is lyme diagnosis truly clinical?

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gracietiger
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Date Joined Dec 2008
Total Posts : 129
   Posted 12/20/2008 9:52 AM (GMT -6)   
i have read that ld diagnosis is clinical. but it seems everyone with ld has had a positive test result. has anyone been diagnosed positive with negative test results? is it possible?
i have not been tested yet, but if i were to go based on clinical symptoms, it seems totally lyme. have ruled everything else out. i was on antibiotics at the time i was bitten by a tick, not sure i would have a positive test result!

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 12/20/2008 12:07 PM (GMT -6)   
Hi Gracie: I am having the same dilemma. I was made severely ill by toxic mold and after doing the treatment I still had "relapses" and then they tested me for Lyme. I am neg on Igenex but Dr. Fry at Fry Lab says I am positive. He does a blood smear where he looks under a microscope at your blood. So, technically I was diagnosed with a negative test (by Igenex anyway). I know how you are feeling, I am always thinking it is something else and they are missing it.    D

Razzle
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Date Joined Aug 2007
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   Posted 12/20/2008 5:32 PM (GMT -6)   
ID doctors who follow the CDC guidelines a little too closely seem to want a positive test in order to diagnose Lyme. Lyme-Literate MD's tend to follow clinical signs & symptoms more than test results when diagnosing Lyme, but the diagnosis is supported when there are positive bands on a Lyme test (even if the overall test results are negative by lab or CDC standards). Part of it also depends on patient history (known tick exposure and/or history of EM rash, etc.) and which specific bands show IND or positive on the Lyme tests.

For those who were on Abx at time of exposure, perhaps IgeneX's antigen capture test would be useful. This test requires a short course of abx, followed by a urine sample collection. The theory is that the abx kill of some of the spirochetes, causing Lyme DNA to be excreted in urine, which then can be detected by the test.

Just my $.02...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


studeski
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Date Joined Dec 2007
Total Posts : 62
   Posted 12/21/2008 5:10 PM (GMT -6)   
That would probably be the Dot-Blot test. That's two or more injections in the butt and thighs 2 gram of one and then another ABX. I don't remember the names of the ABX but I can look them up. My wife tested positive on that one. My wife's immune system is so low, looking for antibodies is a waste of time.

Claude

Dowa
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Date Joined Sep 2008
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   Posted 12/21/2008 5:16 PM (GMT -6)   
Claude: I also have low immunity, I should have that test done. Do I just ask for the Dot-Blot test and would a regular MD know what that was? I have no LLMD here. Thanks  D

2long4this
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Date Joined Apr 2008
Total Posts : 37
   Posted 12/21/2008 8:49 PM (GMT -6)   
Dowa said...
Claude: I also have low immunity, I should have that test done. Do I just ask for the Dot-Blot test and would a regular MD know what that was? I have no LLMD here. Thanks D


Dowa,
I was just wondering about your mold exposure. I think I may have that problem. How did you know and how did you treat it?
Any info would be appreciated...thanks

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 12/21/2008 9:12 PM (GMT -6)   

2long: I knew almost immediatley after cleaning my basement (that was moldy) that somehow the mold hadmade me ill. I ended up it the hospital for 8 days with all kinds of strange symptoms. I was diagnosed by a pathologist with a urine test where they test you for tricothecene. Heres a wbsite for you, all kinds of information. www.realtimelab.com They are here in Dallas but I believe you can send your urine to Dr. Hooper, ask him, hes great to talk with. Good luck its a very long road to recovery, I hope you dont have mold in your body. My treatment was very much like you would do for LYme. Organic diet, saunas..any method of detox will help. The damage is SO similar. You can also read about mold at Dr. S website. That is  www.chronicneurotoxins.com  Take care  D

 


Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 12/21/2008 11:23 PM (GMT -6)   
Dowa said...
Claude: I also have low immunity, I should have that test done. Do I just ask for the Dot-Blot test and would a regular MD know what that was? I have no LLMD here. Thanks  D


Go to http://www.igenex.com/

Click "Lyme Disease" on the left side of the page

In the expanded menu under the Lyme Disease option you just clicked on, choose "Antigen Detection" ~ this should open a page titled, "Lyme DOT-BLOT Assay for Antigen (LDA)"

No, most regular MD's would not be familiar with this test.  If I were you, I'd print out the page and take it to your doctor.

Good luck,


-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


studeski
Regular Member


Date Joined Dec 2007
Total Posts : 62
   Posted 12/22/2008 2:46 AM (GMT -6)   
I tried posting last night but my internet went down:
Igenex Labs has a number of tests you can use. The problem is the CDC and IDSA don't recognize Igenex as a source for Lyme's tests. They tried to sue Igenex but lost because Igenex is really on the up and up. I doubt you will find a regular MD to help you with that but it's worth a try. If you can find a clinic with a DO that does alternative treatments he may do it.

Claude

chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 12/22/2008 1:37 PM (GMT -6)   
Dowa,

Thank you for your info in this thread... Your story and the neurotoxin website is very interesting and helpful to me. During my lyme diagnosis, I went about 3-4 months down the toxic mold path. The conclusion I've come to (with docs) is that I have lyme and mold triggered it. Not sure if I was bit by a tick or something else. In any event, the chronic neurotoxin treatment is interesting.
1)Have you actually purchased the treatment plan from that website?
2)If so, how did that go?

Chief

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/23/2008 9:38 PM (GMT -6)   
I would say yes, it's a clinical diagnosis since all of the current tests are horrendous and miss a lot of patients!
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06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
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