Read the new book written by Dr. H, the top Lyme-literate doctor, entitled, "Why Can't I Get Better?". It is an excellent source of information.
Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
View "Under Our Skin" for free on www.hulu.com Posted by TF (Member # 14183) on :
Also check "Support Groups" on the left side of this page. Contact all that are anywhere near you.
At age 80 I assume your mom has Medicare. Few lyme doctors accept Medicare. So, be prepared to pay out of pocket. Also, if the lyme doctor has not opted out of Medicare, he is not allowed to accept your mom as a patient.
The best lyme doctor in the country is in NY state. But, unfortunately, he is not taking new patients right now. It could be months before he reopens and will start taking new patients.
You can check his website and call his office to find out how to get on his mailing list to be notified when he reopens.
I know of a number of other lyme doctors, mostly in New York City. But, I do NOT recommend that she go to any of them. I have so many bad reports about them.
I truly hope that the lyme support groups can give you the name of some doctor that will help your mom until you can get her in with a top notch lyme doctor.
We nearly always have to start with a doc lower on the totem pole, so to speak, and wait, wait, wait to get in with the best doctors.
Your mom needs a real lyme disease specialist in order to recover. So, good for you for inquiring here. Doctors who are not expert in this disease (meaning 99.9% of the medical profession) do NOT know how to treat a lyme patient. They strongly believe that lyme is RARE and EASILY cured. They will say that your mom has been cured and there is either something else wrong with her or it is all in her head. We have all been told this until we finally crossed over to seeing only exclusively lyme specialists.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
Also, to get your education on this horrendous disease, you should read and study the Burrascano Lyme Treatment Guidelines found here:
I wish you the best. We will help you here all we can.
Posted by Chiantinan (Member # 43466) on :
Thank you for your tips and words of wisdom. I will read up on everything you recommend. I have read about the horrors you all have had to deal with and this insidious disease. It just breaks my heart to think people have to work so hard to get good treatment! I'll let you know how we make out.