it is probably a good idea.

Obviously, you have to weigh up the risks and costs against the possible benefits, but for a lot of ME patients with no prospect of alternative treatment or spontaneous remission, it is a chance worth taking.
 
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Ive read a few local articles about treating CFS.
Common approach is to detoxify, detoxify, detoxify then... detoxify again ). Then start short term IVIG and interferon therapy (+Inosine sometimes).
Interferon inducers concluded to be too weak while main treatment is ongoing because virus infection is already pushed immune system to overdrive. Inducers more suitable for healthy people to prevent seasonal diseases.
Unfortunately authors of those papers are from other cities but I would try find somebody locally.

The supplement that I am interested in is Erbisol which is not marketed as inducer.
http://www.erbisol.com.ua/publications.php?id=3&idlink=0&lang=eng&idleft=0
It was marketed as a wunderwaffe drug initially but hype fall and its unknown whether its effective or not. They even use it for anticancer treatment. But effect that was claimed looks suitable for CFS - increasing both CD16+CD56+ and CD16- CD56+ activity (who knows what it means) and shifting from Th2 to Th1. IM injection form.
I am considering now to give it a try, little bit concerned about IM injection because never done it before.
 

heapsreal

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Ive read a few local articles about treating CFS.
Common approach is to detoxify, detoxify, detoxify then... detoxify again ). Then start short term IVIG and interferon therapy (+Inosine sometimes).
Interferon inducers concluded to be too weak while main treatment is ongoing because virus infection is already pushed immune system to overdrive. Inducers more suitable for healthy people to prevent seasonal diseases.
Unfortunately authors of those papers are from other cities but I would try find somebody locally.

The supplement that I am interested in is Erbisol which is not marketed as inducer.
http://www.erbisol.com.ua/publications.php?id=3&idlink=0&lang=eng&idleft=0
It was marketed as a wunderwaffe drug initially but hype fall and its unknown whether its effective or not. They even use it for anticancer treatment. But effect that was claimed looks suitable for CFS - increasing both CD16+CD56+ and CD16- CD56+ activity (who knows what it means) and shifting from Th2 to Th1. IM injection form.
I am considering now to give it a try, little bit concerned about IM injection because never done it before.
I dont think any of these immune type substances are cures but used in combination with other treatments they could be helpful especially if they dont break the bank.

Here is a couple of links i have to info on the different russian immune mods i have found, hopefully u find them helpful.
http://www.cytoluminator.com/cancer-photodynamic-therapy/interferons inducers russian study.pdf
http://www.biomedservice.ru/en/news..._home_immunomodulators_of_the_last_generation