Lyme Disease Support Group

Also, ID's have an encyclopedic knowledge of abx and how they work and keep current on them. My LLMD is great but her background is as an osteopath. I don't think she could recite off the top of her head the names of the new 4th generation cyclosporins, or even know what generation the one I'm taking is...or what the difference it.

From what I understand (and I very well could be wrong) is that ID drs follow the IDSA protocol and LLMDs the ILADS protocol (in general). Our insurance company only had IDs participating. I called all of them to ask which protocol they adhered to and how many Lyme patients they treat, and not one office would answer- said we needed an appointment. Also, I googled them, and none of their info mentioned anything about Lyme. So, we filed an appeal (which we were granted after the fact) This is something I wrote to someone else RE insurance- maybe you'll find it helpful and not have to reinvent the wheel- sorry so long...

"I have advice about your insurance, which worked for us. We paid for the IGenX test out of pocket. It was ordered by an out-of-network doctor, who suspected Lyme. It was positive.

We knew we needed someone who routinely saw Lyme patients, was a LLMD and followed ILADS protocol, not IDSA. Our insurance did not cover a LLMD, only Infectious Disease Specialists. Our doctor gave us two LLMD names she recommended.

Utilizing information I rounded up on the ILADS and CALDA website, and armed with the positive test I wrote a lengthy Letter of Appeal and demanded treatment by a LLMD (gave both referred names), who followed the ILADS protocol, NOT the IDSA, and since Blue Cross had none, we needed an out-of-network one. You must demand that the doctor reviewing the appeal be knowledgeable about both "avenues of treatment"- ILADS and IDSA protocols, and not employed by your insurance company."

Good luck!

Wow, what great advice and opinions y'all. I thank you so much!

Yea, The first ID Doc I saw told me that i had been on ABX to long and I would be just fine after a week. Wrong !!!!!!! very wrong !!! within the next 4 weeks after ID Doc. I was crawing on hands and knees from bed to couch to bed and scalwing in pain.Thank God I got to a Lyme speacialist when I did. , David

I'm sorry David. I know (sort of) what you went though. I don't have it so bad. My hubby collasped in the shower and couldn't get up. Couldn't walk until he was shot up with steroids (not what you want with Lyme) and put on prednisone. It was so scary. I'd just buried my father, who was in a wheel chair with Parkinson's and then my virile, strong husband was incapacitated for no known reason? BUT, he is 95% better now, compared to that awful period in our lives, and we are both on our way to beating this thing and getting back to a normal life. You will, too.

I wasn't saying ID's are good Lyme doctors. I guess I was kinda saying the opposite - good Lyme docs aren't always ID experts.

To respond to LittleButterfly (#12):

You shouldn't expect to be able to google a Dr. and get a hit on "lyme" any more than you should be able to get a hit on "hemorrhoids". They're not THAT specialized ;-)

I don't believe different kinds of doctors follow different kinds of "protocols"! That would be silly. I do believe that they may tend to look at disease from the perspective of their training and that's not always good (like the infamous Dr. Allen Steere, the rheumatologist who REALLY wanted Lyme to be a virus).

As for insurance companies, they don't care who the doctor is when it comes to what treatment(s) they will cover. For instance, I'm covered by Aetna. What they will and will not treat regarding Lyme is laid out at http://www.aetna.com/cpb/medical/d...
. Note it doesn't say anything about the doctor. That's a separate thing that is determined by what plan you belong to, whether you can go "out of network", need pre-certification, etc.

I just saw "Under Our Skin" and read "Beating Lyme" and "Cure Unknown" so I'm aware of the politics. But I was diagnosed by a rheumatologist so I try to keep an open mind.

Yep littlebutterfly that sounds jus like it. The ins.ID blew me off and my primary Doc.put me on the prednisone and a opana er ( opyiod ) for pain management. I was scared of the chemical dependenacy and told the dr. I was'nt gonna take that stuff any more and he got me off of it but I'm still concerned with with my pain management but look forward to a pain free day and comming off all the meds. And the Ins. Companies act by me as if I want to be here.Thank God for ILADS they are my only support in workcomp case.I look forward to the IDA's & CDC's retraction of 4wk protocol and that long term is harmful. July 30th fair board meeting.Because the ID Dr.'s are just going by ther assoc.protocol developed by a panel bought by the Ins.co's. I think the advocate and surgen genarial has proven it. And no doubt the ID Dr.'s know lyme all to well it just depends the one seen. The ? is. does he care about the patient or how much the Insurance co. is going to pay him to take care of someone with Lyme.?

