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» LymeNet Flash » Questions and Discussion » Medical Questions » Need a new Lyme Doc!!

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Author Topic: Need a new Lyme Doc!!
Rambler
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Howdy folks. I'm lookin' for a new doc.

I'm tired of getting blank stares when I try to describe how much pain I'm in.

I feel like I'm in some kind of strange vortex. I have a supposed LLMD, but last time I was in the office, I didn't feel heard AT ALL and paid $100 for the privelege.

As the doc was ushering me out into the hallway, she said, "I'll call that psychiatrist for you". There was another patient sitting in the room across the hall who looked up and obviously heard the statement. Then... I just happened to see that same patient in the grocery store a few days later. Ah, jeeze!!

I know I'm a nutball- but I'm thinking it wasn't very professional for that doc to announce to the world that she'd be calling a psychiatrist for me! Ya think?

The rifampin has rendered me emotionally unstable. She knows that.

It's been 6 weeks. She obviously doesn't have a clue that waiting 6 minutes can be unbearable when you are emotionally strung out.

It's been wierd. Anybody have a disapointing lyme doc?

Seriously though, what the hell can I say to this doc to wake them up and hear me???? I am in pain every minute of every day and night. Is she so myopic that she can't "get it"? What is she thinking that she keeps sweeping this issue under the rug??

Does lyme generally NOT cause chronic pain?

I pay a price in pain for every single physical exertion. Is there something else causing me this pain??

Come on!! I need some help. What the hell??

Any ideas?

I live in California and am willing to travel to see a decent doc. Sacramento, San Fransisco, Sonoma- all within reach.

Well hell, anybody got a lyme lit psychiatrist?? [bonk]

--------------------
Be Well

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wtl
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Don't know who in CA you can seek but I am sure someone soon will tell you. There are several our west coast I believe.

I wouldn't spend too much time convincing or educating the doctors who are idiots. I would simply move on and save myself some griefs.

Good luck.

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Pinelady
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Well I guess its not true-"You only get what you pay

for". Yes it is very unprofessional to have to

listen to that. But then it might be good for us

to have some PROOF that it can cause symptoms. My

LLMD never even asked me if I had psych

symptoms. If he had I might never of got out of

there. How many patients go alone with this is

very disturbing. Not getting treatment and

diagnosed with psychiatric illness only is like

being in a nursing home with Lyme/Alzheimers.

KWIM. I am sure there are thousands in the same

boat.I have always heard its the ones who know

they are sick are the ones you do not have to

worry about.

--------------------
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

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wtl
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Just want to quickly point out that just because your doctor mentioned the word "psychiatrist" doesn't necessarily mean she is a nutcase. Even Dr. Burrascano in his guideline suggests that a Lyme doctor should consider neuropsychiatric test not with intention to nail you as a crazy person but to understand the serverity of your illness. So you really need to know why she suggested this for you.

We often find patients "impatient" about what the doctor says and carelessly dismiss what's being suggested. We ought to be a better advocate for our own health. We visit doctors not to nail them, but to seek sound advice for our own good.

Off the topic - By reading this board for a while, I do find some of us are paranoid and overly dramatize the whole Lyme debate.

Again one of the symptoms I believe with chronic Lyme is paranoia, according to Dr. Burrascano. We ought to be more conscious about our own "weakness", if you will.

I don't think it is healthy to live on this board 24/7, though it is a great place to learn and to keep yourself updated with the new development. However, we should also acknowledge that this is only one side of the whole story. We should be a better listener to the arguments from the other end.

I honestly suggest that everyone should read Dr. Burrascano's guideline thoroughly instead of pick and choose what we want to read from the document.

Now, I am the most unpopular. [Smile]

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Keebler
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-

Rambler,

You asked: " . . .Does lyme generally NOT cause chronic pain? "

--

Of course. It can cause tremendous pain. But so do the pain meds if they are harsh on the liver as most are, even tylenol.

However, pain levels must be addressed by a variety of modalities. It is only humane to do so and less pain will also help the body be in a better position to heal.


A greatly overlooked tool in pain management is liver support. What is your liver support right now?


A gluten-free diet is also very helpful to decrease pain. Massage, magnesium (up to at least 1000 mg, but also with calcium balanced), fish oil, B-vitamins . . .


if you're doing all that you might also look to your liver support program - and the metal detox part of the plan, too.


Has your current doctor addressed all this?

