Topic: Off to find a GP who will support lyme dx-DISASTER
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi All,
I've assembled my envelope that has the DB guidelines, Dr. B's guidelines, and ILADS guidelines.
I've included my initial Igenex WB and my IGM challenge which came back positive.
I've also included a referral for lyme clinic, which doesn't treat but is doing research on lyme patients.
How do I go about asking this gp doctor about treating my lyme? I feel like I'm going to a job interview...
This doctor, (gp), is aware that I have had neuro problems, but isn't aware of my lyme dx or that I have had abx for lyme.
From the feedback I've been getting from my local support group...there's no point in asking for a referral to an ID doc. Apparently it is a fruitless expedition, as 'lyme doesn't exist in BC'.
So far, up to this point, there haven't been any 'black marks' on my medical records. I am worried if I get rejected by one ID doc that I'll be stamped for life.
I also wish to be tested for c.diff and different viruses. Are there any other tests I should ask for at this appointment?
Thank you kindly
[ 07-16-2013, 07:49 PM: Message edited by: GretaM ]
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Is that the Murakami clinic? Have you asked them if there is someone to see who can treat you?
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poppy
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Walking in cold to just any doc is not likely to succeed. Better to get help from other patients if you can on where to try.
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GretaM
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Member # 40917
posted
Hi Poppy,
Yes, I have tried that. The fellow patients at my lyme support group are unwilling to give their treating physician names. Most have had to fight for their lyme treatment, and have promised their physician not to mention their doctors names to anyone.
I have also posted on the canlyme and the forum here for a lyme friendly gp, but no one has responded with a BC doctors name.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Hi Otter,
The Murakami Clinic is no longer open. Dr. M retired.
The new clinic is a complex chronic disease clinic out of the BC Women's Hospital, and is for fibro, cfs, and lyme.
They are careful to state that they do not treat at the new clinic, that it is just for research.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- Do not just walk into any GP's office. Please. Save yourself from this likley disaster - for a couple different reasons.
NO COLD CALLS. They can boomerang and follow your chart for a very long time.
Do not take all your informational papers UNTIL you know- absolutely - positively - that the doctor is already up to speed.
You will get nowhere if you have to "educate" a doctor about lyme. And most, right then and there, would shut you down before the first sentence is out of your mouth.
I understand you are trying to find a LL GP but I worry when you say you have the packet of information all ready for them.
I did that. I got struck down. Big time. It's a frequent happening so do hold out until you have a firm name.
As for a GP who will actually treat, that's a long shot in the U.S. and in Canada. GPs do not have the latitude to treat properly so corners may be cut.
Generally, GPs don't have the education and this is not a recipe book treatment. Your case REQUIRES someone who is already fully educated in all tick-borne infections.
If you need a LL GP for basic guidance during treatment with a LLMD, that's a whole different thing and are more likely to find one (though they are still very rare).
Might you be able to see a LL ND (naturopathic doctor)? I do not know if they can also prescribe pharmaceuticals in Canada or not but it's worth checking. I hear there is at least one good one in your area. More across the border, to your south.
Of course, more LLMDs in Washington state, too. It's just that insurance is not an option. Sigh.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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- Let's think about how else you might get some leads.
I can't think now but there may be other ways to just ease a few key details out of the right people.
Might someone in the CFS support groups know of doctors who have been connected positively to "lyme" treatment? All you need is a mention here or there. Call your local support groups for:
CFS (Chronic Fatigue Syndrome)
FM (Fibromyalgia)
MS
ALS
Parkinson's
Ask if there are any GPs mentioned in the groups who may know about lyme. Don't get caught up in the "politics" or "definition" and we know that lyme (or other stealth infections) often can CAUSE these conditions but it's best to just not rock that boat.
Maybe just say something like:
"for some cases, sometimes, someone with a neurological condition may also have lyme. I just wonder if you've ever heard of a doctor who knows more about lyme?"
And that would be only a start. Not ready to move forward yet with just a name, unless you get lucky and get all kinds of good detail.
You might then go hang around a waiting room and chit-chat with patients before their appointment to get a sense of the doctor. Don't bring up lyme and listen more than you talk. Ask basics like if the doctor seems to go the extra mile and think of all things possible that might be related.
Do NOT tell anyone your name. This could be tricky if you need to check in with a receptionist who is sitting right there, though.
