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Posted by kissygoose (Member # 21314) on :
 
I have several other doctors that I have to see for various reasons. When I have to tell them what meds I'm on and they ask what I'm on an antibiotic for what do I tell them?

For example. I am supposed to go see a rheumatologist next week (pcp set it up and LLMD said to go to keep pcp happy) about all the pain and everything I have which could be attributed to the Lyme.

When I list all my meds and supplements and such and they ask why I'm on all this stuff what do I say? Is it ok to say it's for lyme disease?

I mean truth be told I'm there because my pcp doesn't beleive in chronic lyme and since I was already treated way back when I'm there being evaluated for possible MS. So telling here I'm being treated for chronic lyme might not be a good thing right?

I'm so afraid of saying the wrong thing to the wrong person.
 
Posted by Topaz (Member # 20216) on :
 
I always tell them. I know many here don't feel comfortable doing that though.

Usually I just tell them I'm presently being treated for a stubborn case of lyme.

If they make any negative comments, I just kind of cut the conversation short and say I am in good hands and feeling much better than I was.

I haven't told any of them who I'm seeing, and they haven't asked. I just say it's a doctor in the area who specializes in treating lyme.
 
Posted by jkmom (Member # 14004) on :
 
Depending on what I am there for, sometimes I tell them and sometimes I don't.

If my PCP didn't believe in chronic Lyme and wanted me to go see another specialist, I might not tell the specialist. I would want to hear how they would treat it without the whole Lyme distraction.

If I end up with a prescription and think it could help, I always run that by the LLMD before taking it.

I almost never list all of the supplements my daughter takes. I just put "lots of supps". They haven't asked for details so far, except at the ER.

When my daughter went in to the ER, we did tell them her most recent antibiotic even though she wasn't on it at the time. They wanted to know about all the others she had been on and we were purposely vague. This resulted in them writing in her chart "parents do not remember all of the abx she has been on" or something like that. LOL
 
Posted by randibear (Member # 11290) on :
 
i do note tell anybody.

my gastro, ob/gyn and primary care do not believe in lyme.

in fact, most doctors in texas don't. er doctors are the worst. and i've been told personally by an er doctor to never mention "lyme" at that hospital.

that's the way it is.
 
Posted by LightAtTheEnd (Member # 24065) on :
 
I haven't had to deal with this yet.

I met another Lyme patient who told me that several non-Lyme doctors had refused to see her at all when she told them she was on long term antibiotics for Lyme.

I do not believe that a doctor could be any help to me if they don't know or don't want to know all the scientific facts they are starting with, including what medicines I am actively taking and what condition(s) I already have that could cause or be affected by whatever new problem I'm consulting them for.

"i've been told personally by an er doctor to never mention "lyme" at that hospital."

Randibear, that is just sad. Would we ever get told by a doctor, "Don't mention 'broken bones' in that hospital because they don't believe in them"? And would we go to a doctor anyway who didn't believe there was such a thing as broken bones? Or pregnancy?

If they want to bleed us with leeches to get our choleric and melancholic humours in balance, should we say, "Okay, sure, you're the doctor"?

If their knowledge is incomplete and outdated, and their facts about our condition are incomplete or incorrect, how can they hope to figure out what's really wrong and fix it?

I don't want to go to any doctor ever again who is not Lyme literate.

I realize that is not an actual option open to me, but I can't trust a doctor who I have to lie to about medical facts. Who in fact PREFERS me to lie, good grief.

And then if we all continue to lie, then sure enough, there will never be another Lyme patient in the hospital that Randibear mentions, and all those other doctors we see will never see a Lyme patient in THEIR office.

But we each have to cope with this the best we can, and do what's possible for our own health, so if you can get the help you need without talking about Lyme, then do it. And if you can avoid identifying your Lyme doctor, it might protect all our Lyme doctors a little longer so they can keep helping us.
 
Posted by randibear (Member # 11290) on :
 
yep, that's exactly what he said. i was in there for a disc problem in my back. i ws sitting there bent over, couldn't straighten up, remember it well.

he asked about my medications and i said, oh i take biaxin, flagyl, some other things. he said what for, why are you on so many?

i said i've been diagnosed with lyme and confirmed by igenex. he put down his chart, looked at me and said "lyme? don't ever mention that her in this hospital. they'll think your crazy or a drug seeker. i'm not writing it down. that's one of those basket diagnoses and you won't find any doctors who will believe you. you just better keep your mouth shut."

it's been many years and i can't recall his name, but he was adamant about not mentioning lyme.

also my gastro told me when i told him about my lyme and going to this one doctor. he said "oh that doctor is crazy. everybody who goes to him has lyme. that's his way of pushing pills. he's going to get disbarred. he's crazy. you don't need to be seeing him."

so see, same thing. even my primary has told me "there has never been a confirmed case of lyme in texas." IDIOT....
 