I'm just offering what we did, in case it was helpful- I don't mean to imply that it is a universal experience.

In some cases, doctors are indeed so specialized with regard to Lyme that a google search ( "Lyme + name") WILL turn up results. For instance, I found numerous references to Lyme when I googled Raphael Stricker, one of our doctors. Also, many doctors' websites generally mention specializations, so that is a clue, at least. That is the case of our other doctor, nearer to us, whose practice exclusively deals with Lyme. But still, these are just clues. However, I'd perfer an educated guess, rather than a shot in the dark.

My husband was sent to one of the very top rheumatologists in the country at UCSF because local doctors were baffled. Even he did not discover Lyme- I would hope that may be different today, but I don't know. After ruling out everything under the sun (including Lyme, because the ELIHA test was negative) the UCSF doctor settled on a working diagnosis of Polymyalgia Rheumatica. Later (after being prescribed 60 mg of prednisone to function), he took the Western Blot and was positive. We will never know what he experienced, but we are convinced that Lyme was the main culprit.

Good thing is, after undergoing treatment by our LLMDs, he is honestly, clearly, on the road to recovery. Me, too.

There is a treatment plan recommended by the CDC, which is recommended by IDSA, and many doctors follow these recommendations. They recommend first administering the ELISHA test, and if positive, follow up with a Western Blot to confirm. At least, this is my understanding, but I’m not a doctor. So, this is what the UCSF doctor did. Unfortunately, we had no idea the ELISHA test was inaccurate with many false negatives.

After a couple very difficult years, and discovering he had Lyme, we wanted a doctor who specialized in Lyme treatment, so that is what we sought out. None of the doctors in our Blue Cross network were a member of ILADS, and after research, we felt this was important. Some ID doctors are members of ILADS, but none near us. So we argued to Blue Cross that my husband was entitled to his choice of “avenue of treatment”, much as someone would if they had prostate cancer- various choices, various avenues of treatment. CALDA and ILADS websites were very helpful with regard to this. There are distinct treatment plans. One day after receiving our appeal letter, we were granted an out-of-network doctor, so something obviously worked.

In retrospect, I now feel that that paying out-of-pocket for an out-of-network doctor is well worth the cost, if you believe the doctor is good. Everyone's insurance is different. Our insurance has covered the costs of all tests and prescriptions that the out-of-network doctors ordered, and this, by far, was the biggest expense. My effort spent dealing with the appeal was hardly worth the trouble.

Yeh , To be honest, I'm not so sure I know what I'm talking about most of the time. Most of my feelings come from thinking of how the first MD diagnosed me with lyme, and gave me 4wk's of strong doxy. then practicaly acused me of faking. Just before the first the first labcorp test came back, ( 3 wks after first visit. RMS Fever). Then released me with a diagnoses of anxity disorder. Between this MD and the ID doc. They messed up my workcomp. So now I have no income, no insurance,and to sick to work . With a very costly Lyme Dr. and meds. So please forgive me if I sound Bitter. In spite of it all this, Life is better broke with good Dr. . It's still rough sometimes, But do feel like I'm on right road to recovery and beginning to feel that I will 100% recover in due time. I love to hear the success stories. Overall, to have lyme now is better than Years ago.( workcomp mediation begins July 20th wish me luck) LOL David

I owe LB an apology, I was up too late last night and I must have been feeling grumpy or apprehensive about today's LLMD appt.
When I read your new posting I thought, well, of course that's completely correct, and then I realized you were just re-stating what you had said before only with more info! I am very sorry for bouncing off the walls at your expense!

I tend to be rather cynical while at the same time I desperately want to believe in doctors and medicine. I need to be more humble and openly curious like Matty. I will try to do better.