Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I have spent the month of June going to a bunch of doctors... I started going down hill in February. Lots of aches in a lot of places... And very high SED rate. So my dr and I decided to just make sure we weren't overlooking anything, and to just hear what a rheumatologist would say. I was actually very open to hearing how I would be seen through an auto immune perspective since both sisters have lupus and my dad had an unnamed auto immune disease.
Well... First this dr. Complained that my pcp was not in the system, and couldn't see my labs...Then he later complained that her office closes at 2 and she blames it on Obama care. Wow. Very unprofessional of him don't talk think?
Then he asked me about my Lyme treatment. I told him I treated for 18 months on multiple ABX with a Lyme specialist ... He said " well obviously not main stream medicine"
I could just see his mind click off. After that he told me i do not have any sort of autoimmune, (other than my crohn's, which was in the system so obviously true) but he confirmed my fibromyalgia... And suggested I up my Cymbalta.
he said "regardless of the belief of chronic Lyme... Yada yada"
I asked..."Dr. My sister had great success with plaquinil, would it be worth a try?" " No, because I don't think it would work in your case... No evidence it works on crohns. (btw, I am not having any crohns symptoms right now) then he says "Although dr. Steere does have some success with post Lyme patients using plaquinil or methotrexate... Cause he views post Lyme as autoimmune"
Fibromyalgia... All in your head... Lose some weight....
I just glazed... This is why I have avoided specialists...
And they wonder why we seek out info online and through non main stream avenues... Ok dr. It's all in my head... Maybe that will make my pain and inflammation go away!
Posts: 1728 | From USA | Registered: May 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Been there, done that. Keep coming back here for support and truth
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I hate that. GGGGGrrrrrrrrrrr
he is a dumb dr. don't ever go back.
there are good onsse. keep trying
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, like neurologists, rheumatologists are deeply steeped in the IDSA realm & the pharmaceutical approach to mask symptoms for life rather than seek out and correct (when possible) underlying causes of just about any symptom for any diagnosis.
Other specialists such as immunologists also really failed me, big time. They do not provide the kinds of exploration and answers that we tend to think. Found that out the wrong way, for sure.
I don't see why I'd ever want to see a typical doctor or typical specialist again, ever, for any reason. "Typical" just does not measure up.
Regarding stealth infections, I must applaud those LL doctors - MDs and NDs - who have gone many extra miles to learn more. When we need other kinds of doctors in certain areas, it's the LL doctors who are most likely to know who just might be a good fit where some puzzle needs a good mind, beyond the typical approach. -
[ 06-21-2015, 05:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you are looking for a doctor who better understands avenues for immune support, a LL ND (naturopathic doctor) would be a much better fit. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My specialists are all very good. I'm happy with them .. but they have nothing to do with Lyme and thankfully don't have to help me in that realm.
My "rheumatologist" is useless even though I have a clear diagnosis of Sjogren's. Oh well. I gave up on seeing her several years ago already.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
mainstream/ insurance mandated doctors will give you crack cocaine before they give you antibiotics.
I can really go off on a rant here, but I'll refrain and say
Kudz I am so sorry you aren't feeling good. I wish I had a constructive suggestion :-/
On one hand, the benefit of trying the main stream insurance route (and I did with my daughter, went to the 'best' of various offered resources in closest metro area)
is now you know you tried. You can have the part/ doubt reassured that you did indeed explore to your best efforts that avenue.
Hang in there friend. You are a smart, kind, talented lady. Sending good thoughts--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Isn't it something? My opinion is, we don't have to take this anymore. I tell them, "Actually, that's not the case," and I start to discuss the science. We have the basic information now about what's going on.
Methinks you won't get any help unless your doc is Lyme-literate.
Posts: 13116 | From San Francisco | Registered: May 2006
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
thanks for all the support guys. I am thinking of checking out a new llnd. There is one near me, who is reccommended. it's just really hard to commit to go down that rabbit hole again. Cause, I know how I bad I may feel... I know there is a lot of experimentation... and funds are tight right now.
but I didn't go the rheumatologist route because of insurance... I have seen remarkable results with my sisters and I really wanted to know what he would say. But I might as well have had a scarlet L painted on my chest.
but one doctor i went through over the month-- had answers... i was having intense pain in around my right ear/throat/neck. first I thought it was either a tooth or clenching. checked out fine with my dentist. so went to a new ENT... who discovered polyps... and a sinus infection in my head. he upped my nasal spray and the pain went away... he wants to do surgery to remove the polyps . I need to think about that... But could help my migraines, sleep apnea, etc... I am just so suprised not one until now, has checked me for polyps... one polyp has eaten away at part of the bone....Yikes.
But this guy also suggested the new sublingal immunotherapy. I was never able to build up to allergy shots as a kid, and then again as an adult, due to excessive swelling at the injection site (one time my arm swelled to the size of a football) but this guys says that the drops are just as effective and less reactive so you can build up. But of course time will tell... ( and the drops are not covered by insurance, of course)
I have often wondered if my severe allergies were a door that all this other stuff got in. certainly, if i could lower my overall inflammation load by lowering my reaction to allergens it may help.
In the mean time, my month of doctors is nearly over... I have no suggestions for my flairs of inflammation. but much of my pain has subsided on it's own. I see my PCP this week, and will go over everything with her.
Posts: 1728 | From USA | Registered: May 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Kudz did you ever try LDN?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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