I am still trying to understand why I am sick and what is causing it. I was told by several CFS docs earlier this year that I have CFS from a sudden onset(based on symptoms and very high EBV) then in the summer I went to see a LLMD that told me I had Babesia(from + Igenex)Lyme(from several Igenex specific bands present) so she started zithro/mepron/flagyl treatment that I was on for almost 2 months but I stopped because abx were further damaging my stomach, which made me feel like death now I am clueless as to what is causing my situation.
I have not gone back to my LLMD. I heard that she is very good but she doesnt even look at viral issues. I went to Detroit to see a CFS doc but I havent gone back because he wants to try antivirals and he does Lyme testing only through Labcorp. I just wish that I could find a LLMD that looks into viral issues as well.
I am considering trying someone that is familiar with functional testing and nutrition and I heard that he does do Lyme testing but tests through Central Florida Labs. His focus is on fixing stomach, liver issues while strengening the immune system with supplements and nutrition. Who knows if this will even help. Just feeling so confused and hopeless.
Happy Turkey Day to All
Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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posted
Mike my dear, to me the thing that would he worse than having Lyme is having Lyme and not knowing it (as was my case for 5 years).
The LLMD gave you your answer, you just didn't like it. Antibiotics are hard on your stomach but eventually you can tolerate them better.
Do you think the treatment for various viral infections would be more suitable? Don't know but it ain't gonna take care of your Lyme problem in any case, and it won't go away by itself.
I don't mean to be harsh, but you might want to be thankful you found out what your problem is, and believe me Lyme is a big problem, be thankful you have access to an LLMD, then get your head right and start killing LYME no matter what it takes!
You are sick anyway, and the antibiotics are a means to an end. Not treating will eventually BE the end.
You have the gift of knowing, don't waste it.
Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
So Mike I'm assuming the babs treatment didn't make a dent then?
From what I've heard--and I know that you've heard it all before--successful treatment may require more time. You may want to find a protocol you can tolerate and then stick it out for a while...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi Mike,
I tend to agree with the others. You could ask your LLMD to test for them. I sure she would if you insist.
In fact, it is important to get viral testing to rule out other serious diseases, but in the meantime you should be treating your lyme and coinfections, because they will only continue to get worse and harder to eradicate.
No beating around the bush, treating lyme and co's does have its challenges and side effects.
Did you try using VSL #3? I have used it and is a wonderful priobiotic for stomach and gastro issues. It is 225 billion cultures and 8 strains and sold in the CVS pharmacy dept.
Whatever your decision, I hope you resume the lyme and coinfection treatment as well as pursue the viral testing.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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quote:Originally posted by janis1023: Mike my dear, to me the thing that would he worse than having Lyme is having Lyme and not knowing it (as was my case for 5 years).
The LLMD gave you your answer, you just didn't like it. Antibiotics are hard on your stomach but eventually you can tolerate them better.
Do you think the treatment for various viral infections would be more suitable? Don't know but it ain't gonna take care of your Lyme problem in any case, and it won't go away by itself.
I don't mean to be harsh, but you might want to be thankful you found out what your problem is, and believe me Lyme is a big problem, be thankful you have access to an LLMD, then get your head right and start killing LYME no matter what it takes!
You are sick anyway, and the antibiotics are a means to an end. Not treating will eventually BE the end.
You have the gift of knowing, don't waste it.
Jan
Hello Jan,
I am glad that you found that Lyme was a problem for you even though it took 5 years. I quess the problem I have is that first I was told that I have CFS, by the CFS doctors then I was told that I have Lyme/Babesia by the LLMD. So the thing is that I dont know what to believe. What is causing what. I quess I have to be on the treatment longer but I got discouraged because I didnt feel that I was herxing, so this made me believe that CFS is my real problem. Thank you for your advice.
Posts: 103 | From New Jersey | Registered: Jun 2008
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quote:Originally posted by Lymeorsomething: So Mike I'm assuming the babs treatment didn't make a dent then?
From what I've heard--and I know that you've heard it all before--successful treatment may require more time. You may want to find a protocol you can tolerate and then stick it out for a while...
I'm not too sure that it did. I was experiencing stomach issues from the very moment that I became ill and the zithro/mepron made my gut issues worse but it wasnt until I added Flagyl a month into treatment that my gut issues and overall feeling went from bad to much worse. That is when I had to throw in the towel.
I was told from the advice on this board that Flagyl was added way too soon and that I was possibly taking too much of it. I even called my LLMD's office to tell them what was going on and she never told me to stop or cut down to a dose that is tolerated. She said that if I was having stomach issues to eat chips when I take the meds and that should help. Eat Chips!!! when she told me this is when I started to doubt even more if I was seeing the right doctor because I felt that she wasnt taking my issues seriously.
