posted
UGH. Ive only been on biaxin and planequil since the end of November. I herxed big time when I first took it for a few weeks. then i felt better last two weeks of december.
had muscle twitches for two weeks then they went away. about 4 weeks later beginning of this month I herxed more and started getting the muscle twitches back. I still feel out of sorts but I'm seeing improvement
However, my LLMD didnt believe I had lyme. even tho my western blot was IGM positive. but not IGG positive. and i had three elisas taken in a matter of a month and they all came back in the 90's. sometimes 99. sometimes 96. and if you ask me that pretty much means positive. he thot that becuz i was treated with doxy for my acne for 6 months that I was ok.
Weird thing is hes been treating lyme for years and he goes to ILADS. I'm being treated by his nurse practitioner. They made a deal with me that theyd put me on meds. The nurse practitioner got his approval.
However they said I had to in return do a lyme test from neuroscience lab (because my insurance wont cover ingenex) as a way to "prove" so to speak that I had it so they could treat it?
My CD57 is 20. I have never been sexually active. So I dont believe its syphillis. When I say never I mean never. and a few of my inflammation markers came back elevated. sed rate is normal
Well I went for my monthly check up with them. I took the neuroscience test last month. about 3 weeks or so after starting the biaxin and planequil. so they had me take the test WHILE on antibiotics. which I thought was a no no?
either way today i go to see her and she tells me that my neuroscience lyme test came back NEGATIVE. no antibodies were found. she is happy im seeing improvement but can only give me a another month refills on meds bcuz she has to talk to the doctor about it. Theres the possiblity he could say to stop meds. They want me to come back this week and have my cd57 taken again becuz they want to see if its gone up. I guess this is yet another way to see if its REALLY lyme
IM FREAKING OUT. what am i going to do??? If i go off meds ill get worse and worse. Im so aggravated
why did neuroscience come back neg? when its a reputable lab for lyme???
GOD SOMEONE HELP ME. im very very upset right now
[ 01-12-2011, 04:44 PM: Message edited by: lymegal23 ]
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
UP PLEASEE SOMEONE HELP
Posts: 995 | From somewhere out there | Registered: Oct 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Why neuroscience and not Igenex?
Lyme is a clinical diagnosis. If the doctor is not taking your symptoms seriously, see another doctor!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
That's crazy. Find a real doctor. There is no need for constant testing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, I agree with everyone. Dump that doc like a hot potato and find someone willing to help. It sounds like you need deep pockets to work with a physician needing to test every few weeks!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I'm so upset. If he does let me stay on the meds I'm sorry to say but I will stay with them because I just can't handle having to go to another doc. and wait MONTHS to get taken. its rediculous.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Try and calm down if you can. When I no longer had an LLMD, I treated myself with antiparasitic herbs and salt/c.
Both have saved my life, and can really be an answer for your dilemma. Do a search on here for both and you will find lots of info.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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When I stalled with a current practioner even though what she adds is invaluable
and then got a second bite on top of it...it ended up catapulting me into further options for care and it has been good.
Now the first practioner is back in picture also and has learned much more in the meantime.
So I pray that your course is according to your mental emotional and financial resources and to your highest benefit.
Sometimes on top of everything we just don't deal too well being our own energetic advocate all the time...even if we know so.
Well at least I have struggled with it on top of being sick.
blessings,
deerose
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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posted
You wouldn't have to wait months. Call for an appointment somewhere else right now. It will likely be another month or so before this dr dumps you.
I sure wouldn't trust a dr who ignores a positive WB and then tests every few weeks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
You can get on the cancellation list, too. Very often you will get a call before your appointment asking if you can come in earlier.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
If you don't trust him-- dont go to him. Get another LLMD and get started on natural protocols just incase. No need to freak, he obviously wasnt the Dr who was going to get you well, so get going to find the one who will! Sometimes these things are a blessing in disguise.
Posts: 844 | From CA | Registered: Apr 2010
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Although Im VERY CONFUSED about something. Why did my regular lab lyme test come back as positive for IGM and 41 and 23 IGG. and the neuroscience didnt show any antibodies at all? thats so weird. neuroscience is supposed to be more specific. ingenex didnt cover me in insurance so I went with neuroscience instead
altho i was on biaxen and planequil for a few weeks before they made me take the blood test for neuroscience
i think its very STRANGE it came up totally negative for antibodies....anyone else?
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
If you get on a waiting list with a new, better, LLMD, then you will at least have that process started.
