Epstein–Barr virus infection induce chronic fatigue syndrome

heapsreal

heapsreal

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Jacque said:
Just read all of your posts... I too am suffering with this viral HELL...and a bunch of other crap too... Been ill since I was 12... I have sky high titres for HHV6, EBV, HSv1 and 2 in addition to all other kinds of crap - thyroid - biotoxin illness.. and Chronic Lyme. I am seeing Dr. Kogelnik in California and am currently on the Rituxan - Having 3rd infusion on the 9th of Oct. Then will have 3 more after that over next 10 mo... Dr. K's theory is the viral infections hide in the B cells... Rituxan is a chemotherapy drug that wipes out B cells... Definately a drastic move on my part...but I am in drastic mode right now...as I am completely:ill: disabled...only able to just LIVE and somedays I don't do too good at even that... Will keep yall posted on the Rituxan...and am hoping nothing but the best for ALL of us WARRIORS who DESERVE to be WELL!!! Fight on!!:redface:
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Is dr K considering antivirals for you while on ritux? I ask this as i heard him mention this as a theory.

cheers!!!
 
N

niall

Senior Member
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Florida

Dr. Rey phoned my after I got home from the Ampligen treatment. She said there was a significant improvement in my viral antibody titers which were drawn on August 6th. I asked her why I was not feeling well even though I am improved from last year. She said that there are other viruses involved and the Ampligen causes my symptoms to become worse. She used a word like Hertz....something. She said she will not start the Famvir while I am on Ampligen because it will make me feel much worse. So the plan is to detoxify for month and then start Famvir at 125mg twice a day. I will know the full dosing protocol next week.
 
maddietod

maddietod

Senior Member
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2,902
niall said:
Dr. Rey phoned my after I got home from the Ampligen treatment. She said there was a significant improvement in my viral antibody titers which were drawn on August 6th. I asked her why I was not feeling well even though I am improved from last year. She said that there are other viruses involved and the Ampligen causes my symptoms to become worse. She used a word like Hertz....something. She said she will not start the Famvir while I am on Ampligen because it will make me feel much worse. So the plan is to detoxify for month and then start Famvir at 125mg twice a day. I will know the full dosing protocol next week.
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She probably said "herx" http://en.wikipedia.org/wiki/Herxheimer_reaction.
 
Jacque

Jacque

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madietodd said:
She probably said "herx" http://en.wikipedia.org/wiki/Herxheimer_reaction.[/quote]
Yes...I am guessing that is what she said as well... Herxheimer reaction is AWFUL...expecially if you have undiagonsed Lyme. When the pathogens die off they put off poisions which make symptoms almost unbearable! I know this first hand bc everytime I try to kill off the Lyme in my body I practically end up in the ER... It is AWFUL!!
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niall

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100
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Florida
Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows.
The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody.
Then the HHV-6 IgG went from a positive titer of 1:160, to a "mildly activated" positive titer of 1:80.

Dr. Rey said she will start me on Famvir after a month of detoxification from the Ampligen. The dosing is less than I had anticipated...250mg, take 1/2 a tab once a day for two weeks. Then take 250 mg, one tablet once a day for six months. Repeat blood work in six months
 
N

niall

Senior Member
Messages
100
Location
Florida
Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows.
The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody.
Then the HHV-6 IgG went from a positive titer of 1:160, to a "mildly activated" positive titer of 1:80.

Dr. Rey said she will start me on Famvir after a month of detoxification from the Ampligen. The dosing is less than I had anticipated...250mg, take 1/2 a tab once a day for two weeks. Then take 250 mg, one tablet once a day for six months. Repeat blood work in six months
 
N

niall

Senior Member
Messages
100
Location
Florida
Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows.
The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody.
Then the HHV-6 IgG went from a positive titer of 1:160, to a "mildly activated" positive titer of 1:80.

Dr. Rey said she will start me on Famvir after a month of detoxification from the Ampligen. The dosing is less than I had anticipated...250mg, take 1/2 a tab once a day for two weeks. Then take 250 mg, one tablet once a day for six months. Repeat blood work in six months
 
Jacque

Jacque

Senior Member
Messages
424
Location
USA - California
niall said:
Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows.
The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody.
Then the HHV-6 IgG went from a positive titer of 1:160, to a "mildly activated" positive titer of 1:80.

Dr. Rey said she will start me on Famvir after a month of detoxification from the Ampligen. The dosing is less than I had anticipated...250mg, take 1/2 a tab once a day for two weeks. Then take 250 mg, one tablet once a day for six months. Repeat blood work in six months
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Keep us posted... so did you also notice an improvement in symptoms along with an improvement in labs?
 