If you are "noticed" by staff, say you just happened to be in the building and was considering a new doctor. As for their card and any specialities listed. Your "chat" time with others may be over when staff notices you.
I'm not sure how else to find out other than the basic web searching for any articles authored by the doctor. Calling their office for that detail, too, so you can have a better idea of their scope. -
[ 07-17-2013, 03:30 PM: Message edited by: Keebler ]
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Keebler
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- Now, after all that, I realize that you may already have an appointment scheduled for today(?)
So, to protect yourself, I suggest taking it something like this:
Eye to Eye - be sure he is looking at you and engaged. No distractions.
Tell him that you have a postive IgM for lyme that, from what you can tell, indicates persistent lyme.
"I know this may be a bit new to some doctors and it's very complex. Just need to know if this is an area that you can work with?"
--- his answer will determine your next moves.
Hopefully, he will be open, at least. If not, though:
Do not beg, cry, plead, or show emotion. I say this because a wave can crash over you (I know) and it may shock you. Try to NOT SHOW EMOTION as that is most often misinterpreted. Crying will especially have them thinking the worst of you.
(Again, been there, done that. So very sick and crying just took me over when rejected, even with postive tests, but that crying set me back in their eyes.)
It's fine to voice a degree of frustration but be very careful about anger (even if reasonable). Consider that you took a Volvo to a Chevy dealer, just in case he may know what to do.
If not, just chalk it up to this doctor not having the skill you need.
Ask if, when you find a doctor who can fully address this for you, if he could be on board for certain monitoring tests or to order certain prescriptions. Is there some way this might work? If so, let HIM talk and listen carefully to his words. Watch his body language, too.
If he's open at all, remember that he probably does want to help, in some way, at least. If he is not able to be a full treating doctor for you, if you can maintain a good relationship, you two may still be able to work together in some ways. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
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Yes, I have seen that happen in the U.S. Patients who will not tell you who their doctor is, because the doctor doesn't want a bunch of lyme patients.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might get some leads from the outdoor kind of groups. Call all you can think of (or check you phone book, the web) for groups of hikers, birders, etc.
Talk to there community education person as they are more likely to help in the most detail than just who ever might answer the phone.
Ask if they just happen to have heard of anyone getting treated for lyme because you are looking for a good doctor and they are hard to find.
Even if you may not be able to go to a LL ND (naturopathic doctor), you might call to all in your area and just explain that you need someone with your insurance (or whatever it's called there) . . . and migtht they know of a forward thinking MD GP who could work with you, somehow?
While you have them on the phone, for future reference, you might ask if they happen to work with rife machines? Just good to get that detail in case you go another way.
When you get a name, do not tell the receptionist when you call about lyme. Don't even tell the nurse when you check in. Try to keep that just between you and the MD until you see how it goes.
If he/she turns out to be one who may have to "fly under the radar" they may not want it advertised where others can over hear that hot term.
I know, who would've ever thought?
Edited to add:
My neurotologist was the one who suggested I be tested for lyme. He knew (but then tried to give me steroids, a huge "no" for lyme. And he could not treat lyme.)
So, I'm thinking that maybe a neurotologist in your area might just know more about this than the average bear. They might know of some doctors who would treat it. You might call their office ask to talk to a PATIENT ADVOCATE, or support group leader - or the office manager.
Since lyme often clobbers the ears, a tinnitus &/or hyperacusis or even a balance support group leader may have some leads for you. These may be listed under "Vestibular"
MASSAGE THERAPISTS - find their professional association near you and ask the same kinds of questions, if they just happen to know . . . . -
[ 07-16-2013, 02:43 PM: Message edited by: Keebler ]
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Keebler
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- Let us know how it goes. Hope well. -
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GretaM
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All of you were right. It was an absolute disaster. I've seen this gp probably 40 times in the last 2 years. As soon as I mentioned the word lyme, that was the end of doctor/patient relationship. GP wouldn't even refer me to the lyme clinic here.
Also sneered at finding a tick on me, a positive IGM, my dog dying from lyme, and my neuro issues.
Gp sent me for some tests, even thought "I'm sure they will all come back normal".
The gp said the only disease that would be considered when the tests came back normal in a week was a mood disorder.
I don't even know what a mood disorder is...
Oh, and even though my ankles and feet joints are swollen, I was told I needed to get back into sports because I was gaining weight.