Have you read the self-care parts of Dr. Burranscano Guidelines and Singleton's book, "The Lyme Disease Solution"?

-

[ 06-13-2009, 11:59 AM: Message edited by: Keebler ]

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Rambler
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Uh, what are you getting at, wtl?

--------------------
Be Well

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Keebler
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-

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Dr. Burrascano'sTreatment Guidelines (2008) - 37 pages

Sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

---------

This is included in Burrascano's Guidelines, but you may want to be able to access it separately so you can print it:


http://www.lymepa.org/Nutritional_Supplements.pdf

Nutritional Supplements in Disseminated Lyme Disease

J.J. Burrascano, Jr., MD (2008)

Four pages


=============

Methods of pain management are included in this book.

This book, by an ILADS member LLMD, holds great information about treatments options and support measures:


http://tinyurl.com/6lq3pb (through Amazon)


THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com


==========


Tai Chi or Qi Gong are excellent exercise methods that are both gentle and also far reaching to help mood, pain, endurance and balance.

They can be fun, too. Many community centers offer classes.

-

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wtl
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quote:
Originally posted by Rambler:
Uh, what are you getting at, wtl?

Uh...not aiming at you at all. Just my random thought.
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JesseSapp
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Well said wtl!

One of my biggest problems with this entire board, and one reason why I read it far less than I have before is the incredibly amount of hostility and utter parnoia people have. I also don't think it is healthy to be on here 24/7 and hear endless stories about how another "duck" has thoroughly insulted them by offering a suggestion that the person might be suffering from something OTHER than lyme disease, or even that symptom X might be from something IN ADDITION TO lyme disease.

Rambler, in reference to your post, I am sorry you are in such pain. I am sorry you were offended by the doctor. I don't think she meant to offend you, and probably isn't even aware you are upset. Doctors are human - and certainly not infallible. Has she not been supportive of you in the past? Is she not treating you for lyme disease when so many other doctors would dismiss you entirely and tell you "I don't know what you have, but it certainly isn't lyme disease"? Seeing a psychiatrist has been one of the best things I have ever done. It has not helped my physical symptoms, but has helped me respond to the frustration, resentment, and anger I had. ("Why me? Why am I ill? What did I do to deserve this?"). Though I do not feel perfect, I have better learned to cope with my illness, accept it, and remain grateful for the many things in life I have - friends, family, and faith.

Perhaps your doctor was just trying to help... Despite all the advances in medicine there are still diseases that we are unable to cure. And, it takes a humble physician to recognize that. The truth is that you may be in pain for months, years, or the rest of your life. I hope and pray it improves. But, in the meantime, I imagine learning some coping strategies from a psychiatrist would be very helpful.

Hopefully I didn't upset you or anyone else. I know from experience this illness is frustrating and alientating. Maybe a lot of people just like to vent their frustration on this board, but sometimes it just becomes too much.

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Keebler
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-

Usually (but not always), psychiatrists deal more with prescriptions. Some don't get into talking much at all.


Psychologists deal more with talk therapy or other techniques of pain management that requires more conversation.


Seeing some sort of therapist can really help us change our self-talk and put expectations in perspective. Such therapy can also teach us wonderful ways of communicating as well as sharpen our skills with problem solving.


For someone with lyme looking for any kind of mental health professional, it is vital to find one who is LL and ILADS-educated so that they have the necessary knowledge base.


=========


www.thehumansideoflyme.net


The Human Side of Lyme - An Inhumane Disease of the Brain


Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories of those who . . .

==========


Also note that the author of "Cure Unknown" has published many solid articles in Psychiatry Today. Those articles all stress that lyme is a physical illness with neurological complications - - and that all mental health experts should become better educated about lyme so that they can serve their clients better with mental health matters around that.


You can access her article through her website.

---

http://tinyurl.com/5crsjv


Cure Unknown: Inside the Lyme Epidemic (2008) - by Pamela Weintraub


This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com


-

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JesseSapp
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quote:
Originally posted by Keebler:
-

Usually (but not always), psychiatrists deal more with prescriptions. Psychologists deal more with talk therapy and problem solving.


Seeing some sort of therapist can really help us change our self-talk and put expectations in perspective. Such therapy can also teach us wonderful ways of communicating as well as sharpen our skills with problem solving.


For someone with lyme looking for any kind of mental health professional, it is vital to find one who is LL and ILADS-educated so that they have the necessary knowledge base.


