posted
Hi! I am new to the group. I have gotten progressively worse since bloodwork, including Igenix has been negative. I was bitten back in 1995,engorged tick in back of head. Next day flu like symptoms. Following day, felt great. Not aware of what I know today. 2011,major stress in work!!Boom my body has been spiraling since then. Prior to that,never sick. I was healthy, non smoker, no vices. Yes...my question is have any of you had either of these test. Flow Cytomery (for lyme) or the CD57. I can hardly walk, my voice is altered and difficulty swallowing. All my MRI'S, lumbar punctures and tons of blood work normal. I believe those bugs have attached themselves to my cell walls! I am desperately looking for an answer. I have been to 11 doctors ...Seeing ID doctor this Friday. This is me a bit crazed....
-------------------- Teri Posts: 63 | From Hampton Nh | Registered: Nov 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Welcome, sheltielady. Sorry for why you are here, through.
As many with lyme cannot read solid blocks of text, here's your post broken up with some breathing room for the eyes - and for the brain. Typically, it's best to have paragraphs no more than about 4 finished lines (about 5-6 as you compose).
Extra white space and a few ** markers provided here to separate key details, making it easier to track cognitively and remember:
sheltielady writes:
Hi! I am new to the group. I have gotten progressively worse since
** bloodwork, including Igenix has been negative. I was bitten back in 1995,engorged tick in back of head.
Next day flu like symptoms. Following day, felt great. Not aware of what I know today. 2011, major stress in work!! Boom my body has been spiraling since then. Prior to that,never sick. I was healthy, non smoker, no vices.
Yes...my question is have any of you had either of these test.
Flow Cytomery (for lyme) or the CD57. ?
** I can hardly walk, my voice is altered and difficulty swallowing.
** All my MRI'S, lumbar punctures and tons of blood work normal.
I believe those bugs have attached themselves to my cell walls!
I am desperately looking for an answer. I have been to 11 doctors ...
***** Seeing ID doctor this Friday. *****
[loco] This is me a bit crazed....
(sheltilady in Hampton NH) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 1. "Seeing ID doctor this Friday"
Well, that won't do any good. Sorry. If you are going to discuss lyme, I would cancel.
If there is some reason you want to keep the appointment, please first read the "Why you need a LLMD" link in next set. Understand just what ID doctors do - and don't do. They are extremely limited in diagnostics when it comes to any chronic infection. They just don't even believe it's possible.
Now you may or may not have lyme, but that tick bite seemed to have an effect. Your symptoms certainly do match with some kind of tick-borne or chronic stealth infection.
Yet, if there is some other factor, an ILADS educated LLMD would still be best to see first and then they can suggest the next steps &/or experts in addition or beyond possible TBD (tick borne disease).
Even if it's something besides lyme, ID doctors won't know how to sort that out because they are lyme-illiterate. And lyme / TBD can cause all kinds of neurological disease that ID doctors would just stop at.
ID doctors are bound by IDSA guidelines which are a disaster. ID doctors are (99.9% of the time) NOT lyme literate and typically are very ignorant about all tick-borne or other stealth infections.
For the small percentage of ID doctors who might admit lyme exists on this planet, they do NOT recognize it unless a very recent bite / illness and they want to see the bulls eye rash right there (very slim likelihood for most).
With your long-standing history, you do not stand a chance with any ID doctor bound to the IDSA.
You need an ILADS educated LLMD for the best diagnostics. See next post for detail on terms.
2. "All my MRI'S, lumbar punctures and tons of blood work normal." "including Igenix has been negative"
MRIs are often fine. Lumbar puncture has terrible reliability and never a good test for lyme.
Assuming you had Western Blot, did you have both IgG and IgM?
Were ANY bands positive or even IND or EQUIV.? Were you assessed for other tick-borne infections?Still, tests are not the best way to diagnose.
3. "Flow Cytomery (for lyme) or the CD57."
I don't know what a "flow cytomery" is.
CD57 is not a test for diagnosing lyme. I'd save your money on that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might be able to start sorting out some mitigating factors. If not already done, you might be sure nothing in your diet (even in gum or lip balm or toothpaste) includes:
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory. And that can cause or make worse some of the symptoms you report. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Whether lyme or not, this matters. Magnesium can help calm neurological and speech issues.
Katie Couric TV program interviews two doctors & patients
Chronic Lyme Disease - Oct. 9, 2013
Two clips - notice the huge difference between the ILADS doctor (author of the book above) and the IDSA doctor
- but you may not be able to catch the serious errors from the ID doctor until you read a lot more. And you should not have to become an expert. Find an ILADS LLMD. They know far more about lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
A lot of tests come back normal because they're not tests for the bacteria. Forget the ID docs - they will not diagnose you.
I don't think testing is that important for you. You're symptomatic and in need of treatment.
I suggest you post in Seeking a Doctor for referrals to Lyme-literate doctors. We call them LLMDs - Lyme-literate medical doctors.
You can put the state abbreviations in the heading hat you're willing to travel to.
