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Posted 4/21/2017 7:01 PM (GMT -5)
Hi there, I thought I just had to post about my visit to my GP that I had this week.

Before I was diagnosed with Lyme and co-infections I couldn't sleep and I had horrible anxiety. I took Klonopin for probably 15 years and Ambien for at least 10. As of right now, I don't need to use Klonopin very often which is wonderful. I think my anxiety was a result of Bartonella.

Prior to my diagnosis, I hadn't slept the entire night for years and that was with Ambien and OTC sleep aids and alcohol. I know not a good thing but I was desperate for a good nights sleep. I now can fall asleep and most of the time can sleep thru the night without any sleep aids or alcohol (well no alcohol at all at any time)

Anyway, my GP was looking through my medical records and she noticed I hadn't had Ambien refilled in over a year. I told her that I had tried to get a refill but her office never called me back (you have to get a paper script) and then it was a holiday weekend. So by the time I got thru the withdrawals I decided I was not going to go back to that again.

She looks at me and said, Ambien is addictive and you can have withdrawals from it?? I was like what??? I said yes it is and you shouldn't just stop taking it after ten years. Here's a little blurb on it: It can actually be dangerous to stop taking Ambien suddenly. Doctors recommend gradually tapering your dose over weeks or even months, depending on how much you've been taking. Stopping suddenly actually makes it harder to quit, due to the potential severity of withdrawal effects, including induced seizures.

I was pretty sick from not taking it. I couldn't keep food down, had the sweats, shaky and I don't remember what else. On top of the Lyme symptoms, it was not a fun weekend.

She told me she had Lyme but got lucky and was diagnosed quickly and recovered from it. Then she said last weekend she was cutting wood and got a tick embedded in her. She had her daughter take it out. I asked if she saved it and said no because she got it all out. I'm not sure what difference it makes if you get the entire tick out to have it tested. I guess she can prescribe herself some doxy but I just wonder what she is telling her patients.

After my experience with my last LLMD and now my GP, I'm not sure how you know who to trust.

Just had to vent. Thanks for listening.

Hope you all have a great weekend.
Posted 4/21/2017 7:18 PM (GMT -5)
I've given up trusting them.....even if I tell them I do.


They either prescribe things that nearly do me in, or not prescribe things that could have added a few more years to my life, or they forget about me entirely and don't check my lab work. And even forget that I need lab work.

If I'd wanted to go to school and study to become a physician, I would have. When I was younger and in better health to learn all this.

Now we have to pretty much do the same thing anyway, just to keep on top of the ones getting paid to take care of us.
Posted 4/21/2017 7:50 PM (GMT -5)
Yup yup losing faith in the medical community. Thank God for all the doctors on this forum.

Ambien...Ah yes, I take the crap and know what I have to do to get off it. I'm down to 2.5 mg.

Avoid it if you can, but we need to sleep.
Posted 4/21/2017 9:16 PM (GMT -5)

Purrrsiankitty said...
Yup yup losing faith in the medical community. Thank God for all the doctors on this forum.

Ambien...Ah yes, I take the crap and know what I have to do to get off it. I'm down to 2.5 mg.

Avoid it if you can, but we need to sleep.

I really don't advise getting sleep my way, particularly you Miss PK with tummy problems already, but if I can't sleep I sit there in bed and stuff carbs down my throat. Usually crackers but I suppose a carb that hasn't been borne of weird lab created additives would do the trick.

The crash comes pretty quickly.
Posted 4/21/2017 11:29 PM (GMT -5)
Traveler +girlie =20 whitecoats
and jennydf and chx arise are getting to be quite knowledgable
i would trust pirouette a lot further than any duck
Posted 4/22/2017 3:13 AM (GMT -5)
You should see the looks I get when I talk to a physician. I had a neurologist tell me a few weeks ago "I don't know what you're talking about." They basically try to avoid me or change the subject.
Posted 4/22/2017 5:26 AM (GMT -5)
Yes we are very fortunate to have the knowledge that is offered here on this forum. It is incredible and it is just sad that regular MD ,specialists and institutions of medical learning don't take the time to educate themselves on this plague that is and will be inflicting many others this year and in the future.
Posted 4/22/2017 8:50 AM (GMT -5)
After spending a year on this forum, and another one lurking it, the only reason for my GP and LLMD are to prescribe the meds I request, and I take care of the rest.
Posted 4/22/2017 10:24 AM (GMT -5)
That's why I can't go to doctors around here - I actually know more about my issues than they do - and why I've chosen to go back to school. Not easy after all I've been through with Lyme and company, but I still do a LOT better at treating myself than any doctor I've seen in my 53 years - other than the practitioner that helped me heal the first time - she's my inspiration!

When my hubby was infected with Lyme, I sat there and explained things to his NP (who is the best in the area) so that he would not only get the meds at the doses he needed, but for as long as he would need them. She worked "around the rules" and he was treated appropriately. Unfortunately, I doubt she will take that knowledge and use it to treat others appropriately though. Everyone here is in total denial about Lyme being here, so she is putting her job at risk by treating people properly. Now that's a sad statement about the medical community.