Posted by LightAtTheEnd (Member # 24065) on :
 
Reminds me of a book I'm reading about Galileo.

He has just observed four of the moons of Jupiter and the phases of Venus through his telescope, proof that not everything in the universe revolves around the Earth.

Now the powers that be are making him deny it (on pain of being burned at the stake) and cease discussing or mentioning that "crazy theory," that planets revolve around the Sun and not the Earth, because their preconceived notions overrule in their mind the physical evidence that they can see with their own eyes (at least through a telescope).

Galileo then finds himself with the same dilemma as kissygoose, not knowing which part of the truth it's safe to tell to which people.

Does anybody say of oncologists, "That doc is crazy. Everybody who goes to him has cancer"?

Come to think of it, how could our Lyme doctors make any money by prescribing antibiotics? If they were doing very expensive yet unnecessary surgery, it might make a little more sense as a fraudulent plot to rip us off.

Otherwise they would be really stupid and spectacularly unsuccessful criminals, LOL. I don't think money grubbing criminals ordinarily aspire to having to constantly defend their license and livelihood and being unable to accept insurance payments.

And what about dermatologists as pill-pushers? They must give out more long-term antibiotics than LLMDs.

Ah well, that's enough preaching to the choir for now. [Smile]
 
Posted by Remember to Smile (Member # 25481) on :
 
I very much respect everything that's been written above. It is tragic that we must use caution in discussing a bacterial infection with medical professionals!

Short note to kissygoose:
Consider asking your PCP to send you to a neurologist rather than a rheumatologist. It's my understanding (in a just of month of intensive research, so that's not much) that patients with LD complex may receive better help from neurologists than rheumatologists. LBb and Bart affect the CNS.

My rheumatologist just sticks to her Fibro diagnosis, observes me worsening dramatically, and offers more Rx muscle relaxatant. None of her office staff ever even heard of the Western Blot nor ILADS.

I saw one neuroligist last year and liked him & his staff. My experience is quite limited, though...
 
Posted by kissygoose (Member # 21314) on :
 
Smile...I actually have been to a Neurologist who does not beleive in chronic lyme. None around that I have found do. I was basically told that I could either increase my medications and become more of a zombee or learn to live with it.

My pcp seems to think my problem is either RA or MS which is why he's sending me to the Rheumatologist. She is the same one who diagnosed me with Fibromyalgia in 2008 so I have a feeling she'll stick to that. I just hope she doesn't do what my pcp wants and do a spinal.
 
Posted by randibear (Member # 11290) on :
 
uh, i went to a neurologist. same story...dead end...
 
Posted by Remember to Smile (Member # 25481) on :
 
Refuse the spinal! It's your body, your choice.

There's info on that in Burrasanco's 37 pg monograph. Be ready to ask for a CD-57 or something else since you suspect she may be interested in ordering tests.
 
Posted by Keebler (Member # 12673) on :
 
-
RA and MS are, very often, advanced lyme. Stop the wild goose chase for doctor who will say you have those. As, often, steroids are used and that makes lyme worse.

Focus on treating the lyme. You've just begun. Why flit about looking for diagnoses that are just umbrella or trash can diagnoses when you've got your answer as to the cause?

Stop going to any doctor who is not educated about lyme to the degree that you need for the service you need from them.

Just say "no" - no, no, no to that lumbar puncture.

Never do anything just to make your PCP happy. Get a new PCP. Or just do without. We need them far less then we think.

Seeing other doctors who are uneducated, just to make your PCP happy, gives your PCP money for the referral, pays hundreds to the rheumatologist to tell you that you have fibromyalgia and depression and take this and those pills. It is a waste of money, even if your insurance pays. And, it perpetuates stupidity. It keeps the system dysfunctional. You pay for their inferior performance.

Do not hire doctors who are ignorant in matters upon which your very life depends.

Get educated so that you can manage excellent self-care and handle most of your own minor emergencies - and then see your LLMD when you need to do so. Ask your LLMD for reading materials for better self-education in matter of self-care.

Ask your LLMD for other doctors if you need one. Ask your local lyme support group for support doctors but just don't hire idiot doctors and then expect them to help you or understand you.

