Viral CFS- A Possible Cure - MY STORY

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Mia333
Regular Member


Date Joined Jun 2014
Total Posts : 27
   Posted 3/27/2015 6:06 AM (GMT -7)   
Greetings, I thought I'd share some of my experience with hopes of helping others and preventing the the long, distressing cycle in getting a cfs diagnosis and a potential treatment for those who fall in the EBV and HHV6 group.

I have had untreated hep c for over 20 years but made sure to keep up on monitoring my liver and viral loads until better treatments became available. For about 15 years I struggled with fatigue getting to debilitating levels around the last 5 years or so. It got to the point where i had to insist on addressing it as my doctor would just continue to blow it off. After pressing to get to the bottom of this fatigue, my doctors felt the hep c was starring us in the face and was lucky that the new miracle hep c treatment had just been fda approved. so i started my 6 month treatment last Feb however as i neared the end of my treatment i was getting worse and especially post treatment.

Thanks to this website and the hep c forum, i was able to compare my symptoms and lack of progress w others. Not only was my fatigue worse then ever i was now getting flu like symptoms, swollen glands, sore throat, achey, this burning tingling pain in my left shoulder, frequent urination and worsening of my brain fog. The symptoms continued to escalate and were occurring pretty much on a daily basis but flucuating.

After continued research i found that my symptoms were spot on with CFS. Then my family practice doc tested and got a positive and elevated EBV test result, which then we did further testing of the entire herpes family, even though i never had the sexually transmitted virus. Tests came back w positive hsv1 and hhv6. i then joined a local cfs/fm support group and got very active in trying to find a specialist that i can afford since disability continued to deny me, was now in a serious financial hardship and health insurance is not an option with any cfs specialists. My attorney and close members of our cfs group provide the name of a cfs specialist in NYC. She was able to confirm a cfs diagnosis and based on my history and viral tests, said i had a 50 50 shot of putting this in remission with antiviral treatment. so i started Famvir, 4x a day. In 2 weeks, it was a miracle, i was like my old self, the sore throat, swollen glands, burning/tingling shoulder pain, ect all subsided, then about a month into treatment, i had a bit of a short term relapse for about 2 weeks and then i bounced back again, now I'm about 3 months into famvir treatment and knock on wood have not had any of the above symptoms though the fatigue is still present I'm about 75% back to myself, I have not felt this good in many years. All of the symptoms, including frequent urination, brain fog, ect have significantly improved, who would have ever thought these symptoms were cfs related.

I have spent so much time, endured much stress and wasted money over the past 4 years going to different doctors, ect getting no where. There is finally some major progress in scientifically proving CFS/FM with the Dept of Health and Human Services, NIH and IOM as they just released a break through report to the medical community including diagnosis guidelines/critereia so that gp and specialist doctors can now diagnosis and potentially treat this debilitating illness.

Unforatunately there is a ways to go w health insurance and disability reform. Famvir is barely covered by my insurance, they only cover 21 pills a month and i have to take 120 a month but luckily i have had assistance the past 3 months but that will not be available soon so i will be fighting/appealing Aetna's lack of coverage however i hear from many others that it's hard to get the approval/coverage. Many usually pay for it out of pocket which is about 1400 a month

Sorry for the long post but this has been a very long journey and one that i hope will be behind me in the near future. I wish all those suffering the best and am happy to help if i can.

audaerin
New Member


Date Joined Apr 2015
Total Posts : 1
   Posted 4/28/2015 1:24 AM (GMT -7)   
Hey there,

A few years back I was suffering from sudden, and frequent, fairly short lived loss of control over most of my body. (I could still control my eyes and I could breath) These boughts would happen weekly and last at least 20 minutes, and sometimes up to 4 hours. I learned to live with it at the time as I stayed home primarily. Well eventually it stopped happening to me and I wrote the entire experience off as perhaps an issue with water supply, my auto immune diseases flaring up, or maybe an issue with my brain that cleared up.

Sadly, Today it has come back in full force. I have crohn's disease, I have hoshimoto's disease, and I h ave a sleep disorder where my brain wakes 4-5 times an hour during sleep, These results were seen in a sleep study and is conclusive with evidence to support it. The doctor failed to properly diagnose me for my sleep disorder, he called it DSPS. Which is most assuredly not what I have as none of the symptoms match me at all. ANYWAY so we KNOW I HAVE CHRONIC FATIGUE if i'm not getting my sleep, yea?

