posted
Hi everyone! I just wanted to ask you all...how did you convince your Dr. to treat you for Lyme's. I have all the "classic" symptoms of Lyme's but my Dr. smirks at me every time I mention it. Even though I have never noticed a tick bite, I have nabbed many crawling around in my hair and face. We have many a deer passing through our yard. I went from running 3 miles 6 days a week to not being able to stand in the shower some days...something is wrong. So far I have been tested or for Thyroid disorders,depression,Mono,sleep apnea (sp),diabetes etc with no results. I am waiting to hear about the Lyme's titer that I had last week. I was in the hospital for a severe migraine & stiff neck last week. I really wat to go on some antibiotics to see if I feel better but my Dr. is barking up the wrong tree I think. How can I convince him?? Help! Thanks J
Posts: 8 | From North Jersey | Registered: Sep 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Get a LLMD get treatment dont let it go on and on trying to get help from som PCP or other MD trying to convince them you have lyme all the while lyme keeps attacking.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
change to a llmd. It's not worth your time and frustration trying to convince someone who has not been taught about TBI.
We went thru this with my son. Even with a CDC positive from Quest( PCP claimed a false positive) the PCP and the ID he sent us to tried their best to make it anything but lyme- ADD, depression (the school ruled these out for us) and when allergies.
The llmd looked at my son's test results and wrote a script for abx.
Sad, but true
Oh! the really good news, he was accepted at college this week!!!!! Not bad for a kid who had to be home schooled in tenth grade. We just kept pouring the info in and didn't worry about test grades. Apparently the info stayed in and is surfacing now that he is well.
One happy and proud mama
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
Thanks for your responses! I don't think that I can afford a LLMD. My insurance has no coverage for out of network...see my delimma?? How about an infectious desease Dr? They are in my plan. Anyone?? Thanks!
Posts: 8 | From North Jersey | Registered: Sep 2006
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posted
You can't afford NOT to find someone who is knowledgable.
-------------------- Daisy Posts: 122 | From at the computer | Registered: Jul 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Infectious Disease docs are at the head of the list in pretending lyme is "easily treated" -- they are right now pushing for one-day treatment!!!
Here's an idea for a stop-gap measure. Call up IGeneX (see website by the same name.) Ask em to send you test kits for tests 188 & 189 - western blot for lyme, IgG and IgM. Tell your doctor, "Please humor me!" and have him sign off on the authorization sheet. Then get a local lab to draw the blood and send it to IGeneX in their FedEx envelope. It'll set you back about $180, but at least it tests ALL the bands and will be the best western blot there is. Now, they don't take insurance and you gotta pay up front, but insurance may reimburse you part or most of the cost.
In a couple of weeks, your doctor will get the results by fax. (Make sure he puts his fax number on the form.)
You should post your test results here for us to help you interpret if your doctor is clueless about them. Positives or even "indeterminates" on certain key bands are significant indicators of infections when in conjunction with symptoms and history.
You should download a copy of the ILADS Treatment Guidelines and ask to be treated accordingly.
If THAT doctor won't, find another who will. You'll be especially convincing if you have a positive test, though not everyone does -- you can be infected and still be seronegative.
You must also test for co-infections such as babesia, bartonella, etc. Once you determine which doc is going to treat you, don't neglect these.
You say you can't afford an LLMD and I hear you on that. However, in some respects, you can't afford NOT to have one, because if you do indeed have lyme, it will progress and bring you enormous misery which you would give anything to rid yourself of. So if extraordinary measures need to be taken, then do it.
It IS a shame mainstream doctors are such dullards that specialists have to be sought out for treatment, but for now that's pretty much the way things are unless you're very lucky.
Don't give up!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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quote:Originally posted by jpres: Thanks for your responses! I don't think that I can afford a LLMD. My insurance has no coverage for out of network...see my delimma?? How about an infectious desease Dr? They are in my plan. Anyone?? Thanks!
I agree...FORGET ABOUT infectious disease drs!! They are the worst. There are a FEW, but don't take chances and waste your money.
Get dr referrals here, over in Seeking a Doctor.
Yes, you have a dilemma, but there ARE LLMD's who accept medicare patients.
You need a test through Igenex, called the Western Blot. YOu MIGHT be able to convince your dr if that test comes back positive. But then, will he know how to treat you, since he's obviously clueless when it comes to Lyme?
you could print this out and give it to your dr [AFTER reading it!]
posted
My heart breaks every time I read something like this -- I went through the same run-around for almost 20 years, with just about every misdiagnosis in the book.
Do whatever you can to get to an LLMD! Ask friends and family for help, charge it on credit cards, whatever it takes.... If that is totally impossible, there are herbal protocols for lyme that do help a lot of people. I think that would certainly be better than NO treatment, by quite a margin.
I didn't know about lyme until recently, but if I had it all to do over, I'd scrap and save and beg and borrow to get to a LLMD as early as possible. This disease gets harder and harder to treat the longer you have it, and can steal away a great deal of the life you deserve to have.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Thanks for your help everyone!!
Posts: 8 | From North Jersey | Registered: Sep 2006
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tailz
Unregistered
posted
If you are thinking about seeing an Infectious Disease doctor, consider this...
I had my blood drawn by a Lyme Literate doctor out of the area. To humor myself, as I've become accustomed at screaming at doctors after 3 years of pure hell anyway, I decided to keep my appointment with ID, even though the blood was already on it's way to IGeneX from a LLMD.
I think I checked off 99 percent of the possible symptoms on the ID list with the exception of erectile dysfunction! Still, the ID doctor said to me, "Your symptoms are not consistent with Lyme. I see no reason to give you abx." One day later, my IGeneX results told a different story.
PLEASE see a LLMD. I agree with the others:
1) DON'T waste your time with a PCP or an ID or a specialist. Every day you wait is another day the Lyme can venture deeper into your tissue.
2) If you have to, CHARGE it. You can't afford NOT to be tested. Lyme isn't a head cold. It aged me 15 years in the last 3.
Please let us know how you are and that you got tested. Until you have that result in your hand, nobody will believe you. But if you have that result in your hand, somebody will believe you. Get better!
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