Mitochondrial tests and treatments

[Mij]

How long did it take for you to get to 80%, and how long were you at that level before you took immunomodulators, thx.

I would say around the 6 year mark I slowly started to improve. I should also mention that I started running a little at that time which I shouldn't have been doing because that was when PEM started- I didn't understand what it was back then. I would say around the 8-9 yr mark a Virologist rec'd I take Imunovir based my CD4, CD8 etc counts. I took them for 3 weeks and started feeling neuro/viral type symptoms and within one month I woke up one morning feeling very unwell, I went out to do some errands but within a couple of hours I could no longer walk and I was stuck on a downtown street. It happened that fast. Things just changed from there. Was it a viral reactivation? Was it an immune response? Who knows. The Virologist didn't know either. I prefer to leave my immune system alone from now on. What I really benefited from was magnesium and taurine injections. I took them on and off for years.

You have to have an experienced ME/CFS doctor who monitors you before and during treatments with proper testing put in place. There are many who benefit from taking anit-virals and immunodulators so you can't rule it out.

 

[Mij]

Replying to title of your thread. I had an Organic Acids Test done and it showed below normal levels in the Energy production section. This is where I feel the magnesium and taurine injections helped.

 

[Dr.Patient]

I would say around the 6 year mark I slowly started to improve. I should also mention that I started running a little at that time which I shouldn't have been doing because that was when PEM started- I didn't understand what it was back then. I would say around the 8-9 yr mark a Virologist rec'd I take Imunovir based my CD4, CD8 etc counts. I took them for 3 weeks and started feeling neuro/viral type symptoms and within one month I woke up one morning feeling very unwell, I went out to do some errands but within a couple of hours I could no longer walk and I was stuck on a downtown street. It happened that fast. Things just changed from there. Was it a viral reactivation? Was it an immune response? Who knows. The Virologist didn't know either. I prefer to leave my immune system alone from now on. What I really benefited from was magnesium and taurine injections. I took them on and off for years.

You have to have an experienced ME/CFS doctor who monitors you before and during treatments with proper testing put in place. There are many who benefit from taking anit-virals and immunodulators so you can't rule it out.

This illness is fxxxing weird!!! Same thing with me, I didn't even know what happened until after a month into my relapse, and then suddenly it dawned on me that I was jogging a month prior! It took that long for it to show up! If it showed at least the next day, I would have thought about jogging causing it. This is bizarre!!!

In retrospect, if you and I did not exercise, we wouldn't be in this condition.

Antivirals and immunomodulators may help some people, but I don't know if there is a way to know beforehand if they will help.

 

[Dr.Patient]

Replying to title of your thread. I had an Organic Acids Test done and it showed below normal levels in the Energy production section. This is where I feel the magnesium and taurine injections helped.

Do you have a link to that test?

 

[heapsreal]

This illness is fxxxing weird!!! Same thing with me, I didn't even know what happened until after a month into my relapse, and then suddenly it dawned on me that I was jogging a month prior! It took that long for it to show up! If it showed at least the next day, I would have thought about jogging causing it. This is bizarre!!!

In retrospect, if you and I did not exercise, we wouldn't be in this condition.

Antivirals and immunomodulators may help some people, but I don't know if there is a way to know beforehand if they will help.

theres is no way to know other then to try them.

Valcyte i agree with you is radical as it requires alot of monitoring of blood work etc while on it but other antivirals such as famvir and valtrex i wouldnt put in the same league. They are proven for long term use in supressive therapy of other herpes infections and blood work monitoring isnt as aggressive as it would be with someone on valcyte.. If there is some type of clue that the patient has an ongoing viral infection with ebv/cmv etc, then a few months of antiviral treatment i think is worth a shot and not too radical.

 

[Dr.Patient]

You did not recover 100% if you relapsed after returning to physical exercise. This is a common misconception.

I had a sudden viral onset and also thought I recovered after 8 months with no treatments. I returned to work and started running again. I went downhill from there and that was 23yrs ago.

I'm sorry, just to clarify, you had post viral fatigue, and after 8 months you recovered. Then you started running, and then 6 yrs later, you went down and got the immunomods at that time?

 

[Dr.Patient]

theres is no way to know other then to try them.

Valcyte i agree with you is radical as it requires alot of monitoring of blood work etc while on it but other antivirals such as famvir and valtrex i wouldnt put in the same league. They are proven for long term use in supressive therapy of other herpes infections and blood work monitoring isnt as aggressive as it would be with someone on valcyte.. If there is some type of clue that the patient has an ongoing viral infection with ebv/cmv etc, then a few months of antiviral treatment i think is worth a shot and not too radical.

Agree with Famvir, Valtrex, and acyclovir.

 

[Mij]

I'm sorry, just to clarify, you had post viral fatigue, and after 8 months you recovered. Then you started running, and then 6 yrs later, you went down and got the immunomods at that time?

I had a viral infection that attacked my thyroid. After 8 months I felt 95% improved (not recovered, but at the time I thought I recovered), returned to work and started running a little to get back into shape. I didn't feel quite right after exercise- but no PEM. I would say within 3 weeks of returning to work my equilbrium was off and my energy levels were decreasing. After 4 weeks I could no longer stand upright or walk. I was disabled. From that point it took 6 yrs to reach 80%. I started running again and this is when the PEM started. Then I got on immunods and went downhill and developed OI.

 

[Mij]

Do you have a link to that test?

I had it done in Canada but there are labs in the US that do this.

 

[Mij]

@Dr.Patient wrote "In retrospect, if you and I did not exercise, we wouldn't be in this condition."