Jacque

Jacque

Senior Member
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424
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USA - California
Marg said:
Wow, good stuff Heaps. I know EVB is my main thing and no would would consider even looking at it until Dr. Klimas. The answer was always everyone over 30 has it and too controversial. I am wondering now why I put up with that answer, and so sick. You guessed it titers off the wall when I was finally checked. Imunivor helped a lot but still some activation until Acyclovir in May. The EVB feeling is now gone but I continue with Immunior and Acyclovir. I am not sure when I will be tested again. Dr. Klimas said at the last testing it was what doctors liked to see. I can overnight blood but I am going to give it a few more months. We are going to win this fight!
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Good stuff heaps!! When you say you don't have that EBV feeling...can you tell me what your EBV symptoms are? Were they flu like or ?? And do you suffer with a lot of nerve,muscle, etc pain?
 
Jacque

Jacque

Senior Member
Messages
424
Location
USA - California
alex3619 said:
There was a paper I read just recently that discusses latent pathogens dumping into inflammatory sites. The list of pathogens? Like a whos who of possible ME causes. If I find a link I will add it. Its about latent pathogens in the blood. As the blood passes through inflammed tissue, they wake up. They then leave the blood cells and go infect something.

Its possible to stop it I think, but we haven't done enough real research. I was discussing a Pied Piper strategy with someone online: antivirals plus careful inflammatories, plus rituximab, could lure latent pathogens out, kill em, and give em no place to hide, though herpes viruses do hide in nerves.

Bye, Alex


the link: http://arthritis-research.com/content/7/2/74/abstract
Full text is available, as is PDF.
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I wish I knew whether the Viral infections I have EBV ... HHV6... HSV1 and 2 are what is causing the intense pain I experience or is it Lyme? I just wish I knew the answer to that... I guess I will get it with the Rituxan and hopefully eventually the Antivirals...I those don't help the pain I will know it is likely that nasty bacteria...
 
M

Marg

Senior Member
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343
Location
Wetumpka Alabama
Sounds abut right to me Alex, when can I make an appointment? I was tested for Lyme but I am not sure if the test was good enough, it was in the 90's.

I was very surprised to learn from a friend whose whole family has Lyme that a person does not have to be bitten by a tick. It can be passed from mother to child and husband and wife. She tested and then the doctor suggested the whole family since ervyone was sick to a certain degree. She had to worst case though and is much better after 3 years of treatment..a little of everything ever used.
 
N

niall

Senior Member
Messages
100
Location
Florida
Jacque said:
Keep us posted... so did you also notice an improvement in symptoms along with an improvement in labs?
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Yes, I feel less sick, somewhat more like normal on a day to day basis and I can work about the house for five to six or seven hours a day with a nap or two in between. I still have a sore throat, muscle pain (although less) and still must be careful about not over extending myself. These symptoms may subside more when I'm off the Ampligen.
 
Jacque

Jacque

Senior Member
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424
Location
USA - California
niall said:
Jacque, how can you contemplate taking another antiviral while you are on the Rituximab and feeling so bad?
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I am really not feeling all that bad... no worse than before the Rituxan... I would say my energy and flu symptoms are 50-75% better but I can hardly enjoy it bc of the constant pain in joints, muscles, etc... Dr. Kogelnik did mention to me that he may consider Anti Virals in Addition to the Rituxan when I first started treatment... so will see what he thinks when I see him on the 9th.
 
Xandoff

Xandoff

Michael
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302
Location
Northern Vermont
Jacque said:
I wish I knew whether the Viral infections I have EBV ... HHV6... HSV1 and 2 are what is causing the intense pain I experience or is it Lyme? I just wish I knew the answer to that... I guess I will get it with the Rituxan and hopefully eventually the Antivirals...I those don't help the pain I will know it is likely that nasty bacteria...
Click to expand...

Jacgue,
I have been in pain for eight years. My belief is that what ever the illness is that we have (ME-CFS) is of viral nature and throws are entire system off. The sytems that elegantly regulate our immune system are "off". I have degenerative disc disease and other neck and spine problems that might not humble a "healthy" person" but with our un-balanced chemmistry I think our voulme control that regulates our pain gets stuck and amplified. I feel like I have a migraine of the spine. I went off all pain meds in December 2011 and life is a bear. Pain colors everything I do. You can look at my home page to see all the viral sub infections I tested for postive for. All the usual culprits, EBV, CMV, etc etc etc etc. I hope you feel better. I have had 15 injections of GcMAF once a week. I also take Low dose naltraxone for pain and it does help. All my best to you J!
 
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