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[richvank]

Rich,
Hello and thank you. What type of researcher are you if you don't mind me asking? I became sick last Aug and have decided that I should not give this virus anymore time to replicate in my body. Even though the thoughts of taking a drug doesn't sit well with me, I have to be proactive and combat it at all angles...viral warfare. Who knows, maybe my experience can be helpful to someone else.
Lee Ann

Hi, Lee Ann.

For the past 15 years, I have been researching CFS. You can find my papers, articles and talks at www.cfsresearch.org, by clicking on CFS/M.E. and then on my name.

Prior to that, my research fields involved engineering, physics, chemistry, materials science and nuclear technology. I'm retired from the University of California.

I'm glad to hear that you have not been ill very long, though I'm sure that it seems like a long time to you. I think that being ill for a shorter time means that your body will not have accumulated as many pathogens or toxins. Because the immune system and the detoxication system become dysfunctional in CFS, these tend to accumulate over time, and it becomes more difficult to clear them out.

Best regards,

Rich

 

[TheMoonIsBlue]

Hey moon,
I appreciate your info. I scanned through the article. I stay confused because some of the symptoms are not me but I have had some many things ruled out. I suppose I am the few that do not have joint or muscle pain. idiopathic I think is how they referred to it. I think if it were not for the sore throat I have, I would really question my dx. Even though I have reactive EBV... I had a very well known doctor tell me that they really don't know much. Our bodies are so complex. I'm not sure if that was reassuring or not..
So, I have to go with what I know and that is treating the EBV.

I think treating the EBV is definitely worth a shot. Some people DO respond well to Antivirals, some in a short amount of time, some take a long time, some only improve a litte, some don't improve at all. It's just so different for everyone. But If you don't try, you'll never know-it sounds like you have a knowledgeable doctor. So if they think it is safe, I would say giving it a go is well worth it. Some people use Valtrex, Famvir, or Acyclovir, some people can't tolerate certain meds and have to switch.

Do you know what your level of EBV is? (and the lab range?) Was your illness gradual onset, or did you have a suddent "flu like" illness you never recovered from?

 

[Lee Ann]

Hi Moon,
This is all so new to me I really stay confused. I feel like I am in medical school, just taking courses on line (haha)... My EBV is 6 and I think the range was 1. Gradual, well not sure. I woke one morning feeling dizzy and thought I would pass out. I didn't though. Didn't think much of it. Life was going good. I would feel woozie every so often but it didn't interfer with my quality of like. just annoying. Three months went by and I thought I should see a doctor. Went to an ENT everything normal..sent me to an neurologist...had MRI CAT scan ...all normal....At this point I was feeling no fatigue...Just woozy. Fast forward a few months and I became sooooo fatigue I couldn't drive anymore...Then a couple of weeks passed and I became very sick ....High fever and a sore throat like I had never had before....After a couple of days went to walk in clinic ..Dr said I probably had strep...no culture done.... I never recovered from that. I was bedridden for about four months. I really thought I was dying....My blood pressure would drop to like 90/40.... I function at about 50% some days alittle more.... I was running before all of this happened. I could hardly do light housework....I kept thinking what is happening to my once healthy body. So, I went to doctor after doctor and so on....Nothing...I ended up going to Chicago to see a neurologist. He did extensive testing...The only thing he found was the reactive EBV.. He said it was possible that could be my cause. He didn't sound like it was a concern... That was it... My search continued..So many doctors that said I don't know...see a therapist, take caffeine tablets, exercise five days a week, read this book, yada yada yada...I then went to Hunter Hopkins in Charlotte and saw Dr Black...she is the one treating me for EBV....Went to Vanderbilt and had autonomic function tests..Got results yesterday and I was told I do not have POTS....Yeah...So sorry to be so long. This has been a life altering jounery. I don't have to remind you of that. So that is my life since last March... I am determined to stay hopeful and have faith.. but that gets really difficult some days...I use to be so active. I have always loved life....It is so precious and goes so quickly... I am so lucky to have a wonderful family.
Talk to you soon sushi

 

[Lee Ann]

Hi Rich,
It's great to have people like you in our corner. Nice to meet you and thank you for all of your help. Could I ask a question...in your opinion can EBV infect a person's brain...can the pathogens or the virus attack the CNS.
Thanks
Lee Ann

 

[richvank]

Hi Rich,
It's great to have people like you in our corner. Nice to meet you and thank you for all of your help. Could I ask a question...in your opinion can EBV infect a person's brain...can the pathogens or the virus attack the CNS.
Thanks
Lee Ann

Hi, Lee Ann.

Yes. In fact, there seems to be accumulating evidence that EBV infection is the root cause of multiple sclerosis. There are also some rare tumors involving the lymphocytes that have been reported in the brain or adjacent to it. Some cases have been found in people who have had organ transplants and have had to take drugs to suppress their immune system to avoid rejection of the transplanted organ. If you want to read abstracts of research on this, go to PubMed and type EBV and brain into the Search box. Then you can click on the titles that look interesting. If you click on review over on the right side, the search will be limited to review papers, and they often give more general information in their abstracts.

Note that EBV occupies memory B lymphocytes of the immune system. The virus causes the B cells to become immortal, and these cells are not attacked by other parts of the immune system, so that gives the virus a secure place to hang out for the person's entire life. As you can see from some of the abstracts, EBV-infected B cells have been found in the brain in some cases.

