Viral CFS- A Possible Cure - MY STORY

I have posted several times in this forum, but I thought I would share my story, so it would be visible to more people. My hope is that all of the research and time I spent trying to figure out CFS will be helpful to someone else. I also wanted to have only one post to check, so I can come back and answer any questions that people may have. So here goes....

The development of CFS can be triggered by almost anything that puts too much stress on the body, whether it be a bad virus, a coma, a death of a loved one, an auto accident, or over-exercising or training in sports.

http://www.cfids-cab.org/MESA/ccpccd.pdf

Once the autonomous nervous system takes a hit, your entire pituitary-hypothalmic-thyroid-adrenal system goes off line, and it has a cascading effect on your immune system and your hormones.

http://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis

The misregulation of this system is what causes many of the symptoms of CFS. Once the system is out of whack, your immune system down-regulates which causes any latent infection that you carry within your body, such as any herpes viruses (including simplex 1 &2, varicella, EBV, etc.) or bacteria (mycoplasma, lyme, etc.), to rise up and have a party. The re-activation of these infections causes additional CFS symptoms. Once stuck in this mis-regulation cycle, the body gets stuck and can't get out of it unless there is aggressive and early intervention.

I developed CFS, also known as CFIDS and ME (myalgic encephalopathy), after being in a coma due to an infection with pneumonia in 2006. I was 34 years old at the time with a new baby when I caught pneumonia and almost died. After the coma and hospitalization, one day at home while still trying to recover, I suddenly found that I could not sleep, even though I was exhausted. My brain felt wired despite the fact that my body was tired. I had muscle pains, too, and slowly began developing additional symptoms. Eventually, I had a laundry list- brain fog, nausea, insomnia, tingling in my feet, headaches, dizziness, electric zaps in my teeth, post-exertional malaise, anxiety. Having previously been an attorney working in the healthcare field, I recognized the symptoms as CFS symptoms.

I went to my primary care doctor and told her my suspicions. She asked me if I had ever had EBV in my life. I told her I had it in high school, and she said that if I had CFS, the indicators for past infection with EBV would be super-high on a blood test. We tested, and sure enough that was the case. Since she had no experience with CFS, she recommended that I go somewhere else, so I ended up at the Fibro and Fatigue Centers.

At the center, they out me on heparin and then coumadin shots to thin my blood for several months before we tested for my infections. When you have CFS, many infections hide in clumpy blood and will not show up on a blood test even though they are active. When we finally tested my infections, they found that I had EBV and HHV-6 (another herpes virus). Luckily, I had no bacterial infections.

Along with my other symptoms, I had developed severe pain in my legs and my back. My doctor told me that such pain could be a symptom of low thyroid even though my thyroid tests appeared normal, because in CFS when your system goes off-line, your body becomes less astute at converting the thyroid T-4 you are making to the thyroid T-3 usable by the body. Of course, with thyroid hormone, it has to be added very slowly to make sure there are no heart issues. My doctor put me on compounded T-3, and when we upped it to the right dose, my pain in my legs and back magically went away. This was my first success in treatment, despite taking many vitamins and supplements for several months.

Then, my doctor put me on Famvir. Famvir is a strong anti-viral usually prescribed for people who have herpes simplex 1 or 2. Taking the Famvir made me feel incredibly sick. I felt like my CFS was getting worse, and I panicked and went back to my doctor. He explained that it was the phenomena that I had read about known as die-off. When you have CFS and you start treating and killing the infections, and all of the dead bacteria release toxins which make you feel horrible. After several weeks of awful die-off, my CFS symptoms started improving, and after about one year of taking Famvir and later Valtrex, which is similar to Famvir and for herpes, I was at about 75% of my former self. I was able to work part-time and only needed to nap about 1 hour per day. Of course, I was still fatigued and had flare-ups if I over did things, because I was not 100%.

