$1135 for more Lyme's testing??

[EMilo]

Hi everyone,

I have had negative ELISA and Western Blot tests for Lyme disease. A new doctor has ordered a complete Lyme panel plus co-infections test from Igenex. It's going to cost $1135, which is obviously a hardship when I am out of work with no disability. But... it keeps nagging at me... any opinion on whether I should get the new test done?

Thanks!

 

[Esther12]

Sounds a bit dodgy to me, and not a good use of money.

There's no good evidence that the testing from Igenex is especially effective, there have been problems with poor testing in the past, and some doctors who use them seem to wrongly interpret negative results as positive.

Some of this stuff was discussed in this thread:

http://forums.phoenixrising.me/index.php?threads/lyme-testing.25260/

For people with limited funds, I think it's really hard to justify any sort of 'alternative' stuff.

Sorry your having to face an area of such conflicting advice, on top of having health problems and the hardship this brings. Best of luck with everything.

 

[Ema]

IgeneX is not a dodgy company selling dodgy tests.

The IgeneX testing is reliable and widely considered to be the gold standard. Unfortunately, no testing is perfect and Lyme remains a clinical diagnosis like many other conditions including ME/CFS. Further, Lyme testing by IgeneX is covered by Medicare which would never happen if they had not proven the testing to be reliable.

That said, my LLMD started off my testing by running the two Bb Western Blots (Test 188/189). These two tests cost less than $200. I believe (but please double check that this is still the procedure) that they save your blood so that your physician can order additional testing without a new blood draw should they wish to do so after receiving the results of the first testing.

If you are positive for Bb, it may not be necessary to test for coinfections as many of the same antibiotic cocktails also treat Bartonella and Babesia. Your experienced LLMD should be able to make an educated diagnosis based on your symptoms at that point and decide which antibiotics are most appropriate.

If you do not improve on the selected regimen, it would also be possible later to run the tests for co-infections etc. I don't believe there is any cost disadvantage to testing this way (outside of possibly a second draw fee).

 

[SickOfSickness]

I regretted doing Igenex instead of using the money for supplements. I didn't test for co-factors. My results were inconclusive. The better lyme docs would officially diagnose me because I have these results. I don't have energy and money for going to see them. I don't want to get on antibiotics, so I probably should not have bothered with the testing. When I did the test, I must have thought I would get on antibiotics.

 

[barbc56]

@ I am so sorry that you have not been feeling well.

However forking out this much money because it's not covered by insurance, IMHO, is a big red flag that there's something with the procedure that is not medically warranted.

I am not always on Big Insurance's side, however I find that sometimes they are a good source for putting things into context and often have valid reasons for procedures not to be covered..

Good luck and take care

 

[Ema]

@ I am so sorry that you have not been feeling well.

However forking out this much money because it's not covered by insurance, IMHO, is a big red flag that there's something with the procedure that is not medically warranted.

I am not always on Big Insurance's side, however I find that sometimes they are a good source for putting things into context and often have valid reasons for procedures not to be covered..

Good luck and take care

Actually insurance, including Medicare, does cover this testing. So there goes that argument too.

How do you know that the OP has insurance at this time?

 

[barbc56]

Good point. I don't know.

@EMilo, do you have insurance that would cover any of this? Are you seeing an LLMD or an Infectious disease specialist?

I didn't think insurance covers all the lyme tests at least those recommended by LLMDs, but that might be either the visit, treatment, the antibiotics, some or all of the above, that I was thinking of.

Where did you think my argument went? Hopefully someplace warm.

 

[Ema]

Good point. I don't know.

@EMilo, do you have insurance that would cover any of this? Are you seeing an LLMD or an Infectious disease specialist?

I didn't think insurance covers all the lyme tests at least those recommended by LLMDs, but that might be either the visit, treatment, the antibiotics, some or all of the above, that I was thinking of.

Where did you think my argument went? Hopefully someplace warm.

An LLMD actually IS an infectious disease specialist.

Many LLMDs cannot take insurance because the reimbursement rate does not allow for the in depth history and time necessary to make thoughtful, reasoned medical decisions.

Insurance companies exist for one reason only and that is to make money. Their policies are never developed with our health or well being as a primary goal. But this is not the thread to get into another debate on insurance reform. I was simply pointing out that using insurance reimbursement as a guide to quality medical care was naive at best. Especially considering that they do cover most testing and treatment for Lyme.

I'm sure that specious argument went somewhere very warm indeed.

 

[Sushi]

@EMilo

Medicare fully covered my Igenex testing for Borrelia and co-infections, and yes, I think they paid out about $1100.

If there is any suspicion that you have Lyme, you want to know whether you do in fact do have it, as Lyme is treatable and those who have it and treat it usually get much better.

Best,
Sushi

 

[barbc56]

I don't want to detract from the original post so suggest a new thread why llmds are not covered by insurance. While the issues around lyme have been discussed ad nauseum, I don't think the topic of insurance has, but I need to check.

Again to @EMilo , good luck whichever path you take.

 

[Ema]

I don't want to detract from the original post so suggest a new thread why llmds are not covered by insurance. While the issues around lyme have been discussed ad nauseum, I don't think the topic of insurance has, but I need to check.

Again to @EMilo , good luck whichever path you take.

Yes, please do start that new thread.

The choice not to participate with insurance is made by the doctors' preferences and refusals to be limited by what insurance has found it profitable to reimburse.

I think you'll find that many top doctors, not just LLMDs, have found that participating with insurance doesn't allow them to provide high quality care. Again, your criticisms, while directed unfairly at LLMDs, are actually to be found everywhere in current medical practice.

