posted
i am 24 years old have been extremely sick over the past 9 months with is what started as a lower abdominal problem (pains and diarrhea). it has progressed since then moving up into my chest area and then the neurologic symptoms started coming...i have severe muscle twitching, slurred speech, tremor, continued stoamch problems (net loss of 30 lbs), left leg has neuropathy x 6 months, i wake up nearly EVERY night with pins and needles in all my limbs (this really scares me), murmur (which i never had before), and the cold weather really bothers me (chills etc). i have been tested for lymes 3 times (all thru ELISA--which i hear is extremely inaccurate). My neurologist has pretty much ruled out MS (even though i have a family history of it--my mother passed away from complications of MS at the age of 45). i have had multiple mri's all which have shown no lesions. my ana keeps coming up positive. also my cpk and liver function tests are very high sometimes (cpk as high as 1330). i am so desperate right now as this sickness has taken over my life. it consumes every part of my day, whether its scheduling md appts or just not being able to get out of bed. my questions are as follows... 1. could this be lymes? 2. if so, is there anyone who knows of a LLMD in the philadelphia area? thank you so much.
Posts: 13 | From philadelphia | Registered: Mar 2006
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bettyg
Unregistered
posted
Welcome Jack! Breaking this up in short paragraphs and double spacing; please hit enter often and double space in future. Thanks Jack,
quote:Originally posted by jackr10:
I am 24 years old have been extremely sick over the past 9 months with is what started as a lower abdominal problem (pains and diarrhea).
it has progressed since then moving up into my chest area and then the neurologic symptoms started coming... i have:
. severe muscle twitching, . slurred speech, . tremor, . continued stoamch problems . (net loss of 30 lbs), . left leg has neuropathy . x 6 months, i wake up nearly EVERY night with pins and needles in all my limbs (this really scares me), . murmur (which i never had before), . and the cold weather really bothers me (chills etc).
i have been tested for lymes 3 times (all thru ELISA--which i hear is extremely inaccurate).
My neurologist has pretty much ruled out MS (even though i have a family history of it--my mother passed away from complications of MS at the age of 45).
i have had multiple mri's all which have shown no lesions.
my ana keeps coming up positive.
also my cpk and liver function tests are very high sometimes (cpk as high as 1330).
i am so desperate right now as this sickness has taken over my life.
it consumes every part of my day, whether its scheduling md appts or just not being able to get out of bed.
my questions are as follows...
1. could this be lymes? It's "lyme"!
2. if so, is there anyone who knows of a LLMD in the philadelphia area? thank you so much.
Jack, I'm not a dr. but I'd say yes! See the links I provide before for the LONG list of symptoms ok! See also about having a western blot igm/igg done at igenex, md, or bowen labs..ok.
Go to seeking dr. section; post need Philadelphia, Penn. LLMD. that's lyme literate MD.
Check the left hand column for Penn.'s support groups; they know who is good & not. Email or call the group leader closest to you.
Also, you could check the DIRECTORY at the top for Penn. and Philadelphia IF they chose to include that in their profile.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077.
You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US.
They fax the results and then about a week later send the actual pictures.
NO way to file for insurance since it's only a brief letter you get back from them even WITHOUT a 501 federal tax no!
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hey jack,
welcome aboard!! i hope you get the help you need here. there are a lot of very knowledgeable folks to assist in your healing.
came from philie way back when
good luck
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Jack.
While your symptoms sure sound Lyme-ish, you need to be evaluated by a lyme literate medical doctor (LLMD). He will review your symptoms, then send your blood off to IGeneX or another lab specializing in tick borne diseases to get a look at what bands on a western blot are reactive to back up a clinical diagnosis of Lyme.
No other doctors generally will do this.
Neither will any other doctors usually make a "clinical" diagnosis of Lyme, even though that's what they're supposed to do, even according to the CDC.
You're right, the ELISA is garbage. Your neuro, if he had a clue, ought to be clever enough to test you through a good lab like IGeneX, but most neuro's are clueless about Lyme and will dismiss it based on a negative ELISA, despite the fact that ELISA misses up to 50% of chronic lyme cases.
Get thee to an LLMD. If in fact you DO have Lyme, it's the only way you will get better.
Post in "Seeking a Doctor" or contact a local Lyme support group and get a recommendation for a good LLMD. You'll be surprised at the difference a good doctor makes!
Best of luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Posts: 3193 | From Northern California | Registered: Apr 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
I sent a list of local llmds.
It is very important to be tested for co-infections, one of 7+ infections ticks carry. Sometimes these tests are more acurate.
I have/had lyme +3 cos.
Posts: 1572 | From Pa | Registered: Jun 2001
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