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Hello,
I am desperatly seeking a lyme doctor who will test with the Western Blot & send labs to California. This I feel is most acurrate but I cannot find a doctor who does this.
I have spent the last 7 years dealing with "illness" and most of my symptoms look to be lyme related. In these 7 years I have only been tested once and it came back negative, that was in the very beginning and I do not know what test was used. Since then I have debeloped arthritic symptoms and an know activly taking action to hopfully get my life back.
Please, any recommendations in the Derry/Londonderry or surrounding areas within a 30 min drive. would be graetly appreciated.
(To Greg, thank you for responding to my daughters request for a lyme doctor, I called them and they said they do not do western blot, just that they run the standard blood test. Thank you very much for your response. She is activly helping me to stop this, bless her heart.)
Unfortunately, due to CDC/IDSA (Infectious Diseases Society of America) guidelines, the ILISA is still the first (and sometimes only) test ordered by general practitioners or non-LLMDs. Because Lyme-literate doctors are targeted by insurance companies, I won't share names on a public forum. I'll send info by DM instead.
I had the symptoms as well and a negative test. We agreed to load me up with antibiotics for quite a while and the symptoms went away. I still do not know if I had Lyme Disease or not but whatever I had, along with every other minor infection, went away.
Greg/Valerie,
I too am seeking a LLMD in the Derry/Londonderry area. I have been suffering from what seems to be lyme related symptoms for 9 years. I have had two standard ILISA/ELISA? test that came back negative. My current doctor put me on prilosec ands says its gastro. I am in a fog with muscle pain all over, headaches, my speech is sometimes off. If there is a test I have had it, nothing has come back positive.I have been on a merry go round and cannot find a doctor to test me with western blot.
I am also seeking a Pediatric LLMD for my daughter, she is two. We found a tick in her room over a year ago. Not sure if she was bitten but she seems to be off..Thats the only way I can explain it.. She too little to explain but has been complaining of knee pain.
Hi Michael. I'm sorry to hear that both you and your daughter have been going through what may be classic Lyme disease--it doesn't always have a bulls eye rash, it doesn't always cause knee pain, and the fact that you had 2 negative ELISA tests means nothing--you need the Western Lyme Blot to check for protein bands that are specific to Lyme Disease. I'm sending you a private message with contact information for someone who may be very helpful for you, and wish you all the best!
Valerie, Hi!
I was so thrilled when I logged on tonight to see you had commented! Wonderful! Although, I dont have any messages, I looked around in Direct Messages and only see the one I sent you initially. Would you mind resending info or you can message me directly at michealf1880@yahoo.com
It's sad that this is still happening. It's sad that things haven't changed much since I had it. I had Lyme disease years ago and it was horrible. I found a good llmd who saved my life and I have been good! There is hope. Unfortunately I passed it to my daughter while pregnant even with antibiotics. She had all sorts of issues show up at the age of two. But again, found a good llmd and she is also fine now. She was CDC positive and I was not. I had always heard that the western blot isn't necessarily accurate and it's the blood test sent to the appropriate lab that is...but things could have changed.
It is horrible that after all these years, people are STILL unable to get proper testing from their trusted family doctors, and that our LLMDs are STILL being targeted by insurance companies, and that the CDC is STILL recommending testing/treatment that just doesn't work....
I highly recommend watching Under Our Skin, in full and without skipping through it. Pop it open to full screen, and watch when you can give it your full attention, not 5 minutes here and 10 minutes there, and not when you are multi-tasking.
I've seen the movie a couple of times, both in a public (library) setting, and what you miss when watching it solo is the Question & Answer session that usually follows a viewing, and the feeling that you are not going through this alone. Lyme is a very isolating disease that separates the patient from their family, friends and classmates, and sometimes just being able to talk with other people who are going through this is helpful. I was the caregiver, not the patient, and I found it very helpful.
For anyone who may be interested, the Greater Manchester Lyme Support Group meets monthly at the First Congregational Church, 508 Union Street, Manchester. The next meeting is Wednesday July 17th at 7pm.
Last edited by Valerie C; 07-09-2013 at 07:48 AM..
Reason: added a couple of links
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