I told the gp "thank you for your time" and left. Wasn't emotional, didn't cry plead etc.
Saved some choice words for when I got into the privacy of my car.
I'm am still boiled up at this experience and will read your tips when I am not so shocked.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Mood disorder.. Depression .. or you're making all this up.
Idiot of a Dr!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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- They must all compare notes about this. Your experience is a replay of hundreds across the continent.
Greta,
I'm so sorry. At least you know that door is not open.
Sounds like he already has his mind made up "when the tests come back normal in a week . . . mood disorder." (end paraphrase).
BTW, when I went through this that "mood disorder" was flat out labeled "psychiatric" or "pyschological" or "somatoform" - some came straight out and said it was "all in my head" - "hypochondriac" is another "mood disorder" term often tossed at those with lyme, et.al.
One doctor decided that the severe hyperacusis (sensitivy to sound) had to be due to schizophrenia - and put that as a diagnosis solely on my not being able to sleep during a sleep study due to all the truck deliveries under my window all night long.
Another doctor saw the "mood disorder" as "bipolar" because my mood would crash (due to exhaustion and illness that was ignored).
I was falling a dozen times a day, with seizures sometimes from sudden sounds, which were all over the city. I was told by an immunologist to get out and walk all over downtown every day (I lived downtown at that time). He said "fat" was my only problem. Others told me to "get a life."
You must learn to identify TRUTH. Walk in truth. Let all else go.
Really, hundreds (if not thousands) of those who are very ill have been told the same, or worse.
So, you can see that you were told is standard procedure for that kind of doctor (and I do swear they must be taught these responses to be so across the board).
I know that won't make you feel any better just know that they are wrong in so many ways and we can do better. You have knowledge with that positive IgM. Now you just need someone with way more knowledge to set you in the right direction.
Adrenal support can help offset the shock. Nourish and Nurture. Always other ways. -
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BoxerMom
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posted
Disaster is right!!
What a joke. The practice of medicine is becoming a joke.
I had my cat at the Vet last month. Vet knows about my Lyme. We were discussing doctors and she shared how frustrated she is when she has to bring her daughter to the pediatrician.
She described the typical doctor attitude as "dismissive."
Toward a kid. Without Lyme!
It is more attitude and less diagnosis every year.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just in case you get an idea to go gung-ho with exercise, keep this in your reference notes, scroll to about the middle for SAFE EXERCISE. Aerobic activity can be dangerous for those with infection.
I had some terribly wrong advice about that and did some damage when aerobics were pushed on me. No need for others to suffer in that way. There are better ways.
EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)
ADRENAL, CARDIAC, MITOCHONDRIA & MYELIN SUPPORT - that all helps movement better work for us
Styles discussed: Pilates; Qi Gong; Tai Chi; Yoga; water; strolling; etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Oh, you do not have to go back for those tests. Have his office manager MAIL you the hard copies when they come back. Talk to his staff, also ask for copies of any other tests that may be in your file that could be of any help in the future, if there are any.
Say only that you "just need them for your personal notes to stay organized" - and leave it at that.
You do not need to ever go back to this doctor. You don't need to tell them that, however, especially before you get the copies you may need.
If asked if you need to schedule again, say: "No. Not at this time."
Most likely, he did very basic tests and we all know that the basic tests are usually just fine with lyme. Much more sensitive tests and other ways to assess are required. Remember that if you are told the new basic tests are just fine.
My heart goes out for you as, each time I hear another tragic tale such as this, my own scars become a big inflammed again. Such a terrible abuse. That abuse is deep for so many who have been dealt nearly identical blows - over and over. So you can learn more quickly, now.
Whatever spiritual practices you may have, or other ways to set yourself free of the day -- music, a delicious savory dinner, a comedy . . . seek out beauty, art, style & grace.
Do all you can to walk in truth and head only toward that which will help to nourish, nurture and heal. -
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GretaM
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Member # 40917
posted
Thank you so much for your support all. I don't know what I would do without you guys and this forum-probably cry myself into a coma.
After I got home yesterday, there was a message from the clinic... A small part of me thought, "Maybe the gp phoned to apologize."
No. The clinic phoned to remind me that it was time for my pap.
I guess if the mood disorder dx doesn't pan out, female problems will be next on the list...
There is absolutely ZERO chance of me EVER returning to that clinic. I am so relieved to read that I don't have to go back there to review my results.