Furthermore, While working at the age of 16 I mysteriously picked up mono, without having knowingly shared body fluids with ANY ONE. So I appear to fit the bill for the CFS stuff. However, i've spent 8 years going to specialists: neurologists, bone doctors, hormone doctors, alternative medicine doctors, sleep study specialists, bla bla and so on. NONE of them had ANY answers for me.

I am OFTEN fatigued from doing little things like just cooking myself a meal or taking a shower, but I try to live with this , obviously. My chief, line in the sand, complaint is that I can lose full control of my ARMS LEGS, TORSO and just be basically entirely crippled for a few hours of life, with no apparent cause of onset to me.

Does this sound like something that could possibly happen within the realm of CFS? Thank you so much for reading. I feel like i'm at the end of my life line here. I tell doctors my symptoms, I go to the ER. They stare at me like i'm a ****ing nutz balls and say im' healthy apart from my known diseases. They usually think im' faking it. WHY WOULD ANY ONE FAKE BEING TOO EXHAUSTED TO TAKE CARE OF THEMSELVES AND THEN BEING UNABLE TO MOVE FOR HOURS regardless if any one is there to see it or not. jeez. anyway. Sorry a little 8 years of rage there.

MsLouise
Regular Member


Date Joined May 2015
Total Posts : 55
   Posted 5/3/2015 3:24 PM (GMT -7)   
Thank you so much for posting this! After trying so many treatments, I have been pretty much in maintenance mode with my FMS & CFS without much relief. Despite multiple blood tests (that my DRs never really explained to me) that all came back normal, I've always had this feeling that there is something more going on. Some type of bacterial or viral infection, something that they weren't looking hard enough to find! After reading your post, I found a DR in my area (riverside, ca) that treats both of my conditions using this approach. He does extensive testing for microplasma and viral infections, and has found over 50% of his patients have this and can be treated and see a significant improvement. He also talks about the adrenal system being a major factor, which I have always believed to be the case. I am making an appointment tomorrow! Maybe I don't have any other infections, etc going on, but I am excited to see a DR who knows about this, who can do more extensive testing and at least rule this out. Most of all I am excited to have a new avenue to explore in getting better. Really appreciate you sharing your story and making the rest of us aware of these possibilities!

Louise

nesle
New Member


Date Joined May 2015
Total Posts : 2
   Posted 5/6/2015 11:48 AM (GMT -7)   
Hi Everyone! I am new to this forum and posting for the first time. Thank you all for sharing your stories! I am a new patient of Dr. Lerner and began treatment with valganciclovir 8 weeks ago.... I am feel a whole lot worse and am getting anxious because Dr. Lerner told me to expect to feel worse for 4 to 6 weeks and then begin to feel better. Can any of you tell me about your experiences? Also Dr. Lerner initially recommend I do Iv cidofovir treatment, but I have been unable to because of lack of support system to help me with my children... He put me on oral instead but wants me to begin cidofovir when and if able to.... Can anyone please tell me about experiences with treatment? I have been ill since 2002 and have had lots of ups and downs but have been getting progressively worse... I am desperate to do anything that helps, but have to be able to care for my children and don't want to make things more difficult for them.... I would love any advice or information any of you are able to share! with tremendous gratitude!

B8080d
New Member


Date Joined May 2015
Total Posts : 4
   Posted 5/10/2015 7:30 AM (GMT -7)   
Mia ; can you contact me to give me the contact of your Dr in NYC ? Thanks. Bruno.donjon@gmail.com

AnnaBananna
Veteran Member


Date Joined Jun 2013
Total Posts : 789
   Posted 5/10/2015 8:59 AM (GMT -7)   
Auderin and Nesle -- those are great questions! It will be easier to get answers if you start your own post; make sure to include your question as the subject line.

nesle
New Member


Date Joined May 2015
Total Posts : 2
   Posted 6/8/2015 10:24 PM (GMT -7)   
Thank you! I'll try to begin a new post to gather info! Not exactly sure how to do that? Thank you for your help and kindness!

sunshine625
New Member


Date Joined Jun 2015
Total Posts : 1
   Posted 6/24/2015 12:28 PM (GMT -7)   
I started Famvir once a day 250 for CFS w very high EBV Tiiters for 4 years now. I read valacyclovir doesn't work as good but is sounds like it's working for most people.
How much Famvir did anyone take? The Famvir is making me more tired. Is this normal at first? What's the Iv Lerner prescribes? Does it help?so tired of being tired.

