posted
I was diagnosed by a LLMD the end of June. I'm establishing with a new Internal Med. and GI Dr. as I have moved. I'm nervous about telling them my diagnosis and treatment by a LLMD as this seems so controversial and I don't want to cause any problems for him. What reactions do you guys get? Liz
Posts: 383 | From Ar | Registered: May 2007
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Aniek
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Member # 5374
posted
I've had pretty good experience with other docs actually. Some of them will say something about me being on antibiotics a long time. I respond that it was undiagnosed for 17 years, so treatment is difficult. I left one doctor who kept trying to talk me out of the treatment.
I think it is important that any doctor treating you know your history and any medications you are on. If a doctor reacts poorly, I'd find a new doctor.
When I get the feeling a doctor is suspicious, I say that I understand there is controversy over the treatment of Lyme disease, that I have researched the issue and chosen to follow the long-term treatment protocol.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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CaliforniaLyme
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posted
Back when I was really sick if I got a bad feeling and felt like I need to protect my doc I would tell other docs I had
"Borreliosis and BAbesiosis."
and they would go, "Whaaaat?"
And I would say, "Tick borne diseases." and they would go, "Ah!" but would never recognize it as Lyme disease. SO I would be being honest.
Lyme disease has so many negative associations that just using the name often seems to trigger an emotional response from otherwise rational people...
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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But seriously, I think Sarah has the best idea. Tell them you have borreliosis. [learn how to pronounce it]
If you have other TBD's, add those on as well. Hold your ground if they try to give you garbage. Let them know you won't be able to work with them if they can't acknowledge your illnesses. They ARE doctors, after all.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i've found out that sometimes it's just better off not to mention lyme. i like my gastro but when i mentioned lyme, he freaked, told me one girl died of MS not lyme, and then lectured me on the lyme doctors.
and you certainly don't want to mention it in the ER ever. one ER doctor told me point blank that i had not better mention it to anyone else who came in.
so, sorry, i think it should not be mentioned. i realize it impacts the treatment of other doctors but when you mention lyme, most of the ducks just shut down.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
My LLMD is an internal medicine doctor and HE was the one to discover what was causing my GI issues ... the GI was clueless as to what my problem was.
I don't have a need for other docs, except maybe a gynecologist ... I would tell them what they need to know, nothing more.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
The most important thing to remember is you are dealing with an MD who is NOT Lyme literate. Do not expect an understanding response. I recently argued with a Nurse Practitioner over Fibro and the causes, he said "Lyme is not responsible" and was very upset that I told him it was responsible, backing my claims with studies done, he still didn't believe it.
I have one mainstream Md very "open" to Lyme and its treatment, admitting "we as doctor's don't know everything and allow the experts in their fielld to treat". Another mainstream Md was amazed I wasn't well in 2 weeks of antibiotics. I brought information from ILADS Basic Info. http://www.ilads.org/basic.html but she wasn't interested and questioned the CDC negative test and asked if I'd been back East, implying Lyme isn't in California. Ignorance.
You could simply mention you are in treatment with a Lyme "specialist" for Lyme Disease. If they ask anymore, explain it is a very complex disease you could not explain in one office visit that is rarely diagnosed correctly because the test devised by the CDC is not diagnostic and it woud be best if he/she contacted organizations meant for Md's without understanding, like ILADS or Turn the Corner Foundation (sites available online) for more information and treatment of this chronic,disabling disease...then move onto the next subject.
TerryK
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Member # 8552
posted
If you are seeing a doctor who seems hostile about your lyme treatment I would be very careful about mentioning the name of your LLMD. They may very well cause trouble for your LLMD. Besides, if they are hostile or non-supportive, they are not likely to contact your LLMD anyway so there is no need to give that information in that case.
I do not see doctors who are hostile about my lyme treatment. It's too stressful and I can't handle the negative attitude.
As far as what I tell my other doctors, I tell them anything they want to know because I trust them. I've been seeing all of them long before I started lyme treatment. They are all OK with it, especially since I've had some improvement since starting treatment.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymeladyinNY
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posted
When my first family practitioner in NY state kicked me out of his practice for having "pseudo-seizures" and refusing to see a psychologist, I didn't know what to do.
Then my sister's co-worker told her that she, too, had been kicked out of that same practice for some other reason. She then told my sister the new doctor she sees and recommended her to me.
I made the appointment to see this new doctor and the first thing I asked her was, "Do you believe in the existence of chronic Lyme disease?"
She answered, "Of course."
I then asked her if she would be willing to work with my LLMD for any needed tests or procedures and she said she had absolutely no problem with it.
