Topic: Canel rheumatologist or JUST GO for now 'til I get in with LLMD?
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posted
Timing issues here, and trying to figure out how to play this thing...
I sense that my very thorough rheumatologist who was SO struck by my multiple severely swollen joints and extreme myofascial pain last month is NOT Lyme-literate (None in this city) and may not even be Lyme-friendly. I had the EM rash decades ago and she knows that, but just says she'll discuss at next visit when I've asked via nurse about getting Western Blot and CD-57 so we can move on the Lyme tx. All my other LabCorp blood work came back negative (Lupus, Sjogren's, etc) My LYME is screaming anyone in the face with a functioning scientific mind.
I'm quite tight on funds, but thought it may be useful to have a local rheuematologist who could order blood work or write Rx as directed by a LLMD (which I haven't got yet, but hope to in the next month or two!). This doc is the one that dx my "Fibromyalgia" about 12 yrs ago, but then I used my PCP for continuing Rx for deeper sleep.
My PCP is the one who saw my EM rash but only gave me a week of Rx.
Opinions sought: Shall I try to see her one more time (this is the 1st follow-up after she spent 3 hrs with me last month & ordered blood work to figure out my "some sort of inflamatory arthritis" in addition to Fibro).
OR do the majority of those with more experience think it's a TOTAL waste of time and $$$?
I hope for some closed-door opportunity to have her in my Lyme camp. SO unlikely?
Are there a couple questions I could ask her office this afternoon, like "Will you use IGenx lab for my future tests for co-infections?" Or ask if she treats bacterial infections or just refers them out?
posted
Looking for another reason why you have the arthritis is not necessary - you had an EM rash - that means Lyme - I don't see a need to bloodtest for it.
One week of abx is nothing - she will not treat you for this. She is following IDSA watered-down guidelines which do not recognize or treat Lyme and co-infections.
You need to see an LLMD for Lyme treatment. They follow ILADS guidelines for treatment of chronic Lyme and co-infections. They can order any bloodtests and write rx's.
We all face this difficulty of dealing with other docs who are not Lyme-literate. Finding a friendly PCP is its own search - you could ask Lyme docs in the area if they can refer you to any that are willing to pronounce the L word.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Not only will she not treat for Lyme, most likely she will recommend immunosupressant drugs that will make the Lyme worse and you sicker
Posts: 130 | From Central NY | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No. No. No. Absolutely not, based on what you've said.
You " had the EM rash decades ago " & you have serious long-standing symptoms. You don't need a lyme test. You need to see a real ILADS-educated LLMD.
You've already asked many times for her to seriously consider this and she has refused.
If you can't see a LLMD, you'll have to do a ton of your own research and figure this out on your own. From the interchanges you've described, you've been told "no"
Now, just walk away.
I'm guessing you are a woman. Is this a woman thing? Always trying a million times after someone dumps us? I've bent over backward trying to make all sorts of relationships work. It took me forever to see that did not serve me.
I know of no man who put so much into trying to save any business or personal relationship. I wonder if it is easier for men to walk away from doctors as they seem to know best when to walk away in general with things are not working. As a woman, I must have missed the class on moving on.
And, that is not meant as a put-down to either gender. We're just wired differently and the peace-maker is more often female. I fit that profile and had to see that it was a lot about acceptance, too.
I stuck with many an ignorant or ineffective doctor because they were basically nice or maybe they'd soon "get it" - or I had no other choice. But then I learned that I always have a choice.
I will never pay someone whom I already know is ignorant in a certain matter again to dispense advice or care. Even with no doctor, I can do better than that on my own.
Please find a way to get a proper evaluation now. There are many different paths you can take for treatment but it's essential to know now what all is going on in regard to tick-borne infections. The EM rash is for lyme but you may also have other infections. You need a real expert.
This is not the world of dating where "maybe they will like me; maybe they will finally understand" - this is business and this is your life. It's serious business. If someone can't provide needed services, walk away.
The sooner we can learn to walk away, the better. Time's a wasting. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, you're raising an interesting question about how our genders respond - I too have tried to make it with the docs - went to the mat with them, so to speak, to no avail. And guys walk away more easily? yes or no?
But also, it's a big surprise to find out docs do not have our best interests in mind - trusting them is what we've all been taught to do - then to find out they are standing down on recognizing Lyme and co-infections, well, it just doesn't compute for a while.
The medical profession must return to its oath of do no harm and start standing up and doing the right thing, whether it's politically expedient or not. They too have a right to know what's going on - why was I, the patient, the first to have to tell them all what was going on?
Posts: 13171 | From San Francisco | Registered: May 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Moving to medical. A link is at the upper left of this thread that will take you to the new location.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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