babs64
New Member


Date Joined Jul 2015
Total Posts : 7
   Posted 7/15/2015 8:38 PM (GMT -7)   
I've been reading the different posts. No matter what, ever, let anyone tell you, you're being a, hypochondriac. We all share most of the same symptoms. Some worse than others. But, from what I can see, everyone is, suffering. I saw one post on another thread. I have to assume it came from a nurse of Doctor. Some kind of healthcare provider. They said, " I see this a lot, " chronic fatigue" It always seems to be they are getting enough, activity or eating too much or not enough " This is the kind of statement and judgement that drive, very sick people, over the edge. I've had doctors, look up my nose, look at my arms and imply I was a drug addict looking for, drugs. As if I wasn't sick enough, and it took everything I had just to get to that, appt. Or, family members with their, " well if you would try this or that, etc. as if you haven't already tried everything. I would pray every night, to make it one more day. I did that for, 3 years. Finally, it had to stop. I went to the, PA that diagnosed me. At that time it was, mono. but after 6 months, she called the, CDC, they told her it would be called, CFS, and just nothing could be done. So, that is when I decided. The symptoms are what is causing the stress, and the stress causes more symptoms. Not able to sleep. For 3 years I would sleep in, 15 minute naps. Never a full nights sleep. so, off and on everyday for, 3 years I would get a short nap. I told the PA, I can't do this anymore. I'm sick, I'm tired, I hurt, I can't sleep, I have no life. I feel guilt, anxiety, anger, depression, etc. I need help so I can sleep, I need pain relief, and I need at least an ounce of energy. So, we got all that so its just right, not too much or not enough. So, i can sleep, I don't feel rested when I get up after, 10-12 hours of sleep, but it was, 10-12 hours I didn't have to think about it, or feel it. I had pain control so I could have peace from that...and could move around, get a shower, etc..without all the pain. Some pain, but it was bearable..and energy, she gave me an amphetamine. Its a very small dose. She had given me a larger dose but it was too much..so, this small dose make it possible for me to get up, shower get dressed and do short periods at a time of, house work. or a little in the yard. I even have a vegetable garden. I've put myself on a, strict diet. No wheat, no sugars, no dairy. Everything I eat is organic, grass fed, etc. I'm taking a, cell detox supplement and taking, B12 and D3, magnesium and calcium, all live raw, supplements. As I am starting to feel better, I can cut back on the meds. I still have dizzy spells, blurred vision, different areas that still hurt..I still can remember anything ...if not for my husband I don't know what I would do. He's become my memory, and when needed, when I'm having the blurred vision, or dizzy. He does the driving. He takes me to my appts. so he can listen for me. If not, when I get home, I can't remember anything they said. But, so far, at least now I don't sit and cry trying to get ready to go to that appt. I did a lot of crying, just trying to do anything, it would hurt so much or I was so, exhausted...So, I'm hoping and praying that a year from now..the organic, detoxing, etc..will have made a big difference. It sure can't hurt. But, I could not do another year, with pain, no sleep, no energy and so tired that was painful. the harder I tried, the worse things got. so, that is what I'm doing to try and turn this around.

Inspiredby3
Regular Member


Date Joined Jul 2013
Total Posts : 333
   Posted 11/16/2015 5:37 AM (GMT -7)   
Hi! I thought I would keep this post going even though it's a few months since someone posted. I have Lyme, Bartonella and Babesia from a tick bite.

I wanted to ask those of you who tested positive for viral infections, did your infections come up Igm positive, active infection, or Igg positive, past infection in your body?

I got a positive for EBV and one other, but it came back Igg positive, as past infection. Just wondering if any of you were still treated with antivirals with an Igg positive?

Thanks!

little cabbage
New Member


Date Joined Jul 2012
Total Posts : 6
   Posted 1/19/2016 1:57 PM (GMT -7)   
Interesting article on the vagus nerve and Chronic Fatigue. The researcher has a hypothesis that an infection of the Vagus nerve may be what causes Chronic Fatigue. He suspects the infection could be from pathogens that like to reside in nerve tissue. This includes chicken pox, the herpes zoster virus, Epstein-Barr, HHV-6, Lyme, and/or some kinds of enterovirus. Treatment would be anti-inflammatories along with things to get rid of the specific pathogen.

http://thelowhistaminechef.com/harvard-neuroscientist-dr-michael-van-elzakker-chronic-fatigue-vagus-nerve-link/