 

[August59]

ELISA with WB is CDC's recommendation, but is useless as far as I'm concerned. It missed it on 2 of my friends, but Igenex did not pick up one of them and the only way his was diagnosed was finally finding a LLMD and he did some type of provocative challenge and tested urine after 7 days. I have no doubt in my mind that he would have died soon if not from that test and placing of a shunt or pic line directly into his heart and pulsed him with different antibiotics for 6 weeks. That was 4 years ago and he holds down a full time job now, but he listened to his own body and has a very strict dietary routine that follows no other type that I have ever heard of, but it was developed due to his own journal that he kept.

He had his own land clearing business and went to clear this one particular lot one morning and that night was not feeling well and his wife found 3 ticks about 4 inches apart right up his spine. The CDC still says Lymes disease is not present in the southern and southeastern United States.

Idiots!

 

[Vordhosbn]

Don't know if this was covered in the other thread, but perhaps a therapeutic trial of antibiotics would be a cheaper alternative? It may only be conclusive of how you respond to antibiotics, but I understand that is the preferred treatment anyway. Some people apparently test positive with mainstream Lyme testing after beginning treatment or doing an antibiotics-provoked test.

 

[PDXhausted]

When you say your western blot was negative, what does that mean exactly? Did you have any bands show up?

I'm trying to navigate these waters myself at the moment. I'm in a similar boat as you, sick for nearly 5 years, and bedridden for the last 1.5, and declining rapidly the last couple months. My symptoms are different than yours but some similar.

I finally found a local naturopath who was willing to do a house call. She is a LLND. We had the intention of her drawing alot of blood to do all the various infectious and immune system tests (I've had all the "regular" stuff tested and ruled out over the years), but my autonomic nervous system is so screwed up she could only get a couple of mLs of blood before my vein spasmed out and I started crashing. Decided just to do the igenex western blot, and in the meantime she started me on a low dose of antibiotics to see how I'd respond.

Well, in the several weeks I've been on antibiotics, I've already seen improvements in my symptoms and just generally feel better. I haven't increased my function a whole lot yet, but just feeling better has given me alot of hope. My western blot results came back and I had 3 IgM bands positive, and 2 IgG bands positive. As far as i can tell, this simply means i have antibodies to certain bacterial proteins, and one of the bands i have is specific to Borrelia, so i must have been exposed at some point and am still making antibodies. I'm considered "negative" according to both Igenex and CDC for Lyme, but since it is a clinical diagnosis, I'm sure there are plenty of LLMDs that would say I have Lyme disease.

The one thing I'm sure of, is that antibiotics have measurably improved my symptoms, so I'm sure that i have some sort of bacterial infection (and I'm on amoxicillin, so i don't think it's just an immunomodulatory effect).

This is meant for your other thread, but I'll just post it here.... Another option besides travelling to Dr DeMeirleir, if you have a local doctor that is somewhat open-minded, is to do a Skype call with Dr. Enlander, which was what I originally intended to do. You can email Dr. Enlander's office and say you are interested in a Skype consultation, and they will send you a list of tests to have done. Your local doctor orders the blood work (and hopefully your insurance will cover alot of it-- some of it is Lyme coinfections). Then once you get your results, Dr Enlander will Skype with you and give you his suggestions and treatment recommendations, and he will consult with your local doctor.

But if you are really on a budget, I would talk to your doctor about at least trialing some antibiotics just to see if you see a difference. Knowing if you have co-infections can make a difference for treatment though, but I'm not positive you need to go through igenex for that... I think fry labs does them too? It might be worth researching further to see if there is a way to get insurance to cover it.

 

[JT1024]

Like Ema, I spent $200 on the IgM/IgG Lyme Western Blot testing at IGenex. The results, while not "CDC" positive, indicated I had definitely been exposed to Lyme and I had never been treated. I only had 4 bands when you need to have 5 to be CDC positive.

I then spent the additional money for co-infection testing and learned I had two co-infections as well. The physician that ordered the testing is a functional medicine specialist in the Greater Boston area. He recommended that I see an LLMD and he gave me contact info for the two he had worked with in the past. Neither accepts insurance. I had an appointment with one of them but my brother became very ill and died. Needless to say, I cancelled the appointment.

Since that time, I attended a Lyme Symposium at Massachusetts General Hospital. Through interaction from the physician who coordinated the event, I've now found a physician who actually takes insurance. I just learned yesterday that I've been accepted as a patient (I had to submit medical records for review). Appointments are very difficult to come buy and while my appointment, it is a long way off. I was told that I am on the waiting list for cancellations.

One physician had a horrific case of neuro-Lyme. She was treated and is now healthy and back to work.

 

[SickOfSickness]

I follow Dr. Jamie's blog and she was originally in support of the lyme docs and now thinks taking long term antibiotics is questionable (paraphrasing). That would be the clincher for me against taking them. I am not completely against them however.

 

[Starfive]

@PDXhausted , my story / history is very similar. Sick about 6 years, mostly in bed the last two. Have been on amoxicillin for about two and a half months and feel a little better. Also taking anti viral so can't tell what is helping what. Tested negative for Lyme years ago but have high antibody titres of most of the herpes virus. The Lyme literate health professional I saw thought I still may have Lyme even though the test was negative. It is a bit confusing as I am now thinking the LL medical community defaults to Lyme rather than focusing on other diagnosis such as ME. Maybe because there is a test and treatment for lyme.