posted
I tested positive for Lyme and babesia, but I will always test positive for Lyme since I had the vaccine when that was available.
So my LLMD has told me that the only thing we know for sure is that I have babs.
After taking doxy for about a month, I was left with a few babs-specific symptoms: night sweats, sensitivity to the touch, a rash that consisted of small red bumps (that happened to be around my left knee), and fatigue.
Posts: 97 | From Clinton, CT | Registered: Jun 2007
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posted
My doctor only thinks I have babs. I had a positive test 1:640 through Igenex. The first round I was on Mepron 2tsp a day and Zith 250 2x's a day and felt much better with in a couple of days (with a few ups and downs), but overall much better. The 2nd round my doctor upped my zith to 600 1x day along with the mepron. I have had a HORRIBLE month on it so far. I See him on Wed. to discuss next steps. Not sure what this means... but it's very frustrating. My doc's also said he has seen more and more cases of people with just babesia around where I live. I live in Western MA.
Posts: 45 | From MA | Registered: Sep 2007
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posted
The 2nd round my doctor upped my zith to 600 1x day along with the mepron. I have had a HORRIBLE month on it so far. I See him on Wed. to discuss next steps. Not sure what this means... but it's very frustrating. My doc's also said he has seen more and more cases of people with just babesia around where I live. I live in Western MA. -------------------------------------------------
The reaction to zith MIGHT indicate you have Lyme as well. Is this an LLMD??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Yes. My doctor is very lyme literate. Do you have to be certified to be considered a LLMD or just know your stuff?
I'll know more on Wed. as to why he gave me more zith. I have not had a positive lyme test and clinically he didn't think I had it... but I have read that the babs can mask it?, so this might be a test to see if it would come out.
Posts: 45 | From MA | Registered: Sep 2007
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quote:Originally posted by jmo: Yes. My doctor is very lyme literate. Do you have to be certified to be considered a LLMD or just know your stuff? no...but let's hope he's very experienced with Lyme patients and that is his main practice.
I'll know more on Wed. as to why he gave me more zith. I have not had a positive lyme test and clinically he didn't think I had it... but I have read that the babs can mask it?, so this might be a test to see if it would come out. [/QB]
Could be. Were you tested through Igenex??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I had about 7 western blot tests at various points during the past 10 months. I had 1 band show up on 1... none of these through Igenex
I had a Lyme PCR and a Babesiosis PCR though Igenex. Lyme neg. Babs positive.
My doctor would and will treat without positive lyme test but didn't think that was the case... I didn't either until this month... now I'm not so sure.
Perhaps I should get a western blot through Igenex... it's expensive, er.
thanks for the reply's. i've been lurking here for awhile but this was my 1st time posting on a discussion
Posts: 45 | From MA | Registered: Sep 2007
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"I had about 7 western blot tests at various points during the past 10 months. I had 1 band show up on 1... none of these through Igenex" One Igenex test probably would have been equal in price to 7 through Quest, or some other worthless lab.
"I had a Lyme PCR and a Babesiosis PCR though Igenex. Lyme neg. Babs positive."
A PCR is very definitive IF positive, but doesn't mean much if it's negative. It's like scooping into a swimming pool trying to catch tadpoles.
If you come up empty, it doesnt' mean there aren't any tadpoles.....just that you missed them with the one scoop.
If you will get the 188 and 189 test through Igenex, it will cost you around $200. WEll worth it to know what you're dealing with.
If your dr uses Quest or LabCorp for Lyme testing, then his expertise is in question....in my opinion.
WHICH BAND came back positive on your WB?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I am sero-negative for lyme at labcorp, quest, MDL (tissue pcr) and Igenex.
I am consistently positive for WA-1. Four months of Mepron and zith took the headache away that nearly two years of lyme abx didn't.
I'm not nearly as sharp as most folks on this site, but it seems believable that you can have babs without lyme. Trouble with the theory is lyme suppresses your immune system...folks with suppressed immune symptoms develop other infections that a healthy immune system might prevent. An ID duck told me he didn't think babs was a concern in people with a healthy immune system...think about that one?
Babs WA-1 definately fits this category. I keep thinking if my immune system were not suppressed by lyme, I could nix the babs without the drugs.
We'll see what the latest testing shows this week. But I'm guessing I am still WA-1 positive.
Lyme is clinical diagnosis...I probably have it, maybe a different strain, who knows that my body doesn't respond to or science doesn't understand the response! abx has helped tremendously, I made more progress on three months doxy than 6 months rocephin, but made progress on two solid years abx.
I'm just still not quite right. I follow my instincts as well as my llmd's advise, I have too. The mainstreamers would have killed me by now if I didn't. What makes a doctor an llmd, literacy of the disease and its treatment, which less face it can seem experimental.
Mike
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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posted
Thank you for your advice. I will get those tests for sure, better to know 100%.
My current doctor does use Igenex. It's a long story on how I got here, it resembles so many other people's stories on endless doctor's and worthless tests... but my doctor is a trustworthy LLMD and I am completely comfortable with his care. He would and will treat me for Lyme if even with a negative test if we thought that best. But honestly I didn't think it was Lyme either.
Not remembering what band was positive... but I will ask again... it was a red flag and what lead them to check into the babs.
best
Posts: 45 | From MA | Registered: Sep 2007
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