Have you been properly tested for Lyme poll?

[soxfan]

Wanted to post all my IND on the 3 different Igenex I have had done over the years....

IgM- 23-25, 31, 34, 39, 41, IND and 66+ on the IgG- 31, 39, 83 IND 41+++, 66+,

I have also been tested numerous times for co-infections where I once had a positive titer for Bartonella and then a negative titer...

 

[svetoslav80]

soxfan: Well if you noticed being bitten by a tick and had the bull eye that's another story. I hope you have had a course of at least 2-3 weeks of doxy. My post was more to those who are paranoid without any reason.

 

[peggy-sue]

Quote: "My post was more to those who are paranoid without any reason."

Thanks for clearing this up svetoslav - I fully understand where you're coming from now!

 

[vitamink]

Another data point: initially I had a Lyme Western Blot done (at Quest) that showed IgM 23+, 39+, and negative IgG. After several months of treatment I repeated the Western Blot (at IGeneX) and now have IgM 23-25+, 31+++, 39+, 41++ and IgG 23-25 IND, 30++, 39+, 41+, 58++. One band away from a CDC-positive result...

 

[soxfan]

I was recently bitten by a tick in June of last year...but when I became sick in 2004 I never saw a bite.. But was still diagnosed with Lyme 2 years later. In fact I was treated by the doc in NY for babesia as well even though I had no symptoms of that co infection. I still agree that the whole Lyme thing is out of control because of the poor testing...people want to know what is wrong with them and want to have hope of getting well...that is why I believe no matter what the testing says they say it is unreliable. I was the same way..
I wanted a diagnosis so I would know why I was suddenly very sick ..but even after courses of abx I never had any positives. I think I was treated for several reasons..I had a low cd57 at 21...I live in NH where deer are in our yards and I became Ill basically overnight.

I was treated in June with minocycline and my Lyme symptoms went away...I am still very unwell with the symptoms I started with in 2004 ..in fact I feel as though I have a completely different illness now...

 

[Lotus97]

I've had a recurring rash where I was bitten by a tick so I'm not sure I need to be tested considering that the tests aren't 100% accurate. I was wondering though, how likely is it to have a coinfection, but not borrelia? And how accurate are the coinfection tests?

 

[Jarod]

I had a bullseye rash in the early 80's I think, right around puberty. Never treated or tested for it because nobody ever thought to mention it I guess. Never took any antibiotics until approx 2008.

Around 2005-07, I got the standard lyme test and had one band positive. Nobody mentioned it. I do test high for a chlamydia pneumonia infection, and also have responded well to doxycycline when I tried it.

Not saying the ABX route is the fix.

Dad thinks mom had fibro back in the 60's before they had me.

 

[roxie60]

Another data point: initially I had a Lyme Western Blot done (at Quest) that showed IgM 23+, 39+, and negative IgG. After several months of treatment I repeated the Western Blot (at IGeneX) and now have IgM 23-25+, 31+++, 39+, 41++ and IgG 23-25 IND, 30++, 39+, 41+, 58++. One band away from a CDC-positive result...

you've got all but one band as positive and you still dont qualify as CDC positive - what in the blazes does it take for the CDC to recognize Lyme???? Also just heard that Social Security doesn't recognize lyme as a reason to approve disability - figures - batten a 1000

 

[vitamink]

there are actually 10 igg bands (i didn't list them all) and you have to have 5 of them to be cdc positive. i had 4

for more "data", i had another western blot done at stony brook earlier this year:
igm 18+, 23+, 41+, 58+, 62+, 93+
igg 41+, 58+, 64+

roxie, were you diagnosed with lyme? (i haven't been on these forums in a while...)

 

[roxie60]

there are actually 10 igg bands (i didn't list them all) and you have to have 5 of them to be cdc positive. i had 4

for more "data", i had another western blot done at stony brook earlier this year:
igm 18+, 23+, 41+, 58+, 62+, 93+
igg 41+, 58+, 64+

roxie, were you diagnosed with lyme? (i haven't been on these forums in a while...)

vitamink I expect to get results back from IGenex next week (I have been impatiently waiting to find out after all these years and many requests over the years for a Lyme test if I have it - however I am worried it will come back negative, as so many tests have, and I'll be searching for answers again, or maybe not, kinda tired of this quest and being a lab rat). I had a LOW CD57 a couple of weeks ago so Doc suggested IGenex to confirm or not confirm LD (as well as can be confirmed via testing).

 

[vitamink]

roxie60, that's great that you had the igenex test done. did you run the coinfections panel too? looking forward to hearing your results...

 

[roxie60]

roxie60, that's great that you had the igenex test done. did you run the coinfections panel too? looking forward to hearing your results...

@vitamink No co-infections test, that was another $800 and I wanted to see if anything came back on the $500 test first. If I have it I have no real idea where I got it, I have been to many states and in many did outdoors activity (usually hiking in parks, etc). I've learned the last couple of weeks I might need a Bart test but I dont think I have Babesia. It seems these labs dont let you just test for a particular co-infection, they are grouped together.

With all those positives, were you dx with Lyme and if so did you get treatment? Was it helpful?

