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» LymeNet Flash » Questions and Discussion » General Support » Had my 1st LLMD apt today!

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Author Topic: Had my 1st LLMD apt today!
MamaBear11
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I am pleased with how it went and feel like I'm inching closer to an answer! And boy, is that a gooooood feeling after 14 years!

For those of you interested, I posted an update about the appointment on my blog.

www.carryonkristin.blogspot.com

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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Lymetoo
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That's great!! So glad you are on your way!!

PS... It really scares me that this man has friends at Yale and Harvard. [Eek!] For your sake, I hope he doesn't have to call on them!! [Razz]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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Is he ILADS-educated ? An ILADS member. Not that he has to follow ILADS but having that connection to seminars, etc. is very valuable and helps you get an idea of how much he knows about lyme.

I also have a very, very serious concern about what things he said about fibromyalgia- and the way he said that (as posted on your blog).

I also think a doctor needs to see you in person more along the way. So much can be conveyed by our body. But that does not bother me nearly as much as

What lab is doing your lyme tests? Did both IgM and IgG Western Blots get ordered?

Did he order tests for other tick-borne or chronic stealth infections? Will he later? Did he clinically assess you for any of those, or mention them?

Still, with my concerns, I'm assuming you got his name here (?) or from you local support group and that you talked with a couple other lyme patients in the area and heard good things - and that, maybe, some got better with his advice.

Did he tell you to take Probiotics and Liver Support (Milk Thistle, etc.) before you start the antibiotics? Hope so. If not, be sure to check Dr. B's self-care guidelines and nutritional supplements:

--------

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

----------------------
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

** Nutritional Supplements in Disseminated Lyme Disease **

J.J. Burrascano, Jr., MD (2008) - Four pages
-

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MamaBear11
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Lymetoo: are you scared of his Yale/Harvard link because of the good 'ol boys network that doesn't believe in chronic Lyme? I don't know much about that, but I do have a copy of Under Our Skin on its way to me as we speak. Maybe that will help clarify things for me. It's all so confusing!

I can tell you that this doctor seems to be very well versed in Lyme and how to treat it. He mentioned a lot of the things I have been reading about here and in Dr. Burrascano's guidelines, so that gives me some hope.

As for the fibro...we'll see. It was at least nice to know that while he is treating me for Lyme, his friends at Y/H may be able to help me with regards to my Fibro. No one has been able to do that for 8 years.

Keebler: I never would have thought or known to ask some of those questions. I think a followup call is in order tomorrow. Thanks!

Thanks for your input!

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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Keebler
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Glad to hear he seems knowledgeable. We just have seen (and been) in appointment with doctors that turned out not to be so educated.

It may be that he's just using the fibro term to describe pain, etc. that has previously been erroneously reported as fibromyalgia.

It's an easy umbrella term to grab a hold of, I guess. But, lyme can explain every single symptom that is listed for fibromyalgia - and then some.

I do hope he assesses for coinfections, too. Lyme may need to be addressed first (or babesia might) but it's vital to consider the big picture.

I'm glad the appointment went well. We just want to make sure the next ones will, too. Take care, now.
-

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MamaBear11
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Yep, co-infections are on the menu for this round of blood work!

Thanks again for your fantastic advice!

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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Oh, dear MamaBear!!
From your blog, I believe you just wasted time & money with IDSA Duck X who knows little of the latest science regarding the LBb spirochete, co-infections, and proper treatment.

Do you actually know of 3 or more people that this "Duck X" got into long-term remission from LD?

You wrote, "He spent the first half hour laboriously reviewing my medical history for the past 14 years. Then he spent almost an equal amount of time performing a thorough physical exam."

Were he an ILADS-trained LLMD, he would have been able to make clinical diagnoses of your co-infections, if any.

The first appt with my LLMD was about 2 hrs. The LLMD & her assistant both told me that every page of my medical records (a big stack!) would be read before my next appt and I believe them! My LLMD spotted my co-infections and told me the signs & symptoms I exhibited of each.

You wrote: "His initial thought, based primarily on the fact that I have some pretty heinous tender points, bilateral and in both upper and lower extremities, is that I probably do in fact have Fibromyalgia. I couldn't hide my disappointment, and Dr. X definitely saw my face fall when he said that. He quickly followed that up with, "But I have a few tricks up my sleeve for treating Fibro, and if those don't work I have some fantastic colleagues at both Yale and Harvard that I am confident can help you."