Then you can stay with this couple of non-Lyme-literate practitioners as long as they will give you the appropriate meds, until your new LLMD appointment.
My guess is there will be a gap of treatment even if you get on a waiting list now, but the longer you wait to start the inevitable search, the longer that gap will be.
posted
I just dont understand how NO antibodies showed up on the neuroscience test. they took like 4 vials of blood for goodness sakes
antibodies showed up on the regular crap lab western blot. 23 and 41 IGM and IGG. altho I was on lyme treatment for a few weeks before the test was drawn for neuroscience. maybe that caused a false negative?!?!
im so confused.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
a lyme test. an antibody test. thats all the doc told me. they took like 4 vials of blood. I think its like a more specific western blot (probably tests for all the bands unlike the regular cdc one)
all I know is she looked at the results and said to me "according to this test you dont have lyme. it didnt find antibodies." and she seemed a bit puzzled
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Ahh i see i see. I dont know how it didnt pick up any antibodies. The crappy ones picked them up. dont see how this "great new test" didnt pick it up! ....so weird.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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I raised the topic of false positives a few days ago- first which was done in a speciality lab/which tested pos ospc 23-25 and 41
second WB done 3 WEEKS LATER at the most prestigious hosp lab in Paris- came back neg... according to the Dr. Neurologist!!hmmmm?? I was told that maybe their sensitivity is too high and didn't take into consideration certain antigen transfer factors.
One doc says, no!!! one doc says- yes, (and the neuro is crazy)- so start the abx tx.... and we did!!!!
good luck lymegal and keep searching!!
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
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posted
Why did my regular lab lyme test come back as positive for IGM and 41 and 23 IGG. and the neuroscience didn't show any antibodies at all?
Why because it's moved on and out of your bloodstream. It's in your muscles, ligaments, tendons, etc. With a cd57 of 20 it sure doesn't surprise me no antibodies aren't being found.
Probably because your immune system is so suppressed (which lyme does), your body doesn't even know bacteria is there. Could be because it's hiding out in the cells, or in a cyst form. Your body is being tricked by lyme and no antibodies are being produced.
Many reasons why you can be sick as a dog and have a negative test. Doesn't seem like your doc or nurse practitioner have a clue what is going on or how to help you. Lyme is a clinical diagnosis as you know.
The good thing is if you get cut off you can order your own meds and even order your own blood tests without doctors orders, if that is what it comes down to.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
^ I can order my own meds? HUH? how??? i still have another prescription for next month
Posts: 995 | From somewhere out there | Registered: Oct 2010
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-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
You know stan you brought up a good point. I forgot that it can leave your bloodstream. thats a REALLY good point that I totally forgot about.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
Yep the flagella (tail) is shaped like a screw.
Think about that, the perfect way for these little bastards to leave the blood stream and screw through all your muscles, organ's, blood brain barrier (bbb)etc.
It really is the perfect designed bacteria.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
YES!!!! I have copies of all the basic blood work she did on me. but I need to get a copy of this neuroscience one
May I also add, that I had 3 lyme tests done in september by my pcp. all three western blots came back IGM positive. my elisas were in high 90's. I had a positive western blot IGM in october too. The Neuroscience test was done beginning of december. I doubt they couldnt find ANY antibodies. it was only like a month later...
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
This doc sounds like an IDIOT to me..pardon my French. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I called up another LLMD office in my state that has a real good reputation and is ILADS educated and I told them the doc I was going to now, and they said the one im going to now has a good reputation
HAHAHAA. how strange? theyre totally screwing me over. strange how theyre saying theyre good.
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
It's unprofessional for any doctor to bad mouth another, not to mention liability could be involved. If you expected them to say he's not a good doctor, forget it. It would never happen.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
^ I didn't think of that. GOOD POINT!
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sounds like they are more interested in protecting their own assets--or possible doing research instead of taking care of the real pt.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I called Dr. Harris from Igenex before I got my testing done and he told me that antibiotics will NOT affect an antibody test (IE Western Blot) they will ONLY affect a PCR test!
SO..with that being said I have a feeling your doctor was lying to you about NO antibodies showing. You need to get a copy . ALWAYS get a copy!
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
^ Jackie . Hi. I've tried sending you PM's lately. Trying to see how you're doing. But you havent responded girl. CHECK YOUR MAILBOX!!! I hope you see this!!
And yea Id hafta think that they lied to me. how rediculous is that. Its a sad day when a regular hospital Western Blot shows more antibodies than a "lyme specific" test.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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