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Old 07-23-2006, 05:08 PM   #1
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Need Opinions/Help Lyme or not?

Hello everyone, I am new to the forum and could use some insight. In 1994 I tested positive for lyme through the very unreliable ELISA test. I was treated with doxycycline for 1 month and started to get better. Symptoms at the time consisted of: Headache,palputations,anxiety,dizziness, night sweats,insomnia etc. and a poisin ivy type rash. This all started after returining home from a trip in upstate NY (wooded area) 2yrs after my initial treatment I became very ill for about 1 week, I had a very high fever 103 or so and I had severe flu like symptoms. My lyme doc at the time thought it was erlichiosis but I tested neg. He gave me 2 wk doxy again and with 2 days of starting the treatment I was playing basketball. I still think it was erlichia. Fast foward to 2002 I again came down with a less severe flu-like illness, and have since had constant daily headaces,blurred vision, very sweaty clamy palms, blurred/fuzzy vision, neck pain/cracks,back pain, fatiuge, eye pain/allergies,sever post nasal drip, tinnitus, overall myalgia and malaise ,weight gain and thinning hair and my most bothersome symptom is a feeling of imbalance without ever having a severe epsiode of vertigo, its an invoulantarty rocking/swaying. I am seeing a CFS specialist in the city who thinks I have CFS/FM. All regular labs come back normal except I show positive Igg results for HHV6, Cytomegalovirus, EBV (I had in 97), Mycoplasma and M.Pneumoniae. My doc wanted to start me on doxy for the M.pneumoniae but I dont understand that b/c i thought Igg meant past infection. Anyway I dont know if it is normal to test pos. for all these viruses or not. I've had 2 different Western blots from Igenex. They both returned neg. but the band readings were all different. i dont understand that either. My most recent Igenex tests showed a positive Babesia (fish) test, with neg. whole blood PCR's. I assume this means I have babesia. Again doc suggested doxy for it. WRONG!!! Does anyone think all this sounds like Lyme and or Babesia, and could Babesia be causing all these sympotms and for so long without making me severly ill? Any input or advice would greatly be appreciated. I am seeing a very good lyme specialist Dr. Sam Donta in MA in about a month or so, but I dont really feel like just sitting here with a pos Babesia test and no treatment for another month, but what can I do. Thanks and PLEASE! feel free to post, I could really use the support at this point (as im sure we all can)
Steve

Last edited by steevo124; 07-23-2006 at 05:44 PM.

 
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Old 07-23-2006, 05:56 PM   #2
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Re: Need Opinions/Help Lyme or not?

Hi Steve, I see from your post that you have been suffering for a long time, sorry to hear that. I don't think that you were treated long enough either time that your doctors gave you doxy, and probably the dose was too low too, as that is very common.

I'm so glad you have an appointment with a lyme specialist, that is the best thing to do. I know it's frustrating to wait, but believe it or not, some people have to wait sometimes up to three months or more to see a lyme doctor. A month feels like a long time when you are so sick though.

Since you can't get any prescriptions until you see your doctor, I guess the best thing to do is be very careful about taking care of yourself right now. Eat a healthy diet, get plenty of rest, and take vitamins and immune boosting herbs so that your body is as strong as possible under the circumstances.

Meanwhile, make sure the doctor knows that you want to get in there sooner and if they have a cancellation you want to take it. Good luck, let us know how it goes for you.

 
Old 07-24-2006, 08:38 PM   #3
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Re: Need Opinions/Help Lyme or not?

Hi steevo124.

Sorry to hear you've been sick for so long. Its tough to live with illness for months and years on end - especially without a clear diagnosis and treatment plan.

Have you ever seen an LLMD (Lyme Literate Medical Doctor)? They can help more than a regular doc. They tend to have more experience treating Lyme and its co-infections.

If you post where you live, maybe someone can recommend a good LLMD for you.

I sure can relate to the off balance feeling. I was teaching ballroom dancing when I got sick. Its not normal to walk into walls and I hardly ever got vertigo.

I've been seeing an LLMD for a year and a half and have been taking massive doses of antibiotics. I feel better than I did back then - not "normal", but better.

I may never regain my balance - but I also will never give up fighting Lyme.

I agree that you were not treated long enough nor aggressively enough.

I've been taking 600 mg Doxy per day for 8 months now.

Hang in there.

Peace and health to you.

 
Old 07-24-2006, 11:33 PM   #4
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Re: Need Opinions/Help Lyme or not?