RUN! RUN! RUN!

It sounds like you may have fibromyalgia, but i'm not a doctor. And your Duck X just says, "probably"!? How will he ever be sure? After you spend more paychecks on his "fantastic colleagues"? It's a clinical diagnosis and he had you in his clinic for an hour, right?

Fact: Fibromyalgia is caused by long-term sleep deficits brought on by untreated or under-treated chronic Lyme disease.

Please don't pay this brain-washed, uninformed IDSA Duck X to experiment with "tricks" on you 'til he decides to send you to some Yale comrades so you can put their kids through college, too!

imho, you'll be most successful with a LLMD trained by ILADS and still active as an ILADS member, sharing the latest techniques and data with colleagues who get Lyme sufferers into long-term remission.

You also wrote: "He is really curious now what is going on besides Fibro. He ordered an all-you-can-eat buffet of blood work."

I wouldn't pay to educate this guy!

My well-respected, successful LLMD was able to make clinical diagnoses of my co-infections, then ordered appropriate blood work targeted to my individual needs.

Regarding blood work, you wrote: "co-infections! ('cause Dr. X says you can't test for one without the other.)"

Another indication of his lack of understanding. Of course one can test for a co-infection independent of a Lyme test! As others have asked, which lab are you using? If not IgenX in CA, MDL in NJ, or Stony Brook in NY, your "results" for LD and co's may mean little. Most labs do not have the technical skills & expertise to test for all the common strains of co-infections that our LLMD's stay up on.

And more to the point of your office visit, all these diagnoses are primarily clinical. Duck X cannot treat LD properly if he cannot recognize signs of co-infections when you present in his office.

Another shocker: "Then Dr. X asked if I wanted him to prescribe me antibiotics to take while we're waiting for the blood work to come back."

Is he a waiter or a bartender? Since you'd like to get well without wasting more time, you need an experienced, educated LLMD. Duck X is not Lyme-literate.

In addition to reading on the links Keebler offered and watching Under Our Skin soon, I urge you to buy two books or get them via your library system asap:

Pamela Weintraub's "Cure Unknown"
and
Stephen H. Buhner's "Healing Lyme"

Please create a new post in our "Seeking a Doc" forum so members can assist you.

All best wishes,
Smile

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Keebler
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I can't believe he did not make a point of telling you what lab he was using. That is not a very good sign, I'm sorry to say.

We aren't trying to grill YOU here, really. We just want to be sure you have a doctor who is really lyme literate. Even if he has his own thoughts and treats each person differently, it is vital to know the ILADS research, to have attended some seminars, to talk with ILADS doctors - not just his old college friends.

More questions for you, then:

* What happens if your lyme test comes back negative?

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

=========================

* If positive for lyme, how will he treat? Will he address the cyst form? Will he use combination treatment? For how long?

* Does he follow IDSA guidelines, ILADS - or has he his own approach. Ask him the ILADS researcher whom he most admires?

* What are the top support supplements he suggests?

* Ask what he thinks of Alan MacDonald's work on the lyme biofilm and how he addresses the matter of BIOFILM issues.

(Sadly, Dr. MacDonald is far too ill to work now, but his research is still stellar.)

* Ask what he thinks of EVA SAPI's work on the other forms of lyme and how his treatment address issues she's working on.

===========================

http://www.ilads.org/lyme_research/lyme_articles4.html

Lyme Disease: Two Standards of Care

by Lorraine Johnson, JD (revised 2005)

=========================

This explains WHY you need an ILADS doctor:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

========================


http://www.underourskin.com

Documentary: UNDER OUR SKIN

========================

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

============================

Lyme is not the only chronic stealth infection that can cause "fibromyaglia" - did your doctor mention assessing for any of these after your lyme tests came back? Or even if they do?

In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA #6911 posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.

=========================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=020605

MAKING THE MOST OF YOUR LLMD VISIT

=========================

Researcher Eva Sapi has some fascinating observations. It's not just the spirochete: Borrelia b. has many forms and, within those, dozens more.
--------------

http://www.youtube.com/watch?v=AmvgOfIN_8c&feature=related

Excellent Video narrative with Eva Sapi.

ADRSupport -- April 03, 2010

-- This video is a 10 minute clip, part of a 70 minute interview with Dr. Sapi from the University of New Haven.