Then, in 2008, I started back-sliding. I felt like I was getting worse again. My doctor recommended that I try an experimental antiviral called Valcyte. Valcyte had been shown to help CFS patients in a study by Dr. Jose Montoya at Stanford.

http://chronicfatigue.stanford.edu/

Normally, Valcyte is only used for AIDs patients with herpes, but since the immune system is so weak in CFS, Montoya and others theorized that it could help with CFS. I took it for 10 months. Apparently, it is so toxic, you have to have your liver monitored while you take it, and can only take it for brief periods. Well, talk about die-off!!! I felt as horrible as I had when I first got CFS, maybe worse. It was hell for several months, but after that I slowly got my life back. Within 3 months after I finished my 10-month course, I was in full remission. My CFS was gone, and I no longer needed thyroid medicine to prevent leg pains. It was a miracle!!

I later found out that Dr. Martin Lerner, a doctor in Michigan, has been using anti-virals to help give patients near or complete remission for years, but because he was a local doctor, no one has paid him much attention. I have never visited his office, but I believe that he is the one who truly pioneered this treatment.

http://www.treatmentcenterforcfs.com/

Unfortunately, there are limitations to this good news. In order for it to work, you have to only have viral infections and not bacterial infections with your associated CFS. Also, the earlier you attack this, the more likely you will achieve remission. The longer you have CFS the more likely it is permanent. But that being said, you can regain a significant amount of your functioning by killing viral infections in CFS, even if you don't get full remission and feeling 75% better is worth it. Even before I achieved full remission, I was enjoying life again due to the Famvir and Valtrex.

If you have any questions, please post away. I just wanted people to know that there is hope for feeling better from viral CFS as long as you pursue it and become an advocate for yourself.

Loopy Pig

You may need to find a doctor who is open to learning about it. Print out the study by Dr. Montoya at Stanford and show it to him.

I had the very same symptoms.  So tired I had to decide if a bath or shower seat for bathing was the most tiring.  Flu like symptoms that came on every 3 or 4 weeks.

Finally found a doctor (Infectious Disease) ..tested me for retroactive viruses.  Showed EBV, mono from high school, chicken pox,  and a retroactivated HHV-6, reativated roseola I had in infancy.  I went on Famvir then Valtrex for at least a year. Flexeril to sleep deeply.  Hypothyroid meds (synthroid) until thyroid balanced out which no one thought it would but it did.   At first had the awful virusy flu like symptoms bad.  After a month or two started to feel better, more energy.  Took a year or so but am what I would call almost normal.  Can hold a job.  Never thought I could do that again.  Also he put me on 15 gr Prednisone to keep immune system from attacking itself .  I would never do prednisone again I would just try anything else, maybe MS meds.  Prednisone is nasty, fat pockets on back and hump on back of neck, huge fat accumulation on stomach, thighs, arms, chest, moonface.  These are permanent an I'm getting a tummy tuck after 14 years of trying to diet it off.  Might have to take Valtrex for life but there seem to be no bad side effects after 15 years.  Try an infectious disease doc.  University of Wi is doing work with HHV-6, too.

Hi - do you know of any doctors in the Virginia area who treats cfs with antivirals? I'm at a loss. Many thanks.

REF: Post from Bookworm12. You have developed CUSHING SYNDROME. This is a result of long term steroid use (Prednisone) This causes elevated levels of the hormone Cortisol (the stress hormone). Physical changes include all mentioned above, buffalo hump, moon face, and a redistribution of fat in the body. This is a very difficult diagnosis for a physician to make but in actuality it shouldn't be. It requires a high level endocrinologist. High levels of Cortisol will also begin to cause mood swings & many patients will go on to develop psychiatric disorders. Sadly, it's not recognized until it's too late.

I have a very similar story. How did you manage to get rid of the insomnia?

I took remeron, melatonin and seriphos for the insomnia. Once I gained remission, my insomnia dissipated, and I was able to sleep.

I had night sweats, which may have been from fevers. I have read that fevers are common in CFS, but I never noticed any during the day. The anxiety and high temps can be caused by excess cortisol being generated by your adrenals. Adrenal dysfunction is a hallmark of CFS. I had the anxiety, also. It went away as my CFS went into remission.

