posted
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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.
========================
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:
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
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 $$$.)
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
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.
Posts: 236 | From Washington | Registered: Jul 2008
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posted
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.
Posts: 655 | From USA | Registered: Sep 2007
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I'd fly to NY before hitting Romania. Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Please don't share names (even initials) here! What a great collection for the bad guys!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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
Posts: 6286 | From Oregon | Registered: Jan 2006
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
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.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
if you're interested in the integrative approach i would say dr. k in seattle.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
The Rocephin may be causing your heart issues. I had a severe cardiac reaction on oral Ceftin.
Posts: 22 | From Oregon | Registered: Feb 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
A second for Dr. K. in WA. Also many people on this forum have had great success with Dr. W. in Germany.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
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.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
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.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
texas has good one.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
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.
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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