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2176
   Posted 8/21/2016 3:18 PM (GMT -7)   
I usually post on Lyme forum but happened on this one and was quite shocked at how much overlap we have! I have high ebv, hhv-6, myco pneum as well. Tested positive on Lyme c6 elisa. I am currently on Famvir and doxy. How long before you notice improvement on antivirals? I have noticed a slight improvement in fatigue and lymph node has decreased some.

mystery1
Veteran Member


Date Joined Mar 2013
Total Posts : 514
   Posted 11/15/2016 9:07 PM (GMT -7)   
hi loopy pig, I love that name by the way. I think Jesus led me to you tonite. I have been told over the last 20 years first it was fibromyalgia, then I had an anxiety disorder, then I had CFS, then EBV, then 3 years ago was told I had lyme with a negative test 1. igenex test inconclusive first one, second one 2 years later it was a low positive.

I have high titers to EBV, CMV, and HHV 6. I had a vitamin D deficiency. My thyroid need a natural form of T3, I have a Mthfr gene mutation, my C4a is high which means lots of inflammation in my body, My ammonia level is slightly high which makes you feel bad, positive IGG for mycoplasma pneumonia but negative IGM. elevated leptin levels, abnormal hormones but I have had a complete hysterectomy. I had teeth problems over the last 3 years pulled all mercury now pulling root canals, cause eBV can cause a lot of infection in your gums, etc. I also had a blood clot in my lung after major surgery in 2008, and I had histoplasmosis a fungal pneumonia at the same time. I got so sick in 2007, i have up stopped working, got disability and ended up on some narcotics I am now off of. am I now wondering if the withdrawal which was severe could have knocked me down more.

I have been in an abusive relationship up until 3 months ago, and I have a lot of childhood trauma. I just broke down in 2012 bedridden for 2 years then half the time in 2014 a lot in 2015. I am doing better now that I ever had in years.

But your story has given me so much hope. I had began to have stabbing headaches again, lots of twitching, and shakiness in my hands and leg, and lots of pain in my spine, twitching under my eyes, etc.

I have been on famvir about 3 to 4 days, and I just realized after reading your post that my headaches have gone, my shaking in my hands is almost gone, I am not twitching under my eyes, my energy is getting a little better, I am sleeping better, less anxiety, heart not pounding so hard, no pinpricks in my feet and hands.

I was scared to take famvir at first so I didn't but decided after really studying my lab i needed too. I really think I have a chance now. to get really a lot better. I used IV peroxide and IV ozone for 2 years which gave me some energy but I feel so much better on this famvir. which is leading me to believe I have had these viruses a long time. antibiotics never really helped me except azthromyxin and I felt good on bactrim about 1 month ago for a UTI.

I am going to read about valctye. I have been reading about DR Lerner and I am reading Medical Medium which is the book that really got me thinking about the viruses, esp EBV. thank you for your post.
Registered Nurse in tennessee: sick since high fever in 1994. polydrugged over 20 yrs. Misdiagnosed, bedridden 2012 to 2014.

Lyme disease or questionable chronic EBV/mylagic encephalitis

current tx: westhyroid,, lamictal,paxil,ativan, lots of supplements,famvir, high protein shake, vital reds, vitamin D,C,B,Magnesium,Iodine, and methyl B,melatonin.

Auspiciousbunny
New Member


Date Joined Nov 2016
Total Posts : 3
   Posted 11/17/2016 9:12 PM (GMT -7)   
Loopy - thank you. I have been dealing with immune problems for so long I get depressed thinking about it. I am going to try to find a physician to look into this. I have had such bad fatigue and chronic headaches it has impacted my ability to work over and over.

andrei_i_1982
New Member


Date Joined Apr 2017
Total Posts : 2
   Posted 4/3/2017 4:07 PM (GMT -7)   
Cycling Valtex completely eliminated symptoms of my CFS.

I take 1g of valtrex twice a day(every 12 hours) for 4 consecutive days, once a month. I am a male and weigh about 180lb. ATTN, recovery mechnism is delayed, for the first 6-8 weeks I saw no improvement, and then I had full recovery. Also, I tried 500mg – it does not work for me.

