Just curious, I have had all the lyme test and only tested positive to babesia.
Posted by cantgiveupyet (Member # 8165) on :
me :-/ the other post that is going on now depresses me.
I was IND on IGM with igenex. IGG negative
negative for all coinfections too.
only thing im positive for is yeast and white blood cells in my urine.
Posted by Bothrops (Member # 7393) on :
Cantgivupyet, How do you feel good about your dx when there are so many other things it could be? So many other probs also have bad testing and the docs just seem so lazy about looking for the needle in the haystack. Well Dr. House does not seem to mind.
Posted by Beverly (Member # 1271) on :
Hi, I had a positive test for Babesia and Mycoplasma, the rest of my tests were negative. I did have a bulls-eye rash on my wrist in 2001 though.
Posted by cantgiveupyet (Member # 8165) on :
i dont feel good about my diagnosis...my illness or the fact that im disabled at age 30.
for me it could be a lot of things, but i seem to herx on abx. abx i took pre lyme with no problems.
I still search for other answers at times...but all labs are normal. I thought thyroid way back...but that wouldnt cause yeast.
how do you feel about your diagnosis?
Posted by psano (Member # 7785) on :
I initially tested negative on the Igenex WB. After a month of abx, I was IND on the IGM and Neg on the IGG per Igenex, so at least I seemed to be "turning" positive. Plus, my symptoms were responding to abx, and even though I was still feeling crappy, it wasn't as crappy as before.
It bothers me that my LLNP doesn't want me to to tell people that I have Lyme, even after 6mos of abx, so I just had the WB drawn again about a week ago. I'm optimistic that I'll be at least Igenex positive this time, if not CDC.
I keep getting better w/abx therapy (Bicillin LA and Ketek), and having just switched Ketek to Tindamax, I'm feeling even better than I was on Ketek, so positive lab result or not, I am very confident that this is what I have, and that I'm being treated properly.
Ultimately, I would like to be "counted" in the statistics, because I'm from one of those areas that are "not supposed to have Lyme disease."
Posted by Bothrops (Member # 7393) on :
CONFUSED! Dont know what to think.
I am 37 became disabled at 34. I worked for 16 years and I am still waiting for disability.
Posted by diana (Member # 7466) on :
Negative for borrelia on our crappy Canadian Elisa but positive for RMSF and Bartonella.
Pulled the tick out of my neck with emg rash 18 years ago. Told repeatedly I didn't have lyme or we don't have it hear, it's rare etc, etc.
Initial herx was severe-not your typical I feel crappy because I am on abx that is for sure! By day 5 I wasn't sure I would make it!
Igenex test was indeterminate with a good number of positive bands after several months of treatment.
Go with the symptoms not the test results!
Diana
Posted by bettyg (Member # 6147) on :
bothrops, where in the disability process are you? turned down on initial app; reconsideration, and NO admin law judge hearing yet? DO NOT GIVE UP; It took me 5 years going thru hell, BUT I WON 7-1-05!
Do you have a lawyer & from where? Is he lyme/fibro/chronic fatigue literate?
I'm going to copy/paste my disability info/site info for you. Please look thru this for ideas on WINNING YOUR CASE as I won mine ok.
TRYING TO GET SSDI, SS DISABILITY INSURANCE BENEFITS OR LTD:
Hi! I know what you mean about memory & typing, etc....it's the pits!
I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.
Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!
note 1.04; look at the rest of the 14 other specific areas too....
I printed off 1-14 sections showing what brief guidelines were for each section. I used that against ALL my medical reocrds, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!
TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!
So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!!
\============================================= What I did with an online friend was this: prepared a chart noting the specific section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.
Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated..
I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs, etc.
It's critical that you KEEP A COPY FOR YOURSELF! ================================================
On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy. Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.
WHY THIS IS IMPORTANT: if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office! When you see things you submitted with your writing on, don't look at them!
Look & read only the secretative RFC & MFC done by the the in-staff DDS DRS/PSYCHOOGISTS! You want to make copies of ALL the stuff they have & other stuff you don't have so you can use that info against them!
NOTE: I'D DO THIS DIFFERENTLY NOW! SEND 1 COPY TO ALJ and 1 to your lawyer! Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY; they didn't see many things when they denied me although I had good medical info!
Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;
plus 2 MFC, mental function capacity, done by psychiatrist & psychologist....the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.
ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE. MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it!
================================================== IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS ========================================================= This message is sent upon subscription, and again monthly. Please let the moderators know if any of the links have changed.
There are many more links, as well as advice, in the "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
BETTY NOTE: Look at the female MD''s DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future!
These links are a compilation of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom of this group. Check them out - you just might find the information you were looking for! Take a look at Files that are not specific to your situation, because they might be helpful anyway - what works for Social Security may work for LTD claims, what applies to CFS may apply to your medical condition.
The Welcome Message and Group Guidelines are also in Files, if you need a refresher on how this group works.
You must register with Yahoo to use the website, but note: Be careful not to permit your address to be put into the directory when you register. Put as little as possible into your public profile. You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address." Contact the moderators at [email protected] or for AOL subscribers: Click here -----------------------------------------~--> Disinissues website - http://groups.yahoo.com/group/Disinissues
DO NOT FORWARD ANY MESSAGE FROM Disinissues WITHOUT PRIOR WRITTEN PERMISSION FROM THE AUTHOR Do not distribute any member's email address.