Later during the exam, my new doctor confessed that she had been kicked out of the "good old boy" network of general practitioners in our area and had been forced to become a maverick.
She said the mainstream network in my area is very rigid and if a doctor has his/her own mind he or she becomes blacklisted.
She said she was very happy to be "on her own" and able to make clinical decisions based on her own judgments.
Was I ever glad I found her. I hardly ever go to her but she did prescribe a PICC line for me at my LLMD's request once.
I also had a bit of an issue with my son's pediatrician. At my son's last physical I told him my LLMD has him on antibiotics long-term. The pediatrician wasn't happy about it.
So, when I got home, I wrote a respectful letter detailing why my husband and I choose to use ILADS guidelines for our son, because we want to avoid him having the terrible problems of his mother.
I noticed last week that the letter IS in his medical record file and nothing else has been said about it.
Just thought I'd share my story.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Thanks everyone. I got some good suggestions. Liz
Posts: 383 | From Ar | Registered: May 2007
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tailz
Unregistered
posted
Don't you have to mention it in the ER?
Before I knew it was Lyme and thought it was just a systemic candida infection, an ER doc was about to give me steroid injections for an allergic food reaction, and I about crawled under the table and screamed bloody murder. Steroids are what got me into this mess.
I'm pretty comfortable mentioning it to everybody and their mother though anymore - if they give me a hard time and I start to sweat and feel the urge to curse - hey - they're the ones who let it get this bad, so call me crazy, and then just deal with it.
I'm not intimidated by doctors anymore (usually).
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quote:Originally posted by TerryK: If you are seeing a doctor who seems hostile about your lyme treatment I would be very careful about mentioning the name of your LLMD. They may very well cause trouble for your LLMD.
Ditto!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I have to agree with what TAILZ said I pretty much don't care what they feel about it or me at this point. As TAILZ said its their fault this got as bad as it did in the first place.
Also when RANDIBEAR mentioned her/his trouble in the ER I had a totally different experiance. I went to the ER in Jan 06 with terrible pains in my stomach area and had to have my gallbladder out. While I was there they asked about conditions I might have and I told them Lyme disease. Well in a very short time I was the object of much curiosity. Over a couple of hours I had two docs, three nurses, and a nurse practitioner come by and quiz me about how it came on, what the symptoms were, how it was being treated etc. They asked not becuase they thought I was nuts or didn't believe in Lyme but because as the two docs said they had never really encountered it and wanted to know more about what to look for. I was happy to help educate them.
Posts: 142 | From Florida | Registered: Oct 2005
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quote:Originally posted by TerryK: I've been seeing all of them long before I started lyme treatment. They are all OK with it, especially since I've had some improvement since starting treatment.
Terry
You are so fortunate. My gynecologist of 16 years was a total jerk about it.
I went in recently for a specific gyn problem, so I needed to tell him about the Lyme diagnosis. As I said, he has known me for 16 years and delivered three of my kids. During these years I was chronically ill and had difficult pregnancies due to fatigue, nausea, etc. more than "normal."
Anyway, first he told me that the testing is inaccurate. I said yes it was, but I had 8 positive bands, all the symptoms, and was responding to treatment, so that indicates I have the disease.
He then told me my doctor was likely to be a scam because I shouldn't have to travel to get treated, that anyone who only treats Lyme is suspicious ... umm, isn't a gynecologist a specialist, too?
He's right, I shouldn't have to travel, but the fact is, I do.
After our exchange about Lyme, he barely talked to me the rest of the time ... not his usual demeanor. He was going to prescribe doxycycline for my "problem" even though he had not clue what was causing it. He knew I was on abx, but didn't ask which. When I told him I had just gotten off doxy, he said he could prescribe Flagyl, but he thought Advil would do the trick.
Obviously, he thinks I'm a hypochondriac, and most likely has all along. If he were Lyme literate, he would have recognized this long ago.
So, I'm very hesitant to see a local doctor for anything now. It's great if you can find a doctor who is sympathetic. I wish I could.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TerryK
Frequent Contributor (5K+ posts)
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posted
sixgoofykids, I'm sorry to hear about the attitude of your gyn. It sounds like you presented him with enough information that he should at least be able to accept your treatment decision based on the fact that you are improving. Isn't that the bottom line when all is said and done?
Maybe it's not that important that your gyn be on board with your decision since he is not directly involved in your lyme treatment?
Don't let your experience with him keep you from looking for a supportive local doctor. There are good ones out there. More the exception than the rule unfortunately but they do exist.
I was trying to think if there was any particular criteria that I have used to pick my doctors and there is. If the doctor is not a good listener or does not treat me like a partner in decisions concerning my health, I get rid of them. I will not have an autocrat for a doctor.
