posted
Several days ago you said you were going to a Lyme doc at Johns Hopkins. How did the visit go? Asking because the experience of other lymies at Hopkins has been lousy.
If you went, hope you did not mention Dr. L or any other doctor recommended by a support group, lymenet, etc. The good docs are being persecuted (Dr. J, etc) so it is very bad to mention them at known doc hotels like Hopkins.
Sorry you have trouble with hearing lyme info, but there is a huge amount available in writing, so you can learn that way. Lots on the internet, in lyme newsletters, etc.
Good places to start are the Canadian lyme site, the websites for Lyme Disease Foundation, ILADS, and cheryl's site at www.lymeinfo.net.
Also, websites for the Lyme Times and CALDA.
There are also two news sites on yahoo: Robyn's and the one associated with lymeinfo.
[ 27. March 2006, 02:49 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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Wow, a new thread just for me! I feel like a star. Smile.
Yes, I went to Johns Hopkins last Fri. against my better judgement and upon my husband's encouragement. With no surprise & just like you and others have said, it was a waste of my time! I did not mention anybody...only in general terms.
I cannot believe how backward those docs at JH are!! They said that I had all the classic symptoms of Lyme, yet they don't believe that I still have LD.
They even believe that just two weeks of antibiotics is enough for early lyme. They also mentioned that too many lymies overuse abx and that IV recephin was unnecessary for a lot of people. Huh? Does this make any sense??
More or less, they decided that I was going through post-lyme syndrome. Jeez, the serious chronic arthritis/joint pains started last summer, even though I had occasional joint pains over the years, until they got closer and closer and more frequent, 'til it got to the point that the joint pains would move from one area of my body to another without relief in between.
I challenged them with many questions, thanks to all the information I've gathered from this site and other internet sites, support groups and resources. Surprisingly, they didn't have answers!! LLMDs know more than they do!
I went to the Lyme Disease Symposium at Chesapeake College the very next day after my visit at JH, and it was amazing how different both are!! The only similarities were the list of symptoms and the issue of antiflammatory meds within anti-biotics.
I was practically boiling with rage over this whole concept with AMA & CDC guidelines, and JB guidelines. JH is a world reknown place, yet they didn't impress me at all last Fri.
They felt that I should stop taking antibiotics and continue on some kind of antiflammatory meds such as ibutrophen until the joint aches are gone, or to see a rheumatologist. I am still having joint pains, chronic sinus infections and headaches and fatigue...and they want me to quit antibiotics??? AuuggghhhH!
They had no answers when I mentioned that I was off abx for about 2 weeks after being on it for approx. 6 weeks and how the joint pains, sinus infections and headaches became incredible worse. I asked them how to explain that...they couldn't.
Now, I need to uneducate my husband, who went to JH with me, never before showing much interest in learning about Lyme Disease...and now what he knows is what he learned from the docs at JH, which he paid more attention to than to what I have told him for the last few months.
My struggle now is not with the knowledge and information of lyme disease, but with receiving proper treatment!! With only receiving Biaxin prescription from my PCP for 3 months, I have to figure out the rest as no one is gonna tell me how to treat myself and recover.
Posts: 90 | From Maryland | Registered: Jan 2006
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posted
Surprisingly, they didn't have answers!! LLMDs know more than they do! Yea! You got that one all figured out!!
and now what he knows is what he learned from the docs at JH, which he paid more attention to than to what I have told him for the last few months. This may be the most damaging part of your trip to JH. Hope you are able to get him to a support group or another symposium where the TRUTH is being told.
I have to figure out the rest as no one is gonna tell me how to treat myself and recover. Do you have the name of an LLMD?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
You don't have to be a star, baby, to be in my show.
Ha, ha. Words of a song.
Why don't you get copies of the lyme books by Karen Forschner and Denise Lang. Can buy or borrow from public library. If library doesn't have them, ask them to get. I did this and library bought multiple copies.
Then, ask husband to read, starting with Lang's book. Nag him, whatever it takes. You don't need him undermining your efforts to get treatment.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
What's the name of this book by KF & DL? I think I've already borrowed the book from the library and read it. The names of the authors look familiar.
I am lucky if my husband will even pick up ANY book.
I've emailed him copies of various articles to help him understand, and I am not sure that he has read it. As far as he may be concerned, anything to do with his wife, he'd rather sweep it under the rug.
One way or the other, if he did read anything I sent him, it probably didn't stay in his brain, but leaked out quickly like water through a strainer.
Posts: 90 | From Maryland | Registered: Jan 2006
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posted
I was mentioning this for your husband, who doesn't seem well informed. You, on the other hand, do seem informed.
Posts: 8430 | From Not available | Registered: Oct 2000
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