posted
He doesn't seem to believe a lot about Lyme. He wanted to retest, even though I've tested twice (actually 3 times, positive.
Here it goes...
I am so confused. Last April, 2008, I tested cdc positive for Lyme and Bart. Then we rested in June through Labcorp. CDC positive again. Then I went to IGenex. Pretty much off the charts positive. Band 31 with confirmation test that confirmed it was Lyme and not other viruses. Cost me a lot of money. I had a ton of bands....or at least a lot of bands according to me, considering I didn't expect to see that many when I got the results. My llmd at the time said I had the almost the most out of anyone I had ever seen.
So, then my NEW regular doctor performed a Western Blot but it looked more like an ELISA but maybe I am wrong. What's going on? It said there is no Lyme. I remember hearing a story that a lady from Connecticut who was one of the originals who was treated by Alan Sterre (sp) who told her that you never ever get rid of this bacteria. She tests positive for every follow up. She is older now of course but still comes up positive. The test results that I got back are confusing but he says I don't have it. I will include them because it doesn't make sense to me. My other WB always had bands listed either reactive or non-reactive. This seemed to just have titers or whatever.
I feel sicker than EVER. The doctor thinks because my hands are not crippled that I don't have Lyme and it's Post Lyme Syndrome. The only place I have arthritis is is my back. My knees are bad also. For a long time it was just my left knee....long before I was sick. Now it's my right knee.
I'm confused. Lyme or NOT? Why was my IGenex test so positive? I don't understand this.
I won't bother with all of my other symptoms because it's a laundry list and I don't want to bore. But I almost have ever sx under the sun.
Can someone tell me about this result??? I really need help because now it brings me back where I was 2 years ago. Doubting, wondering, feeling like I've been on the wrong track. I haven't been on ANY abx for 10 months, can't afford it.
Did they run an Elisa on me? My others showed bands either Abnormal or non reactive. This had no bands at all.
Can you fill me in?
Here's the results: The lab tests states: L Lyme AB/ Western Blot Reflex....is this the same as a Western Blot. My other papers say "Western Blot", not "Western Blot Reflex"
Lyme Anti body reflex: IgG/IgM AB greater than 0.91 and index range 0.00 -0.90 My doctor said that is negative but when I look at it, it looks like it's over the index range, am I wrong?
Then, the other part of it is "Lyme Disease Antibodies, Quant, IgM: greater than 0.91. Index range 0.00- 0.90.
This was an Elisa right? It says EIA. Does that mean Elisa? I'm so confused. Can anyone help me? My doctor says it's negative but I wanted a real WB with the bands! This doesn't seem to be it. As much help as as many replies are possible. I feel like my diagnosis has been taken away and now I feel back to square one. I also found out that I have Hashimoto's yesterday. HELP! Lyme
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
The EIA is about the same as the ELISA. It isn't worth a darn.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I wish I could help you, but I don't know how to really interpret that particular test. Although, it does look to me like you were .1 over the reference range so that would technically make you positive.
I do know my LLMD says that LabCorp Lyme tests are worthless. I would definitely consider your Igenex testing to be much more accurate. It also sounds like you have many symptoms which we all know is the most important piece of the puzzle.
Are you still seeing your LLMD or is this new regular doctor going to be the only one treating you?
I don't know anything about Hashimoto's except that my sister was diagnosed with that yesterday too. With proper thyroid medication she should feel much better. I hope you have the same success.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Your tests are positive. Your response was out of range, being higher than the range limits.....
No other way to look at it except being positive. No doubt that you would still have many bands present on a IGeneX Western Blot.
Why bother with the doctor who uses "post lyme" in his/her vocabulary.
What, if not Lyme do they attribute your symptoms to?
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Your doctor is clearly NOT lyme literate.
If you've had significant bands in the past (bands that are specific to borrelia) and continue to have symptoms, you likely have lyme disease and need further treatment.
You do not need to keep being re-tested. Your tests will probably come out differently everytime due to antigenic variability, different labs, your body's ability to make antibodies which may decline as you get sicker etc. etc...
You need to find a doctor who understands lyme disease and get appropriate treatment.
I took a quick look at your history. Looks like you got the standard IDSA treatment. DO NOT buy into the post lyme syndrome BS.
You may already know this but I'll mention it in case you don't. There are battles going on regarding the treatment of lyme disease. Many who end up at lymenet with chronic lyme disease are the result of the IDSA treatment guidelines.
