Which difficult to obtain treatment would you most like to try?

[Jesse2233]

@David's

Wow what a story

Did you ever have any positive autoantibody titers? What about pathogen titers? And what was your IVIG dose?

In other autoimmune diseases when IVIG or RTX aren't successful sometimes they'll try plasmapheresis, steroids, CellCept, Imuran, or Cytoxan (understandable that you'd not want to do anything else given all the treatment you've endured).

 

[David's]

Here is something that is interesting to me. During the first three months after my first symptoms started I never tested positive for ANA. Then at the fourth month Labcorp tested me positive but Quest did not . Then at the one year mark both tested me positive. The RNP auto was showing up but nothing else. FIve different Rueumy doctors said it did not mean anything. Yet it is the only thing I keep going back to as maybe what we have is some form of MCTD that is not fully manifested.

The dose was Gamunex 1000mg per kg every three weeks.

I have tried Steroids( made me worse), Paquenil (no benefit), LDN( Made me worse), Synthoid(Made me worse),Various Famvir/Valtrex drugs, No other immunosuppressants. I figured that I already tried second or third line so why try first line. I also thought that almost every doctor uses similar first line Autoimmune drugs. Surely some people have tried these and if they worked we would know that this is in fact autoimmune based.

Herpesvirus 6 IGG. 1:80 H
EBV Viral Capsid AG (VCA) (IGG) 3.70H
EBV Nuclear AG(EBNA) (IGG) 2.41H
HSV 1/2 IGM Index. 1.10H
PARVOVIRUS B19. 5.1H
MYCOPLASMA IGG. 3.09H
VARICELLA Zoster (IGG) 2.64 H

These are from Quest Lab. Doctors said that these values were not bad and that it did not warrant any action. If you or anyone else feel different please let me know. I stopped taking Famvir right before Rituxmab as I wanted to know if I did get benefit if it was coming from Rituxmab as it may be a lifelong treatment.

Also- I have had Lyme testing twice from Igenex and twice from Genesis. In addition to a lumbar puncture that was negative. Must have had Lyme checked 30 times on different occasions by different labs and all were negative. Even though a LLMD said I had lyme and gave me a prescription for three antibiotics taken together for one year.
I never made it past the first month as it put me in the Hospital. Now unless I have proof of an infection I do not use antibiotics.

 

[IreneF]

So far the only drug that has made a difference for me is Valcyte, and it's helpful enough that I want to stay on it, but I'm far from healthy.

 

[David's]

Have you tried multiple antiviral drugs at the same time ? Taking drugs that compliment each other yet do not overlap treating the same virus. If it is too toxic how do the HIV positives take multiple drugs for the rest of their lives. I see always posts on Famvir / Valtrex/ Valcyte/ but nothing about people taking combinations of other antiviral drugs.

 

[Butydoc]

Have you tried multiple antiviral drugs at the same time ? Taking drugs that compliment each other yet do not overlap treating the same virus. If it is too toxic how do the HIV positives take multiple drugs for the rest of their lives. I see always posts on Famvir / Valtrex/ Valcyte/ but nothing about people taking combinations of other antiviral drugs.

Hi David's,

I suspect the antivirals you suggested all treat Herpes class of viruses where Valcyte may be the most potent. I also suspect that Valcyte may be acting as a microglial inhibitor in many cases rather than as an antiviral.

Gary

 

[IreneF]

Hi David's,

I suspect the antivirals you suggested all treat Herpes class of viruses where Valcyte may be the most potent. I also suspect that Valcyte may be acting as a microglial inhibitor in many cases rather than as an antiviral.

Gary

What he said. I'm taking other anti-inflammatories, too. There is less evidence for an ongoing viral infection (altho who knows) and more for chronic inflammation in the brain (microglial activation).

 

[rodgergrummidge]

I do not post often but wanted to on this post because Jesse does a great job of researching different topics.