I took Plaquenil for my chronic hives for several years. Finally, I stopped the Plaquenil, and the hives never came back.

Hi loopy pig , it's so nice to hear success stories on Valcyte!! Are you still in remission? I finish my 15 month course next week and not sure what to expect. I also don't have any co-infections. Just EBV and HHV6. before Valcyte I had absolutely no life, completely bed ridden, unable to tolerate reading, listening to music etc. Within 10 months of getting sick in 2009 I was already needing a wheelchair. Three months on Valcyte (2013) and things changed drastically, I was able to have a bit of a life and get downstairs in my house, 9 months on Valcyte and I started to drive a little bit (3 years without being able to drive). I went downhill in the Fall and couldn't understand why since i was still on Valcyte, turns out that relapse was due to chronic carbon monoxide exposure! Getting better again but still functioning at only 30% of normal. I have to sleep 2-3 hours in the afternoon and can leave the house a couple of times a week. I still can't get my own groceries but can walk about 100-200 steps in a row on a good day. I am currently on Famvir as well. I was lucky that our insurance paid for the Valcyte. Reading that you improved after finishing the Valcyte is so exciting and I hope it happens to me as well!!

Hi lilicat, you might have seen my post on HHV6 foundation forum and Phoenix rising under RUkiddingME. I think you will perk up soon. At the three month mark I came back to life on Valcyte after being bed ridden up to nine months at one time. It surprised me as well, having not used my legs for so long that I could finally stand up and get down stairs. My journey is described here http://forums.phoenixrising.me/index.php?entries/valcyte-2013-14-month-15.1587/

Wishing you the best of luck! I look forward to seeing an update from loopypig to see if she is still remains in remission after the Valcyte

First time posting on any site. I've been fortunate enough to live near by Dr. Lerner. I became disabled at age 50. Before then was working and took care if my home and family. I've been having trouble with my knees for years and decided to get a total knee replacement at 48 but, instead had to have an emergency colon resection due to diverticulitis. I was so inflamed that the surgeon could not perform the less invasive technique so he had to cut me open and had to take 9 in. Of my sigmoid colon. I had to get a blood transfusion which by the way cannot detect viral infections. After a long recovery I finally got my knee replaced and went to PT for about 3 mo. and feeling good. Started having a lot if trouble with stomach caused from adhesions and would fine myself in the hospital with that terrible tube down my nose to release all the toxins in my stomach because I was unable to have bowel movements. Finally about 9 mo ago I don't have to much trouble maybe because the adhesions went down or the meds that I have been on with Dr. Lerner. To get back before Dr. Lerner came into my life I also was diagnosed with degenerative disc disease and my whole body was a mess. My lower spine will eventually need surgery and I also need neck surgery. Then came the CFS! I started not to be able to have any energy after 4:00 and just wanted to be left alone. Then a few months later I laid in bed almost all day just staring at the wall and just listening to myself breath. Absolutely no motivation. Could not do any housework, grocery shopping, cooking, stopped watching TV, very sensitive to noise and smells. I finally went to my doctor and told her I felt like I was dying. She did the Elisa test and it came back as late stage Lyme disease. I went to one IFD doc at U of M and didn't believe in Lyme and said in his 30 years if practice he only saw 2 cases of Lyme disease and said there isn't Lyme disease in MI. If it did show up
Positive he would only treat me for 2 weeks IV antibiotics. My Lyme came back negative as he only tested one titer and sent it to a lab that I never heard off. Then the same day he told me that I did not have it I already had an appointment with the famous Dr. Lerner. I was tested at a very reputable lab and he follows the CDC rules of testing and It came back positive for Lyme with 5 titers out of ten, plus EBV, HHV6. Mycroplasymia pneumonia. He right away started me on IV antibiotics for 6 weeks 3 x a day. I would have a home nurse come in once a week to clean and check my IV. Then he started me on amoxicillian oral but I had a reaction, I also had a reaction to famvir. I'm currently on Clairithomycin 500 mg 2 x a day now for about a year and I'm happy to say he has my Lyme and EBV in remission. Still very fatigued and a lot of pain from HHV6. I then started Cidofovir infusions every 2 weeks at Beaumont Hos. but after the seventh infusion my HHV6 numbers didn't budge and I started having trouble with heart palpitations. Now whet I'm at today. After infusions he started me on valcyte 2 x a day now for 2 weeks and suppose to add a third pill, 450 mg now. I had a good 4 days this week and did work in my garden for about 30 minutes, went to the market and did some laundry and my brain is a lot more crisp. I actually felt like me that I have missed so much but, today after showering I started with the horrible pain all over and could not even stand on my swollen knees. Back in bed for me. That's what happens as you all know. I'm sorry this post is SO long but this is such a lonely battle and your friends and family start getting tired of hearing about it. I'm back to watching a few shows on TV and started researching on the computer. I was just happy to read the first post on here where the lady had success after 10 mo on valcyte. I can't believe this happened to me and it has taken the inside of my body and damaged it to the point of being disabled with a few more surgeries in my future. However I feel blessed that I have Dr. Lerner as my very concerning doctor that is only a 45 min drive for me. He is 83 maybe 84 years young and had CFS himself years ago and treated himself and look at him now. Traveling to teach his knowledge of research he has done and winning grants for his work to continue his research. I may be suffering today but, feeling confident that I am in Dr. Lerners hands. It only took me one week to get an appt with him. Again sorry so long, not to often I get to talk about this. I apologize for my incorrect grammar because again if you have CFS out brains don't work as well as they use to. Good Luck and I will pray for the people struggling to find a good doctor.

