posted
I just returned from my LLMD appointment. This was my fourth visit with him. Needless to say, he was surprised that I am not any better. He switched my medicine from ceftin/biaxin/plaquenil/welchol to rifampin/zithromax/plaquenil/welchol as it appears that he is trying to hit bartonella now. I asked him if I could be getting worse and he said that that is possible. I am really bummed! :-( Any thoughts from anyone?
-------------------- ? 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
I am so sorry, its a awful position to be in to not know which way this is going...
My LLMD was the same with me last time, she thought I would be much better than I was when I saw her that was my 3rd appt......
Left me feeling like we were missing something, so I am seeing a new well known LLMD on Thursday.......
This process is bad enough without feeling that your not getting anywhere...I dont have any advice about treatments etc but wanted to let you know your not alone in feeling like this.....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, I have some thoughts. My thought is that you need a doctor with more expertise. Your doctor has only been treating lyme part-time for about 2 1/2 years.
It is not needless to say that your doc is surprised that you are not better. That is a very bad sign. It means that your doc treated you the way he thought would work, and it didn't work.
You need to find a doc who has gotten a number of people well.
Many doctors treat lyme disease, but not many know how to get rid of it for a person.
Many people don't start to feel better until they are treated for babesiosis and lyme. The Burrascano protocol says the treatment of choice for babesiosis is Mepron and zith plus pulsed artimesinin. You have never been on that.
I don't know your dose of ceftin. Perhaps it is inadequate also, so your lyme is not being effectively treated. But after 2-3 months on ceftin, the docs I am familiar with add on the babesiosis treatment--mepron/zith.
The Burrascano protocol says the best treatment for bartonella is levaquin. You are not on that either.
I and all my friends got well by going to doctors who follow the Burrascano protocol, so that's the protocol I believe in. I have seen it work over and over.
Burrascano's protocol is followed by doctors in other countries. It is tried and true.
In addition to antibiotics, his protocol calls for supplements, a certain diet, and a certain type of exercise to boost the immune system and help clear the diseases.
When you are getting worse while being treated by a lyme doctor, that means your treatment is inadequate. Burrascano stated that in a lyme conference in response to a question I submitted.
When the doc's treatment isn't working and he is surprised or confused, that is a sign to find a doc with more tricks up his sleeve.
Suggest you go to a Burrascano type doc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It's tough to say as this same doc has performed miracles for so many according to stories here. Maybe not enough time?
TF has some good thoughts though too.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I don't think it is fair to say much about these LLMDs that are trying to get us well. We do not have all the facts in each other's cases such as allergies, detox issues, methylation issues, etc.
I have been to some of the best ( Burrascanno trained) and they were not right for me as they did not address methylation/detox issues and therefore I could not get started on abxs or herbs until this was addressed.
I'm just saying just because someone is one of the best does not mean it is a perfect fit for everyone. We need to each make our own decisions on who we see, for how long, and more importantly do we trust that doctor. LLMDs help many but some are not helped by that same doctor. Just keep informed and an open mind.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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massman
Unregistered
posted
One muscle test (kinesiology) should tell if you should go Burrascano or Dr. K's protocols.
posted
Hi TF, Your info above is really good. I know this question has been asked many, many times, but does one hit Bart or Babs first? I just (today) started Biaxin and Rifampin for Bart. I have tested postive for both, and have symptoms of both. Any thoughts appreciated.
P.S. Sorry to hijack the tread....
Posts: 113 | From CA | Registered: Jun 2010
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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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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Check into natural medicines. Antibiotics don't work for everyone. That's just a fact.
There's three well known herbal protocols you could look into and there's the Jernigan protocol too. I got better on the Jernigan protocol.
He wrote a very informative book titled, "Beating Lyme Disease" by Dr. David Jernigan. It's available on his website.
I wrote about my experience on this protocol. You can find it under the title "Hansa Center Newest Update", or something like that.
-------------------- ? 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
I saw/see TF's Dr as well...there were many times he was surprised I wasn't better. And I never took levaquin for bart..I took rifampin/doxy and later bactrim.
It took me 2 years to turn the corner. Each of us responds differently. I don't think any Dr has the "magic formula". Unfortunately, it is trial and error, based on experience.
On a positive note..after 4 years, I feel fine, and am coming off abx!
Posts: 561 | From eastcoast | Registered: Aug 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Shoney, did you get better solely from seeing TF's doc? Gee, I guess my links weren't too funny as no one even commented. I thought rhey were pretty unique.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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