@David's Thanks for sharing your story and your thoughts. While you did not find a cure, know that your story provides all of us here at PR with the courage to battle this insidious and devastating disease. Thankyou.

Rodger.

 

[David's]

Rodger-Thanks for the kind words. I was just trying to provide insight into my journey to finding a cure , I am in a unique position that I contracted the illness the first month after I retired so I had the finances to do things most people could not undertake because every Non-FDA theropy is out of pocket. What I found is a lot of hype for treatment that do not work and so wanted others not to chase everything they read, (Very hard for me to do). I am not saying that people should not pursue leads but know the likelihood of success is low. I was convinced that this illness was Autoimmune as my first cousin has polymysitis and my niece has MS, I was convinced it has some type of genetic component as parts of my family have autoimmune.

I like everyone else hope someone can come through with some research that will help all of us. Those that are severe CFS and still go on with life are real heros to me.

 

[Jesse2233]

@David's given your experience what do you believe to be your illness' cause at this point (if not autoimmune)?

 

[David's]

Jesse- A simple question but not an easy answer. At first I thought it was viral as my onset was acute and so it made sense that something like a virus would come on.so quickly. But then I think back and realize that for a long time I loved to nap after a good workout. It made me think that maybe this illness was there just not fully developed. So then I switched to autoimmune as it takes years to diagnose some diseases. That started me down the Autoimmune therapy route and off the viral route. I then noticed that depending upon what my sugar and caffeine intake my energy level rose or fell. So my current belief is that our metabolism is not working right and this is affecting everything . I just am not sure this is the only thing wrong with us as does metabolism go wrong in people that have MS or Lupus or any of the other diseases where fatigue comes into play. I am not sure if it is a secondary down stream effect and not the primary. I do absolutely believe that we are many different causes as so many illnesses are hard to diagnose meaning we are all not the same . What works for one may or may not work for another. For me CFS/ME/FM is a dumping ground for any person that does not have the classical hallmarks of the person's disease.

 

[perovyscus]

Hi, David. You've certainly gone through the ringer. Thanks for being a pioneer.

A subset of CFS is caused by a stressful event or genetic predisposition to deterioration of the blood brain barrier, causing an inappropriately localized response to the replication of neurotropic viruses (or any microbe) at the midbrain and reticular activating system. Since the attack is B-cell mediated, limited reactive oxygen species are generated, and no demyelination occurs, nor grey/white matter changes. The side effects and downstream mechanisms of this are expansive, but it essentially amounts to network congestion at critical junctures for wakefulness and afferent sympathetic output. Since exercise raises these cytokines from physical muscle damage, it fits PEM as well.

It is almost impossible to test for, and almost impossible to cure (because of the structural defect you will get relapse). I might as well being saying aliens cause it.

• Ampligen is bioequivalent to combination interferon a/b. The success rates are similar and the dissipation of effect follows the same trend.

• I'm floored by 200 mg of ibuprofen and I took 3 mg of rapamycin this morning.

My treatment of choice would be intrathecal infusions of cytotoxic-T lymphocytes to CMV and EBV, or the abandoned ex vivo lymph priming done by Klimas et al. in 2002. These therapies are rational, safe, available and are theoretically curative after a few infusions, making them affordable (<5k). They'd need to be approved in a place where the barrier to entry is safety, not efficacy.

 

[voner]

@David's,

thanks for posting. Would you share with us your symptoms?

 

[David's]

The date was Feburary 19, 2014 the day after my back surgery . I felt something wrong in my body but was not really alarmed because I believed it to just be part of the surgery. That night I could not fall asleep which was strange because I never had sleep issues before. My chest muscles under my arms started to ache bilaterally.
Thus began the start of this life changing illness. Over a period of months things got worse and I will list them .

1)No sleep - get out of bed felling like a bad hangover-Fatigue

2) Pain in my muscle groups but mainly in my chest area(Has gotten better with time)

3) Morning Headaches that gradually get better the more the day progresses.

