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Old 02-11-2012, 08:21 PM   #1
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LLMD - Use Caution

I'm in the process of trying to track down the cause of my chronic medical problems. I live in an area endemic to dear ticks and have been bitten a number of times so checking into Lyme Disease was an obvious path. At first I knew very little about Lyme Disease so I began studying the disease and found a so-called LLMD. When I first met with this doctor, I gave him the benefit of the doubt. His willingness or maybe even zealousness around believing I had Lyme Disease really bothered me. He told me only one Lab was competent so of course I had the Western Blot test done by this LLMD friendly lab. I came up positive. At first I was happy to have a diagnosis but the course of antibiotics this doctor wanted me to take seemed extreme. He also seemed convinced I had co-infections without any real evidence.

So I looked more deeply into the Western Blot test and this lab and discovered the huge controversy between the so-called LLMD world and the rest of the infectious disease world. I discovered that virtually all the mainstream infectious disease experts and this wild bunch of typically alternative MDs had grown into a war that was apparently causing ill patients to get lost in the battle. The CDC and Infectious Diseases Society of America were on one side while this group of alternative doctors were on the other. The CDC and IDSA seemed to be forced into being TOO conservative while the LLMDs were behaving like they were in the wild wild west diagnosing everyone with Lymes. Since people like myself who are ill are desperate for a diagnosis and treatment, we are susceptible to doctors who are a bit quick at the draw to diagnose. That led to the birth of the LLMD idea which is supposedly a doctor literate at Lyme Disease. This is a non-medical term and any doctor can call himself an LLMD since it draws many patients and $$.

The bottom line is that YOU need to make sure you are being diagnosed correctly before undertaking and dramatic treatment like IV antibiotics. You need to make sure that the Western Blot test is properly interpreted. The lab I was tested at only required 2 IgM or IgG bands for a positive while the CDC and IDSA require 5 bands. The bands are antibodies that are measured by their weight in Daltons. If a molecule in your blood weighs the same as a Lyme Disease antibody, it will show up as a band creating a false positive. There are other molecules that can show up and the 2 band tests is sensitive to a false positive. On the other hand, the CDC 5 bands is more likely to have a false negative.

So if you are a patient who has found an LLMD, you need to make sure he/she is not a zealot and is using the test correctly. After much reading, I came to the conclusion that the CDC 5 bands is overly risky toward missing a diagnosis while the LLMD favored lab is bending toward a false diagnosis. So what can you do? I would recommend getting the Western Blot IgG/IgM test done by 2 labs and looking carefully at what they each found. There is also a new culture based test that just came out and has the promise of helping sort this mess out buts its still not proven. If you were tested by 2 labs with the Western Blot and came up with 3-4 bands on each and a positive on the new culture test, you probably have Lymes. On the other hand, if you come up with 2 bands on the special LLMD lab and zero on the other lab plus the culture is negative, you probably don't have Lymes unless you actually saw the bulls eye when you were bitten.

Just beware of an LLMD giving you a positive Lyme Diagnosis. Make sure you look at why and if it was doubled checked with another lab and ask for the culture tests.

culture

 
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Old 02-12-2012, 09:15 AM   #2
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Re: LLMD - Use Caution

Hi Hyperioneuropa, that is fantastic advice.

I just wanted to throw in there that testing by any lab for Lyme or many other things, such as pregnancy, thyroid, cancer...ect ect...are not always accurate. But we still try to find the right specialist in the field to help diagnoise on symptoms.
I have had false pregnancy tests, my father whom died of so called cancer, his test up till the day he died never proved that he had cancer, doctors went on hi symptoms...

So just like any other medical field there are good docs and bad docs, as you know.

I am sure since you have learned about lyme, that there are 300 to 400 different stains for this bacteria around the world. So the number one lab they try to test for the strain that you live around. Or if you have traveled then they ask where...
Because the bacteria does not like oxygen it hides out side of the blood stream. Imbeddes in tissue and bone...so possibly some one needs to do a tissue sample along with a blood test. And then they bacteria is so clever it creates a cyst around itself so that also makes testing hard.

This is such a complicated disease. And from what i have been through and all the negative test I have had, and almost lost my lfe because of this bacteria and its co-infections...I was finally after eons of years clinically diagonised and started treatment. I still after 11 years of treatment am still having problems.

I do think that there are mistakes in diagnoising patients sometimes they are told as yourself that you have lyme when maybe you have some other bacteria or viruses or parasite. Or even heavy metal poisoining.
I still to this day do not go to gerneral practiners that told me there was no such thing as lyme and by now I should be well and I had better learn to live with it. It is a crazy world as you see.

So yes, everyone needs to find the "right" doctor for themselves. But we also need to be our own advocate.

Do you know what is wrong with you, and have you started any treatment for it?

