posted
After years of doctor run around and deteriorating health we have discovered the possibility of Lymes and with spending the last three days on the computer doing research and making calls I am nearly positive it has been Lymes all along. Today we are seeing a local Doctor and I am wondering if anyone has advice on how to present this to him so he is willing to help us? My husband needs to get treatment since he is just getting worse and worse and our other doctor says to start steriods again! Thats when we started to look elsewhere, thank God for that, because as we have read steriods is not what he should be on!
Posts: 3 | From Minnesota | Registered: Jul 2007
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posted
I would start by just explaing the condition and symptoms. See what his response is and then mention the possibility of lyme. If he seems to doubt the need for looking into lyme as a possibility then you need to find a llmd (lyme literate medical doctor) in your area.
There are very few labs that will properly perform the labratory test and even then there is no certainty due do the unreliability of blood tests for lyme. In my opinion the best lab is called Igenex and they are in CA.
You can go to their site web page and check it out.
Do not take steroids if you think you might have lyme!!!
The sooner you get diagnosed the better, don't wait.
Btw, there are also co-infections that are transmitted by ticks along with the lyme disease and I believe that a large percentage of people contract them as well. Keep reading everything you can on this site.
Go to the newbie links and start reading, the more informed you are the easier it is to find your way to the right Dr and to know who isn't the right Dr. Good luck
Posts: 413 | From nj | Registered: Nov 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I would try to find an LLMD.
Even though lyme (notice there's no "s" on lyme ) is supposed to be a clinical diagnosis, there's hardly any doctors walking around who adhere to this.
Even if you should happen to get lucky and have a doc treat, it will likely end way before your hubby is better, and dosages are apt to be too small to do much good.
As Improver says -- most non-lyme literate doctors do not even know what coinfections are or what to do about them. They can be as bad or worse than lyme itself.
Contrary to what mainstream doctors believe, LLMD's do NOT diagnose everyone with lyme. In fact, they are pretty thorough in ruling out other disease processes.
Even if it means traveling a long distance, it's the key to getting better. Don't give up!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i wish you good luck with getting a doctor to admit to lyme.
i've had no luck whatsoever in getting four doctors, and one infec doc, to think about lyme.
it's a loosing battle unless you go to a really good llmd, wherever they are. you probably will have to travel unless you are fortunate to live near one.
good luck.........
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I wish you all the luck in the world, because it is definitely not easy to find an LLMD, but I am thinking that it is the only way...
At first, my PCP seemed very interested in helping me find out, because he had treated me for all my different symptoms from the beginning and knew I was not well...
I told him what I had found out and took him some information about Lyme and its symptoms and also took him a copy of the "guidelines for treatment" from, I believe it was the Canadian Lyme website or maybe the ILIADS website???
But either way, he still seemed interested in trying to get me diagnosed.. He then gave me the ELISA bloodtest, which of course came back negative..
Then I took him some info about Central Florida Research and their tests...
He told me that he would order the tests I needed and let me know when to come in...
My b/f had an appt.(for nonrelated problem) about 2 wks after I took him the info...so I went in with him and my PCP told me he was still waiting to hear..
On my b/f's next follow-up visit (2 wks later), I thought I would again go in with him and just check...
WRONG!!! They wouldn't allow me to go in with him.. That has never happened before...
I had been seeing this doctor for nearly 10 yrs and we know each other well... I could not believe it.. I was extremely hurt.
If your doctor is willing, I congratulate you, but be prepared once they find out what they are up against...
Good Luck and God Bless
Posts: 50 | From Port Crane, NY | Registered: Apr 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Well my suggestions are that you demand to be tested for Lyme. You demand a western blot IgG and IgM.
I had luck getting diagnosed but after that forget it and now I see a LLMD.
Make sure you get copies of the lab tests when they are available and post it here.
Dont waste your time with ELISA testing. You tell the doctor what you want.
Write it down and check the lab request form make sure that the western blot is on there. If it isnt walk back into the office and get it fixed.
Good Luck let us know how it goes-Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
Interesting post!! I would be very careful how I approach a doctor about Lyme disease. This past Saturday a doctor..duck...told me that I was "wierd", and if I had the Elisa and Western Blot test done in 2001, then the Lyme is all gone.
I have been fired by an ID duck and insulted by a Rheumie. I have also been diagnosed to have Lyme by Dr C in Missouri along with severe allergies. Here I am in KY with no knowledgeable doctor in Lyme and at my wits end.
Therefore, tred with your PCP carefully and see what he says first. Then if you are not satisfied, go with you gut feeling..seek out an LLMD.
Hugs, Perplexed Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
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bettyg
Unregistered
posted
reading this AFTER you went to dr today/was when i got on here tonight ok!
my pcp/primary care physician told me THEY have to use the ELISA TEST 1st; INSURANCE COMPANIES DEMAND THIS! then they can test western blot igm and igg IF POSITIVE; mine was negative, but I DEMANDED W.B. be done and SENT ONLY TO IGENEX, CALIF.
make sure IGENEX form is complete; check it over for correct FAX NO. TO SEND TO YOUR DR. & DRS. MAILING ADDRESS ; mine was lost in clinic somewhere and no one ever bothered to say I'M SORRY after 5 wks of waiting on pins/needles!
look over the detailed IGENEX info i have in the 60 pages newbie's links, etc. i sent you when you joined. i have mine in my word processor so i can continue adding/updating as necessary.
i use the FIND feature in MS word, i typed in IGENEX and it will stop every place it's shown ... you'll know when you get there to read the detailed info.
remember it's a CLINICAL diagnosis after the ENOUGH POSITIVES SHOW UP HOPING IT'S ENOUGH FOR "CDC" STATISTICS SO YOU ARE ADDED!
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posted
I had Western blot tests done; came back positive. Had an ELISA test ordered by a duck afterwards; came back negative. Don't ever do an ELISA -- they don't work. Get Western blots done through IGeneX lab in Palo Alto, CA.
Also, I understand that if you order an IFA test too, as a substitute screening test instead of the ELISA, if it and one of the two Western blot tests come back positive, then the CDC has to count your results.
Posts: 13171 | From San Francisco | Registered: May 2006
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) is supposed to be a clinical diagnosis, there's hardly any doctors walking around who adhere to this. 
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