I've had Lyme disease before - had a bullseye back in June 2004 and positive labs. Dr. waiting 10 weeks to start abx - I was so sick!
Was on high dose abx for a total of 18 months, including 15 weeks of IV Rocephin. Was feeling much better, and I had a negative PCR from IGenix (I was still on abx at the time). My LLMD never did have me take any cyst busting meds, don't know why.
I had surgery in Oct and have been feeling bad since. Had a whole year off abx and felt well. I had started two new meds in Oct, and have since gone off those just in case they were causing the symptoms.
Have lots of medical problems, from long before Lyme disease. Bipolar (25 years), a fall 9 years ago that resulted in several low back and neck fusions, peripheral neuropathy, chronic pain, migraines, sensitive to chemicals, etc.
I now have a lot more arthritic joints (Lyme?) and the peripheral neuropathy is much worse. I've gone from being in a manual wheelchair for 4 years to being in a power chair since Aug.
Feeling so lousy - having urine and blood sent off to IGenix on Tues. Don't know how those of you who've had Lyme disease for many years have done it. I just don't know if I can go through it again on top of all the problems I already have.
I just don't know what I'll do if the test is positive for Lyme. Then again, if it isn't Lyme disease, what is making me sick?
I've been back reading posts and learning all the new treatments. Things change a lot in over a year.
Really need some support from those who know what it's like -
Jane
Posts: 99 | From North Beach, MD, USA | Registered: Aug 2003
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bettyg
Unregistered
posted
Hi Jane, sorry to read your sad story, but glad you're being tested.
Be sure to read my comments on IGENEX well...HAVE THEM FAX YOUR DR. RESULTS! write on their form.
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.
==>> JANE, print & read Dr. Barrascono's 2005 info first; you will come back to this often. I'd do this now based upon your having this earlier & your other health problems now!
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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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Morning Jane-
Sorry that you are sick again. It is probaly better to be re-treated sooner rather than later. Relapses tend to intensify quickly.
Been there. Mel
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
Jane, I'm so sorry to hear that you are feeling so awful. It's got to be hard to have your lyme resurface on top of everything else.
There are quite a few folks in the forum I think who have had lyme progressed to that stage and have come back from it. Hang in there and remember we are all here if you need to vent.
posted
Hi Jane! I'm so sorry you are ill again. It often happens that after trauma or surgery, the Lyme will rear its ugly head again! Very common.
If you will get properly treated again, you may be able to get rid of some of those symptoms, like the sensitivity to chemicals, migraines, arthritis and peripheral neuropathy. [Let's hope!!]
You may also want to get treated for systemic yeast, because some of those symptoms are exacerbated by having yeast on top of Lyme.
About those cyst-busters....Maybe you need a different LLMD this time??
welcome
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Hi jane!
I am in my third relapse. Have had MANY years of symptom free between relpases. But I also have other problems that I have to deal with in those "in between" times: I have severe endometriosis, had to have colon rectal surgery, and abdominal surgeries b/c of that and a few other things that seem to never end along with the Lyme.
It is A LONG and hard fight!
Some days are better than others for me. Somedays I am very suicidal and others I feel ALMOST "normal."
I have found reading some books about chronic illnesses has really helped me understand, come to terms with my illness and start to heal in ways that may not be physical, but are just as important.
There are ALSO lots of success stories to look at and as you said-there is A LOT more info and protocols than there used to be! Did you treat for co-infections? I hope you have a restful day! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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