I went to her because I was told that she had Lyme along with her family so I fiqured that she would understand what I am going through.
Posts: 103 | From New Jersey | Registered: Jun 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Mike,
You mentioned in your first post that you were positive on the Igenex test.
What else would you need as proof that you have lyme and babesia, besides your positive test results and your symptoms??
You will continue to get sicker and sicker without treatment.
Like Jan said, you had a gift of knowing, dont waste it.
Many people dont have the opportunity to have a positive test and a good LLMD to treat them.
You stomach issues can be very easily addressed too.
Happy Thanksgiving! Posts: 1127 | From atlantic city, nj | Registered: May 2008
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I tend to agree with the others. You could ask your LLMD to test for them. I sure she would if you insist.
In fact, it is important to get viral testing to rule out other serious diseases, but in the meantime you should be treating your lyme and coinfections, because they will only continue to get worse and harder to eradicate.
No beating around the bush, treating lyme and co's does have its challenges and side effects.
Did you try using VSL #3? I have used it and is a wonderful priobiotic for stomach and gastro issues. It is 225 billion cultures and 8 strains and sold in the CVS pharmacy dept.
Whatever your decision, I hope you resume the lyme and coinfection treatment as well as pursue the viral testing.
Viral testing was one of the first things that I mentioned to her because I had high Antibodies for EBV but she didnt feel that viral testing and/or treatment was important. This really worried me from the start. She strictly only looked for Lyme/Co-Infections. I really felt that she was a nice lady but I need someone that will look at the big picture and I have yet to find anyone.
I never tried VSL but I was on Theralac the whole time that I was taking antibiotics.
In my first post I meant that I had several positive and IND bands but overall my test was considered negative by Igenex. When my LLMD saw the test she felt that is was very significant so she tested for co's and once I was found positive for Babesia that is when she felt that Lyme was my problem as well.
Posts: 103 | From New Jersey | Registered: Jun 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
I totally understand where you are coming from and that you want to address the viral stuff.
Why dont you switch your LLMD and perhaps you can attack both. Like a refresh!
I have the names of several good docs in Jersey if you need them.
PS> Theralac doesnt even compare to VSL#3. It only has 20 billion cultures and about 5 strains.
VSL #3 is heavy duty. Something in between would be Renew Life Critical Care, with 50 billion/10 strains. Even the Iflora Professional from your LLMD is very good at 20 billion/15 strains.
You might want to try these probiotics before you go on the antibiotics again to get your stomach back to its norm.
Also, you new LLMD could address this as well.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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quote:Originally posted by gemofnj: I totally understand where you are coming from and that you want to address the viral stuff.
Why dont you switch your LLMD and perhaps you can attack both. Like a refresh!
I have the names of several good docs in Jersey if you need them.
PS> Theralac doesnt even compare to VSL#3. It only has 20 billion cultures and about 5 strains.
VSL #3 is heavy duty. Something in between would be Renew Life Critical Care, with 50 billion/10 strains. Even the Iflora Professional from your LLMD is very good at 20 billion/15 strains.
You might want to try these probiotics before you go on the antibiotics again to get your stomach back to its norm.
Also, you new LLMD could address this as well.
Thank you Gem
I will look into the VSL and I will call to see if he looks into viral issues as well.
Posts: 103 | From New Jersey | Registered: Jun 2008
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quote:Originally posted by MartinJS: Mike, happy Gobble Day to you too!
The practitioner for functional testing, nutritional/immune support sounds very interesting. As for the ID doc I am curious if you were referring to Dr. L from Detroit?
If so I do personally know a couple of his patients and they *have* improved, one substantially on valcyte. I know you're hesitant about the anti-viral route but it's something to re-consider and Dr. L does monitor you very carefully.
Many people have CFS and Lyme diagnoses so addressing both is important. Good luck with whatever you choose, sorry fog bad toda, if you've been sick less than a year you have a *great* chance at recovery!
Yeah I've heard of some people that had good results with this functional doctor. And yes I went to see Dr L from Detroit earlier this Month from the advice of someone on another board and I was supposed to go back this week but I had to fly out there and stay for several days of testing and to be honest I really cant afford that and to keep flying out there to see him. I have to be realistic.
I have heard of many people try valcyte/valtrex and improve some but overall if there is any improvement it seems to be temperary or only minor improvement many also seem to get worse and it seems like the reason for that is because the viruses are only an effect of the immune system not working properly. I hear you on the fog this is one of my many problems that I deal with daily.
Happy Turkey Day to you too Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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