Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I am afraid to tell my other doctors that I have chronic Lyme and am seeing a LLMD.
I am afraid of the reaction I might receive, the possible disapproval of all the antibiotics I am taking, and also want to protect the LLMD. (Although LLMD doesn't care if I tell other doctors about the Lyme treatment or not.)
What has been your experience with this?
Is it better to keep it a secret?
(With our medical records going online, the secret will become harder to keep.)
posted
My personal experience, at least where I live in Ohio, is that I have told them and I get a better reaction than I did when I was still looking for a diagnosis.
It's more of a "as long as I don't have to treat it" philosophy.
They don't mind treating the wounds while the knife is still in you, just don't ask them to pull it out.
I think it's best they know anyway as far as to avoid possible treatment interactions.
Posts: 147 | From youngstown | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I have usually had a worse reaction. I've been told to leave several offices and ERs -- and I conduct myself very professionally and politely - very low key temperament.
But I am rather spastic and sensitive - and that seems to have them thinking I'm play-acting. I've need to tell them to explain why I am the way I am but that just doesn't work.
In my state, lyme is just illegal and we dare not utter it. I have found one GP who is polite and helps as best possible but still really never even mentions "lyme" as a player here at all. We just never discuss it and move along.
First, you may not need to go to other doctors unless you know their knowledge and skill will actually help you.
One thing I've learned from lyme is to not count on mediocre doctors for anything, ever, if I can possibly help it.
If something is broken or spurting, of course, go. If you suspect a life-threatening symptom, sure, use common sense.
But, so very often, there's just no point in going to other doctors. If you have such a need, though, ask your LLMD for a referral to a lyme-friendly doctor.
Your lyme support group - and even the CFS (chronic fatigue syndrome) support group should be able to offer some suggestions for doctors who might have a bit of an open mind. (But, not from a "fibromyalgia" group).
I would leave the LLMD's name out of it, if possible and especially since you don't know how your GP will take all this.
Some clinics may be required to submit names of LLMDs they hear through the grapevine. Really. It has happened.
You can do as outerspace suggests and tell them up front:
"I have a diagnosis of lyme (and whatever other TBD) and am treating with these Rx (you could supply a list if needed. If you are likely to get any other Rx, it's important that whichever doctor prescribes other Rx has full details of you treatment).
"I know this is not your area and I'm not asking you to treat that, as it is just so very complex. Just thought you should know.
Do NOT tell the nurse or ANYONE ELSE at that office, just between your doctor and yourself.
If you suspect that you won't be treated properly after the "Lyme" word -- and if no prescriptions will be involved - you might then just stay quiet.
But, for the life of me, I just can never imagine ever going to any regular doctor again. There is nothing they can do for me. I've been told so many times. It took a while to believe them.
I'm done. I can figure out a lot on my own and with my ND. Those who have LLMDs, though, should be sure to ask for a list of general doctors who may work for them for certain reasons like regular blood work, screenings, etc. -
[ 05-22-2012, 07:07 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I don't think trying to keep it a secret is a good idea. It is better to be forthright so that any doctor treating you has all the information they need to make good treatment choices. Whether they actually make good choices will be up to them.
Personally, I have managed to find a couple of doctors specializing in family care that have been supportive of my treatment of chronic Lyme through an LLMD, even though they did not feel qualified to do it themselves or feel comfortable doing it.
If I have to deal with any other doctors for whatever reason, I simply state I have a "history of Lyme disease" and leave it at that. If they want any more information than that, I wait for them to ask, then answer their questions politely and directly, without elaborating any more than necessary.
I've found this approach is usually helpful in avoiding getting sucked into arguments or debates about chronic Lyme and its treatment, and have even been pleasantly surprised to find some doctors that have been understanding and supportive.
Posts: 962 | From Charleston | Registered: Jan 2002
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks all.
I am going to a very good endocrinologist (for thyroid), who was open-minded enough to tell me that CFS was real and supported me in my disability case.
As the hearing was approaching, I realized I had chronic Lyme (long story), but had no lab test for proof, so I stuck with the CFS diagnosis when I went before the SSDI judge. (Didn't want to change horses at that point.)
