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» LymeNet Flash » Questions and Discussion » Medical Questions » Apparently our lyme docs are quacks

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Author Topic: Apparently our lyme docs are quacks
lymenotlite
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I've gotten on medicare and it seems to me that that means you get the doctors that are the bottom of the barrel. I say that because of a doctor that I saw today and because of talking with a friend who has used medicare extensively.

With medicare, you must have a primary care physician refer you to a specialist. There is now a lyme doctor in my area and so I went to a primary care doc that my insurance company recommended to get him to refer me to the lyme doc.

I showed the guy my lyme test which has the 41 and 93 bands reactive. It was not an Igenex test because Quest decided to do the test although my lyme doc requested it be done by Igenex so some bands were not even checked.

The guy said that he did not believe that my test showed that I had lyme and that I might think that I had lyme but that the test did not show it. Also, that there are quack doctors that might decide that this test showed lyme. Clearly they must have brainwashed me into the whole lyme nightmare.

He further thinks that it's a mental issue. I told him that he was insulting me and I told him a lot more, barely managing not to call him names.

There is a lot more to it but it would take too much space. Let's just say, I held my ground with him and left, never to return.

I'm planning a different insurance strategy because if I get extremely ill again, I need better that bottom of the barrel.

(breaking up a paragraph for easier reading for many here)

[ 11-03-2016, 04:04 PM: Message edited by: Robin123 ]

Posts: 672 | From WA state | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
Keebler
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Sorry to hear you went through that. So many of us here, including myself, have been through that many times. So many times, myself, that I've just given up on ever getting a doctor again. But I live in a state that is much more lyme-hostile. At least in Washington state, some doctors really do understand.

Having no doctor is better than having one who is not properly educated in these matters that matter.

Your medical file will likely have notes from that doctor in it and that will make it harder to find any doctor in the system who will take you seriously / with respect.

Of course, when you find a doctor who can think for himself / herself, that may not matter and they will understand the context.

You might consider a rife machine if that will fit in your budget in any way. If we can't find doctors to treat, there are other ways we can take matters into our own hands.

While not near you, call the Bastyr University Naturopathic college CLINIC near Seattle and ask if they know of any MDs or NDs in your area that are either LL or at least open to the idea of lyme.

Good luck.
-

[ 10-23-2015, 03:46 AM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
It may be helpful to know some of the code words and methods here, just to be prepared for what your file may look like and how it may "precede" your arrival for any new doctor.

Again, though, I do hope that some doctors who are wiser will ignore past doctor's attitudes about patients who have previously been battered, blistered and banished - so they can start fresh. But they are rare and will take some searching to find. There is no point in ever doing a "cold call" for any new doctor, though.

Your local lyme support groups might have the best suggestions, even if just for a lyme "friendly" GP.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030921;p=0

Topic: "DIFFICULT PATIENT" label & HOW DOCTORS THINK & "code" terms
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Oh yes. I had a doctor years ago call my LLMD a quack. I held my ground too and he ended up not charging me for our little "discussion."

I will be on Medicare soon and that aspect does concern me. Thankfully, I have a very good PCP who will refer me anywhere I want to go. I have already checked on a few specialists and they do take Medicare, so I guess I'll be OK for the most part. It is really scary though!!

Keep plugging away and you will find help. A rife machine is a really good idea and so are herbs.

--------------------
--Lymetutu--
Opinions, not medical advice!

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TerryK
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If you get the original medicare policy you don't need a primary care doctor and you can choose to see any doctor that takes medicare. You also do not need a referral to go to a specialist unless the specialist requires it and most don't seem to. This explains it.
http://tinyurl.com/nlz3b6n

FYI - Many lyme docs do not accept medicare for some good reasons.

Next thing to know is that you can choose a supplemental drug policy and have coverage for most abx (except IV. It all depends on what is covered under the policy that you buy.

My LLMD did not accept medicare and yet my drug policy covered me for any drug that was covered under their policy that my LLMD ordered. They never asked what I was being treated for. I made great improvement with shots and they were covered.

I believe IV is covered under the original policy IF you get your IV from a covered facility. You cannot administer it at home and I'm not sure if your doctor has to be a medicare doctor.

Medicare has open enrollment right now so you have a short window in which you can change to the original policy if you want.

Terry

(breaking up a paragraph for easier reading for many here)

[ 11-03-2016, 04:06 PM: Message edited by: Robin123 ]

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Judie
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In my experience, you only need a referral on medicare if you signup for an HMO plan or you go to a big, medical center where everything is under one roof.

Independent docs who take medicare and have their own practice have given me no problem. I've gone to specialists without a referral.

Savvy docs just use a code other than Lyme, like "general bacterial infection." You CAN get coverage, but you need a doctor that will work with you not against you.