=========


www.thehumansideoflyme.net


The Human Side of Lyme - An Inhumane Disease of the Brain


Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories of those who . . .

-

Keebler: Based on what the o/p wrote, it appears that her LLMD has selected a psychiatrist already, probably someone she knows personally or whom she has referred lyme patients to in the past. She has probably found this psychiatrist to be particularly helpful to patients suffering from pain and lyme disease. In fact, she even offers to call the psychiatrist, which is very nice and kind rather than simply telling the Rambler to find one on her own and get it set up. Perhaps it was wrong of her to say it in front of someone else, but from what was written, it appears to me like Rambler's LLMD has gone above and beyond the call of duty.
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Keebler
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-

Jesse (and Rambler)

I posted that as a reassurance that lyme is muli-leveled and to reiterate why the referral from a LLMD to a LL psychiatrist is important.

There is a great deal to read at the Human Side of Lyme that really helps us understand that part of it. It helps lyme patients who are struggling with neurological, cognitive and emotional issues not to feel so alone. It also shows success with treatment.


=====================

Rambler,


If, after assessing progress that you've made with your current LLMD and also her knowledge and skill base . . .

and if you've looked over your nutrition and self care and think that you're doing all you can but that another doctor could better serve you, ask around at the support groups and also post in "Seeking a Doctor"


A LL ND may be better able to address pain issue, too, with acupuncture and a nutritional plan individually designed. So, you might also ask for a list of LL ND (naturopathic doctors).


In fact, if you team with a LL ND, you may still be able to work with your current LLMD. Every doctor has some things that may rub us the wrong way or there can be stressful times in our communication with them. And no one doctor has all the answers.


Regarding your wanting the pain issue (& or the anxiety issue) better addressed, your LLMD did do that by the referral to the LL psychiatrist, who is the person who would be prescribing meds in that category.

I don't know that another LLMD would do anything differently in that area.

About mentioning the call to the psychiatrist in the hallway, yeah, that can sting a bit and maybe it would have been better just whispered. However, there is no stigma (or should not be) as a psychiatrist is an important member of the team, just as P.T. or an eye doctor would be. For all anyone knows, your referral was just about sleep medication management.


-----

Find your local SUPPORT GROUP for help in finding a doctor (LLMD or LL ND, etc.)

www.lymenet.org/SupportGroups/UnitedStates


======


Post in: SEEKING A DOCTOR

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2


-

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bettyg
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jesse,

would you kindly break up your long paragraphs into shorter ones and double space between each paragraph for us neuro lyme folks who can't comprehend or read as you have posted? big thanks!! [Smile]

i'd like to follow these posts, but can't when i come to posts like yours. thanks so much! ;

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Rambler
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Well good Heavens! I didn't mean to stir up so much dust.

Thank you for your thoughtful replies.

I have a long history with this doc- we were working on things like intestinal parasites and mental health issues first. It was my therapist who recognized the lyme symptoms...

I'll catch you in the morning.

--------------------
Be Well

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karenl
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I am sorry how your doctor treats you. Many of us have this kind of experience with doctors - and even worse.
But he has to consider your privacy, it is against the law. I fully understand you.

The webpage personalconsult.com shows you some cases with lyme and their "psychiatric "issues caused by the bugs. This is not a recommendation...

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Lymetoo
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Sometimes when someone is sent to a phychiatrist, the patient is told that there is nothing wrong with them mentally!!

So do go and get checked out. Then your "LLMD" has to realize your pain is for real.

PS.. I don't think Rambler is one who is around here 24/7 .. so I don't know why that point was made.

Let us know what happens, Rambler!

--------------------
--Lymetutu--
Opinions, not medical advice!

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tickbattler
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Rambler-

That was very unprofessional of your LLMD, and like karen said, violated privacy laws.

There is nothing wrong with switching LLMD's. Psych issues are a huge part of this disease along with pain. My 5 year old twin boys became very, very manic on rifampin for the first 8 weeks. They have a lot of psych issues. So I can understand how you feel.

My hubby is on his 6th LLMD. We are both finally happy with the one we are with now. The others before were, frankly, not very good for one reason or another, even if they were LLMD's.

Most of them would not treat my husband as aggressively as Dr. Burrescano recommends, so we moved on.

Also, I think your LLMD should be willing to prescribe pain meds if you really need them.

Best of luck to you,

tickbattler

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Rambler
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OK Folks, here goes.

First of all, I kinda think a few of you read too much into my post.

