posted
Started out with Dr. J in MD. After seven months, moved up the food chain to Dr. S, also in MD. I am no better. Have been on the waiting list for Dr. H in NY for seven months. They just called and left me a message that they have an opening next month. He is expensive...as usual, takes no insurance...$1000 for initial visit! Is this going to be more money down that big 'ol lyme toilet or is it worth a shot?
Any thoughts?
Thanks in advance!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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James1979
Unregistered
posted
My post will not be of much help, and I hope someone more knowledgeable will give you a better answer, but I just wanted to share a thought.
I know that Dr. H is considered one of the best, and he has treated many thousands of patients. From what I heard, his new book should be out within the next month or so, and I'm excited to read it.
The thing that bothers me (and this isn't necessarily something against Dr. H) is that people here have said that Dr. H says there is a 99% relapse rate for Lyme disease. I've run into that quote a few times on this forum here.
That quote really bothers me for some reason. It either explains: 1) Dr. H doesn't treat the Lyme appropriately and that's why he has such a high relapse rate (I DON'T believe this, I'm just mentioning the possibility). 2) Any mainstream LLMD who relies on standard abx therapy will have a high relapse rate (I accept that this might be true, and that's one thing that frightens me). 3) The doctors are doing the right things, but it's the nature of the disease to have a high relapse rate.
Since this has been bothering me for a few days now, that's why I wanted to share my thoughts with you. I'd love to hear if someone else can confirm that Dr. H really did say that, and why he said that.
If case #2 above is true, then maybe you might want to look at some more alternative therapies, like photon, ozone, rife, etc?? Have you ever considered these options? Photon therapy is a hot topic on the forum now, because a lot of people are having trouble with standard abx therapy.
Good luck to you. Please keep us updated!
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I'm really no help. Just wondering if you have done IV antibiotics?
My son is on an antiviral and so much better. I wonder if that would help me. Was that key to his success? Was it IV rocephin?
I'm sorry this is such a long journey to wellness for you.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
James, I believe that quote was discussed a while back on a thread here on LymeNet and the conclusion was that there was an "if" in front of the statement about 99% relapse.
So, the quote came from somebody's notes and it did not really mean that 99% of all lyme patients relapse with antibiotic therapy.
Maybe you could look for that thread to ease your mind. I know that the statement that 99% of all lyme patients who do antibiotics relapse is not true. But, it would be great for you to find the explanation of the part of the talk by Dr. H. where that was said.
Triathelete, without more info about what happened with Dr. S. (like, what he told you was wrong with you, what he thinks is the problem preventing recovery, how long you treated with him, what diseases you tested positive for, etc.) it is impossible to give you advice on what to do.
If I knew I had lyme, and I was no better after seeing Dr. S, then I would go to Dr. H. But, again, I don't know your circumstances. Did Dr. S. believe you had lyme disease?
Posts: 9931 | From Maryland | Registered: Dec 2007
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Also I urge the OP triathletelymie to read that thread, because it has some good info about Dr. H, and also some info about Dr. S vs Dr H.
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TF - Yes, he believes that I have lyme. I tested grossly positive for it (12+ bands, I think...my lyme brain can't remember for sure though...), as well as highly positive for babesia and have all of the symptoms of bart, but don't recall being tested for it ever. He seems stumped at every visit why I am not better. I am too!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Dear Triathletelymie, I have gone to Dr H or years and can say I am better but not back to baseline. He is certainly very knowledgeable about a lot of the other issues in Lyme like heavy metals, herbal treatment, hormones etc. He does travel extensively to conferences, so you may have to see his PA or NP. He sells vitamins and herbs at his office and draws blood which is convienent. I find that he tends to want to put you on whatever protocol he is studying at the time, for example the Cowden herbs. In retrospect I spent a lot of money on treatments that I don't think helped. I think you may be better off going to someone who you can access more easily. This is my opinion. jvs
Posts: 15 | From CT | Registered: Oct 2006
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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