Hi, and thanks for the responses. I live in the NYC area and....yes, I have seen a "LLMD". I first was treated in 94 by one of the best pediatric infectious disease docs. I have seen Dr. Peter Welsch in armonk ny, who is was rated in Castle and Connly's top doctor list (dont really know if that means anything) he didn't seem to think I had lyme. I then saw a Dr. Zijad Sabovic in Bridgeport CT, who suggested Biaxin and Plaquenil together, but failed to test for co-infection. My CFS doc did all that testing and found the positive babesia (fish) test. My cfs doc suggested doxy for the babesia, but I know that is the wrong meds for that. I feel I prob. need mepron and zithromax for the babesia first, then take the biaxin and palquenil after for the probable chronic lyme. Damn, If I can only write my own prescriptions lol. Anyway I am seeing Dr. sam donta in Ma in about a month, (thats one hell of a drive for me and it better be worth it). Well. again thanks for the responses and hope to hear from more of you.
steve

 
Old 07-25-2006, 12:29 PM   #5
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Re: Need Opinions/Help Lyme or not?

Hi Steve, welcome to the board!

I agree that it sounds like you were not treated long enough or aggressively enough initially. Did you know that Mycoplasma is one of the tick-borne co-infections? Do you have copies of your Western Blot test? If you want to post the results, we can help you interpret them. The CDC requires a large number of bands to show for it be considered positive, yet many people who have Lyme do not have that many bands. Lyme doctors often look at which bands show--some are specific for Lyme.

Babesiosis can cause many of the symptoms you describe: heart palpitations, night sweats, dizziness, headache, and fever. You may also still have the Ehrlichiosis. I would not recommend seeing Dr. D. It is my understanding that he does not treat co-infections. Also, he seems to treat everyone with either Biaxin with Plaquinel or Tetracycline. While these protocols may work for some people, they may not work for everyone and there are many other ones available. Babesiosis is similar to malaria and needs to be treated with an anti-malarial in conjunction with an antibiotic. This is often Mepron with Zithromax (or Biaxin or Ketek).

I know of three Lyme doctors who come highly recommended in NY: in Armonk, Hyde Park and East Hampton. Would you like one of their names?

It is important to learn as much as possible. I recommend reading "Everything You Need To Know About Lyme
Disease (2nd edition)" by Karen Vanderhoof-Forschner and Dr. Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country, and many doctors follow his protocols.

Hang in there okay? Good help is available.

Last edited by ticker; 07-25-2006 at 12:30 PM.

 
Old 07-25-2006, 07:18 PM   #6
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Re: Need Opinions/Help Lyme or not?

Hi,

Welcome to the board but sorry you have to be here.

Do be aware that being "highly regarded", being affiliated with a certain university or hospital, or being an infectious disease doctor does not necessarily mean a doctor is "Lyme literate". The best way to find a LLMD is through other patients that have had good experiences and have received successful treatment, i.e. treatment that helped and/or cured them. Watch out for any doctor that seems hostile even to the possiblilty of Lyme or who insists that you don't have Lyme after you've had positive tests AND Lyme symptoms, they are NOT Lyme literate.

Last edited by TINUVIEL; 07-25-2006 at 07:18 PM.

 
Old 07-26-2006, 12:37 AM   #7
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Re: Need Opinions/Help Lyme or not?

Ticker, thanks for the post.
1st) Yes I would love the names of those docs in Armonk, Its much closer and I could cancel with Dr. D.
2) I was not aware until recently that mycoplasma was a coinfection, but my blood test show a pos. Igg to mycoplasma, so I don't know if that means I was once exposed or that I currently have it.
3) As far as my test resluts go here they are:
1st western blot from Igenex 02-28-06
IGM
18kDa ++
22kDA -
23-25kDa -
28kDa +
30 -
31 IND
34 ++
37 -
39 -
41 IND
45 -
58 +
66 -
73 -
83-93 -
IGG
39 IND
41 +++
45 +
58 ++
2nd Western Blot 07-10-06
IGM
31 IND
39 IND
41 IND
45 +
66 +
IGG
31 IND
39 IND
41 +++
58 ++
All other bands Neg (I dont understand how they could be so different?)
All other test including whole blood PCR's were Neg. w/ the exception of a Positve Babesia (fish) test. I was not tested for Erlichiosis or Bartonella.
Any thoughts on these results would be appreciated. Also PLEASE don't forget to post the names of those doctorst. Thanks
Steve

Last edited by steevo124; 07-26-2006 at 12:41 AM.

 
Old 07-26-2006, 01:39 PM   #8
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Re: Need Opinions/Help Lyme or not?

Ticker, I could also use the other 2 docs names that are not in armonk, thanks. steve

 
Old 07-26-2006, 01:52 PM   #9
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Re: Need Opinions/Help Lyme or not?

Hi Steve. Below is a breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

Bands 31, 34, 39 are Lyme specific bands and yours are IND. I think this is significant. Band 41 is often the first to show. Some people who have band 45 positive, have Ehrlichiosis. I did.

