need some advice here, please

ok--just got the standard, western blot, etc, back from my Dr, and he said it was "indicative of lyme, but not conclusive." The chances that i have lyme are VERY high. i know i was bitten at least a couple of times, and probably more times that i was unaware of. This happened almost 20 yrs ago, and i've gotten increasingly sick since then. I've spent a small fortune (like a lot of you, i'm sure) on naturopaths, dr., supplements, diagnostic testing, etc., and now, because i haven't been able to work for the last 2 years, i'm broke. i can't afford to spend another $2000 going to igenex to get further testing. especially when i'm reading that it may not even be completely accurate/conclusive. i'm thinking, well, maybe i should just go to Dr. Jernigan, and spend that $2K on treatment. or maybe i should just read all the books again and try to treat myself. that actually may be the only option i have at this point.

The dr that did the preliminary testing referred me to frye labs here in scottsdale. HOWEVER, i've not heard good things about him from former patients, AND, none of the testing he does would be covered by my insurance. so, again, not really an option, since i can't afford to pay for that.

any ideas/suggestions?

thanks!

Susan

I appreciate your response, but i did get he western blot test done--my insurance paid for that. It came back as "indicative" of lyme, but not conclusive.

I haven't been able to find any "lyme literate" dr's in AZ who will accept insurance. and paying someone what would probably end up being 1000's of dollars for treatment is not a possibility for me.

I just ordered Buhner's latest book, and i'll take it from there. I'll continue also to look for a dr who may be able to help, who will take my insurance. paying out of pocket to a practicioner for "treatment" that may/may not end up working is not an option for me at this time.

So - you did get the Western Blot through Igenex?

If I were you I would do a test through Igenex, as they are the best.
Again, if funds are an issue...then go with the basic Lyme and get Western Blot - they test for more strains... and it is under $300 for that one.

And you need to find a LL doc as soon as you can.
I made the mistake of not seeing a LL doc months ago, and have regretted it ever since.

This forum is very supportive and also a resource for very useful information. Lots of knowledgeable experienced people to answer your questions.

Have you tried posting a new topic to see if someone knows of a LLMD in AZ that accepts insurance? Or are you confident you've exhausted all possibilities?

Hi.
It is true. AZ has either big clinics that are integrative and they charge a lot of money or NMD or HMD that are out of pocket.

Dr F is a good resource but not full picture. But does take insurance for his visits and will prescribe abx and give good advice.

You may be able to at least go to one of the clinics for more diagnosis and testing and do the intake which is usually covered as well as abx but the alternative treatments are not.

Its a hard state to get treatment but I am sure other doctors in ither states are either conventional or not and or integrative and the alternative therapies are not covered.

You can message me if you like. I'm in Scottsdale.
I find that home treatment is 80 percent of the battle and though a doctors support always needed for running labs and checking your liver and emergencies etc. Depending on your overall health concerns.

What is your insurance ?
I may have some ideas for you.

i have a policy with BCBS. they're really good at paying for labs, as long as the lab is in their network. I did schedule an appt with Dr. F a few months ago, but ended up cancelling it after 1) they told me that NONE of the testing that he does there at his lab would be covered by my insurance, and would cost between $1500-5000. Also, i read some VERY unflattering things about him posted by prior patients who basically (the gist of it, anyway) was that he was first and foremost, a businessman, then a researcher, and a distant third--a physician. I just felt like i was looking at paying a bunch of money to be part of his on-going research, and possibly not really getting what i needed. obviously, if i had unlimited funds, who cares, right? i'd pay him a bunch of money, and see what we came up with. But, that's just not an option for me right now. From what i've been able to glean from the rsch i've done so far, any adtl testing that needs to be done would not be covered by my insurance. at least, that's what i'm interpreting from what i've been told. maybe i'm wrong about that. also, thanks for the suggestion regarding the lyme support organization sites. not sure what those are, but i'll look for them. thanks so much for the feedback! i really appreciate it! I'm thinking that i just need to read those books on lyme that advocate treatment with diet, supps, and herbs, and see how far i can get with those, considering my financial situation right now.

The two organizations are
LEAP arizona. Tina Garcia
And
AzLDA Larry Levy

Just search those items and will take you to
The support sites

Also.
Not all tests by Fry are done through Fry labs
I don't agree that he is a businessman first
I do agree he is embedded in his research and that he focuses on that subject with his patients.
FYI
I have treated Lyme and co infections through him mostly and got them treated quite easily compared to the biofilm and protozoan issues which is the most difficult and last item for me

So I believe he is accurate in so many ways. Even when I have a doubt it's proven later to me yeah that's right and it's happening to me. It's not perfect but I would use him as a resource even if you go every few months.
Insurance would cover it and you don't have to do all the testing via his lab. Just tell him you can afford those and what are your options

Its worth a try.
He started researching to help patients
He is not on some money quest.
His office is very plain and he tried to get grants and find his work with what he can. I admire him a lot

But he is not a typical Lyme doctor per day
He believes that so many diseases are vector borne and treats overall not just Lyme. If I hadn't had my time with him getting diagnosis and tests and treatments I would not have known what to address. There are more and more labs testing for Lyme and co infections and you should ask him at least.
I don't know this info because I'm not testing or needing it anymore not for a long time.

I thought insurance pays for
Western blot and even IGenex ?

Babesia
Mycoplasma
Bartonella
Erlichia
?

love the light, it looks like there's actually a support group with az lda that meets the 3rd sat of each month in scottsdale. i'll probably try to get over there, and possibly get some more info there. that's terrific, that they have a f2f group that meets!

oh--ok--I'll do that. i wasn't seeing anything on tina's site where you could even do that, but i'll look again. both these sites have an amazing amount of info on them, so look like tremendous resources. obviously, will take some time to go thru all of it, but i really appreciate you letting me know about them!

I've had Lyme for over 20 years, diagnosed myself due to bizarre hearing symptoms. After 3 weeks of doxy, most of my symptoms of motor neuron disease, staggering gait, fatigue, cognitive problems, etc. were miraculously improved, and my hearing symptoms also got much better.

I've had the Igenex test which came back equivocal. My LLMD told me the longer you have LD, the less likely you are to test positive. Lyme is a CLINICAL diagnosis, and you, like myself, are experiencing classic clinical symptoms. My LLMD doesn't require a positive test to treat, and because he's an MD (a well as an integrative medicine doc), my insurance covers my treatment (Medicare Advantage plan).

I would suggest starting with a month of intensive detox (see the very first post on Lyme for some great tips), and then maybe at least duel therapy antibiotics perhaps combined with herbs. I worked for many years with people with HIV/AIDS, and it wasn't until combination therapy with at least 3 antibiotic treatments came out that people started surviving AIDS. My theory is it is the same with this very intelligent microorganism- the more combination therapies the better. But in order to tolerate them, you must continue to be diligent with detox.

If you can't find an LLMD in your area, read up as much as you can- look for high rated books on Amazon- Buhner, diet for LD, etc. (also recommended even if you do find one). I'm also going to get IV silver therapy from a VERY experienced practitioner (it can be dangerous unless that person knows exactly what they're doing).

I've become convinced that nobody knows exactly how to treat Lyme, I know people who have spent over $80,000 getting treated, without full success. It's probably different for everyone, and your own intuition and experience may be the best guide of all.

I also like meditation, and Deepak Chopra's guided meditations CD's called Perfect Health.