Aside from the lyme, and aside from me being so ill even, what ever happened to kindness?
The very least a person can do for another person, is to be kind.
ESPECIALLY someone in the medical field.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Keebler-Awesome suggestions on how to snoop out a doctor.
I will phone those other groups and inquire that way. And thanks for the tips about how to approach the topic of lyme when I do find a potential doc.
Also a good idea of asking about the rife machines because if a doctor will consider the rife, then it shows the doc is open minded and not brainwashed or numbed by their job.
Boxermom-when my dog went to the vet, (doxy was a last ditch effort, the damage was done on her spleen and the growth has started around her heart), the doseage for her was 400 mg doxy, for AT least a month. This is a 60 lb dog. The vet said likely 3 months or more.
I was amazed that IDSA guidelines for humans, is obviously, even by veterinary standards, not adequate. My vet couldn't believe how low the doxy dose was for people.
I believe vets are helping lyme awareness by reporting their lyme cases more readily than human doctors.
Thanks again you guys for your support. Yesterday was a tough day.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
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- The documentary, "Under Our Skin" will be helpful before every trying to approach another typical doctor - for anything as long as your body is dealing with lyme (even if you don't ask for them to treat lyme/TBD).
posted
So sorry to hear what you have been through. The same thing happened with our family doctor when I showed him our daughter's positive bartonella and IND lyme results. He told me ritalin, klonipin and a good spanking would fix her right up.
I left and have never gone back (2.5 years ago). They keep calling for me to make an appointment for my PAP, but I keep cancelling. I will never look that doctor in the eye again.
However, when I take the dogs to the vet for checkups, we have great conversations about lyme and other tick borne infections. She makes me feel like a person. Wish I could go to the vet for my own checkups!
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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I would not bring up Rife treatment on the first appointment. In the States, a Dr cannot offer info on Rife, but if you ask about it he/she can discuss it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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BoxerMom
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quote:Originally posted by rowingmom: He told me ritalin, klonipin and a good spanking would fix her right up.
RUUUUUNNNNNN!!!
Good for you for not giving them any of your business. How insulting. Not to mention barbaric!
It has been said many times on this board that maybe we should all be treated by Vets.
Keebler
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Member # 12673
posted
- More chilling and horrific than lyme, other tick-borne, other chronic stealth infections is the vast array of not just ignorant (as some may be ignorant due to lack of education) but also the ignorant AND sociopathic doctors - the sadists, the abusers - that are encountered.
This may be a prerequisite to join the IDSA (regarding tick-borne infection attitudes, anyway). -
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GretaM
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Hi All, Keebler-couldn't agree with you more. I had a coworker who was putting herself through school to be a psychiatrist. She was a top student etc. In my opinion, also a few cards short of a full deck. I haven't kept in contact for years but I often wonder where she is and how her patients are doing.
Rowingmom-thanks for the link.
Boxermom-yes, vets seem more compassionate and up to date than their human counterparts most of the time.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Lymetoo-thanks for the info re rife. I will be sure to ask about it, what is is etc, but not if it works or if it is something he/she recommends.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
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- Maybe this needs to be considered when one is seeking a good doctor. So we know the type to avoid. #9 does sound like the IDSA mantra but the whole mix sure identifies many doctors who would not even consider any discussion of lyme in their office.
As sociopaths can be in any job, they may tend to be drawn to positions honored for intelligence and the picture of absolute authority, and the power that goes with that (such as medicine).
#9) Sociopaths never apologize. They are never wrong. They never feel guilt. They can never apologize. Even if shown proof that they were wrong, they will refuse to apologize and instead go on the attack.
---
If the hat fits? Re: the doctor who suggested for a very ill little girl that: "klonipin and a good spanking would fix her right up."
What kind of person would even think of only awareness altering / liver stressing drugs and hitting a little girl instead of addressing the positive bartonella and likely lyme infection? -
[ 07-18-2013, 02:21 PM: Message edited by: Keebler ]
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GretaM
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Couldn't agree with you more, Keebler.
I think that doc needed a few good swats at his backside.
Imagine, putting a child on those kinds of meds without exhausting every other possibility.
I hate to even put this phrase here, because it gets me angry to hear the b.p. words...
The brainwashing, "training/education", of physicians by big pharma gets more obvious every day.
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