She is credited with being the first researcher to demonstrate that Lyme spirochetes can actually create their own complex biofilm community to survive indefinitely within their hosts; both human and animal. In May, the full transcript will be made available on the biofilmcommunity.org web site (See Expert Interview section)

=============================

Biofilms of Borrelia burgdorferi and Clinical Implications for Chronic Borreliosis - Alan B. MacDonald, MD

May 17, 2008
University of New Haven
Lyme Disease Symposium
New Haven, Conn.

74 pages, pdf:

www.molecularalzheimer.org/files/Biofilm_New_Haven_ppt_Read-Only_.pdf

=========================

www.townsendletter.com/FebMar2006/lyme0206.htm

BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
-

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Keebler
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Backing up, how did you find this doctor?

What kind of recommendations? Assuming they had nearly excellent self-care and did their part, has this doctor helped others achieve solid remissions? Have you talked with them? If so, that would say a lot.
-

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Keebler
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I see that you explain how you found your doctor in this other thread. No need to answer here as we can read it over there:
------------------

ttp://flash.lymenet.org/ubb/ultimatebb.php/topic/3/24982#000000

Topic: Think I found my doctor. Opinions please!

=================

I'd not be too quick to say this is lyme. It may be. I don't recall if you ever had a bulls eye rash but if so, that would be clearly lyme.

Remember there are MANY chronic stealth infections that create similar symptoms to lyme. So, it's really too soon to declare that you are a lyme patient.

I had hoped the doctor would have assessed you for the full range. I guess it's a process.
-

[ 07-07-2010, 12:43 PM: Message edited by: Keebler ]

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Lymetoo
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quote:
Originally posted by MamaBear11:
Lymetoo: are you scared of his Yale/Harvard link because of the good 'ol boys network that doesn't believe in chronic Lyme?

YES. Steere clear!! ha haha.. that is a joke on Alan Steere, one of the main "drs" who denies chronic lyme. Worked at Yale a long time.

I read the thread Keebler posted the link on and now I'm even more worried about you!!

Having been dxd for 20 yrs with fibromyalgia, I can say it's highly overdiagnosed. All my pain went away with LYME treatment. There are basically NO treatments for FM .. unless you count being drugged up on Lyrica, Cymbalta and pain killers.

--------------------
--Lymetutu--
Opinions, not medical advice!

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dmc
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Please don't take offense with our posts.
I hope we are worrying for naught & all goes well.

Did you get the docs name from a lymenet contact?
I see you posted in seeking back in March 2010 and had a few responses.

I am very concerned too. That Yale/Havard friend thing plus the his bothering to read your records first rang my inner caution bell.

The 2 llmds I've been to, I definately had longer first appointments because
- I was interviewed first regarding my saga, (the whole saga)
- then glanced through records,
- then the thorough physical exam.

With each one, the appointment lasted more than 2 hours.

If you're comfortable with him then disregard our "mettling". Keep us posted on your progress.

I know I speak for all in that we wish you good things & recovery.

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
MamaBear11
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Thanks to you all for your remarkably informative responses. And no, I haven't taken offense to any of them. I understand that you all have my bests interests at heart, and honestly, that's why I created this thread.

I am totally and completely overwhelmed with the vast amount of information there is to learn about Lyme Disease. I have tried to do the best I can for myself by finding a doctor I can afford who was on the list PMd me by someone here on Lymenet. The information and questions you all asked here in this thread will be valuable for me later on down the road, once I have a better handle on things.

For now, I'm trudging through and we'll see where I end up...

[ 07-07-2010, 10:20 PM: Message edited by: MamaBear11 ]

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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TN Kim
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Bless your heart! I sure hope my LLMD meets up to the expectations! This disease is so overwhelming, isn't it?

(((hugs)))

--------------------
Bite 4/22/12
abx 5/03/12
neg. Lyme
pos. Cpn 5/17/12

Bite 5/22/10
abx 6/25/10

IgM Igenex Positive & CDC/NYS Positive with 18+ ; 23-25+; 31+; 34+; 41+; 66+; 83-93 (IND)

IgG Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+

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MamaBear11
LymeNet Contributor
Member # 25116

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Thanks, TN Kim. I really needed that "hug".

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

Posts: 310 | From Northeast | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
   

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