If you could see anyone in the US, who would it be? Are any of the best LLMDs board certified in infectious diseases?
I like my LLMD, but I think we're getting to the end of his knowledge for my complicated case. On IV Rocephin for Lyme and have treated also for bartonella, babesia and currently mycoplasma.
I'd like to find a doctor with a more integrative approach who considers detox and support measures during treatment.
Thanks for any help!
[ 05-20-2009, 10:17 AM: Message edited by: soleil16 ]
Posted by Keebler (Member # 12673) on :
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It's best if the replies are by PM.
We try to protect LLMDs here so their names are not public - unless they have authored a book or articles -- or have their own website that is clearly for all the world to see.
And, you might post in the "SEEKING a DOCTOR" forum.
As you are asking about anywhere, specify if you mean the U.S. - or if you are able to travel to other countries, say, Germany.
Some here are going to Germany for a treatment that involves ...
uh . . . I can't remember . . . someone will be along with this, I'm sure.
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These links might be a start as you search for blending of complementary approaches.
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
Chronic Lyme Disease and Co-infections: Clinical Overview
Rebecca Snow, MS, Rh (AHG), CNS, LDN
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Posted by 'Kete-tracker (Member # 17189) on :
YOur best bet is finding a highly experienced LLMD either in the Northeast (U.S.) or possibly Germany. A couple are shown in U.O.S. (Any good'un will almost certainly be $$$.)
Posted by soleil16 (Member # 16326) on :
I live in California but am willing to travel anywhere and pay anything. My husband wants me to see the very best. He doesn't care what it costs anymore.
My current LLMD is not as experienced as I'd like. He's having a difficulty dealing with the scary cardiac/pulmonary problems that have started recently during my course of Rocephin.
I need someone really truly experienced- but also available and attentive. Again, location is not an issue, we just need another opinion and someone with more success stories.
PMs are very welcome with any good info.
Posted by yanivnaced (Member # 13212) on :
If international travel is ok you might want to check Romania. Marnie recently posted about a protocol there that involved IV abx and magnesium and frequency that results in a cure.
In the USA some people are talking about Envita. I saw a member in another board who is in remission after treatment there.
Posted by 'Kete-tracker (Member # 17189) on :
I'd fly to NY before hitting Romania. Posted by soleil16 (Member # 16326) on :
Kete-tracker, could you PM me some info on who in NY?
Posted by bettyg (Member # 6147) on :
soleil,
please edit your subject line to this since THIS is what you want specifically ok...
LLMD w/integrative approach who considers detox and support measures during treatment; WILL TRAVEL!
just click on pencil to open up subject line and then you'll get attention of those on your protocol to be!
Posted by Keebler (Member # 12673) on :
I don't think there is any such thing as THE best. This is a disease complex with so many facets that no one doctor can know it all. So, what might be a way to proceed is figure out what you think you need now and find out who does that well. This may result in a series of doctors for different needs, or at least that is what I found in my lyme journey. Different approaches in other words.
There is also a hierarchy of experience, as my first lyme doc explained in saying he was "second tier." Able to handle some cases, more experienced than first tier. Third tier handles basket cases.
So, several different ways to look at the situation for patients.
Posted by Lymetoo (Member # 743) on :
Please don't share names (even initials) here! What a great collection for the bad guys!
Posted by TerryK (Member # 8552) on :
You likely need a team approach rather than one doctor who can fill all your needs.
You need an LLMD who works well with others and has others on board who can help fill the gaps.
I'll PM you with further info.
Terry
Posted by 'Kete-tracker (Member # 17189) on :
Sorry, soliel... Just noticed your post. I'm only familiar w/ the biggest NY names, like Dr. R in the NYC area (& in the film U.O.S.)
As above, I suggest you post in the Seeking a Doc forum. I'm sure there are some here who live in the NY/CT area who could PM you with reputable names. The thing about this area is there are docs with a lot more combined experience with the disease & it's co-infections.
Posted by heiwalove (Member # 6467) on :
if you're interested in the integrative approach i would say dr. k in seattle.
Posted by Tracy9 (Member # 7521) on :
She was in Wellesly, MA but you just missed her.
Posted by foggyfroggy (Member # 14707) on :
The Rocephin may be causing your heart issues. I had a severe cardiac reaction on oral Ceftin.
Posted by nefferdun (Member # 20157) on :
On another forum a woman who was extremely sick went to a clinic in Scottsdale, Arizona that she believes cured her using alternative therapies. It is called Envita. You can look it up online.
Posted by bejoy (Member # 11129) on :
A second for Dr. K. in WA. Also many people on this forum have had great success with Dr. W. in Germany.
Posted by sixgoofykids (Member # 11141) on :
Yep, in the US it would be Dr. K for me. I saw Dr. W in Germany and had great success. Now I'm no longer dealing with Lyme, but dealing with the damage it did to my body/immune system.
Posted by FunkOdyssey (Member # 15855) on :
So your IgM western blot is negative now? IgG antibodies might persist for years, but a few months after all of the bacteria have been eliminated the IgM western blot should come up clean.
While false negatives are commonplace with the western blot, false positives are exceptionally rare (99% specificity by CDC criteria, 96% specificity by Igenex criteria).
Failing that sort of objective determination, it seems likely that any continuing symptoms are caused by persisting infection, rather than some kind of "post-lyme syndrome" which was advanced by the IDSA and pretty thoroughly debunked by ILADS.
Posted by Marnie (Member # 773) on :
B.F. or P.K. In the U.S. IMO.
If it is traditional-blended you want...Romania:
"Lyme disease and magnesium deficiency"
Alternative...uhmmmm...Italy.
"Magnesium for Autoimmune" Because I wish WE had access to MgPyrophosphate.
Posted by randibear (Member # 11290) on :
texas has good one.
Posted by sk8ter (Member # 8671) on :
where in Calif are you? PM me I am in So. Cal
Posted by ICEiam (Member # 7519) on :
I personally think some of the best in the US are in the Seattle area. Dr. K for one and there is one that was his right hand "gal" for years that has her own practice now.
She is AMAZING and looks at the Big Picture............detox, gut repair, killing, if needed.........PM me if you are interested in her information.
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