Think of a business model. You should hire experts who are well educated and experienced.

You might also get the book "I'm Okay; You're Okay" and explore the kind of communication models best to operate in during business transactions.

Medical transactions are business transaction. They are not your parents; not your friends. They are there to offer expertise and experience. If that does not happen as it should, it's a very bad business decision that affects your health and your life.
-

[ 05-18-2010, 05:24 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
-
A LP (lumbar puncture/spinal tap) is such a poor test for lyme.

It's like fishing. If you catch a fish in a lake, you know the lake has fish. But if you don't catch a fish, you can't say there are no fish in the lake. You just didn't catch one.

Spirochetes do not just all swim around the spine waiting to be sucked up into a needle. While, once in a blue moon, the needle may withdraw CNS (cerebral spinal fluid) that might contain some evidence of a spirochete, in general, spirochetes hate vibration, light, motion, etc. They will spring away from the action.

While some have no problems, for many, a LP can be very painful and you could have a tremendous migraine for weeks afterward needed someone to care for you, at least for many tasks.

And, they are expensive. Even if you do not pay out of pocket, someone is making a huge sum of money from a test that does not even work to dx lyme. It's a waste of money unless in a life-threatening emergency and they are looking for other reasons. To assess lyme, it's a wasteful exercise in futility.

However, the doctors know this but will use the predictably negative test to DENY TREATMENT.

AND - even if they found lyme the neuro will go by IDSA standards for treatment and you'd get 9 days' worth or 3-4 weeks max of one medicine alone.

Not enough. Go only to doctors who are truly educated about lyme and all tick-borne infections - and how they impact a person at various points in time after transmission.

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

http://www.ilads.org/search/search.php?zoom_query=lumbar+puncture&x=0&y=0

Search results for: lumbar puncture at the ILADS website (includes the IDSA guidelines for comparison)

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

http://www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Summary of ILADS Guidelines

Excerpt:

. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.

In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.

For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.

The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.

The proposed index of 1.3 would be expected to have even worse sensitivity.

. . . .
-
 
Posted by kissygoose (Member # 21314) on :
 
Keebler...I even asked my LLMD about the Rheumy. HE told me to go ahead and go. Said it can't hurt anything and it would get my pcp off my back.

He did say not to let her tell me I have RA though as my arthritis doesn't present that way, it presents LD.

As my PCP likes to remind me I've had problems long before my EM rash so the likelyhood of LD causing all my symptoms is slim which is why he wants me at the Rheumy. Maybe that's why my LLMD is saying to go ahead and go.

I know the pcp mentioned looking for the ld in the spinal but he mentioned more the ma and other stuff. I don't want one and am going to avoid one like the plague. If I remember this Rheumy, she is very nice and open to listening to patients.

Here's a question. Why do they even do a test like that if it's so unreliable and so expensive?

As for getting a new pcp, unfortunately due to insurance and monitary constraints it's not as easy as you might think to find a new pcp. There aren't that many around here that are taking new patients and if they are they aren't taking my insurances.

Sorry. Don't mean to sound deffensive. I really am doing the best I can.
 
Posted by Keebler (Member # 12673) on :
 
-
I know you are doing the best you can. Sometimes, we do too much. Each unnecessary appointment takes about a week away from our progress. Ask yourself what it's worth. A week of your life to bounce back from the output of energy? How long to recover from the interchange itself?

The LP will likely be used to deny lyme. Your goose can be cooked, then.

You don't have to defend yourself but you can also stand up and just say "no" - if a doctor is on your back about a procedure or appointment that you don't see as necessary, tell them to back off. You are the consumer here.
----

Practice saying this: "I will give that some thought." If pressed to make an appointment, say "I don't want to schedule anything now. I'll get back to you (or the appointment person) ." You can add "if I decide to do that."

Other phrases: "There's a lot to consider. I want to give it some thought." or - "Thanks for your thoughts on the matter. I'll think about it."

If pushed for the LP, say "I'd appreciate your writing down exactly what all you'd be looking for. It will help me think through my decision."

"I've decided not to pursue that (at this time)."

----

Look, we all tell you with certainly that is surprising to you that this will likely lead you down a long, rocky road. Because we've been there. How many dozens of "specialists" formally discounted me. How many tens of thousands spent doing the wrong tests? Hopefully, more than you'll ever know.