4)Stiffness in my joints more in my arms than in my legs

5) Numbness in my hands that gets worse when I use them to hold things

6)Hands and feet cramp at the end of the day- checked Potassium

7)Senstions on my face like a bug landed on it-very strange

8)Can feel my heart beat in places that are not normal

9)Slight tremor in my hands

10)Can not regulate temperature ( Cold more than hot)

.11) Depression set in (Never had it) but I was determined to not let doctors look at my medical records and dismiss me because I was taking an antidepressant.

 

[Jesse2233]

@perovyscus fascinating description of etiology. Can you say more about how you believe the localized infection ultimately caused problems through b-cells? And how the treatments you propose would address that?

 

[David's]

Perovyscus- I agree with Jesse as your theory makes sense in a lot of ways. For me I always thought there was a blood brain barrier problem as I have high unspecified protein concentrations in my CFS. Can you tell me what is your background as this sounds as plausible as any theory out ?

 

[Gingergrrl]

I decided at the two year mark that I would try Rituxmab. (I still had the belief that this is autoimmune).

@David's Thank you for sharing your story and treatments with us! I was curious when you said that you believed that your illness was autoimmune, did you test positive for specific auto-antibodies, or did something else lead you to that belief? I am curious in trying to compare it to my own history and current trial of Rituximab.

I had six IVIG infusions and not one benefit came from spending the whole day every three weeks getting this put into my body. I never did have CIDP as two other neuros did their tests which were normal.

I was also curious if you did high dose IVIG (for autoimmunity) or low dose? I am guessing low-dose since you were able to do the entire infusion in one day but I could be totally wrong!

Why did the Neuro think you had CIDP? Was it based on an EMG or nerve conduction test or more on clinical symptoms? (Sorry if I missed this part and thanks again)!

 

[David's]

I tested positive ANA and positive on RNP. No other positives but family history of autoimmune illness led me to believe that what I had was some variation of autoimmune disease not fully developed.

The IVIG dose was Gamunex 1000 Mg per KG every three weeks. First dose took two days and then once tolerated done in one day followed by saline. Done in my home by a visiting nurse. One time it took six different tries to find a correct vein. Do not know if this is low or high dose. Dose was 75 GM.

Nerve Conduction test was done and showed some irregularity , Turns out the machine was not running properly or one neuro said my hands should have been put in warm water. The other two NCT were fine so never had CIDP which was a relief.

 

[Jesse2233]

Also @perovyscus how are you doing on the rapamycin and why that dose?

 

[perovyscus]

No problem, Jesse, I am always amazed at your hard at work at collating this information. Keep pressing. I'll update on the rapamycin thread.

David's, that is impossible for me to say one way or another, but that being excess leukocyte debris would fit within the teleology of what I described.

As for treatment, Natalizumab.

===============================

A lot of the regular culprits modify integrity of the BBB in a deleterious manner, especially lipophilic agents like toluene, organochlorines and squalene. Basically, life. The increased B-cell reservoir is a function of chronic stress (I do not mean insult, I mean traditional stress); persistent glucocorticoid activation will cause an imbalanced rebound in the Th2 milieu, otherwise you'd be getting multiple sclerosis instead. TGF-Beta has been found to be increased in CFS patients; and this may be a compensatory mechanism to stop the influx of leukocytes between the endothelial cells.

You need a triumvirate of errors: inappropriate response to stress (that's genetic, HLA-mediated), environmental insult causing damage (the rarest and most critical), and infection (dime a dozen).

I went to medical school before dropping out and getting a graduate degree in biochemistry. I had the best physiology professor(s) in the world my first year of the latter - shout out to her/him anonymously. That being said, a dozen or more people here without any degrees have a better understanding of biochemistry than I do.

 

[erin]

The date was Feburary 19, 2014 the day after my back surgery .

Have you given a blood transfusion during the back surgery?