Ispot Lyme Test Question

[badhbt]

Has anyone heard anything about the ISPOT lyme test by Neuroscience? It is suppose to be 84% correct, and 94% in NOT getting false positives.

Thank you,

[Electra]

I haven't heard of this test, but I do have Lyme. It seems similar in price to Igenex, which is where I got my testing from. Lyme is such a minefield for testing and treatment, the thing is there really in no good test for it. Most people swear by Igenex, and I like them too.

Unfourtanely a lot of people end up diagnosing themselves with Lyme after about 10 years of trying everything else, and being tested for everything else. I think that because Lyme is so hard to "catch" that a false positive isn't that frequent. Just my opinion as someone who has it.

Lyme is such a mess in the politics of medicine, there are tons of doctors that say the current test and treatment are just fine, and a smaller amount of docs that say it isn't, and a TON of confirmed Lyme patients that KNOW that the common knowledge out there about Lyme is incorrect and oversimplified.

I hope this is helpful! And hope you can get some peace of mind about it!

[badhbt]

Electr-- Thanks for the reply. I think all the hype has me a little hesitant to do the full on treatment even though I tested positive through IGenex. I think peace of mind would be good and I might just do that test if my LLMD thinks it is valuable.

Hope your treatment is going well and you are seeing results!

[Electra]

Ok great, sounds like you are well versed with the Lyme mess! Long term broad spectrum antibiotics worked for me, they made me alot better. I do still have relapsing POTS and severe nerve pain in my neck. I guess that's what I'm left with but maybe there is another cause. I'm just sick of going to docs to find out what else they can do for me, which usually is very little.

[Electra]

When you say full on treatment, do you mean IV antibiotics? or just orals or herbals? I have done all of them if you have questions.

[badhbt]

I am on oral antibiotics and herbs, I have seen improvements....but I think I am expecting pre-POTS results. I still wax and wane so much it is frustrating. I have a hard time digesting the fact that one day I am good, then the next day....blah. There is no predictable pattern. Sounds like you are the same? I guess like most people on this forum.

[Darlene]

electra, which tests did you order from IGeneX?

[Darlene]

oh, and how much was it?

[Electra]

Northern darlene - I have seen 3 lyme docs and they all say that you need a western blot (IgG and IgM Western Blot) from Igenex. You can do a bunch of other tests, but if you don't have al ot of cash, this is the only one you really need. A few years ago it cost around $200, and you have to have a physician that will sign off on it. The report is sent to the doc, not to you, and you have to pay in advance. I would ask your LLMD or perhaps ask an understanding doc that you have, not every doc will be into ordering this.

[Electra]

badhbt- oh were to begin! My life has changed so much in the past 5 years since I was diagnosed. I've spent a fortune and seen so many docs. I am way better but still POTSY and in pain. I have a hard time accepting it and keep hope alive that I can be who I was, but try to see the positive of what's happened and how I have become a better person (emotionally) because of it. That's the only way I can deal with the frustration.

I hear of some people that kick Lyme totally and can return to life as before, and some who get better 80-90%. I'm in the later group.

I would really like to try IVIG, but it's tricky getting a doc to do that because of the expense.

Still searching for the "new me", I guess it takes levels of acceptance, but I'm still looking for ways to medically get as well as I can.

[LMG]

Electra,

Did you find you had to do IV abx to get some improvement? Or was it incremental with different therapies?

I have severe neck pain and headaches that are cyclical and my doc thinks it is Lyme. I have the Igenex test kits in the car, need to go to the lab, but like everyone else...I am sick of doctors and tests.

I sometimes feel better on a day or two of Zithromax and then get dramatically worse which I guess could be herx.

Like to hear more of your experience and yours too BadHbt.

Thanks

[badhbt]

I am sick of tests and Doctors, sometimes feel like throwing my hands up and saying this is as good as it gets. I guess if I didn't know what normal felt like I would give up. Ironically this has been good for me too Electra, emotionally, spiritually, etc.

LMG I am newly diagnosed with a positive IGENEX test. I had a negative western blot through my Doctor. I guess this is normal for a lot of people because the Western Blot tests for antibodies for Lyme. If you are immune suppressed you are not making antibodies.

I have been on antibiotics for 2 weeks, and a bunch of supplements. I finshed up a month of Nystatin and another fungal med....I can't remember the name.

The one symptom that has almost cleared completely is my visual disturbances. Since August 2012 my vision has been distorted. That is one symptom that I don't think can be explained with just a POTS diagnosis. My vision was distorted 24/7 whether I laid down or not. I have had improvement of the number of good days, but I still have my bad days.

I think I am going to do the ISPOT or repeat the western blot to see if I can get a postive. I think it would put my mind at ease.

[Darlene]

i did have an elisa and western blot done. the elisa was positive and the western blot was negative. but i hear you can have a negative western blot and still have lyme. just didn't know if there were other tests more reliable.

[Electra]

LMG- IV antibiotics didn't help me that much, but a variety of orals helped me a lot. Levaquin and Rifampin were the antibiotics that helped the most for me. But everyone is different, and working with a LLMD would be important if you decided to take them. If you have flares every 4 weeks or so, it could point to lyme.

I had / have bartonella, I never tested positive for it, but the treatment worked dramatically.

zithromax is usually used for Lyme or Babesia, and I've heard that POTS could be a symptom of both, if that helps at all.

I did about 2.5 years of antibiotic treatment and I am a lot better but still have some problems.

[Electra]

northern darlene - I would agree with you about having a negative western blot, but still having Lyme. The Igenex western blot is different than through Lab corp, or others because it shows which of the 10 bands you show sensitivity to, and the amount of sensitivity. A lyme doc can see your sensitivity and determine if you have it from this test, because you can be just below what the CDC considers positive.