DH has Lyme - help

[trales]

So we finally figured out why DH has been so sick. He tested Lyme + and is far enough along to be affecting his liver and heart. I have been looking on the web, a scary, scary, crazy place. But I was hoping some of you would be able to help us find a doctor who specializes in Lyme in the Boston area. Our PCP wrote us off. He has only ever seen 2 cases of Lyme and told us to find a specialist. He did not know where to start. While I totally respect that, AHHHHH, where do we begin. Right now he is on Doxycyclene 100mg twice a day. According to stuff I read that is underdosing, they also think he has a co-infection of another tick born illness.

The kicker, we leave for Iceland on Friday and would like to have a treatment started before we go.

Help us find resources and a Doc. Please.

Thanks,
Tracey

[ThreeofUs]

Is there still a Lyme Disease Unit at Boston University Medical Center? As I recall - though it's been a few years - they have some real expertise there.

Also call the folks on the Lyme Disease support site - they probably have more recent info -
http://www.lymesite.com/support%20boston%20area.htm

I'm so sorry to hear this! Good luck getting help!

[caleymama]

No Boston area advice for you, but I wanted to say that I hope you quickly find the help you need! My younger DD and my DH were diagnosed with Lyme earlier this summer, one right after the other. My DH was prescriped Doxycycline also, but he started treatment within a day or so of the bullseye rash appearing on his wrist and no other infections were suspected. He was prescribed the same dose as your DH - 100mg 2x a day for 10 days.

Iceland - wow!

[maestramommy]

Tracey, I'm pming you.

[bubbaray]

No BTDT experience, but many hugs coming your way. I hope he gets this sorted out before your trip!

[chlobo]

Sending you a PM.

[Sillygirl]

You are in a city with more medical super-specialists than perhaps any in the world. Call the Massachusetts General Hospital, ask for the Infectious Disease division.

[Rachels]

Can people copy me on these PMs? I have a friend in the area whose son is critically ill with Lyme, and we want to speak to every specialist we can find.

OP, I'm so sorry you're facing this. It can be a long, hard road. I'll find out the name of the person my friend's child is seeing now and send it on.

[DrSally]

I'm sorry you're dealing with this! I just moved from CT to another high lyme area, and I was always afraid of it. I agree with pp about contacting Mass General. There are so many medical specialists in Boston. They should be able to get you started in the right direction. I'm surprised your doctor wouldn't at least do some footwork to find you someone.

[caleymama]

I agree with pp about contacting Mass General. There are so many medical specialists in Boston. They should be able to get you started in the right direction. I'm surprised your doctor wouldn't at least do some footwork to find you someone.

I've been thinking about you and your DH Tracey, and I agree completely with the PP, especially since your husband is already so ill.

I'm in an area that sees a lot of Lyme also and based on the # of ticks we have just around our house, we were not surpised that DD and DH contracted it. Both DD's pediatrician and DH's physican said that with their symptons around here, they would begin antibiotic treatment for Lyme right away. DH did subsequently test + for Lyme from the bloodwork done at his office visit (to the surprise of his Doctor) but DD never had bloodwork done. Her (classic) symptoms cleared up with the abx, though, and we are confident that is what it was. I am a little wary of any lasting effects for her but I'm not letting myself worry about it now.

[chlobo]

I'm going to disagree here. Don't waste precious time with Mass. General. I had one friend misdiagnosed by a doctor from Mass. general and she ended up being admitted to the hospital. I have another friend whose husband sees a Mass. General physician and he didn't recognize the symptoms of Lyme. Unfortunately, being in the city, doctors don't see a lot of Lyme even though its epidemic in parts of Mass.

I think you should seek out a prominent Lyme specialisst. I emailed you some names. Let me know if you got them. Supposedly, the best Lyme doctor in our area is in CT, although I sent you names of several doctors, some of whom are in Mass. But the dr. in CT is the one I've heard the most positive information about. And don't wait. In fact, if he's symptomatic, I might consider postponing your trip.

[caleymama]

I'm going to disagree here. Don't waste precious time with Mass. General. I had one friend misdiagnosed by a doctor from Mass. general and she ended up being admitted to the hospital. I have another friend whose husband sees a Mass. General physician and he didn't recognize the symptoms of Lyme. Unfortunately, being in the city, doctors don't see a lot of Lyme even though its epidemic in parts of Mass.

I think you should seek out a prominent Lyme specialisst. I emailed you some names. Let me know if you got them. Supposedly, the best Lyme doctor in our area is in CT, although I sent you names of several doctors, some of whom are in Mass. But the dr. in CT is the one I've heard the most positive information about. And don't wait. In fact, if he's symptomatic, I might consider postponing your trip.

Fair enough - I was more agreeing that the OP should find a specialist, or at least someone besides an unhelpful PCP. I just assumed a major hospital system would be a good place to start. Not being from that area, though, I guess that may have been an incorrect assumption!

[trales]

I got the names of all the doctors you guys sent and just found two doctors at Boston University medical center that are Lyme specialists. We are going to make a lot of phone calls tomorrow. As of right now I have the names of 7 doctors, hopefully one will be able to get him in right away.

I really hope that he will become better with quick aggressive treatement. We have a lot of questions and other things now to ask, so I feel like we are much better prepared to meet with the doctor.

Thank you all. Keep sending info, we want to be as knowledgable and informed as we can be.