I really glad to have found this group. I've been reading for a couple of weeks off & on, the more I read, the more the last few years of my health are making sense now!
posted
I would suggest you find a LLMD and make an appointment as soon as possible. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10211 | From Illinois | Registered: Aug 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*)!*!
What Hiker wrote*)!!!!!!!!!!!!!!! LLMDs don't general consult from far away because they get in trouble for it*)!!!
I would try & stay on the abx!!! I wouldn't worry about resistance so much as worry about getitng very much worse which can happen quickly for a minority (like me). It is the only thing I have ever seen put chronic Lymies into full remission!!!!!!!!!!!
-------------------- 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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posted
**** I had "IND" on 23-25 kDa, "IND" on 39 kDa, "IND" on 41kDa and "+" on 83-93 kDa. I also got a test for my son which said overall "negative", but a "+++" on 41 kDa.****
From that info, my non-medical opinion is that you have Lyme disease....no doubt in my mind....but I'm not a dr!!
Why do I say that??
39 is specific for Lyme...even an "IND" is showing SOMETHING... It's a weak positive.
"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track."
The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.
18: An outer surface protein.
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
written by Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I'm sorry to hear of all of your health problems.
I'm a newbie here so I don't know much, but you do seem very Lyme-like to me.
I know LLMD's are pricey, but I do think it's worth it. In the end it may save you more money because will start to get answers, get better, and your medical bills will go down as a result.
Did you get tested for co-infections with your Igenex test? That may be why you have had such a variety of symtoms and tested "negative" for Lyme.
Since getting Lyme, I have also had numerous gynecological issues. (Nothing as serious as yours.) But I started getting painful cysts, alarmingly heavy periods, and now, no periods at all.
I have also had pain at the tailbone. In fact, that has been my most nagging problem.
Best of luck to you,
Ellie
P.S. Mice carry Lyme, so why not squirrels??
Posts: 390 | From Oakland, CA | Registered: May 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please, please find a LLMD.
Make sure you get a copy of your Igenex test results and any other
Lab work/surgery, etc you have had done until this point.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
welcome; thanks for sharing your story and igenex results! glad tutu posted dr. c's western blot igm and igg explanations!
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posted
You really need to see an LLMD. Can't speak for your doc, but my family's LLMD does consult with pcp's long distance.
I know it's expensive and inconvenient. There just doesn't seem to be any other way to get the care you need. Good luck.
Posts: 991 | From California | Registered: Feb 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Hi.
It's very interesting that you had tailbone pain. I have that! I don't remember when exactly it started, but I know it started near the time I first started feeling ill.
I still have it. I thought it was from sitting on the couch in the same position for so long every day, but I still have the tailbone pain. I never heard it having anything to do with lyme, but that would make so much sense!
My test came out overall negative but ++ on 41. It's annoying to only have that as positive, since I am pretty sure I have lyme, but it's still not a clear-cut sign, so I sometimes still get very depressed and upset about not knowing FOR SURE (and scared that it may be something else very bad!).
Goodluck!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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bettyg
Unregistered
posted
tailbone pain; mine somehow got knocked out of position. p.therapist went up inside pushing it back where it's supposed to be! well, instead of going in, mine juts OUT!
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posted
Thanks everyone for the replies. Monday a lot of my symptoms came back, by Tuesday they were gone again. It was the strongest they've been since starting this course of antibiotics. Is it typical to have this happen? Monday was a particularly polluted day where I live - is it possible for pollution trigger anything? (will be definitely asking for a refill of antibiotics!) Lymetoo: thanks for the explantion! I relooked at my test and noticed I miswrote something in my first post - it was a positive "+" on 58 and not 83-93. I see you wrote "heat shock protein" is this one lyme specific too? Also, someone mentioned there is a LL nurse in the Austin TX area - is this person still in the area? Would this person be a good choice to help me in treatment? (opinions/experience?)
My insurance does't "believe in Chonic Lyme", so it won't pay for my LLMD specialist. But I did talk to my GP and Asked him, "If my LLMD's tests come back positive, will you allow the prescriptions to go through the insurance company?" He said he would.
Now I am working on getting a discount on Doctor's fees. It doesn't hurt to ask. Ask about free trial meds your doctor has received from RX companies.
BTW, did you breast feed your son? Leading LLMDs believe that LD can be transmitted through breast milk and also during pregnancy. Unfortunately, a lot of children born to LD Moms have health issues.
If you are married, your husband might need to take on an extra job (pizza deliverly..) or if you have any, sell some luxury items on Craig's List. That is what we are doing. Example: Pianos, boats, jet ski, motor cycles, ect.
Do NOT let it go, it only gets worse.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hello and welcome
Just want to ditto a few things: You need to be taking acidophillus 3 times a day a few hours away from your antibiotics.
And also: GET TO AN LLMD. Beg, borrow, steal - take your test results to the nearest LLMD.
I wasted 9 months playing the 'in-network' doctor thing and was happy to be on abx for a 'chronic sinus infection'. Lesson learned the hard way - please don't make the same mistake I did.
I really thought I'd end up hospitalized and pretty much had to hit rock bottom before I opened up my eyes and wallet and got the treatment I so desperately needed.
Regular doctors just don't know how to treat the multitude of issues that come along with TBD's, nor do they know how to spot co-infections, which is always a real possibility.
Keep reading here - lots of good stuff.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
EWT1638: Yes I was breastfeeding while having symtoms - I thought at the time it was fatique from having small kids - now that I realize it is Lyme I'm worried for my son. He is ASD, he improves when he's on antibiotics (ie for strep), he seems to have similar symptoms to me, I've seen him pushing on the bottom of his ribs - just where mine were hurting. What can be done for small children? Are continuous antibiotics too harsh? He had a +++ on band 41, would that test result be considered positive by a LLMD?
lymeinhell: I'm taking probiotics, but I guess not enough - currently I'm taking 1-2 capsules Culturelle or multiprobiotic mix before bed -adding more sounds like a good idea.
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