Topic: Canel rheumatologist or JUST GO for now 'til I get in with LLMD?
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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: 13116 | 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
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- 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: 13116 | From San Francisco | Registered: May 2006
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posted
Might as well save time, money and frustration. (no)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I know that everyone on Lymenet will tell you no don't waste your time. Based on what you have described they are probably right.
A rheumatologist saved my life so I am a bit biased. He tested me for Bart, Lyme and Strep plus many additional infections. He hit the jackpot as I was positive for many of them. He only tested me through lab corp. I did eventually find an LLMD but he is still part of my team. He is the brightest doctor I have ever met.
As my dermatologist says rheumatologist is just another word for incredidibly smart person. So if your rheumatologist is at all Lyme friendly, I would say keep them in the loop.
quote:Originally posted by Robin123: 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.
Thanks, Robin, et al. *Heavy sigh* Trusting too much, too long goes for my PCP more than anything. He's & his two partners saw my EM rash, knew it was Lyme, then prescribed just 1 wk abx. That was LONG ago, so I forgive him that in 1989, but he under-treated me the second time I contracted LBb, too (just 2 wks abx).
I had a couple short calls with rheumatologist's office this afternoon, then went and picked up a copy of letter she wrote to my PCP & ortho surgeon after her long, thorough exam last month. SO sad...
Okay, most of you guessed this kind of thing, but I'll share for the newbies like me who are still in shock about needing "The Lyme Underground RR" if we are to have any hope for a pain-free day or two:
- Her staff never heard of ILADS and they don't think rheumatologist is a member. - I had to spell "blot" when I asked if she'd order a CD-57 and/or new Western Blot, and THS, T3, T4 before follow-up. The answer was no. - In Dr.'s letter to the others, she writes I have fibro, myofascial cervicothoracic pain, "quite tight" and tender in many places, inflamed knees, hist of chronic yeast infections, dry mouth. Listed "Lyme disease 2x" under "Past Medical History." Has "History of Present Illness" begin with her dx of Fibro a decade later. Hah! I was sent to her while still in the horrible aftermath of my 2nd case of Lyme. Another *big sigh*
I was hoping to have a Lyme-friendly M.D. nearby who I could use with insurance to save $$$,$$$.
So, embrace bankruptcy, it'll be here soon, right?
I'll get in bed w/ a hot water bottle and think about all the Spring blooms. Flowers know to just keep up appearances regardless of what's goin on with all the tick, tick, ticks.
Somebody tell me which flowering shrub marks the path to the door of the competent LLMD in my state. Whisper, tho! It's The Lyme Underground RR...
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quote:Originally posted by Haley: A rheumatologist saved my life so I am a bit biased. He tested me for Bart, Lyme and Strep plus many additional infections. He hit the jackpot as I was positive for many of them... [snip]...he is still part of my team. He is the brightest doctor I have ever met. As my dermatologist says rheumatologist is just another word for incredidibly smart person.
Haley, you are so blessed.
I like my rheumatologist as a professional person and trust that's she's caring & intelligent, but she hasn't actually helped me. She kept me from having my bacterial infection(s) cured a decade ago.
My PCP and rheumatologist aren't even following the minimal guidelines from IDSA, much less keeping up with the latest tx for the Lyme spirochete and co-infections.
I feel that it is another loss to accept, that she and my PCP haven't helped me with my biggest health prob of all and in fact made things worse for me by delaying tx and thinking corticosteroids were fine for me after contracting LBb 2x (at least!). I've suffered a lot of losses the past 3 1/2 yrs. A LOT!
Ok, not gonna lose more sleep tonight.
Thank you all for talking me thru this again. Peace, Smile
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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- Haley, I'm glad you were so fortunate as to win the lotto in that regard. It is extremely rare that a rheumatologist is wise about lyme. I've seen nearly a dozen over the past 3 decades. Not one was a smart doctor about what destroyed my health. Not one. So, I'm glad to hear that there is at least one out there, somewhere.
I've also hear that, once in a while, there is a neurologist or an ID doctor who is far more educated than their peers. Let's hope in the coming years that they all decide to learn about lyme and other tick-borne infections as well as the range of chronic stealth infections and explore what can stop the damage.
We can't paint them all with the same brush. It is good to inquire as it'd be a great waste to miss a good doctor. But if they clearly refuse to engage in intelligent conversation or learn more about lyme - that speaks volumes. We should listen and hear their dismissal loud and clear, and then find smarter doctors elsewhere.
Remember to Smile,
Remember to ask at your local lyme support group for lyme-friendly doctors who can offer basic support without clobbering judgement. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
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Interesting about the gender issue. I'll leave any regular doc or LLMD who I feel doesn't have my best interests or genuine concern about achieving cure/remission as quickly as possible. No hesitation. I pay good money to them and expect real help. I can usually spot a dead end three streets beforehand. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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