Hi all, (Re-paragraphed for the neuro folks! Thanks!)
I am interested in your opinions and advice regarding my pursuit (so to speak) of a lyme diagnosis and treatment.
For years I felt as if I was getting "slower" and having problems interacting socially.
Over the years, I developed acid reflux, urinary problems, vision problems, and headaches.
In Feb. of 2008, I had a nissen fundoplication to fix my reflux (which it didn't, but thats another story).
The surgery was done openly, and it took me a long time to recover.
Since then (and a bit before the surgery), my cognitive problems have gotten worse.
I have terrible short term memory, cannot interact socially (used to be a highly respected professional and networker), have terrible fatigue, facial pain (24/7), numbness and tingling.
Also have joint pain, brutal headaches that seems to encapsulate my entire head, neck and back pain that feel almost as if I have the flu. My life is nothing like what it used to be.
I have all of my previous problems, and more. I've seen urologists, neurologists. I've been to the E.R., and my PCP (who is an internist).
I've had a CT, lumbar puncture, MRI, two western blot tests (not igenix). My muscles are always killing me, and even my eyes are alligned.
The doctors have done nothing beyond prescribing amitrypilyne and order a sleep study.
From brilliant (top of my law school class, and president of an associational group) to barely able to conduct a conversation.
I guess I am just looking for confirmation and validation, in the face of all my symptoms, that I should be pursuing an LLMD and treatment.
I need help NOW which the doctors don't seem to appreciate. They keep pooh poohing my symptoms but my life, pain, and performance clearly show that I'm suffering!
Any advice, or comments would be greatly appreciated. Thanks so much.
[ 22. September 2008, 06:28 PM: Message edited by: legaleagle ]
Posted by webmeg (Member # 13647) on :
DEFINITELY worth testing for Lyme. Use IGeneX lab in California and get an IgM/IgG test for Lyme. They will send you a free kit. Your doctor needs to fill out the form and sign it and you need to find a lab that will do the draw for you. You'll have your results in a couple weeks.
You certainly have a lot of lyme symptoms! If you do have it, you'll need to find an LLMD to treat you. Your regular doc will likely not know enough about lyme to help you.
Go to Finding a Doctor on this forum to help find a doc in your area.
Even if you test negative, see an LLMD. They may do a week of antibiotics for you and then test you for Lyme. Sometimes that stimulates and immune response and you will then test positive.
Good luck!
~webmeg
Posted by Keebler (Member # 12673) on :
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Lyme would not be the only chronic stealth infection to question but, first:
Have you ever had a tick attachment? (If so, it's a clue but, often, it can go undetected.)
Did you every have a bulls eye rash? (If so, that is always lyme. But a rash is not always present and there are different kinds of rashes.)
A good LLMD would know how to distinguish your symptoms and what to consider in your history.
A good LLMD knows about many other chronic stealth infections and also knows about liver and endocrine support measures that are vital.
Other questions:
Do you consume even a trace amount of aspartame/Nutrasweet/Equal? If so, it is vital to stop immediately and completely. It is excitatory and toxic to the nervous system.
Same with MSG - you will need to google for all its names and check all your food/mint/toothpaste ingredients.
From what you describe, yes, it is certainly likely that lyme could be involved. I sure hope you can finally find the excellent medical care that you have deserved all along.
Please, accept nothing less than an ILADS-educated LLMD. Other doctors simply don't have the experience or the knowledge. There may be a couple different paths you could take but, first and foremost, you need an excellent diagnostician.
Good luck.
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Posted by Keebler (Member # 12673) on :
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This explains the political setting and why you need to consult with a doctor who is better educated than those who simply go by IDSA misinformation:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
=====================
This, sadly, shows the state of treatment in America by IDSA doctors:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
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If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others.
This explains why treatment is so important, whatever the stage.
You don't have to have tick attachment or a rash to have lyme. I didn't! I believe I got lyme from mosquito bites and my llmd said that it's very possible.
I'm not a doctor but it sounds like it could be lyme to me. Please find a lyme literate MD for testing and evaluation.
Posted by Keebler (Member # 12673) on :
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That's true. Mosquitoes have been known to carry lyme.
----
I came back with one more thought.
While causing your head to spin is not my intent, please forgive me. I know I like to know all my options. Even if I can't afford something, I want to know about it. And, this treatment is actually less in cost, all things considered.
The Bionic 880 is one more avenue to consider if, by chance, you can get to Germany for a few weeks.
It seems to be a promising (non-pharmaceutical) treatment in Germany. Several folks from here have gone over or are planning on doing so.
[ 22. September 2008, 08:08 PM: Message edited by: Keebler ]
Posted by Geneal (Member # 10375) on :
I wish I'd seen the tick that got me!
Do pursue seeing a LLMD.
Lyme continues to be a clinical diagnosis.
Blood work only supports that.
Additionally you may have co-infections for which I would
Only trust a Tick Borne Disease expert.
I thought I had a brain tumor.
I am a Speech Pathologist and couldn't find words to talk.
Had difficulty walking.
Couldn't sleep. Joint pain. Lots more too.
I guess I am lucky after 4-5 doctors/specialists,
A duck diagnosed me with Lyme disease following a Quest WB that only showed band IgM 23.
Then I found this site.
A wonderful member (Thanks Lymetoo!) directed me to my LLMD.
Not only did he concur with my Lyme diagnosis he also diagnosed me with babesia and bartonella.
Hang in there.
Welcome to the board.
Hugs,
Geneal
Posted by lou (Member # 81) on :
I suggest that you contact support groups in your state for doc info and more local info. There may even be one close by where you could attend a meeting. They will have heard many stories like yours. See support groups line in the green menu box on left side of this page.
It is definitely worth checking into lyme. Very poorly handled by the medical establishment and you have to educate yourself, find someone who specializes in tickborne infections. If you don't have them, they won't say you do. The difference is that they will include lyme in the differential diagnosis and many others will not. Or they will go solely on faulty testing.
Posted by adamm (Member # 11910) on :
All classic Lyme symptoms.
Posted by Vermont_Lymie (Member # 9780) on :
Yes, sure sounds like lyme (and possibly other tick-borne diseases) to me.
The good news is that treatment works, though it can take longer than we would like, and also be more than a bit expensive and cumbersome. To say the least!
The same thing that you describe happened to me. The worst part of it was losing my ability to function. I used to be an award-winning teacher who finally could not finish a sentence before starting treatment for lyme...
My advice is similar to the above -- get yourself to a lyme literate doctor as soon as you can. It could be the start of your recovery. Hope you do well.
Posted by bettyg (Member # 6147) on :
EAGLE, thanks for reformatting for folks like me! xox
check your profile for llmd names!
check my table of contents in my newbie package links for DETAILED info about igenex, western blot igm and igg blood test.
there's a igenex lab now on east coast too at CAPE COD!!!
Posted by legaleagle (Member # 17361) on :
Thanks so much everyone for your responses, and personal stories.
It is so relieving to know I'm not alone, and all of the information is extremely helpful.
I made an appointment with an LLMD today, and will continue to post my progress and news.
![[Smile]](smile.gif)