Hello, I'm a new member here. Some history: My wife was infected by lyme back in 2010 on a trip to san fransisco and surrounding areas. Luckily our dermatologist here in houston is from CT and happened to spot the bulls-eye rash almost immediately. Odd to think that at the time we knew next to nothing about the disease that would soon come to dominate our lives.
based on a recommendation from from a texas lyme support group, we began to travel to see Dr. F in louisiana for about 1.5 yrs. The continuous orals would cause their own issues and off the orals her symptoms would return, slowly worsening.
In 2012 we decided to be more aggressive and have since been traveling to DC to see Dr J. She has been through 13 months of IV therapy and had her line removed Dec 2013. Back on orals she is having a difficult time w the transition and still shows neuro symptoms from time to time.
at this point, as you can imagine, we are quite disheartened after the considerable danger/pain/expense etc that she has been through to get to this point and is not in a better place. This is not an indictment against Dr J, however I want to visit with another llmd to talk about a different perspective on a way forward.
If another knowledgeable doc concurs that we are and have been going down the right road, then we'll hold fast (what other choice do we have?). But if there is another approach to be had I would like the second opinion
Tried to call Dr H, but with his new book I'm sure his phone is ringing off the hook and they are not taking new patients. As you can tell we are willing to travel as Texas is short on lyme knowledge.
any feedback on other docs? I appreciate the time and reading this far...
Nick
Posted by Robin123 (Member # 9197) on :
Welcome - am pming you -
Posted by mng (Member # 43413) on :
thank you Robin
Posted by Lymetoo (Member # 743) on :
mng .. Is this the group you have contact with in Texas? Just sharing it in case you might need it.
no i think it was someone at txlda. Was a long while ago and teh website looks different now so cant be sure
Posted by hopingandpraying (Member # 9256) on :
Read "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
Dr. H, the top Lyme-literate doctor (LLMD), just wrote a new book, entitled, "Why Can't I Get Better?". It is an excellent source of information.
View "Under Our Skin" for free on www.hulu.com Posted by mng (Member # 43413) on :
thank you Terese
Posted by TF (Member # 14183) on :
Dr. J in D.C. has his own unique-to-him treatment protocol for lyme disease.
So, if it doesn't work for you, you should try a top lyme doctor who uses a different approach. For example, the Burrascano protocol. It is the most successful protocol in the world. Doctors in many other countries follow it.
Dr. H in NY follows it, for example.
I and 5 of my friends all got rid of lyme disease and its coinfections by going to lyme doctors who followed Burrascano. So, that's why I believe in it.
Dr. J's protocol is very different from the Burrascano protocol. Dr. J is local to me, and I have a lot of patient reports on him and his treatment.
You always have to wait to get in with the best doctors. So, get on the email list to be notified when Dr. H starts taking new patients again.
He closes his practice periodically and then reopens it again. Take an appointment with anyone on his staff.
Another good rule to follow is to not drop one lyme doctor until you have had an appointment with a new lyme doctor and decided you like the new doctor better.
Posted by mng (Member # 43413) on :
TF - thanks for the feedback and insights. I agree with doc-transition comment. What a long road...
Our first doctor, a Dr F in louisiana, follows Burrascano's protocol. Maybe we didnt give that enough of a chance, who knows. He also is not a top doctor in the field like Dr H. I did put us on the waiting list with him and am researching some other docs in the meantime