Posts: 13134 | From San Francisco | Registered: May 2006
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Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
If you've been sick awhile, your body just doesn't have the strength to make antibodies anymore and the Lyme test will be negative (sometimes antibiotics for a month will help the test go positive).
Other infections are a BIG deal too. I had normal bloodwork, until a doc finally ran other tests. I have 13 infections, last count (not fun to say the least). No wonder I feel like crap.
Here's the lab requisition sheet for Stanford's chronic fatigue department. I took this to my doc and had him run all the tests doc's had missed. This answered a lot:
posted
Thanks Judy.....One question for you,are these test paid with insurance? I too will print out the chart too. We all need on another (:
-------------------- Teri Posts: 63 | From Hampton Nh | Registered: Nov 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Yes, most of the tests were paid for by going to Labcorp. I have medicare and the only time I've had a real problem is when the doctor forgets put down the right codes to justify the test.
Labcorp will tell me before the blood draw if there's a problem with payment. I would then have to call the doctor and they'd have to dig up a code for me.
The only one I had problems with being paid was the h. pylori blood test. I was tested with both a stool test (paid for) and a blood test the same week.
They wouldn't pay for the blood test (we never figured out the right code) BUT that's the test that showed I had very high titers. I treated for h. pylori and some symptoms cleared, so there was definitely something going on.
The stool test was normal, but that can be inaccurate since it's very limited to whatever you're looking for being in the 1 sample.
Posts: 2839 | From California | Registered: Jul 2012
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Reasons for False Negative (Seronegative) Test Results in Lyme Disease -
[ 11-11-2013, 06:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you have Kaiser Insurance, you will need special information from us. Kaiser testing is not at all adequate but I'll just stop there for now. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I don't know if it's specific to medicare, but the way it works when I get blood drawn is a form is created when I give the tech the list for the draw.
On this form there are options like: if your insurance won't pay for the test, can we bill you?
I always mark "no," only do tests the insurance will cover.
The only drawback with Labcorp is that it doesn't test for many Lyme bands (only 3). I had to take antibiotics for a month and then it generated a positive result via Labcorp.
I believe the month of antibiotic made a HUGE difference with me getting a CDC positive result.
This year I got reinfected. I had to delay antibiotic treatment for over a month (long story). I got tested through Igenex without having the antibiotic challenge.
I AM Igenex positive but not CDC positive now.
I have way worse symptoms than last year (about 20 times worse) and now I have a CDC negative result. Go figure....
Posts: 2839 | From California | Registered: Jul 2012
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I got diagnosed with Lyme this summmer after getting some rough muscle and neurological symptoms. Igenex does a Western Blot that counts 2 bands that are specifically Lyme that the CDC does not count. But if you have had Lyme a long time (like I had but didn't know it until this year), you need to follow either the antibiotic or herbal "challenge" that Igenex suggests: I did for about a month the herbal one and then I tested positive on Igenex IgG (with PCR).
This they say is because if you have long-term Lyme disease, you don't have very many or active antibodies, so you have to "challenge" the bacteria and kill some so that the Igenex Western Blot (a PCR one) will show you have it.
I also tested in the low (below 30) on the KillerCell CD57 test suggesting Lyme. This is a LabCorp test that they developed. I was infected in 2009 and just thought my symptoms were age-related until this summer.
Good luck. Keebler is right about an LLMD. Most of my info has been from the book "The Lyme Disease Solution" but some from 3 other books I read.
Posts: 254 | From North Carolina | Registered: Nov 2013
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posted
Thanks Nancy...I just got the book "Why Can't I Get Better" from Dr.Richard Horwitz. I was fortunate and just saw him @MGH Boston at a seminar.
): Seeing an ID doctor since I have insurance. I have been tested 4x all negative. Going to tell her that I want CD57, Co-infection Panel and a Flow Cytomery Test.
I read about that from a man that kept on testing negative. It will be specifically for Lymes. Just trying to use my insurance since I have a good plan and won't cost me.
Good news is I found a LLND in NH whom I will see Dec.2. She spoke of the that procedure to check lyme thru Igenix. If all else fails, I will do that route.
I will keep you all atuned.
Yes, I too ordered magnesium. Csn't give up.
-------------------- Teri Posts: 63 | From Hampton Nh | Registered: Nov 2013
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posted
Thanks Nancy...I just got the book "Why Can't I Get Better" from Dr.Richard Horwitz. I was fortunate and just saw him @MGH Boston at a seminar.
): Seeing an ID doctor since I have insurance. I have been tested 4x all negative. Going to tell her that I want CD57, Co-infection Panel and a Flow Cytomery Test.
I read about that from a man that kept on testing negative. It will be specifically for Lymes. Just trying to use my insurance since I have a good plan and won't cost me.
Good news is I found a LLND in NH whom I will see Dec.2. She spoke of the that procedure to check lyme thru Igenix. If all else fails, I will do that route.
I will keep you all atuned.
Yes, I too ordered magnesium. Csn't give up.
-------------------- Teri Posts: 63 | From Hampton Nh | Registered: Nov 2013
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