posted
so one yr. in tx by LLMD's and STILL have active IgM bands. latest CD-57 "even lower" per nurse. have not seen lastest numbers...
but last yrs CD-57 and one from few months ago in 40's...have done doxy, tx'd babs for 4mo. been on bart tx w/ cipro and IV rocphin sence feb for IV and think this is month 5 for bart? something like that....
so...was tx'd for "auto-immune" disease going back over 8yrs...
could this be an underlying issue ??? how many others have had this happen ??
sooo confused, and fustrated. felt like was making headway after gall-bladder removed (was acute and chronic infection, full of sludge/stones and had begun to hemmorage on the lining, came out just in time)
LLMD not sure WHAT the answer is here? i know each case is unique, and everyone resoponds diff.
i stil have sooooo much pain, joints that have gotten worse, muscles, nerves- everywhere daily. back to barely functioning.
what came first- the chicken or the egg???
(have NO idea when contracted lyme- childhood ? few yrs back when got rash i thought was poisen ivy? (left knee pain is what started up after that and things went downhill from there)
have gained no IgG bands...follow Dr B supps and guidelines. was doing heavy arobics till port a cath surj in feb- that knocked me on my butt!!! then GB surj in May...i realize that is alot for a sick body to go through
any insights ????? anyone in similar situation???
what next? added acupuncture, trying to help wiht pain and boost immune stystem. she does acupuncture/reiki/and chinease medicine i forget name of..has to do with strengthing the body.
thanks
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
So sorry you are frustrated, hurting and at a loss...
IgM bands do not necessarily mean active infection.
These bands can mean chronic. 1 yr. treatment is really not long if infection going back 8 yrs. (your statemnt of auto-immune testing)
CD57 can go lower during treatment. Mine went from a 2..up to 19 the back down to a 9 over the course. That is why it is NOT the marker test it was hoped to be.
Bart is what caused most of my pain. Have you been treated for that?
You have multiple infections and each one requires different treatment couses. (the drugs or herbs and time on each)
Hang in there. It took me 17yrs for me to get a proper dx...(told MS for all those yrs) I didn't expect to get "cured" in 1 yr.
Dxd lyme, babs & bart.
Will keep you in my thoughts & prayers.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
why do you think autoimmune? did you have an ana? i have a positive ana..usually means autoimmune but, i was neg for all the diseases and it can also be caused by lyme.
didn't your pain doc suggest dopamine? i really don't understand why and i have tried messaging before about your ? on dopamine...
it is really for rigidity...do you have that..it is easily detected by a neuro.
i feel confused as to what your symptoms are...but i sympathize and wish you the best.
Posts: 94 | From ut | Registered: Jul 2009
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posted
What markers you have for autoimmune? Fact that you still have IgM bands for BB does not in any way indicates autoimmunity .
Posts: 856 | From MA | Registered: Jul 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I have 7 IgM bands after almost two years of tx. I have NO autoimmune markers. IgM is a sign of Chronic infection, keep treating!
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
ok, dang brain does not always get my thoughts out clearly...
reacap: has several + ANA off/on going back to 1999 or more. has unknown dx, no doc knew what to do and sent me to rhum
rhum tx as "auto-immune" ..she never got hung up on giving things a name, most auto immune issues tx same. so was lupus like with GI manifestations as well
so- yrs of stroid packs, embrel, methotexate, sulfasalzine (which helped GI wonders !!) and plaquinel...has GREAT response to that one..lol
so fast forward i after baby #3 wanted to stay away from ALL meds and avoided going back to dr/rhum as long as possible.
then 3-4 yr ago now, L knee pain stated. got worse, went to MD...pain kept getting worse and every round of steroid shot in knee was HORRIBLE. 2 orthos and my dr soooo confused why steroid shots would make it so much worse.
then neruo hit hard- drastic overnight hit.
so- neruo does full work up and all my dr's were very "MS, slam dunk and work it up and start to tx"...well MS work up neg
neruo did tons of labs and did lupus profile that was neg.