Well we would be in much better condition, put it that way. I regret it but I didn't understand the damage it was doing at the time, unfortunately.

 

[Dr.Patient]

I had a viral infection that attacked my thyroid. After 8 months I felt 95% improved (not recovered, but at the time I thought I recovered), returned to work and started running a little to get back into shape. I didn't feel quite right after exercise- but no PEM. I would say within 3 weeks of returning to work my equilbrium was off and my energy levels were decreasing. After 4 weeks I could no longer stand upright or walk. I was disabled. From that point it took 6 yrs to reach 80%. I started running again and this is when the PEM started. Then I got on immunods and went downhill and developed OI.

Thank you for that, appreciate it! I am 2 years into your 6 yr period. Your experience will definitely help people understand the dangers of exercise.

 

[Dr.Patient]

@Dr.Patient wrote "In retrospect, if you and I did not exercise, we wouldn't be in this condition."

Well we would be in much better condition, put it that way. I regret it but I didn't understand the damage it was doing at the time, unfortunately.

It is beyond human comprehension how bizarre this illness is with the delayed PEM! Physicians should advise patients about this danger!

 

[end]

Yes, I would say I improved to 80% 14yrs ago but had a terrible relapse after taking immune modulators. I never went back to base after that, instead I developed OI and the illness changed is the best way I can describe it. An ME (CFS) specialist told me years ago that every time we have a relapse our chances of improving becomes smaller.

I would suggest you don't do aerobic type exercise because if you experience PEM you will slowly over time get worse.

Hi @Mij

Was that when you took the immunovir that you told me about? Have other TH1 increasing supplements/meds since then caused the same sort of exacerbation?

 

[Gingergrrl]

It is beyond human comprehension how bizarre this illness is with the delayed PEM! Physicians should advise patients about this danger!

@Dr.Patient, Most physicians are actually telling patients that they should exercise. My cardiologist wanted me to see an infectious disease specialist a few months ago (b/c she fully supports my CFS diagnosis but doesn't know how to treat it.) I had a whole list of questions and planned to ask the ID specialist about Valtrex for treating EBV versus natural anti-virals.

He proceeded to tell me that CFS did not exist, that re-activated or chronic EBV did not exist, and that I needed to exercise. I had my blood test results with sky high EBV titers (IgG, IgM and Early Antigen) which should not have all been high since I had mono two years ago. He would not even look at my papers.

My HR just walking slowly from my car to his office was at 148 on my HR monitor and I asked him how I was supposed to exercise? He had no alternate diagnosis for my symptoms (since he said CFS did not exist) and dismissed that my cardiologist, endo, and naturopath had all independently given me this diagnosis.

He thought I was "seeking" Valtrex which I absolutely was not. I was actually scared of the anti-virals and just wanted his opinion on it as a treatment for EBV but what I got was the most condescending, patronizing speech of my life about exercise as the cure. I left his office in tears, more hopeless than I had ever felt and obviously never went back.

I wondered if I were a man or if my husband had been with me, would he have spoken to me that way?

 

[AndyPandy]

@Dr.Patient, Most physicians are actually telling patients that they should exercise. My cardiologist wanted me to see an infectious disease specialist a few months ago (b/c she fully supports my CFS diagnosis but doesn't know how to treat it.) I had a whole list of questions and planned to ask the ID specialist about Valtrex for treating EBV versus natural anti-virals.

He proceeded to tell me that CFS did not exist, that re-activated or chronic EBV did not exist, and that I needed to exercise. I had my blood test results with sky high EBV titers (IgG, IgM and Early Antigen) which should not have all been high since I had mono two years ago. He would not even look at my papers.

My HR just walking slowly from my car to his office was at 148 on my HR monitor and I asked him how I was supposed to exercise? He had no alternate diagnosis for my symptoms (since he said CFS did not exist) and dismissed that my cardiologist, endo, and naturopath had all independently given me this diagnosis.

He thought I was "seeking" Valtrex which I absolutely was not. I was actually scared of the anti-virals and just wanted his opinion on it as a treatment for EBV but what I got was the most condescending, patronizing speech of my life about exercise as the cure. I left his office in tears, more hopeless than I had ever felt and obviously never went back.

I wondered if I were a man or if my husband had been with me, would he have spoken to me that way?

I have had similar experiences. Having my husband with me made no difference. The arrogance and ignorance of these people is astonishing.

 

[Gingergrrl]

I have had similar experiences. Having my husband with me made no difference. The arrogance and ignorance of these people is astonishing.

@AndyPandy I agree. And I love your new avatar picture of you on the beach! Very cool!

 

[Valentijn]

I wouldn't see IV antibiotics as radical, when a long-term bacterial infection has been found.

We don't try these things randomly. We get tested, and use the accepted treatments for what turns up.

I'd rather risk side effects than see my ME continue to get worse. It's called "treatment" and is a core concept in medicine.

 

[Valentijn]

I wondered if I were a man or if my husband had been with me, would he have spoken to me that way?

The neurologists did even when my fiance was with me

 

[Mij]

Hi @Mij

Was that when you took the immunovir that you told me about? Have other TH1 increasing supplements/meds since then caused the same sort of exacerbation?

yes it would have been the Imunovir.. I took Equilibriant and Inosine a couple of yrs ago and thought I was having some sort of reaction to it, but it turns out not to be the case.

 

[end]

Is it normal in wanting to reach across the desk and whacking the ignorant & arrogant so and so?!?

Had a dose of this debacle today. Was in tears later on. It has been a while since I last had this kind of thing happen