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MattH
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This is difficult to say the least! We are infected with a complex bacteria that changes its form, is hard to detect, and is considered not to exist by insurance companies and many allopathic doctors.

I recently was prescribed Alinia. My insurance company declined it. My cost at CVS is $1500 for a one month supply. Note that for me this drug needed to be compounded.

My doc gave me a Canadian Pharm to contact and the cost was about $160 for a one month supply. I am told I will only need a one month supply so that is expensive but better than $1500.

There was a secondary approach but I am tired of having to use alternate protocols because of my insurance.

Some of the savvy docs are also using Fibromyalgia codes to get around the insurance.

All the Best, MattH

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Lymetoo
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quote:
Originally posted by Judie:
[QB]

Independent docs who take medicare and have their own practice have given me no problem.

-
I thank God for my independent doctor!

--------------------
--Lymetutu--
Opinions, not medical advice!

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paleogal
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quote:
Originally posted by lymenotlite:
The guy said that he did not believe that my test showed that I had lyme and that I might think that I had lyme but that the test did not show it. Also, that there are quack doctors that might decide that this test showed lyme. Clearly they must have brainwashed me into the whole lyme nightmare.

This is what my primary care doctor did, and I have supposedly "good" insurance. I think many doctors are crappy. And insurance companies. The health care system in this country is totally broken.

Luckily, I've been pleased with my LLMD and her ability to listen thus far.

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lymenotlite
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I think this experience has really made me a lyme advocate. My friend who has had a lot of experience with medicare and its associated doctors has told me to shut up about lyme unless that is why I am there for the visit.

I'd planned on following her advice but I'm having a change of opinion.

People see that I am from WA state and assume that I am near Seattle with a lot of medical options but I live on the other side of the state and Seattle is a long drive that I don't want to take

so I need to make my small city with its single recently arrived lyme practitioner work for me.

Further, how many of us have been made to suffer and sometimes die due doctor rejection of the existence of lyme and/or ascribing it to mental imaginings?

Consequently, I will probably inform whatever medical provider I go to that I had or have lyme, not sure which at this point because babesia is the loud symptom. If they can't deal with it, I will make that their problem, not mine.

I can hardly express how furious I have been with this guy and I'm glad he called my doctors, who saved my life, quacks, because it made me doubly furious.

My main lyme doc was head of a cancer ward in at large city hospital, is connected with well-known doctors in the field as well as big name researchers. He has a large cutting edge clinic and a waiting list.

Whereas I got in the next day to see the local guy and I can only assume that he doesn't have a lot going for him. Who in their right mind would think I believe him over my highly competent and dedicated healer doc?

Further, since I have experienced the abuse, I want to stop it from occurring to others who do not have the time and lessons behind them that I do.

That being said, I have another good medical insurance option. The big reason I'm doing medicare is the they coerce you and punish you into getting it by using a 10% fee increase per year if you don't

and I'm concerned that I may need it in the future. So I'm not sweating too be if I have to switch.

Okay, I've gone on enough here.

(breaking this up for easier reading for many here)

[ 11-03-2016, 04:09 PM: Message edited by: Robin123 ]

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Moons
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Have hope. I am in NJ and have found an LLMD who takes Medicare. His name appears on two different LLMD lists.
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bluelyme
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On east coast lyme exists ...not here ..i just got a new pcp and he gave me neuro referall for muscle biopsy to maybe get ivig ...i am not sure its worth the pain and trouble my ok insurance maybor may not cover it ?

I have been using bartonella and toxoplasmosis and pdn dx to explain to them..he said it looks like muscular dysrophy and im likely screwed ...he ordered a cbc and said he did not need a follow up ...broken

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Blue

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Winter Park
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Too bad that doctor's manners suck. Yes, docotors are obviously intelligent if they can get through med school but can be condescending and dismissive. Maybe it upsets them if you take up more than 8 minutes or however long they consult with patients nowadays.

Hope you've found a good diet and something positive to build on until things turn for the better.

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nomoremuscles
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I don't think LLMDs are considered specialists. There is no specialized training, or advanced schooling, they need to complete to become an LLMD.

As far as I know, LLMD is not a distinction recognized by the medical establishment.

The only way I can see this being possible, is if the LLMD in question is a neurologist or ID doc, etc., as these docs are already considered specialists.

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TF
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Correct. Of course the medical profession does not recognize our lyme docs as specialists. Instead, you have to find out what kind of doctor the lyme doctor is officially according to the medical profession.

Is he an Internist, Family Medicine Doctor, etc. If so, these are gemerally not considered "specialists" by the insurance companies, so they don't require a referral.

When we say a doctor's practice is totally lyme disease, so he is a lyme specialist, that is true, but it is NOT recognized by the medical profession.