Hope you have found your answers, going to doctors can be frustrating...

Good luck to you!

Jodie

 
Old 02-12-2012, 12:00 PM   #3
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Re: LLMD - Use Caution

Quote:
Originally Posted by jojo View Post
Hi Hyperioneuropa, that is fantastic advice.

I just wanted to throw in there that testing by any lab for Lyme or many other things, such as pregnancy, thyroid, cancer...ect ect...are not always accurate. But we still try to find the right specialist in the field to help diagnoise on symptoms.
I have had false pregnancy tests, my father whom died of so called cancer, his test up till the day he died never proved that he had cancer, doctors went on hi symptoms...

So just like any other medical field there are good docs and bad docs, as you know.

I am sure since you have learned about lyme, that there are 300 to 400 different stains for this bacteria around the world. So the number one lab they try to test for the strain that you live around. Or if you have traveled then they ask where...
Because the bacteria does not like oxygen it hides out side of the blood stream. Imbeddes in tissue and bone...so possibly some one needs to do a tissue sample along with a blood test. And then they bacteria is so clever it creates a cyst around itself so that also makes testing hard.

This is such a complicated disease. And from what i have been through and all the negative test I have had, and almost lost my lfe because of this bacteria and its co-infections...I was finally after eons of years clinically diagonised and started treatment. I still after 11 years of treatment am still having problems.

I do think that there are mistakes in diagnoising patients sometimes they are told as yourself that you have lyme when maybe you have some other bacteria or viruses or parasite. Or even heavy metal poisoining.
I still to this day do not go to gerneral practiners that told me there was no such thing as lyme and by now I should be well and I had better learn to live with it. It is a crazy world as you see.

So yes, everyone needs to find the "right" doctor for themselves. But we also need to be our own advocate.

Do you know what is wrong with you, and have you started any treatment for it?

Hope you have found your answers, going to doctors can be frustrating...

Good luck to you!

Jodie
I've been my own advocate studying possible causes of my weird chronic symptoms and driving my own differential diagnosis. I've identified a possible cause either on my own or with a number of doctors I've worked with and exhaustively tested and or used empiric treatment ( when safe) to eliminate possibilities. My experience is that its crucial to find competent doctors who have gone beyond their old medical books and have both curiosity and compassion. I've run into both over zealous doctors who seem so hung up on diseases of which Lyme is one of them and others who can't be bothered and told me 8 years of chronic severe problems is in my head. I avoid these types but have found some really good ones. One was very competent at Lymes and reversed another LLMD's diagnosis by being much more careful.

I also was diagnosed with IBS by my HMO's GI specialist who then just dropped the ball even though IBS has many possible underlying causes. The doctor that helped me get the Lymes diagnosis right also helped me treat what turned out to be a parasite called Blastocystis Hominis. After being treated empirically with Flagyl ( which is lousy) twice, I got an amazing elimination of many symptoms. We then found the BH with testing and after 30 days on Alinia, I'm still symptom free but last stool test showed its not gone - probably suppressed by the anti-parasitic.

I was tested for many infectious diseases and the obvious like Hypothyroid, adrenals, Testosterone, MS, etc.. We discovered I had very high HHV-6 and HSV-2 titers, mycoplasma and toxoplasmosis and low sub-type 2 and sub-type 3 IgG antibodies. This suggested viral CFS/ME was worth exploring seriously. I've found a good specialist who is highly focused on viral CFS/ME research. I'm hoping he can either eliminate this or treat me with some of the latest approaches. I'm now getting tested for B cell over activity ( the HHV-6 invades the B cells) and Natural Killer Cell under activity ( NK cells seem to become incompetent) as seen in viral CFS/ME cases. Those tests are not yet back but I'm considering a Valcyte or joining a trial of rituximab or an upcoming trial of a new anti-viral ( lower side effect profile than Valcyte) that's in stage 3 trials.

So I'm fairly sure I had a parasite causing one set of GI and allergic symptoms and I may have viral CFS/ME but the jury is still out. I'm still looking but focused on ridding myself of the parasite and digging into the viral CFS/ME hypothesis until I know one way or another if that's another problem.

 
Old 02-12-2012, 03:11 PM   #4
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Re: LLMD - Use Caution

Sounds like you are on the right track..

It took me many years to find the specialist that I am with now. He treats the Chlamydia Pnumoniae bacteria, mycoplasma, thyroid, EBV, CMV, and other herpe viruses.

I am also doing treatment for parasites...

There are just so many reasons why people have CFS, Fibro, M.S., ME...ect finding the answers is so individual.

I am happy for you that you know most of the things that are bothering you. As you know, many of these have the same symptoms. Which can throw doctors off.

Sounds like you are on your road to recovery!

Take care...

Jodie



 
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