And I never told this doctor who was supporting my case, because he was overwhelmed with all the paperwork he had to do to help me win.
I feel very indebted to him for his help. We have to be able to survive.
Now, I feel so guilty for not telling him I'm seeing a LLMD.
I can see him being open-minded, but I can also see him not liking it or washing his hands of supporting my case in the future, if there is a disability review. (Not sure how much the LLMD would support my case.)
So there are so many things to weight out.
And some of you have had good experiences and some haven't.
Thanks for the feed back.
Posts: 1358 | From Midwest | Registered: Apr 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
It's up to you, but we haven't had one good response from any doctor other than the llmds we have seen.
Sad but true.
-------------------- '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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That CFS detail changes everything regarding my previous advice.
Since he's open-minded and CFS aware, he will likely be at least interested in the lyme dx.
There have been some good medical articles stating that, for many with CFS, the underlying cause is actually lyme, even (gasp!) chronic lyme.
Get at least one of those articles, your tests (omitting your LLMD's name) . . . and just tell him the picture has widened.
Again, let him know that you understand the politics and complexity and invite him to explore this but understand that is it far from simple and you are not asking him to treat lyme -
that not everything is lyme but since lyme does so clobber the HPA-axis, etc. then you thought this might be helpful information - or not.
Keep it light. No pressure. Just voice what you know.
As a professional, I hope he wants to know this. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
It doesn't matter whether it's CFS or Lyme. Your disability is based on what you are UNABLE TO DO.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- He (or she) already went through all that process, though. As I understand it, there is no change requested regarding what dx is used for disability,
but if the doctor is open to lyme, that knowledge may open doors to more effective treatment for the endocrine part of this (as he's an endocrinologist).
I don't think the question had anything to do with disability or asking the doctor to sign on with that, just whether to share the lyme dx or not regarding the doctor-patient working relationship.
I was just thinking that a doctor open to CFS might be more open to lyme than the average doctor (many of whom discount CFS, too). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I tell them, I want to open their minds to it. I think most of the bad behavior is because they don't know WHAT to do.
I tell them about UOS, my ear, nose, throat guy watched it. He couldn't believe it. He's a smart guy and knew NOTHING about Lyme.
I told him to pass the movie around the office, and he did.
I didn't go through all of the appointments to get my diagnosis, so I guess that's why I have no problem talking about it with them.
Posts: 845 | From Northeast | Registered: May 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Unfortunately my llmd sent copies of my bloodwork to my primary who is in the "there's no such thing as Lyme in Texas"' group. I like my primary for stuff such as flue, my annual bronchitis etc.
This is going to cause a real problem for me ya know. I don't know how I will explain this to him when I ever go in.
so I'm in never tell category unless it's life threatening.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I do not hide it from other doctors.
I have had to see other doctors due to the damage lyme has caused on various parts of my body.
For example being on Plaquenil, I NEED to see my eye doctor every 6 months. No secerts there.
I have never had any doctor question my abx.s or diagnosis. If anything most of the doctors I have seen are very supportive.
My primary care does not know much at all about lyme but he knows that and does not question my protocol.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
I have had terrible results telling my dr and specialists I have been diagnosed with Lyme. Recently I was politely asked If maybe I didn't want to find another dr to treat me. One kidney dr told me I didn't need to come back for a year and we did zero testing on my supposedly stage three kidney disease issues. I think I am on to only integrative drs and LLMDs. That does not even count 10 of the 40 docs I saw that told me I needed counseling.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
I have had terrible results telling my dr and specialists I have been diagnosed with Lyme. Recently I was politely asked If maybe I didn't want to find another dr to treat me. One kidney dr told me I didn't need to come back for a year and we did zero testing on my supposedly stage three kidney disease issues. I think I am on to only integrative drs and LLMDs. That does not even count 10 of the 40 docs I saw that told me I needed counseling.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
I want to be honest with doctors and others and not hide the fact that I have "lyme". If I hide it, how am I helping all the people who are suffering with lyme? If I hide it how am I helping all the people who are sick and undiagnosed? How am I helping to spread the word that this is a terrible, real illness? I think hiding it is cowardly. We need to stand up and speak the truth.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
I'll use the "proper" terminology to do what I need to do to get the coverage I need, but I won't pretend like LYME is a secret and doesn't exist.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I got tired of being called names and told I was a hypochodriac and yes even one said "I never thought you had Lyme in the first place"
So how does this help us? By wasting tons of money we don't have on drs who don't believe us? So why tell them?
