posted
We think my wife has Lyme. She thinks she may have had it all her life.
We are currently waiting for results for a complete Lyme panel from Igenex.
My wife is afraid that if she has had it all her life, she will not have the antibodies to show up on a western blot.
She thinks we should have gone right for a Lyme Dot Blot on her urine to start. She thinks that would have a beeter chance of showing positive.
I am just trying to assure her that that there is a high probabality that the complete panel should show something regardless of how long she has had it.
We should get the results in about a week. We have an appointment with a LLMD in MO in two weeks.
Can anybody share some insight into there experiences with testing. My wife has had enough to worry about. First is was not knowing what was wrong, now she is worring about if we had the right test done.
Thanks, Bill & Marilyn
Posts: 65 | From Georgia | Registered: Oct 2007
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posted
I had it for 35 years undiagnosed and was CDC IgG positive on my Western Blot.
She had the right test done, but there is no guarantee it will be positive even if she does have Lyme. Lyme is a clinical diagnosis supported by testing, but not diagnosed by testing.
I hear the LLMD in MO is a good one, so she'll be in good hands.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TerryK
Frequent Contributor (5K+ posts)
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posted
sixgoofykids is right. The diagnosis is clinical. The LLMD may decide to do an abx challange because sometimes that can convert a negative test to positive if indeed her tests are negative and she has lyme.
That said, there are many proven cases of seronegative lyme.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
You should know that in Georgia is STARI, a spirochetal disease almost indistinguishable from Lyme disease- a dumb name in my opinion- it is an acronym for:
Southern Tick Associated Rash Illness.
If she has that she will test negative on the normal Lyme tests!!! Just fyi- WELCOME WELCOME!*))!*! Sincerely, Sarah ********************** 1: Mo Med. 2005 Sep-Oct;102(5):442-6.Links Bacteriocidal activity of lizard and mouse serum for Borrelia lonestari, putative agent of a Lyme-like illness (AKA STARI or Masters disease) in Missouri.Grigery CN, Moyer P, Little SE, Masters EJ. Sikeston High School, USA.
OBJECTIVE: To determine responses of Borrelia lonestari and Borrelia burgdorferi to Eastern Fence lizard (Sceloporus undulatus) and Swiss-Webster mouse (Mus musculus) sera. RESULTS: Lizard sera lysed both Borrelia lonestari and Borrelia burgdorferi. Mouse sera lysed only Borrelia lonestari. CONCLUSIONS: Borrelia lonestari and Borrelia burgdorferi spirochetes did not survive exposure to lizard sera. Mice are reservoirs for Borrelia burgdorferi but may not be a Borrelia lonestari reservoir because spirochetes did not survive exposure to mouse sera.
A rash similar to the rash of Lyme disease has been described in humans following bites of the lone star tick, Amblyomma americanum. The rash may be accompanied by fatigue, fever, headache, muscle and joint pains. This condition has been named southern tick-associated rash illness (STARI).
Image: Patient with STARI; 1) site of tick bite, 2) red, radial, expanding edge of rash. 3) central clearing.
Photograph used with permission from the Journal of Infectious Diseases. The rash of STARI is a red, expanding ``bulls eye'' lesion that develops around the site of a lone star tick bite. The rash usually appears within 7 days of tick bite and expands to a diameter of 8 centimeters (3 inches) or more. The rash should not be confused with much smaller areas of redness and discomfort that can occur commonly at tick bite sites. Unlike Lyme disease, STARI has not been linked to any arthritic, neurological, or chronic symptoms.
The cause of STARI is unknown. Studies have shown that is not caused by Borrelia burgdorferi, the bacterium that causes Lyme disease. Another spirochete, Borrelia lonestari, was detected in the skin of one patient and the lone star tick that bit him. However, subsequent study of over two dozen STARI patients has found no evidence of B. lonestari infection. In the cases of STARI studied to date, the rash and accompanying symptoms have resolved promptly following treatment with oral antibiotics.
CDC STARI page-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I get so hung up in the now. I wasn't clear about the past.
We live in Georgia not but we both grew up in NY. We have only lived here for the past 4 years.
My wife actually think she may bhave been born with it, but growing up in NY there have been ample opportunities to be bitten without knowing it. She has also had surgeries with transfusions that could be the transfer point as well.
She wants so much to have a definative answer. It would help her feel better about all the years she was told that it is all in here head.
Thanks, Bill & Marilyn
Posts: 65 | From Georgia | Registered: Oct 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Aha, then she could have Lyme AND STARI*)!*)!
Hopefully just Lyme!!
You know, I ended up, after treatment, feeling happier and healthier than EVER before in my life at a certain point (month 8-9 of IV Rocephin actually to pinpoint it for the happy feeling, and about a year and a half AFTER that after a lot of strength training for the body physicality feelinG!). That was after being the sickest in my life.... very sick. Your wife CAN get better- a lot better- and maybe completely well*)!*)!!!!!!
Yes, it really CAN be completely seronegative. There's a grim story which proves it, the story of Glenn Killion, a man convinced he had Lyme, a wonderful man, wonderful father, always tested negative, even negative spinals, died, his wife & Mom (I knew his Mom, GREAT Lyme activist!) sent tissue samples to Doc Paul Duray at the NIH and voila, he had spirochetes in heart & brain. So yes, it is truly TRULY a clinical diagnosis. So is Ehrlichiosis. Babesiosis tests are not much better.
Your wife is RIGHT, the Lyme dot assay may have a better chance and the Western Blot measures exposure really because it is antibodies. BUT she may also be seropositive- some people are.
The average # of positive bands for a man who has Lyme are 6, the average for a woman are 4.
The CDC requires- 5!!!
Doc S uses that in lecture in a slide. LOVE that slide- sex bias in the Dearborn crieria for Lyme diagnosis!!!!!!
SO be aware- the Dearborn criteria re CDC basically suck. Lots of reasons why- if you want to research it if we have good articles here...
That LLMD in MO- )**)!*)!*)!*)!! If his name starts with a C and ends with a T he is a VERY VERY VERY good doctor, one that I know 2 people who have even gone from California to see him! A great reputation. One of the very best LLMDs there are!!!!!!!!!!!! You are lucky to have gotten in with him!*)*)!!
Sounds like you are on a good path!!! Any questions there are lots of us here. Welcome again!*)*)!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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