Here is my story in greater detail:

My condition started with a flue and then continued with all the standard horrific symptoms. After two years of research and a couple of molecular cell biology courses, I narrowed my hypothesis down to Epstein-barr virus and HHV1 – high antibody titters kept on showing up in my bloodwork. Based on the information I could find, it seemed that EBV is suppressed by Valtres only at high concentrations while HHV1 is suppressed at both high and low concentrations. So, I started taking Valtrex – 1g ever 8 hours. After a couple of weeks i clearly felt that my body was suffering side effects from Valtrex. My stool turned white and I started loosing weight. I stopped after a month. And then, about 6-8(approximate) weeks since I first started (and so 2-4 weeks after I stopped taking Valtrex) I had a full recovery. Energy, comfort of being in my own body and sleep all returned. That was so odd! Recovery lasted about 6 weeks, and then I relapsed back into CFS. So, I started experimenting, and
to keep the long story short, I discovered that the minimum dose was 7 1g pills of valtrex taken consecutively at 12 hour intervals ( I take 8 just in case). Recovery is delayed by 6-8 weeks, and then lasts another 6 weeks. So, to keep myself from relapsing I started taking it every month as described. And I have been feeling well since.

I know Valtrex does not work for everybody, and I know that it works for some. I never tried Valcyte, I don’t know if cycling that in a similar way helps with other types of hhv

JillianMFB
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/7/2017 12:50 PM (GMT -7)   
Hi there, are you able to share the name of the specialist in NY that you saw? Really need a good recommendation and cannot find one.

Mia333 said...
Greetings, I thought I'd share some of my experience with hopes of helping others and preventing the the long, distressing cycle in getting a cfs diagnosis and a potential treatment for those who fall in the EBV and HHV6 group.

I have had untreated hep c for over 20 years but made sure to keep up on monitoring my liver and viral loads until better treatments became available. For about 15 years I struggled with fatigue getting to debilitating levels around the last 5 years or so. It got to the point where i had to insist on addressing it as my doctor would just continue to blow it off. After pressing to get to the bottom of this fatigue, my doctors felt the hep c was starring us in the face and was lucky that the new miracle hep c treatment had just been fda approved. so i started my 6 month treatment last Feb however as i neared the end of my treatment i was getting worse and especially post treatment.

Thanks to this website and the hep c forum, i was able to compare my symptoms and lack of progress w others. Not only was my fatigue worse then ever i was now getting flu like symptoms, swollen glands, sore throat, achey, this burning tingling pain in my left shoulder, frequent urination and worsening of my brain fog. The symptoms continued to escalate and were occurring pretty much on a daily basis but flucuating.

After continued research i found that my symptoms were spot on with CFS. Then my family practice doc tested and got a positive and elevated EBV test result, which then we did further testing of the entire herpes family, even though i never had the sexually transmitted virus. Tests came back w positive hsv1 and hhv6. i then joined a local cfs/fm support group and got very active in trying to find a specialist that i can afford since disability continued to deny me, was now in a serious financial hardship and health insurance is not an option with any cfs specialists. My attorney and close members of our cfs group provide the name of a cfs specialist in NYC. She was able to confirm a cfs diagnosis and based on my history and viral tests, said i had a 50 50 shot of putting this in remission with antiviral treatment. so i started Famvir, 4x a day. In 2 weeks, it was a miracle, i was like my old self, the sore throat, swollen glands, burning/tingling shoulder pain, ect all subsided, then about a month into treatment, i had a bit of a short term relapse for about 2 weeks and then i bounced back again, now I'm about 3 months into famvir treatment and knock on wood have not had any of the above symptoms though the fatigue is still present I'm about 75% back to myself, I have not felt this good in many years. All of the symptoms, including frequent urination, brain fog, ect have significantly improved, who would have ever thought these symptoms were cfs related.

I have spent so much time, endured much stress and wasted money over the past 4 years going to different doctors, ect getting no where. There is finally some major progress in scientifically proving CFS/FM with the Dept of Health and Human Services, NIH and IOM as they just released a break through report to the medical community including diagnosis guidelines/critereia so that gp and specialist doctors can now diagnosis and potentially treat this debilitating illness.

Unforatunately there is a ways to go w health insurance and disability reform. Famvir is barely covered by my insurance, they only cover 21 pills a month and i have to take 120 a month but luckily i have had assistance the past 3 months but that will not be available soon so i will be fighting/appealing Aetna's lack of coverage however i hear from many others that it's hard to get the approval/coverage. Many usually pay for it out of pocket which is about 1400 a month

Sorry for the long post but this has been a very long journey and one that i hope will be behind me in the near future. I wish all those suffering the best and am happy to help if i can.
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