posted
I recieved some really confusing blood test results today.
My Ingenex lyme, bart, babes, erlich have all come back squeaky clean negative after a year of ceftriaxone. I have never tested positive for lyme in the last ten years but have all the clinical symptoms.
I'm still horribly sick. I was dxd with ALS a year ago but have been hoping I had lyme. My doc is going to test for heavy metals and mold next.
My thyroid is low, Vit D really low, and PCR nuclear tests are abnormal. Its all over my head but I'm starting to lose hope of getting well.
Time to lay down and die I guess.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Test, test, test.
Do not accept a diagnoses that has no cure... there is something causing your illness, you just have to find it.
You said your doc is going to test for heavy metals and mold. How is he testing?
Don't ever quit. Do you have a friendly doc who is willing to keep testing until you get some answers?
Don't put all your eggs in one basket.
Mold, metals, viruses, bacteria... the symptoms can all look the same. Find some proof in testing!
We are praying for you.
-------------------- 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
If you have not done it then I would suggest a brain SPECT scan at Columbia Presbyterian in New York. They have patterns they can compare to and the odds are highly in your favor that if you have a tickborne illness you will have an abnormal test that fits with lyme or vasculitis.
Real LLMD's know that the sickest patients very rarely test positive to lyme even with IGeneX or other specialty labs.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My daughter and I have tested positive and negative throughout the course of our illness and treatment. Currently we are both testing negative but still have symptoms and still herx.
All the test do is measure antibodies you are making against the bacteria. If your body is not making antibodies because your immune system is not recognizing the infection...you will get a negative result. Still does not rule out lyme!
The fact you improved on antibiotics means more than lab results. Dont give up.
Posts: 747 | From Utah | Registered: Apr 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Agreed---you can't go by tests alone!! What is your CD57 result? That should give you another good clue (Labcorp only).
Have you looked into being evaluated for IVIG? That might help, too. You would need to see a LL neuro or immunolgist to be evaluated for that. Probably a LL neuro in your case.
Don't give up! I understand the feeling, but . . .
And, yes, look at all the other factors, too. It sounds quite unlikely that you don't have TBI's. What about Mycoplasma? That's another biggie, esp for ALS.
Posts: 3792 | From around | Registered: Mar 2008
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posted
Even if you can get to AZ or have your doc test you with the Fry Labs..... it would be worth the $499. for the whole test thing he does.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
sending you a PM with an "new Test" info your doc may want to look into.
I just received the info from a member of a Lyme support so I do not know more info
Hope it helps.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Sorry, but to me this seems like a classic example seen on this site of treating something that is not there.
You say you have all the clinical symptoms, but they are such non specific symptoms- found in 100's of other diseases, disorders, and problems!
If you have no positive tests for any of the tick borne illnesses, and haven't repsonded to treatment, there's absolutely no reason to believe you have Lyme.
Many on this site think EVERYTHING is lyme.
Posts: 306 | From NY | Registered: Sep 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I can understand where you are coming from, nybasketball212.... but from reading his other posts it's obvious that he HAS seen improvement with abx. So..he HAS responded to antibiotics.
With true ALS... you don't get better. At all. I remember a post where he said some of his symptoms were better and some weakness was better. That doesn't happen with ALS.
I'm not saying he even has Lyme... but obviously he has something that responds to abx, at least on some level. Symptoms are worsening since stopping treatment.
Don't give up 2young. Keep searching for the answers and the solution.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
Like I've said before, nybasketball.. I'm glad you weren't here when I was first diagnosed. You may have discouraged me from even being treated.
Instead .. I AM WELL.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
You did not mention or talk about what kind of parasite cleanse you used. This could be the main issue. It has to be addressed first. A study said 90 per cent of people have a parasite issue.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Thank you for all your ideas. I will talk to my new osteopath about everything. He is young and not very experienced in lyme but he's friends with Dr Martz so I hope he won't be discouraged by the ingenex results.
I'm doing a quicky mold test with a vaccum filter and a heavy metals test now.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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posted
When someone says they received a negative test from Igenex, are they seeing an "IND" on any of the titers?
I know my report was negative also, but had IND on specific Lyme titers. Please see my signature below for more info and details.
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
quote:Originally posted by kimmie: All the test do is measure antibodies you are making against the bacteria. If your body is not making antibodies because your immune system is not recognizing the infection...you will get a negative result. Still does not rule out lyme!
The fact you improved on antibiotics means more than lab results. Dont give up.
Kimmie, I really like the way you have dexcribed why we get negative results. It's very plain language and easy to understand.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Fuel 2112:
I was negative thru Igenex but had IND on a significat band. If the band had been clearer, I would be Igenex fully positive.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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