 

[roxie60]

@vitamink I see what you mean now by the 10 bands (IgG), just saw this in an article about Lyme testing by Carl Brenner, it's a bit dated but does explain stuff .....it's a bit dated (1999) but trying to learn all I can in case my CD57 is suppoerted by the IGenex results. What a brain.....I cant even remember four words later in the same sentence I already said 'its a bit dated' good grief, and yet neuropsych said nothing wrong with my brain except all my symptoms are made up in my head.

http://www.lymenet.de/labtests/brenner.htm

The CDC criteria for a positive WB are as follows:

• For IgM, 2 of the following three bands: OspC (22-25), 39 and 41.
• For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.
  
  

 

[vamah]

@vitamink I see what you mean now by the 10 bands (IgG), just saw this in an article about Lyme testing by Carl Brenner, it's a bit dated but does explain stuff .....it's a bit dated (1999) but trying to learn all I can in case my CD57 is suppoerted by the IGenex results. What a brain.....I cant even remember four words later in the same sentence I already said 'its a bit dated' good grief, and yet neuropsych said nothing wrong with my brain except all my symptoms are made up in my head.

http://www.lymenet.de/labtests/brenner.htm

The CDC criteria for a positive WB are as follows:

• For IgM, 2 of the following three bands: OspC (22-25), 39 and 41.
• For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.
  

Thanks for posting this article. It is really informative, although not terribly reassuring to me personally as I am trying to interpret the results of my igenex test.

 

[roxie60]

@vamah I will be doig the same next week cause I'm sure my doctor will not know how to interpret unless she has been doing inet research.

I'm not a doctor so my interpretation of all I have read the past couple of weeks is if any of the bands come back with a + (and some also count the INDs) then supposedly one has Lyme. Even if the antibody tests say NEGATIVE. Is that how you interpret what you have read so far?

I think I remember seeing your results (but I have looked at so many so might have been smeone elses) did you post you results?

 

[vamah]

@vamah I will be doig the same next week cause I'm sure my doctor will not know how to interpret unless she has been doing inet research.

I'm not a doctor so my interpretation of all I have read the past couple of weeks is if any of the bands come back with a + (and some also count the INDs) then supposedly one has Lyme. Even if the antibody tests say NEGATIVE. Is that how you interpret what you have read so far?

I think I remember seeing your results (but I have looked at so many so might have been smeone elses) did you post you results?

I posted my results somewhere. I had one positive and one ind both on igm and igg (don't have the number bands to hand right now.) I do know that there are some bands that can cross react with other bacteria. My doctor's take was that my result was pretty negative, but lyme is a good one for hiding. I am considering doing and antibiotic challeneg test. There was info on that on one of the lyme discussions.

 

[vitamink]

@vitamink No co-infections test, that was another $800 and I wanted to see if anything came back on the $500 test first. If I have it I have no real idea where I got it, I have been to many states and in many did outdoors activity (usually hiking in parks, etc). I've learned the last couple of weeks I might need a Bart test but I dont think I have Babesia. It seems these labs dont let you just test for a particular co-infection, they are grouped together.

With all those positives, were you dx with Lyme and if so did you get treatment? Was it helpful?

roxie60, just so you know, it's possible to get separate tests for bartonella and babesia from igenex. i had a babesia fish test done and several months later a bartonella henselae antibodies test.

yes i was ultimately diagnosed with lyme, there's really no doubt about it now. i also likely have bartonella but that hasn't been proven. i made a lot of progress with antibiotics, but i had to stop after an allergic reaction and just recently restarted. i have some good days but for the past few days have been feeling pretty horrible. i don't even really have fatigue anymore, just a variety of neurological symptoms, encephalopathy, cognitive and psychiatric 'disturbances', etc. hopefully this combination of minocycline and rifampin that i'm on will help.. if not, i might have to go back on iv antibiotics.. time will tell.

have you had a brain spect scan done?

k

 

[roxie60]

@vitamink I did not know they allowed separate tests, thx!. I'm thinking low chance of babesia but greater chance of bartonella just based on places I have visited. Gotta get the first results beofre spend anymore money and see if they reflect what the CD57 seems to indicate.

I will be relieved to finally get n answer if I do have Lyme but also fearful of antibiotics cause I have hd bad reactions in the past

 

[roxie60]

No SPECT scn, neuro talked about it but I never went back to him. Had MRI and he said my results indicated 'white spots' but he said they were due to my migrains (which I thought was odd cause I only get migrains 4-5 times a year). EEG (?) was fine and that was at a time I was having more what I will call more 'brain sensations', like low electrical current. I just dont have any patience with doctors anymore that do not share my sense of urgency to figuring out what is wrong. They want to do a test then see you in 3 months, I've had enough of that, about 5 years of intensly wishing they all had a greater sense of urgency because I knew I was declining each year. I feel I am worse and worry about not recoverying becuase this has drug out so long.

This is an exxample, if I do have Lyme and I have asked about that for at least 5 years then they all missed diagnosing me. That is so frustrating. I really dont want to see anymore doctors, most of the time they want me on med or supplements that make me fel worse. But I need to try and keep disability as long as I can (I havent got first check yet and they are already wanting to take it back, that is my inpression since they are only approving it month by month).

 

[roxie60]

@vitamink sorry you have not been feeling so well. I seem to feel slightly better in the evenings lately but then cant go to sleep at normal time. None of these symps make sense or how / when they impact me. They come and go , no way to plan. not looking forward to Endo visit since for now thyroid is basis for current disability and i wonder if my labs look better do they think I'm instantly well and remove disability income, I just dot know what to expect so I need to have more faith.