RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
I never want to inform other doctors about lyme diagnosis; however, I feel it's necessary to list abx. Therefore, they always ask what the meds are for.
How does one get around this?
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
I think it's important to discuss everything up front....If they roll their eyes or look dazed you know your in the wrong place!!
I wouldn't hide the fact that you are treating Lyme from anyone...it could hurt you if you don't disclose the truth!!
Lyme is not a secret!! But I understand what your going through!!
I'm proud of the knowledge I've learned from lyme...it saved me and my family! That's something to be Screamed from the Roof tops!! lol
Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009
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Depending on the situation, though, I might not disclose my abx. If I'm in the ER, I would. If I am at the doctor for something routine, I would want their opinion about my symptoms as though Lyme were not a part of it. I don't want to have the eye roll or the discussion, I just want my prescription or their opinion on my symptoms.
Then, if I get a prescription, I would run it by my LLMD to make sure it was ok.
Posts: 984 | From US | Registered: Dec 2007
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onbam
Unregistered
posted
I generally print out stuff from lymecryme.com and elenacook.org and take it to whatever doc I see.
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But ever since Randy Skyes is no longer involved with the Lymecryme.com website, I no longer pass along that site.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure not to disclose the name of your LLMD unless you have a good PCP who is on the same page. Several LLMDs have had their careers ended by some PCPs who did not understand the complexity of lyme, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I recently very recenttly starting seeing a therapist that takes my insurance and we were discussing lyme and health and that the symptoms of lyme are very close to the symptoms of anxiety.
He seemed to be very knowledgeable and understanding about lyme but at my last session he was writing stuff down and asking doctors names and we were talking about it. I am weary now and I dont know if I want to go back.
I hope it doesnt report something strange to my insurance company. I would watch out non Lyme believers but you do have to disclose meds your one etc. its tricky.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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lymeboy
Unregistered
posted
you don't have to sell out your LLMD. I don't think keeping lyme from a Dr. is a good idea at all. The problem is, they may want to give you steroids or some other med that could potentially hurt you... so the best thing to do is research, arm yourself with info and know what is bad for you. If the doc rolls his eyes, shrugs you off, or seems indifferent to your illness, then leave and don't go back.
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posted
Oh I didnt tell him any names I just kept it very vague. Thats my point though I think you should tell doctors what they need to know but protect your doctors information too.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Actually many I talk to don't know..One said surely if that were true(after telling him what was going on)-we all would know about it!!!
I said doc--if all of you knew about it-we would not need half of you, cos most of the ones they were now treating with steroids for just the symptoms, would be on antibiotics getting better.
Tell them---Don't make me have to say,"Told You". Find out for yourself the truth. Read.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I think it's best to tell. You never know when you are planting a seed that may actually grow.....
Posts: 2238 | From East Coast | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If we tell, we can risk the very livelihoods of so many. Believe me, any doctor who wants to learn more can do so. If they are not helping us out as it is, they are certainly not going to change their minds.
It's far too risky. LLMDs are being reported by the doctors who refuse to treat us. Parents are being accused of munchausen syndrome. Some parents have lost their rights to decide treatment for their children who have lyme.
We have to be very careful. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I've got a super dooper llmd so if there would be any concerns about Abx interactions, i can always run them by him.
i only tell a physician about all of my meds if it's absolutely necessary... like at the ER.
otherwise, it's kept between me and my llmd.
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Keebler, that's so scary to even think about. Ugggh. Can't a day go by without me thinking of something that scares the hell out of me? munchausen syndrome... thank god I have an positive lyme test... probably that doesn't even protect us.
I wanted to add that some doctors are viscious. They believe what they believe and if you try to contradict their beliefs, they spit fire. My LLMD is getting harassed by my the ID doc that examined my son. Not over my son's case... but another lyme adolescent... hopefully she doesn't go any further than the harassing phone calls to the doctor... but really! Somebody should put a tick on this ID doc and tell her it's all in HER HEAD!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I don't mention it. I've had too many negative responses, even downright hostility. You can do your own research and run the meds by your llmd if need be.
If they mention steroids, you can just say, 'I can't tolerate them;' which is a fact. We don't have to say why. They would never understand anyway.
We can't trust the majority of mainstream mds.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I too keep my mouth shut. I learned that lesson. My current PCP only gives me some non narcotic specific pain meds plus my depo. He knows about my Lyme DX because I asked his office to draw the blood for Igenex.
He is a whack job. When I get a new PCP I will not mention anything. When I go to the ER I always tell them I've been suffering from something unknown since Jan, they can't figure it out, but my body hates me.
My PCP now has my previous doctors name but that is because he wanted proof that I was seeting him, so my former LLMD wrote a letter stating how debilitating Lyme is and yada yada. Also he already knew his name, again be of the Igenex lab slip that Dr K told me to take with me.
No one will ever know the name of my current LLMD. I love her, she is amazing, and I don't know what I'd do if something happened to hear becauase I opened my big mouth.
I am smart enough to know not to take steroids. I say things like oh I really don't do well on those if it's at the ER and they are trying to give them to me and at my PCP's office when he tried to prescribe them? Said ok, filled it (because I swear they can tell, and now it's sitting in my closet.
I fill all my scripts at the same pharmacy so if there was an interaction they would pick it up, not them specifically but the computer picks them up. And if ever in doubt I would consult my LLMD. But all the while keeping my mouth shut.
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