The Infectious Disease specialist is SUPPOSED to treat lyme. It just isn't happening in reality.

So, find out what the lyme doc's official medical specialty is. Hopefully, it is not rheumatology or some other recognized medical specialty and you can go to him without any referral.

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Robin123
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He doesn't sound like a Lyme doc. He didn't recognize band 93 as a specific Lyme antibody band and he put down other doctors who do. We call these doctors ducks, 'cause guess who's quacking?

In my experience, I've found some doctors who take Medicare to be very caring people who want to help people, as they won't get paid as much as from private insurance.

You may need to figure out who is a Lyme specialist and how to see them. Lyme patients have knowledge about educated Lyme practitioners.

Yes, it's a drag. Becoming an activist is not a bad idea...!

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TF
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Robin, she went to a new primary care doc to ask to be referred to a lyme specialist, and it was the primary care doc who didn't recognize band 93 and would not agree to send her to the lyme doc.

That is what I got out of the post anyway.

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Robin123
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I see - thanks, TF. Next question - are you sure you have to get a referral to see the Lyme doctor? I thought people on Medicare can often just go see the doctor they want to see - ?
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randibear
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I'm on medicare and I have to be referred. if I call they ask who my referring dr is and i've been told no.

our drs have told us they will continue to see us but are not taking anymore medicare patients.

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do not look back when the only course is forward

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TF
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randi, are you sure it is Medicare that is requiring this? I don't think so. It sounds to me like you have chosen an HMO. They are the ones who operate like that--needing a referral for everything.

There are different Medicare plans. You may have chosen the Medicare HMO.

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randibear
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nope I have medicare. I pay e ery three months. I have tricare asbackup. and some drs flat outdo.take medicare.

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do not look back when the only course is forward

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TF
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Tricare is an HMO and requires you go to their docs and get a referral for anyone else. And, they rarely will let you go outside of their HMO.
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randibear
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no, tricare prime is for military and military retirees. we have marine corps tricare supplement which is only available to marines and their families. this acts as a medicare backup plan.

as soon as you mention medicare, I've been told nope don't take it.

my dr says he personally knows of at least 15 drs who will not take medicare patients.

I have to be careful because if they don't take it, I pay 100 percent.

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do not look back when the only course is forward

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TF
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This is happening because Medicare reimbursement is so low that doctors lose money with every Medicare patient they take.

Most practices have to limit the number of Medicare patients they take so that they don't lose money.

Regarding Tricare, perhaps it is different in different places because my friends with Tricare must go to the doctors Tricare says and need a referral (I call it special permission) to go to anyone outside the plan.

So, if Tricare has ANYONE who is an eye doctor, for example, then you can never go to any other eye doctor without the referral, and Tricare will not give you a referral since they have an eye doctor in their plan. I call that an HMO. It means that the insurance is managing your care, not you.

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randibear
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I have medicare as primary and tricare as secondary. that's the difference. but I can't find drs who will take medicare. that's the problem.

i've lost my obgyn, dentist, gastro, neurologist, and lyme dr, and eye dr all because they won't take medicare.

thank god I had my colon surgery when I had bcbs. that bill was over 66 grand.

and now my husband has prostate cancer. we don't know what this will cost.

--------------------
do not look back when the only course is forward

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Christopher J
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Look I'll be honest, you can't use medicare to see most LLMDs. Heck you cant even use the employer gold plated insurance I have through work. You may not want to hear this but the only way for long term treatment with a long term LLMD is to pay out of pocket for your office visits. The insurance will cover your meds. Start to budget that out.
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randibear
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you're absolutely right chris. I have friends in their 70's who are still working. two have phd's and are afraid to retire because they're in a field where they have to have medicare. they live frugally too.

medicare and especially obamacare suck.

my llmd did not take any insurance and because of that insurance wouldnt pay for testing and in one instance did not pay for meds.

it's sad really.

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do not look back when the only course is forward

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lightfoot
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It has been said above....the HMO requires a referral. Traditional medicare does not, however a med supplement is crucial with it. Yes, this costs more than the HMO medicare.

Regardless, the name of the game is paying out of pocket for an LLMD who is good and knows what is going on...ILADS. It's a shame but that's what it boils down to.

--------------------
Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

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sammy
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If you are unhappy with traditional Medicare, now is the time to change to an Advantage plan like BCBS, AARP, United Health Care...

Be sure to choose a PPO and you will have freedom to see ANY doctor in any state. No referral needed. If you chose HMO, you will have to stick to a network and get referrals.

If your doc does not accept insurance, they will bill you first then you can seek reimbursement through your ins co.

You can also keep traditional Medicare and switch Supplemental plans and drug plans but neither will help with the above discussed doctor issue.

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