posted
Hi: My story started 4 yrs ago when I got a bull's eye rash and tested negative for Lyme and was never treated for Lyme. A few months ago I started feeling very sick and went to a LLMD.I tested negative on the Igenex test.Doctor says I might still have Lyme. I am taking supplements like tox-ease but no antibiotics.LLMD wants me to see a neurologist. My question is, what would be the reason that the Igenex test came out negative and I still have Lyme? thank you for your help
Posts: 54 | From catskills NY | Registered: Jun 2008
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posted
From what i understand, your immune system may not be making antibodies to the buggers so it cannot be detected by the tests. Not to mention the testing is inaccurate alot of the time. I am a little surprised your LLMD did not diagnose you clinically? What was the reasoning for the neurologist? Do the symptoms you exhibit fall in line with Lyme?
-------------------- Winni Posts: 150 | From Nebraska | Registered: Mar 2012
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posted
Hi Winni: I have had symptoms on and off(started with joint pain all over body) heart palpitations,dizziness,numbness in face ,hands and feet.I am now having air hunger. LLMD wants me to see a neurologist because I've had numbness everyday since May.He also wants me to get a brain MRI. Thanks,
Posts: 54 | From catskills NY | Registered: Jun 2008
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posted
Same path I was on. Almost exactly. I did not have quite the numbness you describe but all the pain, air hunger and dizziness. I hope others will chime in here too, but you could try naturals, maybe Byron White and see if you have a reaction. Typically a reaction means a herx and its working against Lyme. So I did not put that very eloquently and I hope others will Chime in here too!
-------------------- Winni Posts: 150 | From Nebraska | Registered: Mar 2012
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quote:Originally posted by mariana: I am taking supplements like tox-ease but no antibiotics.LLMD wants me to see a neurologist. My question is, what would be the reason that the Igenex test came out negative and I still have Lyme? thank you for your help
- That does not sound like a good LLMD. Why is he sending you to a neuro?? They know NOTHING about Lyme.
posted
I am still seeing the LLMD but he wants me to see a neurologist also. I will look at my tests tomorrow and post it here. Thanks for the link.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
At this point your body has probably stopped making the antibodies for Lyme.
A good doc would do a challenge test such as having you take antibiotics so your body will start producing antibodies again, then test you for Lyme.
I'm surprised at the LLMD too.
I started with one LLMD doc who missed some important testing, so I just started with a new one.
Don't be afraid to get a second opinion from another LLMD.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As other so wisely caution, the neurologist will know nothing about lyme, most likely. There are only about two in the whole U.S. who do.
Now, a neurologist can look for other things and order an MRI but, really, any scans should be ordered by a LL doctor so that the specifics can be well, specific, and a LL should READ the scans, too, when at all possible.
Not just the report but the actual images. Most doctors don't know what to look for regarding lyme signs on an MRI. And a MRI cannot diagnose lyme.
Still, if your doctor suspects there may be something else going an and there are no LL neurologists, at least then you've got the MRI.
Contact your local lyme support group first, though, and see if anyone can suggest a neurologist who may know something about lyme or go the extra mile for you.
If you go to a neurologist remember:
AVOID SPINAL TAP (lumbar puncture) not a good test for lyme.
AVOID STEROIDS as they can make lyme much worse.
AVOID Food additives, MSG, "Natural Flavors" and all artificial sweeteners. They can cause numbness, especially for those with lyme.
------------------
Presence or history of a BULLS EYE RASH is a positive for lyme. You really need no more tests. Ever. Lyme is a clinical diagnosis and if you had the rash, history, past and current symptoms, that speaks for itself.
** You should be assessed for OTHER tick-borne infections, especially BABESIA.**
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
[ 09-14-2012, 03:09 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- mariana,
So that you may get the best replies possible, I'm posting your first post from
June 18, 2008:
Three weeks ago. Bull's eye was warm to the touch
other rashes on my body (the others were not bull's eye).
temp of 99.6 to 100.1.
aches all over my body. . . .
Today, you add:
started 4 yrs ago - bull's eye rash; tested negative for Lyme - was never treated for Lyme.
A few months ago I started feeling very sick . . . symptoms on and off:
joint pain all over body
heart palpitations,
dizziness,
now, air hunger.
numbness in face, hands and feet - everyday since May.
(mariana - catskills, NY) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm so sorry to hear that you were rejected by doctors for what was obviously lyme disease and possibly other tick-borne infections, too (which is very common).
There is still a very good chance that you can get better. I hope you can find the best LLMD around.
Be sure to connect with your local lyme support groups for suggestions. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
- ask for help here regarding finding the best LLMD, to find out more about the doctor you're seeing now, and how to find the best neurologist for MRI, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Thank you for all the information provided. Re: the neurologist. I think LLMD is not sending me there for Lyme but for other tests. I've been seeing LLMD since April and he gave me 2 supplements to take( not sure if I am allowed to write here which ones they are) and that's it. The doctor does not talk too much but writes down a lot. Here are the results from Igenex. Everything negative except for the IgM Western blot: it is positive on the 41 and 66.
Thanks
Posts: 54 | From catskills NY | Registered: Jun 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Mariana:
The 41 band indicates exposure to a spirochete bacteria (lyme, syphilis, weils, maybe a few others). It is antigen which targets the flagella of a spirochete.
From my reading 66 is not specific to Lyme either.
At least you know you've been exposed to a spirochete. If you have never had the antibiotics I'd guess (but I'm not an MD) you still have the underlying bacteria. I think your on the right track that it is Lyme.
My daugher's first test only had 41 as a positive. It took 6 months of meds and she then had 34 as well as a couple of indeterminate (all lyme specific). She too was never positive as when ever she had 2 positives at the same time they were on the different measures (IgG vs. IgM).
You may need to see a new LLMD.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
I went to a LLMD and he also had me test for MS, due to the neuro symptoms I had. He is a valid LLMD, but wanted to insure that something else was not going on. Not incredibly unusual. Better safe than sorry, especially if Igenex didn't pick up anything, although you can do a test dose of antibiotic and then retest.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i can see that llmd might send to neuro to rule out stuff and cover his butt
however...no abx at all??? i think you should share the name of the llmd with someone on here who has been here awhile---do it with pm---all docs who say they are lyme literate are not
i raised my kids in the hudson valley and know many docs there-id be glad to talk to you about llmds if you pm me
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I agree that I should see a neurologist to rule out other diseases. No, the LLMD did not give me abx.Maybe because he's not sure I have Lyme, I dont know.
Posts: 54 | From catskills NY | Registered: Jun 2008
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