I cannot thank you enough for sharing your story, and checking in on this thread to keep it current. I contracted Lyme and Babesiosis. I responded well to those treatments. In 2008 after no treatment for almost a decade, but left in a semi-functional state of chronic fatigue, I contracted Influenza B. Nothing has been the same since. Re-treatment of Lyme and Babesia offered partial improvement. Being diagnosed and treated for POTS has offered some more. Limiting diet and environmental exposure and treating Mast Cell (MCAS) has offered some more. And treating low thyroid function with T3+T4 formula (Nature-throid) has also helped. But nothing so far has lifted me past symptom management. I met Dr Lerner 4 weeks ago. While all tick-borne disease labs were negative, I had 5 labs come back positive - EBV, CMV, HHV6 Mycoplasma Pneumonia (I have known history of this) and Chlamydia Pneumonia. I am afraid I do not understand the lab values yet to share anything more specific. I did have oscillating t-wave as he expects to see. I am to begin Cidofovir treatment at W. Beaumont Hospital in 3-4 weeks. I am feeling quite blessed right now as I just returned to Detroit after being gone for 15 years and moved into a house that is less than 3 miles from his office and the hospital. Dr Lerner is wonderful to work with. I am hopeful for the first time in a long time.

Loopy Pig - Are you still out there?

I posted a few days ago re: Valcyte for EBV. (I am from the Lyme forum as you will note from my post.

Any input from anyone would be appreciated.

Thanks,
Elaina

Loopy, thank you SO VERY much for your post!!!! I went to an integrative ARNP a few months ago and she found high titers to EBV and two other viruses. EBV is a very dangerous virus and many main stream docs do not believe in chronic fatigue..... still.... I posted somewhere on this forum asking if others had this problem and didn't get any responses. I was shocked that no one had anything to say. I tried to find it unsuccessfully, but with my brain fog, who knows where the post was.

I've had so many health problems, colitis, and now Sjogrens syndrome (which is also associated with EBV). As soon as I am done with some antibiotics for a bad UTI, I am going to start on the Vancyclovir (sp?). I am also on plaquenil. But for me the pain and fatigue are bothering me more than the Sjogrens dryness. I am hoping that through the anti virals, this crap will go away. My original mono when I was 19 was not that bad, but as we age, they can apparently get re activated.

It's a shame the medical community has been so negligent in treating this disease. Back in the 80's they suspected EBV but didn't have anti virals in the early 80's.

Again, thanks so much for your article. Best of luck to you.