indeterminate result

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gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/12/2009 8:24 PM (GMT -7)   
how many docs consider an indeterminate result a positive one?? does anyone know how often people without lyme's can have indeterminates, even on the "specific" bands?

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 3/12/2009 8:48 PM (GMT -7)   
I had two positives and four indeterminates and was still told it was negative. That was even with 41 being positive. Of course, this was NOT an LLMD and they might feel differently about the results. Do you have an LLMD gracietiger? I am still confused about the whole test  result thing... D

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/13/2009 7:50 PM (GMT -7)   
hi dowa, and thanks for your response.
i still don't have a llmd. i was waiting to meet with my infectious disease doc again, who ran a whole panel of tests like all the herpes, epstein barr, mycoplasma, etc etc. i was interested to see how those came back, as i have been loosely diagnosed with "pots-cfs-like syndrome." that is my diagnosis. it is very questionable. my team of docs agree that an infection or virus triggered this. but no one can answer which one. my ID doc, who also specializes in CFS, sees a lot of people with EBV and the likes that can cause CFS.
However, all those tests were negative for me. So, I still have no answers at all, and I honestly feel like lyme's is like the only possible option left. especially given that i have a history of a tick bite in africa, where, despite lyme's disease not being known there, an NIH study found the borrelia species in a village really close to mine that caused tick-relapsing fever. so i am definitely feeling the pressure to see a tick doctor. but i just want to feel like lyme's, or something similar, is a really viable option for me before i do that. i am a student, so the money would be really really really tough for me to come up with. i have some concerns about the onset of my issues and how much they don't fit the typical "lyme" picture. i started with facial flushing, panic attacks, and a really rapid and forceful heart rate. then came shortness of breath, chest tightness, and months later, finger joint swelling came. it just seems like an unusual onset of something like lyme's. i have not ever read in any literature about anyone having facial flushing, heart problems and panic attacks as the very first symptoms.
so i have reservations about shelling out hundreds if i don't have this problem. i have an igenex test with a positive 41 and indeterminate 31. this is not very strong at all. though, if the CDC would have considered a positive diagnosis had that 31 been firmly positive, then it seems like i could be right on the edge...

anyways, i am blabbing (sorry, really brain fogged right now!), and i know no one can give me an answer here, but i am just wondering if anyone knows how likely it is that people without lyme's would have indeterminate bands???

Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 3/14/2009 3:52 AM (GMT -7)   

Hi,

My IgenixTests came back positive on 41 and IND on 31.  My LLMD has been treating me for over a year and I am definitely improving.  A lot of the ILADS feel that and IND especially for a band that is specific to the borrellia bacteria shows that something is there, but these tests are not sophisticated enough to pick it up.   You should probably get to a LLMD as soon as possible.

Take Care,

Karen


gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/14/2009 9:29 AM (GMT -7)   
thanks, karen. that is very helpful.
i am wondering, how soon after treatment did you start to improve? has it been gradual over the course of the year, or are you just now starting to improve? how long does your llmd suspect you have had lyme's???
thanks so much!

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 3/14/2009 11:53 AM (GMT -7)   
Did they test you for babs or bart? The tests are not very accurate but some say clongen and fry could find them for you. That would cost $ but your rush of symptoms sound like a coinfection. Not that you don't have lyme but the coinf. work so much faster on your body. And these are also all over the world. I've had a lot of the symptoms you've listed and I do not attributed those to lyme. I can't tell you which coinf it is because I can't get +s but I am doing so much better on mino, biaxin, and plaq. The mino especially has helped reduce my head pressure.

Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 3/14/2009 2:08 PM (GMT -7)   
After I started treatment, I herxed pretty badly for a month or two and very gradually started doing better and better. Periodically, the pain will cycle back around, but it only lasts for a day or two.

I grew up in Maryland, Massachusetts and Long Island and I can remember often having ticks on me. But about 5 years ago after a tick bite, I started with knee and hip pain. But of couse, I just thought the pain was because I was getting older. The about 2 years ago, I was bitten again. This time the pain started to get really bad and would move around my body, I started forgetting words and having "fuzzy thinking". By this time my son had been diagnosed and was on treatment, so I knew what to do and where to go.

I don't know what part of the country you're in, but here in NY, there are one or two LLMDs who take insurance. Because of this, they try to stay under the radar and treat conservatively. The doctor that treats me takes insurance, but because my son is so sick, he needs much more aggressive treatment and he sees a LLneurologist in CT. If you want the names of the docs who take insurance, Email me and I will gladly give you there contact info.

Hope you can get some relief soon.
Karen

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/15/2009 8:19 AM (GMT -7)   
seeingstars - was tested for babesia and others through a basic laboratory. not even sure what kind of test it was. are the co-infections just as hard to detect as lyme's, or are the regular tests considered fairly accurate?

karen - thanks for offering your doctor's info. i'm actually living in california now, so i'm doctors in new york won't do me much good!!! thanks for sharing your insight though. i also grew up in maryland, and was also living there for a couple of months when i first started feeling sick.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 3/16/2009 7:14 AM (GMT -7)   
gracietiger- NO, the coinfection tests are just as bad as the lyme tests if you aren't sending them to a special lab like fry-he looks for the bugs in the blood by microscope. And apparently Clongen is able to detect several different strands that regular labs don't. The #s are in the teens for different strands of bart and babs yet reg labs test for like 2. Very deceptive. Some doctors are oblivious to all the strands and tell you you don't have it if these tests come back neg. NOT very professional if you ask me. I think there are a lot of doctors out there who got their degree out of a cracker jack box. Just my opinion.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/16/2009 12:30 PM (GMT -7)   
Don't waste your time with ID's or any other than a llmd. Bite the bullet and pay to see one. You could be like many of us here and waste valuable time while getting worse. Blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 3/17/2009 3:31 AM (GMT -7)   
Gracietiger,

"i started with facial flushing, panic attacks, and a really rapid and forceful heart rate. then came shortness of breath, chest tightness, and months later, finger joint swelling came."

I had/have the same. Also I feel all my head is burning, and I can't handle warm weather. Also I have sweating and many times I feel I can't get air.
I went to a LD and he did a test for lyme. I asked him about co-infections but he said he only does test for lyme :(
I'm still waiting for result, but I think it's positive because the doc asked me to start taking Vitanax PX4, Human Gamma globulin, Hepabene...
I had a red rash about 4 years ago, but it was not very big, about 3-4 cm, but when it started to go away, i remember the middle of the rash became clear at first.

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/17/2009 6:43 PM (GMT -7)   
Hi Hope, I hope you get some answers soon as well!!!!! I am interested in the fact that you had the same onset of symptoms as I. Have you had any other tests/diagnosis? Or did you go to the lyme doc first?
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