Lyme disease doctor recommendation (Manchester, Merrimack: insurance, showing, work)

[baobob girl]

Hi. I have a 7 year old daughter who contracted Lyme back in July. She was treated by a doctor in CA as we were living there at the time. She was given 7 weeks of antibiotics but when she was retested in November, she came up as still positive. We are now in New Hampshire (yah!!!!)- the Merrimack area, and I am hoping someone out there has a recommendation for a good doctor who is knowlegable about Lyme. I am very scared and would appreciate any help anyone can give me. I am obviously willing to drive to where ever I need to go. Thank you so so much!!!!

[bingo08]

I don't know of NH, but Children's Hospital in Boston is a great hospital.

[Valerie C]

Hi baobob girl

I'm sorry to read of your daughter's diagnosis, especially since it's showing as being difficult to clear. Is her positive test a Western Lyme Blot IgG or IgM? Do you know which band(s) came back positive? It takes a doctor who really knows Lyme to order the right tests, interpret the results and prescribe the best antibiotics for that particular infection. From what I understand, some bands will remain positive even if there is no active infection. My daughter's pediatrician needed to fight with the laboratory to run Western Lyme Blot even tho the ELISA came back negative, and then referred us to a highly regarded Lyme literate doctor.

Unfortunately, although they're finally admitting that Lyme has reached epidemic proportions The CDC is still recommending the ELISA test to be run first, even tho research shows that at least 30% of positive cases test negative with ELISA. In addition to the positive test result, is she still symptomatic? And when she was on antiobiotics, did your doctor recommend a good probiotic? (don't bother with the stuff at CVS, etc) A Market (http://www.amarketnaturalfoods.com) in Manchester NH has a very knowlegable staff to help select the right supplements.

Some of the best Lyme-literate doctors are here on the East coast, and I'll PM with more info if you're interested. Living with Lyme Disease isn't easy, and as you're discovering, in many cases you need to retreat, sometimes repeatedly. My daughter has been on and off antibiotics for nearly 5 years (symptom-free for 11 months!) but each bout of Lyme symptoms seems to get easier, maybe because we DO know which symptoms to watch for. As you've probably experienced, painful knees might be one of the best known symptoms, but certainly not the only one...

Unfortunately, because Lyme Disease can be so difficult and expensive to treat, many doctors who do treat aggressively are being targeted by insurance companies (who have the backing of state medical boards) and have lost their license to practice, leaving many patients without a doctor. For this reason, many Lyme patients and/or their parents are in the habit of NOT giving names on any public website. This little posting has turned into a novel so I'll end it here. If you ever need to vent or ask questions about Lyme, feel free to get in touch. I know how difficult this road can be...

Originally Posted by baobob girl

Hi. I have a 7 year old daughter who contracted Lyme back in July. She was treated by a doctor in CA as we were living there at the time. She was given 7 weeks of antibiotics but when she was retested in November, she came up as still positive. We are now in New Hampshire (yah!!!!)- the Merrimack area, and I am hoping someone out there has a recommendation for a good doctor who is knowlegable about Lyme. I am very scared and would appreciate any help anyone can give me. I am obviously willing to drive to where ever I need to go. Thank you so so much!!!!

[windsong]

Lymenet.org is the place to go for doctors and help. I also have Lyme disease and it is hard to treat, expensive, and unfortunately, many times, it comes with co-infections, which many of us have, also., but you will need a Lyme Literate doctor, and there are so few around. Check out "Seeking a Doctor" at the site, and you can post a request for a Lyme doctor in your area.

All the best.

[fifi25]

Does any one know a good doctor for lyme disease in los angeles, california.

Please i need a referral for my daughter. Please email me

Moderator cut: no posting email addresses if you know any good doctor.

Thanks,

[Valerie C]

fifi25, I would suggest that you find a local Lyme support group in your area, start attending meetings, and find a recommendation for a Lyme-literate doctor that way. Lyme doctor's names shouldn't be discussed in an anonymous forum, which sounds a little cloak and dagger, but it's unfortunatey necessary. Because Lyme Disease can be so difficult and expensive to treat, many doctors who do treat Lyme aggressively are being targeted by insurance companies, who have the backing of state medical boards. Some very good and valuable doctors have lost their license to practice, leaving many patients without a doctor. For this reason, many Lyme patients and/or their parents are in the habit of NOT giving names on any public website. Maybe you can find some help through one or more of these websites:

Lyme Disease Support Groups (support groups listed by state)

Lyme Disease Association, Inc. - Doctor Referrals (you'll need to register to get a referral)

The Lyme Disease Network Support Groups Listing (scroll down to see the list--quite a few!)

http://www.lymediseaseassociation.org/ABCsLYME.pdf (print this out-excellent for use in school, 504 meetings, etc)

If you ever need to vent or ask questions about Lyme, feel free to get in touch. I know how difficult this road can be. I have a daughter who was diagnosed with Chronic Lyme Disease nearly 5 years ago. I wish you all the best...

[baobob girl]

When we lived in CA, we found Dr. Jeff Harris in Malibu. He works with many lyme cases and was very helpful for us. He is right near the shopping center with the Ralphs and Coogies restaurant on PCH. Good luck to you.