I gotta say that the stuff about paranoia and how much time people spend on this board was not cool and if anything they were simply personal opinions that have nothing at all to do with being supportive or helpful.

If what you read on this board bugs you, well then, don't read it. But please, don't barf your random flaming opinions on someone elses post when they've really stuck their neck out about very personal issues.

Let's be a little more gentle with eachother. Hmm?

My doctor is charging me for every second of her time. Is she a capitalist or a healer? I'm not too sure anymore. She is working with me because I pay her to do so. It has nothing to do with goodness. I am not fooling myself.

I know that doctors are only people. Too bad most of them don't see it that way. Fact of the matter is, most doctors are big fat ego-maniacs. Once in while you find a healer. There is a real big difference. That's what I'm looking for. I owe no allegiance to anyone but myself, here.

So! I will look into the suggestions a few folks sent to my private email. Thanks for that.

I don't need my doctor to tell me I'm emotional wreckage. I know where I'm at. The problem here is not that she used the word "psychiatrist"- the problem is that she has not followed through. I had asked her if she could handle that aspect of my case from the beginning and she was willing to take it on. Frankly, she does not know what she's doing when it comes to nutballs such as myself. I'm glad she has come to that conclusion, but when a person is a blob on the floor and is obviously emotionally unstable, you don't just shove them out the door and tell them you're gonna get them some real help for that little problem and then not follow through. Yes, it's a very personal issue.

Even though I paid through the nose for the visit, the follow up call is still left up to me. I just don't like that. I expect to get something for my money. There is a whole lot more to this situation than I have the energy to explain. Suffice to say, there has been good reason to raise an eyebrow, here.

I won't gripe about my doc anymore, here- I understand the tendancy to be protective of our LLMDs, but I need to move on. Your counter-suggestions have made me think about things and that's a good thing. But, I'm still gonna see what else is out there.

Keebler, thank you for constantly pushing the self care issue- it's what is going to make the difference for every one of us. I'm getting there.

When I first got my diagnosis a little over a year ago, I could not read well enough to even be able to research and understand what was happeneing to me. I can only handle short bursts of computer time, currently. Ramping up my self care is directly related to how much information I can absorb at any given time. It's coming little by little- I know I could or should be doing more or better, but it's big stuff and my brain wants to do as little as possible. I must constantly challenege it.

I come here for support and guidance. This site is what keeps it real for me. Let's keep it mellow, shall we?

Peace.

--------------------
Be Well

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Keebler
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-

Rambler,

I am sorry that there was some talk that was hurtful or way off the subject here. I did not see all that as my eyes are really swirling these days and I glance over a lot.


As for pushing the self-care, I hope you did not feel like I was saying "do better" but, rather, "is there something else that might be tweaked"? Nearly every day I have to go through my self-care stuff to see what else might I do (or stop) to tip the scales in my direction.


I have been the blob on the floor. More than once and over a long period of time. It's been over ten years, so please know that that part can get better. For me, I just seemed to be so very allergic to any of the medicines the fibromyalgia doctors gave me for sleep or mood. Various trials of antidepressants, even in tiny doses, nearly pushed me off the ledge, so to speak.


B-vitamins, magnesium and fish oil (and even a gluten-free diet) were instrumental in bringing my mood back to center. So, just in case this may apply to others, I share that but I know it can be just one piece of the puzzle.


I do hope you can find a doctor who really gets this - all of it - and who can better guide your treatment.


Best of luck. Do take really good care of yourself. Nurture is a very good word.

-

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Rambler
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Thank you Keebler. I appreciate your optimism.

All I can say is me too, me too. The drugs are so hard on me. I'm super sensitive to everything. Can't live with it, can't live without it...

This has been a long haul. My brains flew out the window long before the body caught on. I just kept getting up and going.

It's very strange to find yourself in a place where you can be OK with mental illness, but are devistated when the body goes.

I felt like I was ready to deal with the devil, you know? You can have my mind, but please don't take my body too...

So, now my brain is making a bit of a come back- reading and staying organized are improving, thank god, but my body is having a rough go of it.

The emotional stuff is another issue as well. Bottom line for me is that if I can't exercise my brain just won't work. It's the only thing that seems to make a difference in my clarity.

I gotta do it. But, I've got enough physical stuff to make it costly. Right now, I'm willing to suffer the pain so my brain will work. Not the best case scenerio, but I'm going with it.

My goal for today is to drink more water! [Big Grin]

Later.

--------------------
Be Well

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