posted
Not sure if this is more of a general support posting or not -- but thanks to one of the wonderful members here, I got a referral to a LLMD -- and she had a cancellation, so can see me today! I thought I would have to wait months and months for this ... so I am so grateful for this turn of events.
I don't quite know how to feel -- I've been sick for 17 years, in pain for 15 of them.... finally, I see a glimmer of hope for recovery....
I've been dx'ed "fibromyalgia" -- so was working on the premise that "I would just have to learn to live with my symptoms." Now, I'm pretty sure that is untrue....I fit the Lyme profile to a T.
I guess this is a preliminary posting to say that I am probably going to have a lot of questions, need a lot of support, etc. as I go through this process.
Even though Lyme is a terrible dx to have, I think it will be a relief to finally know what is wrong, and to actually be able to tell the people in my life that there really *is* something wrong with me.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I hope she will test you at IGENEX 1-800-832-3200 www.igenex.com
They have a very good test and you are in CA already!
Good luck
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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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.
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.
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. 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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I know what you mean by the relief of having something real to sink your teeth in to.
Even though I've tested positive a bunch of times, I still qustion if I'm really sick or just a screw up. In the beginning it gave me so much relief to finally be able to say "There *is* something wrong with me." It's not just my imagination.
I think that at least having a dx relieved a lot of the depression I was feeling from not being able to keep up in the real world.
Take care,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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