I lost my life insurance because one doctor told his opinion on my paperwork.
posted
Sorry randibear. That's awful you lost your life insurance!!! I hope and pray lyme disease is out in the open very, very soon so we don't have to continue to suffer more than we already are.
When I get better I hope to go back to all the doctor's who misdiagnosed me for over two years just to let them know that borrelia/lyme is something they need to be aware of...even if only one listens and keeps someone else from suffering needlessly for years. But, I definitely understand what you mean. It's as if we're forced to pretend it doesn't exist right along with the rest of the medical field. Pretty soon it will be so widespread there will be no denying it.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
Sorry Randibear, that is SINISTER!!! Now is the time for ALL of us to RISE up and be heard!! Thats probably why nobody knew about the infection that was in our President Bush "Dubya" How the hell are people going to know the truth if the majority is scared to say anything? Praying for ya all!! whole family infected me, wifey, and 3 daughters. Pantera73
-------------------- NWOODS WI/ bit May08 diagnosed Jul08 Lyme March 09 symptoms return Ehrlichiosis pos.no Lyme? Feb 11 CD57=26 Mycoplasma 343 Babesia 55.2 HHV6 5.8 WB CDC POSITIVE 31++ 39+ 41++ 58++ 66+ 83+ WB IGG POSITIVE 31++ 34 IND 39 IND 41++ 58++ Posts: 55 | From the Lyme Mine | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I also had my life insurance cancelled due to a lyme diagnosis. Odd how in my state, though, no MD will learn about it or treat it seriously. But the life insurance company was quick to cancel. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I have not read all the replies yet.
I believe it is very important to tell doctors you see. They absolutely need to know everything you are dealing with and taking. If they don't and they prescribe something that can interact with what you are taking, the result could be deadly.
I understand not wanting to tell, but these diseases are very real and very serious. If the doctor does not want to accept it or believe it, in my opinion that is his/her problem.
I live in a state where it is believed "Lyme does not exist." Doctors need to know that it does.
Posts: 4681 | Registered: Oct 2000
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
but sammi, here's the problem. if you keep saying you have lyme and you come in with symptoms, they label you a "problem patient" "hypochrondriac" and dismiss your symptoms. when in effect, some of those symptoms may not be lyme related and could kill you!!
so by not telling them at least you are taken seriously when something happens and not dismissed.
it's a vicious circle and each has to do what they feell comfortable with.
as one doctor in the er told me when i told him i had lyme "don't ever mention that here. they will just put you in a room and forget about you."
that's just how it is.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I do not hide my Lyme diagnosis from other doctors and health care professionals.
My LLMD is actually quite cautious in avoiding the Lyme label, and in paperwork, referrals to other specialists, etc usually lists other symptoms without using the word Lyme. However, when I meet with that specialist or health care provider, I do not hide my Lyme diagnosis and treatment. I want them to know everything I am dealing with and everything I am taking.
Every doctor, specialist, and even the physical therapists I've seen, have been totally cool about Lyme. No problems, no wierd remarks. In fact they were all surprised that I would consider it as something to keep hush-hush. They all took it in stride like any other illness.
* * * * *
Posts: 251 | From Florida | Registered: Aug 2011
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posted
Jimmy1, you are so lucky to live in an area that you are treated with respect. I travel over 4 hours to find Drs that take this serious.
Posts: 620 | From Ks | Registered: Oct 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
My GP is good about it, she knows, but we don't talk about it.
Went to a rheumy the other day, he called Lyme docs quacks and was very hostile to me...bye bye
Trouble is he is in one of the few and large practices. The other 3 in town have horrible ratings.
I will word it different next rheumy.....groan.
I hope I am still kicking the day Lyme gets it due credit.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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