NO MESSAGE ON THIS LIST IS TO BE CONSTRUED AS LEGAL ADVICE --------------------------------------------~-> Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Disinissues/ To unsubscribe from this group, send an email to: [email protected] Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
An online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?
Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.
There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet. I too plan on including this info when I send my FINAL packet of info to chief alj before my June 16, 05 hearing...my last chance! ======================================= Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....
Also after this article are the following articles:
WHAT COULD BE CAUSING DELAYED-PHASE FLARES?
BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..
TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.
MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS
DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY
I printed this out in larger print for my eyes....9 pages! Will read it thoroughly and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also....
bettyg, Iowa
Posted by ticked in ri (Member # 7736) on :
I was clinically diagnosed. All of my ELISA's were negative and a western blot through a crappy lab was negative (not a single band was positve).
I finally had a western blot done through Igenex about 2 months ago. No positives on the Igg but on the IGM I was positive on 45 & 58 and IND on 39 and 41. LLMD said if 39 and 41 were a little stronger it would have been CDC positve. He sees this as a weak positve.
The fact that I have improved on abx makes me believe that this really is lyme disease.
Posted by TheCrimeOfLyme (Member # 4019) on :
I initially tested equivocal on blood work, positive on urine.
After all the MRI's, CT scans, and blood work I had for VARIOUS things ( aids, syphillis, hiv, adrenals, yada yada) .. I gladly took the lyme diagnosis.
Glad I did. I have my life back.
Posted by Bothrops (Member # 7393) on :
After a year on abx I did not notice any improvment. When the weather is bad I herx. I dont know if I ever herxed, I can feel just as bad when not taking any abx.
On disability, I have been turned down twice and got a lawyer a year ago, still waiting. At the moment I am trying to get my medicaid back.
Posted by TerryK (Member # 8552) on :
Hi Bothrops, You wrote: When the weather is bad I herx.
Just a thought, have you been tested for mold antibodies? Terry
Posted by Mathias (Member # 5298) on :
Equivocal on the ELISA, only positive Band 41 on the Western Blot. Clinically dx'ed and treated, dx confirmed by ruleouts.
Posted by flygirl (Member # 6669) on :
this is painful to read, I'm sorry.
I was clinically diagnosed although Babs was the only thing I tested positive for...
Posted by trueblue (Member # 7348) on :
Negative elisa, negative WB only band 34+ IgG, I think.
Clinically diagnosed by ruling everthing else out. My intial diagnosis was demeylinating(sp?) disease to protect me from insurance problems.
This was in 1993. They didn't know about coinfections, then.
(My WBs became equivocal and eventually positive over a few years of treatment. Thank goodness Igenex came out with that LUAT when they did I got my first positive test from that and my first +WB shortly after.)
Posted by Bothrops (Member # 7393) on :
TerryK, no I have not been tested for mold antibodies. I did not know such a test exsisted. Can my GP do this? Can mold cause fatigue, neuropathy, pain, sleep problems, dizziness and blah bla......
I have wondered about mold in the past and know it is in my house.
Posted by [email protected] (Member # 8111) on :
I had a huge bullseye rash - classic - but didn't show to a doc because I thought it was an allergy reaction to a spider bite or something. 3 months later, dug a nymph (sp?) out of the bite site - which had gotten infected.
Long story short - even with this and big time lyme symptoms - I was negitive on both ELISA and western blot. I did have some bands that showed up but weren't the ones the CDC uses.
I did end up with a LLMD whom I told about the rash etc and got the clinical dxn and started treatment 8 months after the bite.
Posted by JimBoB (Member # 8454) on :
Beverly:
Did you have the Bowens or Igenex tests?
Jim Posted by JimBoB (Member # 8454) on :
So Pam, HOW LONG have you been treating for Lyme now, and with WHAT, AND HOW much better do you feel, percentage wise?
It took about 6 months of various abx treatments to get any better. The myoclonus is gone but not all the pain, brain fog etc - though I'm probably 70% better with pain, and variably with brain function. Some days 80-90% some days can't focus or stay awake to save my life (not literally).
Still can't work.
Treatment has included Doxy, Zmax, Biaxin, Mepron, Minocycline, Flagy, etc - etc. I just started (yesterday) a Rifampin + Doxy + pulsed Flagy protocol.
Posted by TerryK (Member # 8552) on :
Hi Bothrops,
you wrote: Can my GP do this?
My doctor told me that he could order any test he wanted from any lab and that any doctor could if they choose to, so I believe your doctor *could* run a test for you.
You wrote: Can mold cause fatigue, neuropathy, pain, sleep problems, dizziness and blah bla......
I think this is an area of controversy except with some molds that are accepted to be killers, especially of children and the elderly. I'm not an expert on mold illnesses but I've read in quite a few places that mold problems can cause chronic fatigue syndrome like symptoms and since they are basically identical to lyme symptoms, I do beleive it is worth looking into.
My LLMD is running some tests on me at this lab. Immunosciences Lab, Inc.
You might consider asking others here who may know more about it. Terry
Posted by char (Member # 8315) on :
Negative ELISA and Western Blot.
Got clinical diagnosis. My kids got postives, so more obvious that I have lyme and co. despited negative bloodwork.
Char
Posted by Areneli (Member # 6740) on :
Negative to LD but treated
Posted by Pitnum (Member # 4906) on :
Positive elisa, negative western blot (only band 41), negative on coinfections and positive PCR's of blood and urine. Insurance company says No Lyme Disease! Removed actual tick and had large bulls eye rash. Treated 56 days with IV rocephin and then cut off cold turkey!
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