In the end, I'M the one that will suffer the consequences of THEIR decision and therefore I"M the one that will make the ultimate decision, period, end of discussion. I do not have the energy to be in a constant power struggle with my doctor.
Early on in my illness I had some really bad experiences with doctors who insisted that they knew what was best for me and who made me very sick with medications that caused my condition to greatly worsen. I became so disabled with one medication that I literally could not stand up because it dumped my blood pressure to 60/40. The doctor had the nerve to tell me that he could not support my need to take time off work to recover but that he had a lot of other drugs that we could experiement with. It took me 3 months before I could be up enough to go back to work and because he refused to stand by me, I had to pay for this out of my own pocket. After a few more burns with other doctors, I make it a rule to cut my losses when I encounter a doctor who refuses to listen to my input/concerns.
I'm afraid I will soon be in the position of having to replace one of my doctors due to her health and I am dreading it. I know what a chore it is to find the rare one who listens and who respects the individucal patient but in the long run, it is so much easier.
Now that I'm on lyme treatment, that will be something that I will add to my info and discuss with any new doctor/care provider. If they are disrespectful towards my treatment decision or display hostility towards my LLMD, I'll not retain them as my doctor. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Terry, You and LymeToo made a really sharp comment, about not mentioning the llmd when you go in to a consult with another specialist. The suggestion was to just refer them to ILADS, which I thought was smart.
Unfortunately, on the intake forms, they ask for "previous dx within last 3 years (or so)", who the md was, etc. Or they ask what meds you are currently on, for what, treated by whom, etc. Same applies to ER situations.
So what do you put on the form to protect the llmd?
North.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
"Unfortunately, on the intake forms, they ask for "previous dx within last 3 years (or so)", who the md was, etc. Or they ask what meds you are currently on, for what, treated by whom, etc. Same applies to ER situations.
So what do you put on the form to protect the llmd?"
Good question!
I guess in the past, I HAVE divulged that info when necessary. I ran into problems one time with that.
Had an arguing match with the DUCK. I won!!
I HAVE told the ER I had Chronic Lyme and they actually didn't respond in a negative way....amazing.
Of course, it may be because my current PCP, who is well-respected at the hospital, has Chronic Lyme himself!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Unfortunately, on the intake forms, they ask for "previous dx within last 3 years (or so)", who the md was, etc. Or they ask what meds you are currently on, for what, treated by whom, etc. Same applies to ER situations.
Exactly.. and that is where the 'sticker' is.
For example.. I have to go to a Neuro in two weeks (no help for it.. gotta do it) and I asked my LLMD what I should say to this new Dr.
He said "Tell him the truth and if he has any questions.. give him my # and have him call me"
I keep going back to this...
quote: He then told me my doctor was likely to be a scam because I shouldn't have to travel to get treated, that anyone who only treats Lyme is suspicious
LLMD's treat much more than 'just Lyme'. I actually call my Dr a TBDS instead of LLMD or 'Lyme Specialist' when going to a new Dr. (Tick-Borne Disease Specialist) Seems to cause less irritation.
Amazingly.. the Endo and the Rheumy that I had been going to prior to my diagnosis were both a 400 mile round trip to get to either of them! We just do not have any specialists like that here. And no one batted an eye nor called them a 'scam' as that is the 'norm' here in the boonies.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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TerryK
Frequent Contributor (5K+ posts)
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posted
quote: So what do you put on the form to protect the llmd?
That IS a really good question. So far I haven't had to change docs so I hadn't confronted that yet. When one of my docs asked me and I wasn't sure if they could be trusted about lyme doctors yet, I said I hadn't gone to them yet (which was true) and I couldn't remember their name. Of course that won't work if you have to fill out a form.
If I had to be devious I might put the name of the LLMD's business - very abbreviated such that they can't find it in a phone book - without an address or Doctors name and hope they won't ask questions until I can figure out if they are going to be hostile or not. If the LLMD did not have a business name, I'd probably mispell the Doctor's name and not put a first name and not put an address. That would work pretty well in my case because my LLMD is out of State. If they ask for an address, I'll tell them I'll bring it in next time. I hate being devious but I don't feel comfortable giving out my LLMD's name until I know for sure that the doctor can be trusted.
I'll have to give this more thought. Good idea to ask the LLMD as MamaWolf did. Even doing that, my tendency is to want to conceal that info if possible until I know they aren't going to go ballistic and report my doctor.
I guess easy for me to say not to give out the name since I haven't had to fill out any new forms yet.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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We just do not have any specialists like that here. And no one batted an eye nor called them a 'scam' as that is the 'norm' here in the boonies.
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