The Lyme doctors I know of in NY who come highly recommended are Dr. Kenneth Liegner in Armonk; Dr. Richard Horowitz in Hyde Park; and Dr. Joseph Burrascano in East Hamtpon. I hope you can see one soon. Keep us posted okay?

 
Old 07-26-2006, 04:37 PM   #10
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Re: Need Opinions/Help Lyme or not?

hi steve! sorry to hear you are not feeling good... i saw your igm from 2006, how come is negative? your IGM is indeterminate and + or +++ plus a positive babesia..you dont have negative signs on the igm..defenitely you need to see a good llmd, i though i might have babesia too, i tested negative in both babesia tests, but had symtoms, so i was told to take artemisin, a natural product for babesia, i couldnt find it since i live in peru but a feel better since starting treatment, lyme, erlichiosis, bartonella are treated with same abx, but babesia is a totally diferent one, is treated same as malaria, since you have to wait for so long, i recommend you call doctor harris from igenex and ask him about artemisia or artemisin, is natural medicine from a plant that is good for babesia, i think you can only buy it on line, some peolple from this site are taking it, i just dont know if they sitll check this site, i havent heard from many peolple that use to write here... good luck and hope to get to talk to doctor harris soon, hugs

 
Old 07-26-2006, 04:42 PM   #11
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Re: Need Opinions/Help Lyme or not?

hi steve! sorry to hear you are not feeling good... i saw your igm from 2006, the last one ,you have many indeterminate and bands with + or +++ , specially band 41, checked with 3, which is a very specific band for lyme, plus a positive babesia....defenitely you need to see a good llmd, i though i might have babesia too, i tested negative in both babesia tests, but had symtoms, so i was told to take artemisin, a natural product for babesia, i couldnt find it since i live in peru but a feel better since starting treatment, lyme, erlichiosis, bartonella are treated with same abx, but babesia is a totally diferent one, is treated same as malaria, since you have to wait for so long, i recommend you call doctor harris from igenex and ask him about artemisia or artemisin, is natural medicine from a plant that is good for babesia, i think you can only buy it on line, some peolple from this site are taking it, i just dont know if they sitll check this site, i havent heard from many peolple that use to write here... good luck and hope to get to talk to doctor harris soon, hugs

 
Old 07-26-2006, 06:25 PM   #12
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Re: Need Opinions/Help Lyme or not?

Brid, thanks alot for your post. I did't understand why they were negative either but under the CDC and Igenex results is said "Negative". Anyway thanks for the advice on babesia. Im going to have to look into that product. I am 99% sure that I had erlichia in the past and I've now tested positive for babesia and mycolplasma, and I have had a positive lyme result in 1994. Since it seems like you cannot have coinfections without having lyme, I'm pretty certian that I have it, I think its all about finding the right MD at this time. Anyhow I am calling Dr. Burrascano in LI NY tomorrow. I will keep everyone updated. thanks again.
steve

 
Old 07-26-2006, 09:27 PM   #13
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Re: Need Opinions/Help Lyme or not?

hi steve, i recommend you call doctor harris at igenex, he explained my results to me, specially i live in a country that doctors know noting about lyme, i spent 9 months feeling really sick and doctors kept telling me was in my mind... so when i got my results form igenex, i called doctor harris, he is very very nice and will explain to you your results..if you have co infecctions, specially babesia and mycoplasma, you have lyme..micoplasma is treated with same abx as lyme, i called doctor burrascano a few months ago, and it takes 6 months to see him, and you need to fax him a paper from your doctor saying hi is willing to work with him,then he will decide wether to see you, i coulnt wait that long so i went to another one... are you in the ny area? there is a very good llmd in virginia and maryland, and the waiting is like a month and a half, let me know if you want their names.. good luck_!

 
Old 07-27-2006, 07:53 AM   #14
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Re: Need Opinions/Help Lyme or not?

Well I have called Dr. Leigner and Dr. Horowitz in the NY area and haven't heard anything back yet. As for Dr. Burrascano, he is not accepting any new patients. As good as a doctor as he may be, he really can't help any of us if he's not accepting new patients, no matter how may seminars he does or books he puts out. Thats just not the same as sitting in front of a person and telling them your individual story and showing them your individual test results. I'm very dissapointed. I guess I'll have to wait on the other docs. I'll keep ya updated.

 
Old 07-27-2006, 08:26 AM   #15
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Re: Need Opinions/Help Lyme or not?

hi steevo! dont get dissapointed... doctor kenneth singleton is in the area, and is very good, a lot of people from this forum, highly recommend him when i first join it, he is in maryland and virginia, actually he was the one i really wanted to see, but since i am from peru, was very compicated for me to get there, so i went to one in ny, he was ok...but he wasnt familiar with co infecctions that is your problem, it was like a month and a half in his waiting list, is also doctor crist, but he is in missouri, good luck! and keep us posted!

 
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