The Attorney General of Conneticut found that the IDSA guideline authors had conflicts of interest and thus the IDSA has convened a new panel to review the guidelines. Hopefully they will make adequate changes but I'm not holding my breath.
Many with chronic lyme get what we call co-infections from the tick that passes lyme. Some of these infections require an entirely different treatment than lyme disease. It is not unusual to have a co-infection and if you do, it is much more difficult to get rid of lyme.
Your best course of action in my non professional opinion is to seek out an ILADS LLMD. Most have extensive training in TBI's (Tick Borne Illnesses) and can give you proper testing and clinical evaluation for lyme disease and co-infections. Testing for most of these pathogens is poor at best.
ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
You can go here and register and get a list of ILADS doctors that are closest to you. http://tinyurl.com/6na364
A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few others personal stories. Check your library and if they don't have it, ask them to get it for you.
If you can't afford abx, please consider some of the alternative treatments. Lymenet is a good forum to learn about them. You may also want to look some of this info over. http://www.lymeinfo.net/alt.html
I'm sorry you are getting the typical treatment and runaround regarding lyme disease. You MUST take your health into your own hands now and aggressively pursue treatment. Make it your priority. Do whatever you have to do to get appropriate treatment.
If you still wonder if you have lyme disesase, please educate yourself. It takes time and effort but believe me, it is worth it.
Wishing you the best, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Sorry you have to deal with this Duck that is causing you pain and stress,which non of us need. Hope you will be able to find an Md that GET'S it. Healing Blessings Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I agree with others Nessa. The result still seems to be positive and your docs sounds quite uneducated.
On a side note, I have tried to write you several times in the past using PMS (long messages that took me a lot of time to write), but you kind of disappear for weeks/months at a time. I never heard back on any. Hope you're OK?
I'm concerned your stress levels are off the roof high. I'm like this to at times. I don't know your financial situation, but some Abx like Biaxin/Doxy, Mino are pretty cost efficient. IV Abx as you know aren't.
This whole Igenix thing comes up over and over and over and over again. Same three ideas must hold:
- Common bands show up on Igenix's WB and not on other labs due to STARI strain infection;
- Igenix reports other bands not shown on commercial lab's WBS such as 31, 34, and others on IgM side. If those show up on Igenix, of course you won't get them through LabCorp, Quest, etc; or
- Maybe Igenix just has too sensitive of a test and it cross-reacts with other bacterial infections. Most here will not like this, but it's a possibilility. 165 samples is not much from a credibility standpoint.
It's gotta be one of three reasons above logically. There is a chance your body could produce different antibodies at any given time due to health status / other circumstances too. I'd venture a LOT of $$$ that you can draw all labs at one day and time and send it to 4 labs including Igenix and get variable results. No doubt.
I wish you luck.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Anyone else?
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
If you can, please find another doctor.
I don't think the one you are dealing with knows much about Lyme.
I think your test is positive, but what is it that you think?
Are you sick?
Symptomatic?
Go after the Lyme and the best way to do it is to find a LLMD.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
ness
i would make my 'new' doctor my old doctor.
if you want to really get the best treatment, find a highly recommended LLMD and have him give you a clinical diagnosis.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Nessa, just because one test, especially the ELISA, comes back negative, does not mean the lyme is not there. The ELISA, for one thing, is a very insensitive test. It catches only 30% of the cases of people with lyme, which is AWFUL.
Secondly, they only take one vial of blood to test for lyme. In that ONE vial, they are looking for either antibodies or the lyme spirochete. They are not ALWAYS going to find what they are looking for in one little vial of blood.
It's like has been said here plenty of times. Say you have a swimming pool with a few plastic balls in the swimming pool. It would be like putting a small net into a big swimming pool and hoping to pull out one of those plastic balls. It's possible, but it's not ALWAYS going to happen.
In most cases, when you get a positive at all you should consider yourself lucky because it doesn't happen often. And don't ever question a positive. A positive is a positive no matter what.
PS - I agree with others. This 'new' doctor you have is not lyme literate and he will be of no help to you in your road to recovery and wellness. You need someone who understands this disease and its co-infections. Please find a REAL LLMD.
-------------------- 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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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The problem is real LLMDs cost a fortune and she said money is tight. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Nessa, I don't know if you have health insurance or not, but I didn't think I could afford an LLMD.
I called just to ask questions and found out that he took my insurance.
It was the best call I've ever made - I love my doctor.
Btw, I agree with the others regarding your tests, and your doctor.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I'm with them. Get a different doctor.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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