I just got diagnosed with Lyme disease and saw the Infectious disease “specialist” for the second time. I was prepared for this meeting with a lot of questions regarding West Lyme Blot test and chances for fault positive. I had Lyme disease three years ago and wanted to rule out any other possible causes for my recent aces and pains. My ELISA and WLB. IgM was only positive and not the IgG. After educating myself and learning about my symptoms I am pretty convinced I have a stage 2 or 3 (chronic) LD. I have learned that IgM is the first to show up and without IgG positive I therefore got concerned and wanted to rule out other possible causes. My doctor told me as soon as I came in that I cannot ask any question!!!!!!!!!!!!!!!!!! My mouth dropped and he changed his mind and told me I can ask 3 but no more because his waiting room was full of patients. He also told me I have to see a counselor. He is the most arrogant DH of a doctor I have ever met!!!!! I am chocked and do not know what to do. He tried to convince me that he is the best one in the town, well I know he is the only one. And down here in Georgia Lyme disease is not that common. The doctor I am seeing has a different crowd of patient and not that many well educated independent female college professors with lots of question based on their own research.

I am furious, has anyone else out there experienced a doctor like that? Also I would be glad to hear any inputs regarding chronic Lyme disease and lack of IgG,

Thanks for listening,

Tina

Where are you located in Georgia? I will do what I can to help. Also, if you would like to research this yourself, you can use the Lyme Disease Association's doctor referral database: http://www.lymediseaseassociation.org/referral/LogIn.php

There are only 5 LLMDs in my state and only one had openings. After a few months, it was not working out so now I travel 14 hours to see someone good. Many Lyme sufferers have to travel to see their LLMDs so that's something you might have to do.

There are a lot of things that mess up the Western Blot. I was bitten in '97 (bullseye, no symptoms), my symptoms showed up Jan. 2003, and I only had one positive band on the IgG (WB was done last May). My LLMD said that I had to take abx for a month, then take the WB. So, I was on abx at the time of the test, which usually results in false negatives (which mine was). Lyme is a clinical diagnosis because the results are often incorrect. But if you want the most accurate test, get Igenex' Western Blot and make sure that you have been off abx for two weeks (if you are on them). But I would find an LLMD first. He will probably say that retesting is not necessary, since you did test positive.

I hate doctors, in general. I've learned a lot about them since I've had this disease. No one cares about their patients. It's hard not to feel totally helpless. But make changes where you can, and do your best to handle the bad situations you cannot change right now. For example, I have one doc that I need right now, who believes that he is God. He has to be worshipped. If I ask too many questions, he thinks that I am questioning what he knows and he blows up, screaming horrible things at me. I am working on replacing him right now, but until I can, I smile and apologize and quit asking questions.

Let us know if you have more questions. Everyone in this support group has good, helpful experience.

That is exactly how I feel about the infectios disease specialist I am seeing (well, I think I will not go back, I am almost sure I have fired him). hat I desided to do is to try to work with my Family Doctor that I really like and he is concened and wants to help but do not feel like he knows enough. I will see him on Tues. So what I desided to do for now (hopefully I can talk him into that)is to get a second opinion from elswere, I have used the online referalsystem and should probably hear back from them soon. I am very lucky to have some personal conections, a dear friend of mine from Sweden is a Pediatric Neurologist and she works very closely with the Infectious disease specialist at the University Hospital Gothernburg. Among the docs. is the best Lyme Disease specialists in the country so I am hopeful to get some feedback from them. I should hear more in the end of the week. I like in Columbus Georgia and Birmingham and Atlanta is not to far away. I heard about a specialist who really seemed to know what he was doing in Atlanta but he recently got arrested so I guess he is out of the picture. Would be happy to hear what you can find out.

My first battle to fight now is regarding my treatment. I have been put on IV Rocephin for two weeks,last day is Thursday. The specialist thinks thatis enough but I really think it would be a good idea to follow up with 1-2 months of doxcycyclin. Any personal thoghts or experiences? If the docs don't give it to me I will probably try to find it by myself, I figure it out. To say that from me is very unusual, I am so resistant to any drugs, never wants to take anything, are always questioning if it necesary but in this case I feel I really need it, it is not worth the risk not to do it.

Thans for listening again,

Tina