posted
Hi, I'm really confused about my western blot results and am wondering if I should even continue to keep my appointmet with the LLMD I have in a few weeks. My first WB results came back positive for IgM 23, 39, 41 and IgG 41 and 58. The lab's interpertation was negative for lyme however my doctor said it was was borderline. Anyway, they put me on 3 weeks of doxy. I got retested in August by a doctor who said the first test was negative for lyme so she didn't see why I was even put on antibiotics. That test was positive for IgM 41, IgG 23,39,41, and 66. I was ok for about 6 weeks and then went down hill with serious joint aches and strange pains, headaches and fatigue so I went back to my doctor again. They retested and now I only show positive for IgG 66. Does anyone know if the results of the WB change over time? I'm just wondering if I should still pursue the appointment with the LLMD since I'm still confused about wheter I really had lyme or not, I've had 3 different answers so far and I'm pretty confused.... Posts: 9 | From Northern MA near NH border | Registered: Oct 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi Nicole,
Welcome, and so glad you found us. This site is a tremendous source of good information.
I had to look at your post twice to see if I was reading it right! What lab did your testing?
You are considered positive with (2) bands positive!! I had only bands IGM #23 & #41 and was considered CDC positive thru Labcorp.
Not sure what your doctor is thinking!! Read this thread on how to interpret the Western Blot:
Your symptoms have returned because you need LONG TERM treatment based on how long you have had symptoms. And basically, that is how lyme is diagnosed, not on test results alone.
And OMG, YES do keep the appointment with the LLMD. VERY IMPORTANT!! as most doctors do not know how to treat lyme.
It is also important to be tested for coinfections. They are organisms that also travel with the lyme bugs. Your LLMD should know the proper testing for it.
Here is some good information to print and read over thoroughly. Dr. Burrascano is considered the top lyme doctor in the country.
posted
Keep your appointment with your llmd. You have lyme disease.
If sounds like the typical neuro/hmo drs following cdc surveillance standards saying you dont have enough bands to have lyme. But you do have enough bands and you need to see a llmd to get proper treatment.
The bands on wb tests can change over time. If you are on abx and restest, you will likely show more bands as your body fights the lyme.
Youve come to the right place for answers. So keep your appointment...because you have lyme.
Posts: 514 | From . | Registered: Apr 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Lyme
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sorry you had to find your way here. But we all hope you can find your way to good treatment.
1) Retesting never works. You can't test lyme like that at all. In fact, tests are not the sole determining factor. But, you certainly have glaring information in your tests.
2) Three weeks of doxy is too short of a course, and
3) doxy, alone, is not enough. Combination treatment is required.
Your tests are crystal clear, however.
I hope you can find a doctor who is properly educated. Links below will explain the importance of that. Most doctors have never been taught anything about lyme or other tick-borne disease. It is extremely complex.
You need an ILADS educated LLMD. From there you can determine a course of further evaluation and treatment.
The good news is that if addressed now your future can be brighter. Good luck.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
quote:Originally posted by gemofnj: What lab did your testing? You are considered positive with (2) bands positive!! I had only bands IGM #23 & #41 and was considered CDC positive thru Labcorp.
The lab was Quest Lab. I did read the info both on CDC and IgeneX about the lyme test and was suprised the the lab interperted the IgM as negative since I had all 3 bands positive. I guess my worst fear is that it was all in my head since that's how my doctors made me feel, and now that the last test came back with only one band positive. My doctor said it is not worth pursuing, but I feel differently based on how I feel lately. Thanks to everyone for all the great info you've shared here! I can't tell you all how sane you've made me feel Posts: 9 | From Northern MA near NH border | Registered: Oct 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Nicole,
If this makes you feel any better, Quest is the lamest lab for lyme testing!! The second worst is Labcorp.
IGENEX is the best because it has so many more bands on it and they are the best lab for tickborne infections.
Once you see your LLMD, they will probably use a very good lab for your coinfections tests as well.
You are very lucky to have had a very positive test result in the beginning. There are alot of really sick people that never have a positive result.
Keep copies of all your tests results. Good to have for future use and tracking progress.
Its also a good idea to keep a daily log of your symptoms. Lyme reproduces every 28 days and can only be killed during its repro cycle. So that is one reason why treatment takes so long.
Hope you feel better! Posts: 1127 | From atlantic city, nj | Registered: May 2008
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quote:Originally posted by gemofnj: Lyme reproduces every 28 days and can only be killed during its repro cycle. So that is one reason why treatment takes so long.
Thanks for the info. If it reproduces every 28 days, does that mean there are times where I might feel better than others? even with all this great info, I still doubt myself a little. I just went through about 3 weeks of feeling awful, but this week seems to be ok...is that normal or consistent with lyme symptoms?
Posts: 9 | From Northern MA near NH border | Registered: Oct 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
What you may have experienced is the "herx" or herxeimer reaction. You can even google it.
It is a period where your body starts killing off the bugs and you feel worse before you feel better.
Check out Dr. B's guidelines, its explained very well in there.
But yes, once your doctor sharts a protocol it is possible to feel crappy or even get really unfcomfortable (herx)for a period.
If you read around or do a search up at the top for "herx" you will get lots of threads about it.
Some people have them for days, or even weeks. Even tho we feel sick, it makes us feel like we are accomplishing our attack on the lyme and co's.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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