ANA - last yr but with note of "cyoplasmic floroscopy observed" so testing ruled out anit mitodhonrial and anti smooth muscle..again, no dr knows - not even LLMD
bbone cysts have showed up on tibia/femer that were NOT there last x ray with last yr -- again, no one knows WHAT that is. bone scan r/u cancer.
myoglobin + but CPK low..very odd.
now labs havig shift of low bun/creat, and up MCV, MCHC and low Hg. looks like anemia creeping in???
idk, confusing... responded well yrs ago (btwn babies) to all the rhum meds. got rid of pain to lower back and GI upset.
just wondering if anyone else had underlying auto-immune FIRST then came lyme???????
LLMD told me IgM means still pulling out active infection . gained NO IgG bands. only one + on IgG is 41 and has been since last yr
CD-57 was 2 and now nurse said is lower...geez, can you go negative or what ??????
just fustrated and feel like might be missing piece of the puzzle.
and yes- pain dr thought dopamine would help iwht pain, stiffness. even have odd gait now. very stiff, shake, cognative is just a mess !! and bladder issues, HR will go up 100-120's at rest. BP either norm of low and dropping by 40 mmHg last time we did ortho measures. of course get dizzy, etc
pain dr "sees" early parkingson's and neuro "sees" MS like ...have huge neruo stuff. cental, peripheral, and autonomic.
looked it up and for now using neuorelief product to help up the dopamine pre-cursor and the neruo transmitter cascade.
makes me nausous but taking it- rather use natural than ANOTHER rx
thanks for everyones helop
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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quote: just wondering if anyone else had underlying auto-immune FIRST then came lyme???????
First from your description it appears they did not find any autoimmune markers (antibodies vs your own tissues), so why it makes you think you ever had anything auto-immune?
2nd "auto-immunity" of "unknown" origin is most likely chronic bacterial infection. Nothing auto immune about it
3d I dont quite get whether you are back on steroids with neuro/rm or started treating lyme. You can't do both. And it is up to you if you want avoid meds, you can try rife or other alternatives, but abx are the only one with some proven sliver of efficiency.
That said there are many variables in abx treatment and it appears that many are unsuccessful - whether it could be related to deficiencies in their particular tx or a general abx inefficiency is open question
Posts: 856 | From MA | Registered: Jul 2009
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posted
does your stiffness come and go? have they tested you for "stiffman syndrome?" does the dopamine (i think you said you were taking it) help? it didn't help me at all..but, in my mind i thought i had PD... i was going crazy not have a dx at the time..all the docs told me NO WAY PD...but, i was just confused until the lyme testing. i also had a positive ANA. i guess i am not really stiff b/c i can put my palms to the floor and touch my foot to my nose but, muscles do get tight on me..is that how you have a "tightness". could you describe you gait thing? i do have where it feels like i am walking in water some or where my foot is numb so it is hard to walk..is it like that? do any supplements help you?
Posts: 94 | From ut | Registered: Jul 2009
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WildCondor
Unregistered
posted
Don't pay attention to test results, you will drive yourself nuts. Lyme is a clinical diagnosis, so the tests mean nothing really. A positive ANA doesn't mean you have Lupus either, it's another immune measure. the IGM is just a measure of immune response which fluctuates over time. GO by how you feel and not by the test.
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posted
thanks for the responses, - this just can get very, very fustrating.
i really do try not to overthink stuff, think having medical background might just make me thinking worse..lol
and no, not on steroids now. when western blot was + neruo doc had me stop the methotrexate i was on.
i am sure the steroids i was on while doing the workup didnt help- get that. pretty sure that is why knee is so bad now
have not been worked for stiffman syndrome. no way could touch foot to nose, lol-- tried and not gonna happen !!
my legs esp. get very, very stiff/tight/sore when have been sitting or laying down. like in the am when i get up is very stumble around. ankles hurt sooo bad and dont want to bend. i keep feeling like you would after a really hard workout then next day. hope that makes sense??
starting to reserch the rife idea. honestly last yr when saw folks talking about that sounded very sci-fi.
am with new acupuncturist, helping some.
thanks wild condor- yes, think was driving myself nuts !!! just feel like a piece of the puzzle is missing here. and wish i knew what it was.
going on how i feel is what IS sending my head in tailspin. still feel like crap, still in lots of pain despite heavy hitters. pain dr says may only get me to 50% as far as pain control. that is discouraging..sorry, we just think you can live with pain that is still high...ESP with rain, or weather changes (fronts,etc)
will keep on keeping on with the tx's
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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