If you are looking to find the great and good "Oz" he's not behind the curtain. Sometimes, you have to draw your own curtains and just rest. Let the treatment work. Give it a chance. Chasing rainbows can counteract your body's ability to heal.
-
 
Posted by lou (Member # 81) on :
 
Those are good sentences to write on flash cards and remember. Thanks Keebler. You would make a good patient advocate, as in taking you along to appointments with doctors. It is hard to resist being supine with doctors, as that is what most demand.

Back to the original question, I have found it nearly always a waste of time and counterproductive to talk about lyme or give info about treatment. I have been treated badly a number of times. Now, if I tell anything, it is a much abbreviated version, since it often is used as excuse to shaft a patient when they are truthful about lyme treatment.

What a world we live in! Doctors who fail conventionally to help anyone are patted on the back. Doctors who help unconventionally are punished.

Patients who go to ignorant doctors are often abused and given no help, or sometimes even hurt by useless, painful, or damaging treatments that are wrong.

I am so tired of it all.
 
Posted by Remember to Smile (Member # 25481) on :
 
Bravo, Keebler!

kissygoose, you live in Central PA? Any habitat there for ticks, horseflies, deer flies, fleas, and/or mosquitoes, all known to carry LBb? Ever been near anyplace with those pests before your EM rash showed up?
[loco]
Your PCP is again proving his ignorance when he assumes you couldn't have had any LBb or LD complex & co-infections before an EM rash!

Hmmm, are some of your "other problems" from a BLO?

You could:
- cancel or postpone the Rheum. appt It IS pointless, expensive, wasteful...
- list only a few of your meds & supplements [Roll Eyes] when you see a non-LLMD for a non-life-threatening situation (see jkmom)
- re-read Keebler's posts here.

Be strong, Hon!

Follow these steps:
1. Relax and take distance.
2. Decide what you CAN do.
3. Know that, sometimes, to do nothing is the best choice.

Smile
 
Posted by kissygoose (Member # 21314) on :
 
Smile....I know for a fact I got bit by a tick in college in WV. Don't know what kind and haven't looked to see if Lyme is there but I would imagine it would be. Wasn't treated for anything back then as I had never even heard of Lyme and didn't even report it to the school nurse. That was before I started getting a lot of my "symptoms".

What is BLO?
 
Posted by Keebler (Member # 12673) on :
 
-
BLO - Bartonella Like Organism
-----------------------

http://neuro-lyme.com/Bartonella.html

Bartonella is a blood infection, commonly referred to as ``Cat Scratch Fever''.

Currently testing exists for two species, however, there are now over 30 known unique species with over 200 variants.

Dr. Joseph Burrascano distinguishes the Bartonella associated with Lyme disease as "Bartonella-Like Organism" (BLO) rather than the more common species due to the wide variety of symptoms and difficulty in treatment.

In his experience, BLO usually intensifies the symptoms of Lyme, especially those symptoms relating to the central nervous system, and needs a very custom treatment protocol.

The symptoms for Lyme BLO may include any combination of the following:

. . . See list at link above.

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

Back to the original question of the thread but not so much what to tell other doctors as how to know if you need to see another doctor for this - or that symptom. Lyme - and all TBD (tick-borne diseases as well as other stealth infections) produce a wide array of symptoms.

As grisly and depressing as it can be to read about how lyme can affect a body, it is necessary to learn the new "order" so to speak. Knowing how lyme works can actually save much worry (as identifying the problem is half the battle) - and many unnecessary appointments with non-LL doctors.

Not only when to suspect lyme - but how this toxic spirochetal infection (once in the nervous system, in the brain, the heart, the liver, etc.) affects every system, every organ and what that means for a person with lyme:

http://www.angelfire.com/biz/romarkaraoke/whento.htm

When to Suspect Lyme - by 
John D. Bleiweiss, M.D.

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

Then, be sure to take a recess, find some laughs somewhere. Here's a favorite activity to reset my mood:

http://www.youtube.com/watch?v=OfMmnHpvL70

Mr. Bean Goes to the Swimming Pool - 5:05
-
 
Posted by hshbmom (Member # 9478) on :
 
Kissygoose, Lyme is alive & well in WV.

In 2006 46% of WV counties met the CDC's criteria for an endemic county. I used the WV Health Department's Lyme case counts to determine this.

The CDC defines an endemic county as a county with two or more cases of Lyme acquired in the county. TWO ...or more. Not two a year!

Research this yourself to determine your state's staistics. Call the state health department, division of epidemiology, infectious disease division. Ask them to send you the Lyme case counts from 1990 to present. Put this information in a spreadsheet. Count the number of counties with two or more cases.
 