Best regards,

Rich

 

[Lee Ann]

Hi Rich,
Not to make light of this but it sounds like science fiction. I realize our bodies are very complex but it seems like the viruses have the upper hand.
So, I'm wondering if the EBV is hanging out in my brain, is the Valtrex smart enough to find it and do it's job...Silly question but
Thanks

 

[richvank]

Hi Rich,
Not to make light of this but it sounds like science fiction. I realize our bodies are very complex but it seems like the viruses have the upper hand.
So, I'm wondering if the EBV is hanging out in my brain, is the Valtrex smart enough to find it and do it's job...Silly question but
Thanks

Hi, Lee Ann.

Valtrex does cross the blood-brain barrier to some extent. In rats, the brain was found to receive the lowest amount of the ten organs that were studied. There have been a couple of trials of Valtrex against multiple sclerosis in humans, and effects were seen, though not very big ones. If you go to PubMed and type valacyclovir and brain into the search box, you can read the abstracts.

Valtrex does have some effectiveness against EBV, but its main applications are against herpes simplex viruses (the cold-sore virus and genital herpes virus) and herpes zoster (shingles).

I don't know how effective Valtrex would be against EBV in the brain. Dr. Lerner has had some success using Valtrex against EBV in CFS in general, but I think he has focused mostly on effects in the heart.

Best regards,

Rich

 

[lucy]

Hello Lucy,
So you continue to have fever? That is one symptom I do not have. The initial onset I had fever but not since. The sore throat remained though. It's not every day. I occasionally have muscle ache or mine is more like I am being stuck with a hot poker. Very intense. In the beginning, I was definite it was MS. MRI showed no lesions no tumor. Then I moved on to ALS because of the muscle twitching. Had an EMG a very painful test, who thinks up these things, and that was negative. Thank God... I was so relieved. I think ALS is one of the cruelest diseases ever. You usually don't live over 5 years. So, on down the line I went. Ruling out the ugly ones first. And then a doctor did some extensive blood work and found reactive EBV. Just had western blot done for lyme. Who knows....I try really hard to stay hopeful but there are days like when I see someone running, and I just break down. I think, that use to be my body. I really miss the feeling of freedom that I felt from running. I've done it for years. But one day, I'll put on my running shoes and this will be a distant memory. Every one here has been so kind. Thanks

Now I have fever if I eat a moderate amount of carbs or starches. For example thick soup made with corn starch could rise fever for a half a day. I had sore throat for about half a year, and the lymph nodes still swell up sometimes.

As for jogging, I suppose I know what you are talking about. I used to do karate and rock climbing before getting ill. It was my way of life. I sometimes go with my friends to the rocks - they climb, I draw, but I have forbidden myself to go near the rocks themselves, because the climbing moves are still there in my body, and memories just surge up. I switched into arts, and that was the only thing that helped me to go forward as a person. I suppose I am very lucky to have this interest and to have enough of energy to keep the eyes up drawing.

 

[Marg]

Hi Rich,

Thank you for this explanation. I saw doctors in 5 states in the 90s and no one looked at my immune system. I know now that Epstein Barr and HHV6 were making me very sick and that have they reactivated.

I am doing well on the methylation protocol and have upped the doses by 1/4 4 months ago. Yes, I am detoxing..not fun at times.
I think I told you I am on Imunovir which I am sure you know is a modulator. I think the immune system is dong something becasue I am not as sick. I actually had a normal Christmas! I did over do taking down decorations and had to learn the hard way about PEM.


I remember reading in one of your papers that correcting the block would help POTS, I had that in the 90s too but no one told me. Well, maybe they did not know about that then. I hope I did not dream that.

I also remember SAMe was part of your 1st Simplified Program, do you think that would be of any help to me?

Thanks you for all you do, don't know how you do it all. We are all glad you do though!

Margaret

 

[richvank]

Hi Rich,

Thank you for this explanation. I saw doctors in 5 states in the 90s and no one looked at my immune system. I know now that Epstein Barr and HHV6 were making me very sick and that have they reactivated.

I am doing well on the methylation protocol and have upped the doses by 1/4 4 months ago. Yes, I am detoxing..not fun at times.
I think I told you I am on Imunovir which I am sure you know is a modulator. I think the immune system is dong something becasue I am not as sick. I actually had a normal Christmas! I did over do taking down decorations and had to learn the hard way about PEM.


I remember reading in one of your papers that correcting the block would help POTS, I had that in the 90s too but no one told me. Well, maybe they did not know about that then. I hope I did not dream that.

I also remember SAMe was part of your 1st Simplified Program, do you think that would be of any help to me?

Thanks you for all you do, don't know how you do it all. We are all glad you do though!

Margaret

Hi, Margaret.

You're very welcome. I'm glad to hear that you are doing well on the methylation treatment, and that you were able to have a "normal" Christmas.

Yes, SAMe was in the original simplified treatment approach, but I took it out, because several people did not react well to it. I note on the CureTogether.com crowd sourcing site that that seems to be reported by several people there, also.

SAMe should rise as the methylation cycle function improves, so it is probably not necessary for most PWCs to add it specifically. On the other hand, some are pretty low in methylation capacity at the beginning, and SAMe is needed in the body to convert hydroxocobalamin to methylcobalamin to get the methylation cycle running better. So some people may need it. It will probably put a bigger load on the sulfite oxidase to process extra sulfur metabolites, and more molybdenum may be needed to prevent headaches and
other symptoms from elevation of sulfite, if SAMe is added. I think it's an individual thing, and hard to predict.