posted
Hi everyone I'm new here and just trying to figure out what is going on with my body
My symptoms are.. -Bad chest pain -LOTS of heart palpatations -bouts of shortness of breathe..almost like air hunger -tingling that started in hands and feet then legs (mild) -body-wide twitching..like popcorn popping -seeing starbursts and halos at night as well as bad afterimages and "spots" in both eyes -mild t.v-like static in both eyes -chest thumping/pounding..especially at night (sometimes I can actually see my heart beating when my shirt moves) -annoying awareness of heartbeat..again mostly at night -I had a bad cold that stayed with me for awhile and mri showed sinus infection.
I went to my normal doctor and had an EKG..normal Saw an opthamologist..eyes looked fine Had a complete workup by a neurologist (mri of brain, nerve tests, EEG, muscle test, VEP, physical exam)..all normal.
Should I get tested for lyme disease based on these symptoms? I have never recalled a bite and have never noticed a rash. I live in Southern California which I don't think had alot of lyme. What do you guys think?
Thanks -Sarah
Posts: 14 | From Southern California | Registered: Mar 2009
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I don't know if you have lyme or not, but I'd certainly say your symptoms are in the area. Many are similar to mine.
I live in SoCal too, and was told many, many times that I shouldn't even have tests for lyme because I couldn't get it here.
Not true. And I got much sicker waiting.
You CAN GET LYME IN SOUTHERN CALIFORNIA. Really. Even if you're not tromping around in the parks. I have no clue where I picked it up, but it was here.
Check out my previous posts, look for an LLMD and get tested. You have nothing to lose getting tested, and possibly a lot to gain.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Yes! You should be tested for Lyme and coinfections!
I had similar symptoms to yours (and still do) and screwed around with docs for 9 months before finally getting a clinical diagnosis of Lyme, Bartonella and Babesia.
Go over to Seeking a Doctor and post your area; someone is sure to help you.
Good luck, and welcome to the site!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
CA has tons of Lyme. The areas highest in incidence are the North East, upper Midwest and California. But Lyme is found in every state.
GEt tested!!! Test #188 and 189 from Igenex Lab IN CA!!! www.igenex.com
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I think it's a possibility and given the amount of time you've invested already, I would run the Igenex Western Blot IgM and IgG. May as well do it right if you're going to do it. Contact that laboratory and ask them to send a test kit.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Though So CA is not particularily endemic (too warm & dry) there is a little Lyme in most every community. Those symptoms sure sound suspiciously like Lyme! I'd second the Western blots to be run by IgeneX.
You'll need to find a "Lyme-literate MD" for a proper diagnosis... & Treatment! Contact a local Lyme support group if there are any nearby. And Go to the section on this site for medical "referrals".
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Also if you need a Lyme Specialist, e-mail me. [email protected]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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That "body wide twitching" is a red flag in my book. While this could be something else, a good LLMD will know how to assess you for several chronic stealth infections that most doctors don't even know exist.
Best of luck.
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This explains WHY you need an ILADS-educated or ILADS-member LLMD.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
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:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .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, containing MUCH more detailed information.
-===
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.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
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:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
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.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
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:
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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