Posted by kissygoose (Member # 21314) on :
 
quote:
Originally posted by hshbmom:
Kissygoose, Lyme is alive & well in WV.

In 2006 46% of WV counties met the CDC's criteria for an endemic county. I used the WV Health Department's Lyme case counts to determine this.

The CDC defines an endemic county as a county with two or more cases of Lyme acquired in the county. TWO ...or more. Not two a year!

Research this yourself to determine your state's staistics. Call the state health department, division of epidemiology, infectious disease division. Ask them to send you the Lyme case counts from 1990 to present. Put this information in a spreadsheet. Count the number of counties with two or more cases.

I think I have a cousin who works for them. I'll have to check. Maybe she can get me the info.

I know about what year it was and where I was when I got it so that will help me find out if I was in an endemic area (which it sounds like I probably was.

Lots and lots of reading and research to do. Just out of curiosity, how do you all keep up with it all? I can't keep everything straight. I used to be an intelligent person but now I'm lucky to put two coherant thoghts together.
 
Posted by Remember to Smile (Member # 25481) on :
 
Dear kissygoose,
I think my 19 May post may have come off poorly. Hard to convey sarcasm well to strangers via email.

I only meant to imply that your PCP was ignorant, like mine. NOT any implication that you may be loco or not keeping up. Very sorry if my tone was off.

And I wish to re-iterate my 18 May post in that I believe I've read two places in Burrascano's 37-pg monograph that neuro-Lyme issues may require neurologists or endrocrinologists for testing. Haven't read all 37 pgs yet, but I've highlighted several pgs again & re-read them. For my issues, Burrascano notes I'd need testing by an endocrinologist and a neurologist. I think that document also states that Lyme is not rheumatological.

Yup, I know that paragraph has no footnotes. I'm just a Lymie, going downhill FAST.

As for how to keep up, kissygoose, I put Burrascano's monograph into a 3-hole binder and started underlining parts that screamed out to me. Then I bought dividers so I could separate the chapters more easily.

I need three more binders asap for:
* "other ILADS-related Research articles"
* Klinghardt and ART testing, etc.
* My recent test results

I openly confess to having read little of the abx info yet. One bridge at a time. When I meet my first LLMD, then I'll read those pages.

Regarding BLO, do a search for Bartonella henselae. You'll find an active Dr. F. who publishes research on this awful infection hitting lots of children in NJ. There's a video of a presentation he did for a LDA conf a couple yrs ago, too. Yes, I'm being obtuse. I'm pretty spent this am.

Best wishes,
Smile
 
Posted by AlanaSuzanne (Member # 25882) on :
 
What do I tell other doctors....

Everything I've learned about tick-borne illness.

I refuse to hide wh
 
Posted by AlanaSuzanne (Member # 25882) on :
 
geez don't know

What do I tell other doctors....

Everything I've learned about tick-borne illness.

I refuse to hide wh
 
Posted by AlanaSuzanne (Member # 25882) on :
 
Oy vey,

I just tried to post on this thread twice. And twice a post went through that was not completed.

What I am trying to say is that I am so "out there" when it comes to my kids.
 
Posted by s0ngbird1962 (Member # 16395) on :
 
I guess everyone has their own comfort zone.... but I was always too afraid of possible drug interactions & other complications etc., by not telling.

So, I always told them that he saw a pedi-llmd, what meds my son was taking and why. Was a great relief when my pcp informed me that he would have done the same thing if in my same situation.

Lucky here to have found support with my son's pcp and his school.
 
Posted by AlanaSuzanne (Member # 25882) on :
 
OK trying once more. I believe in telling the other docs exactly what is going on,

I don't give a rat's *** if they "believe" or not.

Last I heard LD wasn't a religion.
 
Posted by Need Lots of Help (Member # 18603) on :
 
Now that I know my PCP understands my lyme and my lyme doctor, I share with her everything.

With doctors before, Nuero, Rhumey, ID, and PCP have directly ordered me to stop taking the antibiotics.

I also had a doctor start asking questions about the doctor who put me on the antiboitics and warn me about "Lyme Doctors".

So, I guess it depends on if you trust the doctor, if the doctor believes in lyme/or is willing to trust the lyme doctor, and if you have the ability to get another doctor if you don't like what he has to say.

Good luck!
 
Posted by Lauralyme (Member # 15021) on :
 
Sometimes I say Babesia and the Dr seems embarassed to question any further as he doesn't know what it is.
 


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