Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
On March 13, I was diagnosed with Lyme Disease...for the 3rd time. The last time I was diagnosed was in Summer of 2011. The time before that was in 1987. After my doctor (well Nurse Practitioner) informed me that I was infected, once again, I said, "well this is the 3rd time I have been diagnosed, should we be concerned that this is Chronic or something?" She said she'd call me back because she was unsure. When she called me back she said that this is a new infection and that there's no need to worry about the infection coming back. After this bout of antibiotics (which make me sick to my stomach) I will be cured.
So I had physical therapy today because I have been having trouble with my right leg for years and now it's gone down to my knee (which is why I made them check for lyme.) The physical therapist made me feel like a dumb ass because I really don't know anything about lyme and have never really read up on it. I know a little about it, but I need to know more.
Can anyone please tell me a good site that can explain it really well and is not above thinking there is such a thing as Chronic lyme disease?? I was just reading up on how lyme can cause hormonal issues and those issues can effect the healing process and I have hypothyroidism and was just recently diagnosed with Polycystic Ovarian syndrome.
Should I seek a specialist??
So I had physical therapy today because I have been having trouble with my right leg for years and now it's gone down to my knee (which is why I made them check for lyme.) The physical therapist made me feel like a dumb ass because I really don't know anything about lyme and have never really read up on it. I know a little about it, but I need to know more.
Can anyone please tell me a good site that can explain it really well and is not above thinking there is such a thing as Chronic lyme disease?? I was just reading up on how lyme can cause hormonal issues and those issues can effect the healing process and I have hypothyroidism and was just recently diagnosed with Polycystic Ovarian syndrome.
Should I seek a specialist??
What an odyssey to be embarking on! I hope you are feeling better by now.
I'm sorry to hear you have Lyme Disease.
I saw that you live in ME and I wanted to give you some information
on a great online Support Group for just people that live in ME.
I live in Winterport (up near bangor).
If you go to this website
http://groups.yahoo.com/neo/groups/mainelyme/info
at the bottom is an email address where you can ask to join the online support group.
I think the group of people are great and there is a lot of
really good information on there.
Also, I know that there are a few local support groups near Sanford that meet each month and you can get all this information there.
I would also love to hear how it went at the new Dr's office.
There are good points of seeing Dr. Carr. He does take insurance. He is a rehabilitative Dr. so he sees more than lyme patients. I was on abx for a long time with no change. Turns out I have MS also. He didn't pick up on that, but I was a confusing case. I took several different abx and combos.
My husband had a better experience, with more aggressive abx, but still unresolved once we stopped seeing him. He rarely prescribed IV at the time we stopped. We both had very severe cases of cognitive dysfunction and it never resolved.
I still would recommend Dr. Carr any day for two reasons. He is diligent and takes time with his patients however, you must get used to his "bedside manner". He only wants to know the answer to the question asked. He is in control of the appt, but then you can ask him the questions when he is finished. 2nd, he takes insurance which is rare. It took me 3 appts to get used to just being quiet, trying to answer his questions in a direct manner, then getting the answers I needed. He also returns phone calls. Really. He is not rude, it is just how his brain processes your info and he tries to maximize his time. Give him a try. He does not believe in supplements unless your bloodwork shows a deficiency, like Vit D for me was immeasurable it was so low so he gave me 50,000 i.u. 3 times a week. It helped, a lot. I'm happy to answer any other questions.
I agree with some of what Belle510 wrote. Carr had the weirdest personality of any MD I had ever seen. It was like being in the witness stand in a courtroom and being cross examined by a hostile attorney. I know he liked it when I asked him if he was ever a lawyer. He is thorough, however and spends lots of time with you. No 10-20 min appt and rushing you out the door. I then got a full writeup of our discussions that day in the mail and he was about 95-99% accurate. Also, after I called to cancel my 2nd apppt, I was very surprised to get a nice letter from Carr encouraging me to continue medical treatment and that I was always welcome back.
Dr. Elson is a nice guy and very easy going but tougher to see. Seems he is very booked up and visits are not more than 20-30 minutes. I was pawned off 2x to a NP and PA that work there. So, 4 visits to his Wellness ctr. Elson is an LLMD like Carr is but Elson is also part of the Academy of Environmental Medicine which means he will test for things that most MDs will not. Carr told me he was impressed by Elson tests but disagreed with his mold infection diagnosis from blood tests claiming they are unreliable. I was unable to find anything on the web to say whether they or not but did not look for that long.
Elson also listened to all my symptoms the 1st time I saw him and did not disregard me as nuts or a hypochondriac. All his staff are nice, very laid back but give me the feeling they do not care (meaning the NP and PA). Another negative, when dealing with them by phone for medical reasons (the staff who make appts are very nice), you will usually get contacted by an RN who seems very unhappy and always in a rush. Not pleasant. You will never be able to talk to Elson, his PA or NP on the phone. Only non-medical staff, this angry RN and an allergist.
Elson and company really believe in alternative medicine and try to give you supplements instead of prescription meds but will give meds when asked for. I had to ask for a antibiotic and choose the script antiviral over their supplement that they claim does the same thing (I used both and felt no improvement). I do not like that he sells so many of the vitamins and supplements there and for a profit. Makes me feel used. I spent close to $400 on them down there and another $200 on my own locally.
I appreciate they were nice to me and diagnosed me with 5 illnesses after feeling sick for 10 years with ZERO diagnosis from any of the many previous MDs I saw but the bottom line after all those meds, vitamins, supplements and diets (to eliminate mold infections and Candida) is that I feel worse then ever.
So, I guess for the 1% of you on this SG that live in the NH, VT and Western MA area and need an LLMD, its really a "pick'em" between the two. Elson has the better personality but maybe Carr would have done more for me. Don't know. Carr is only 45 mins away from me where Elson's Wellness place is about 2 1/4 hours away. Kind of hassle driving that distance when you feel as badly as I do and I missed my last appt with the PA because I felt too sick to go and more importantly, wondered what they were going to do for me? Did so many blood tests, one urine test and even a breathing test (which I failed). My lungs and sinuses have been chronically full for about 5 years now. So, what new great meds were they going to give me? Oh, some of the scripts from the Wellness ctr get screwed up because they use email only to your drug store. No writing or printing them out there and handing the scripts to you.
Hahaha.....since this SG is read all over the country and by a few foreigners, how many people will read all this Carr vs Elson crap I just wrote? Not many to put it lightly but I noticed how inactive this group had become going back a few months.
Good luck to all. Hope whatever you are doing works to reduce your Lyme symptoms.
I think you should see several different doctors and continue to fight with lyme disease.But I heard that you took antibiotics, I think it isn’t a good treatment. I was a Lyme disease patient once, after few years, I found out a serial herb medicine which called DR ZHANG. They’ve been doing a medical study on Lyme disease by using herb medicine for a real long time. By using their medicine, my symptoms has been greatly relieved. And You can find helpful help on there website www.hepapro.com. Wish you get well early!