posted
Help. Just saw what I thought was a LLMD yesterday with no help. He was recommended by a friend who is being treated by this practice of Infectious Disease Drs. My Western Blot positive for IgG & IgM 41, IgG & IgM 23 and IgG 18. The dr. said lab tests for Lyme are not that accurate. I was under the impression that Lyme tests had more false negatives, than positives. According to my lab results (LabCorp) the two bands 23 & 41 mean a positive result. I do not ever recall a tick bite (I spent childhood outdoors and camping), but have had Lyme/FMS symptoms for at least 5 years and for the past two years they have gotten worse. He did some trigger point test and nothing hurt but my ankles. I had an MRI of the brain done last year that was normal but that's when my symptoms started getting worse with speech/typos/mixed words/brain fog. I don't tolerate meds well and he thinks that by giving me antibiotics it will be worse for me. I finally got him to agree to give me 30 days of Amoxicilin-I am allergic to Tetracycline. I asked him if I did have Lyme wouldn't the antibiotics help. He said my symptoms may get worse before better. He also said "if" I had Lyme it was in it's early stages. I asked him how would I know, his response my symptoms would get progressively worse. Heck, I think they are worse and I want answers. I would have blamed all of this on FM until my friend suggested I get tested for Lyme. I was shocked it came back positive, but it made perfect sense as I have almost every symptom of Lyme Disease except I've never seen a rash or a tick and my joints are not swollen. I have tested negative for Lupus and Rheumatoid Arthritis. I think I should seek a second opinion. His recomendation is to see a FM dr. take those meds and see if it helps.
Posts: 412 | From Virginia | Registered: Sep 2010
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posted
It sounds like you saw an Infectious Disease duck, not an LLMD.
Go to "Seeking a Doctor" and post that you are looking for an LLMD in your area, and you will get some recommendations. Look for somebody who is a member of ILADS (www.ilads.org) or ILADS educated.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
That is the controversy...ID docs need full CDC + lab results, if you are negative on IGG they think you are newly infected which is wrong.
IGM are early antibodies showing your body is recognising the lyme, IGG antibodies come next, but only with a perfect immune system. Bb tricks the immune system and a good portion of people if not most dont have a good IGG response because their body is not effectively fighting.
Any LLMD will tell you your results are + for lyme. You need treatment for lyme inorder to get well.
I learned the hard way...the ONLY docs I trust are the LLMD's...everything they told me has been true.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
breaking this up so more are able to read it and you'll receive more help
quote:Originally posted by one4islands: Help. Just saw what I thought was a LLMD yesterday with no help. He was recommended by a friend who is being treated by this practice of Infectious Disease Drs.
My Western Blot positive for IgG & IgM 41, IgG & IgM 23 and IgG 18. The dr. said lab tests for Lyme are not that accurate.
I was under the impression that Lyme tests had more false negatives, than positives. According to my lab results (LabCorp) the two bands 23 & 41 mean a positive result.
I do not ever recall a tick bite (I spent childhood outdoors and camping), but have had Lyme/FMS symptoms for at least 5 years and for the past two years they have gotten worse.
He did some trigger point test and nothing hurt but my ankles. I had an MRI of the brain done last year that was normal but that's when my symptoms started getting worse with speech/typos/mixed words/brain fog.
I don't tolerate meds well and he thinks that by giving me antibiotics it will be worse for me. I finally got him to agree to give me 30 days of Amoxicilin-I am allergic to Tetracycline.
I asked him if I did have Lyme wouldn't the antibiotics help. He said my symptoms may get worse before better. He also said "if" I had Lyme it was in it's early stages.
I asked him how would I know, his response my symptoms would get progressively worse. Heck, I think they are worse and I want answers.
I would have blamed all of this on FM until my friend suggested I get tested for Lyme. I was shocked it came back positive, but it made perfect sense as I have almost every symptom of Lyme Disease
except I've never seen a rash or a tick and my joints are not swollen. I have tested negative for Lupus and Rheumatoid Arthritis. I think I should seek a second opinion. His recomendation is to see a FM dr. take those meds and see if it helps.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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quote:Originally posted by one4islands: Just saw what I thought was a LLMD yesterday with no help. He was recommended by a friend who is being treated by this practice of Infectious Disease Drs.
There's the problem right there. Find a new doctor right away. This one will not help you. I'm shocked he gave you any meds at all.
BTW, treating for FM means nothing. All they do is treat your symptoms, not the cause. I was diagnosed with FM 30 yrs ago and Lyme 10 years ago. I didn't get ANY better until I was treated for Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
new Doc....dont waste any more time or money on him....for me so far, this is the worst part, bouncing from Dr. to Dr. and being treated like $#@!. Yahoo groups is pretty good for finding an LLMD.
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Are you in NoVA? If so I know which doctor you are referring to. He does treat Lyme, but not co-infections. He also only treats after a positive ELISA and WB.
I have a friend who thinks he's great, but after finishing with him felt she also needed to see someone else to get what he missed.
There are good LLMD's in the area. If you need names you can PM me.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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I went under the search for drs. on this site, but it was a bit confusing.
Instead of being able to put in a search for a whole city, I had to choose a zipcode.
Many of the reviews are quite outdated.
I live close to Richmond, VA and Washington, DC so a dr. in that area would be great.
The search results gave me a dr. 150 miles away, which if they are good I'd drive that far if I have no other choice.
I am taking those of you up on your offering of drs. recommendations and will send messages to you directly.
I have a friend who was diagnosed over the summer.
I had no idea the frustration she's encountered over finding the right dr.-now I know.
She is the one who suggested getting tested for Lyme and I told her I couldn't have it.
I don't recall that tick bite.
I am so glad I finally got an answer.
Posts: 412 | From Virginia | Registered: Sep 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree that you should post on the seeking a doctor forum. When I did, I got a lot of responses that helped me chose, not just an LLMD but a really GOOD LLMD. In fact, my problem was which one to go to as I got several really excellent choices.
I also agree to get the book Cure Unknown and the DVD Under Our Skin. There is a doctor in the video that moved from NC to DC.
Good Luck.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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