I only suggest that you learn how to do your own research. Everyone is different and we do need to understand as much as we can about what we are doing - no matter what form or type of medicine or modality you choose to use.
Posted 4/22/2017 12:11 PM (GMT -5)

Mustard Seed said...
After spending a year on this forum, and another one lurking it, the only reason for my GP and LLMD are to prescribe the meds I request, and I take care of the rest.

Ive felt that way a few times, too MS.

My LLND really missed the boat in my case by not starting me on the Bart treatment until a year after seeing him..

But, I do appreciate the meds...lol

AND - I need to say he has healed many people.....so I am grateful for that.

I still recommend him - he is still the best we have and certainly most knowledgeable here.
Posted 4/22/2017 12:57 PM (GMT -5)

bluelyme said...
Traveler +girlie =20 whitecoats
and jennydf and chx arise are getting to be quite knowledgable
i would trust pirouette a lot further than any duck

I was so blurry-eyed this morning after a rough night, that this didn't even compute!!!

What a wonderful thing to say, Blue!!! Thank you!!!! It's amazing what information we can learn and help others with!!! And I say this after recovering from late stage dementia symptoms with my first set of infections! Healing can happen!

And, let's not discount your knowledge on so many other things!!! If I wasn't allergic to bees so much, I'd be emailing you for information and help!!! Or if I could afford Rife or some of the other things you do.
Posted 4/22/2017 1:02 PM (GMT -5)
Another fantastic discussion.

I had some bart rage surging yesterday, got so pissed off at a couple posts I read about MD experiences - luckily, I wasn't able to sit at computer most of the day and this helped the flare pass. I know I'm making major progress because I am now much more aware of these flares than ever before. And they are smaller.

But anyway, I have stated this several times before - this forum saved my life. Literally, completely.

Traveler has spent years building this forum into the lifeline that it is, and with Girlie they expertly run a VERY tight ship here. It's 100% volunteer and requires a tremendous amount of dedication and talent. But I don't think people realize how much work it really is. Also possible because they've found some other great mods who cycle through the team. This isn't a village - it's a surgical team ;)

I'm also incredibly fortunate to have landed with an exceptional LLMD and also a great Lyme-literate nurse (now working w/ an integrative DO). But I bring in a lot of information to them that I've researched or learned here and after 4 years, they trust me and trust my instincts. And I know I am in the way teeny tiny minority of people suffering this Lyme experience.

(btw - my LLMD is taking patients again - cash only)

The medical industry is in upheaval, which is growing worse. I don't blame the MDs entirely, resisting the jerk-around by the Lyme powers-that-be is the least of their heavy burdens. But I do blame some for a general lack of effort and professionalism. I can even forgive them for forgetting compassion. But "doing no harm" is their entire purpose. Many fail.

The best thing we can do for ourselves, for those we love, is to remember that we're in charge, we are capable of learning and of far more than we give ourselves credit for, and all of our medical professionals work for us.

-p
Posted 4/22/2017 1:03 PM (GMT -5)

bluelyme said...
Traveler +girlie =20 whitecoats
and jennydf and chx arise are getting to be quite knowledgable
i would trust pirouette a lot further than any duck

Well, nice to be grouped with Traveler - but I can only wish to have her knowledge...

and agreed on jenny, chicken, pirouette...yourself included Blue - and others not mentioned - lots of knowledge and support here.
Posted 4/22/2017 8:36 PM (GMT -5)

Georgia Hunter said...
You should see the looks I get when I talk to a physician. I had a neurologist tell me a few weeks ago "I don't know what you're talking about." They basically try to avoid me or change the subject.

This thread is hilarious which makes it sad actually. I would pay to be a fly on the wall when you do this to a doctor with all the money and time they have spent training to be a drug dealer.

The last time I saw a doc in the states he pulled out one of those antiquated mallets and did the reflex test by my knee.

"Yes that muscle still works, doc, now about the pain......"

I've always equated that to a parlor trick for some reason.

I asked him do you ever learn anything about anyone's condition from the reflex test? He tried to sound convincing that it is a useful test. I am not convinced.

No doc I have spoken to here believes mold can cause problems. The Panamanians are immune to it, probably due to high exposure as children. Many of us gringos get allergic responses. I got my *** kicked by it. I wish I would have figured it out sooner.

I'll take you guys over any white coat any day. I dont know what I would do without all of you. I am so lucky to have you guys.
Posted 4/22/2017 8:46 PM (GMT -5)

ChickenArise said...
I would pay to be a fly on the wall when you do this to a doctor with all the money and time they have spent training to be a drug dealer.

BINGO.

Funny - last couple times I went to new docs they banged the knee thing and I had no reflex. Neither said a word.

So I pointed it out - "doc, I'm sure you noticed I had no reflex, so what does that mean?" They both said - oh, probably nothing. I asked "so why do it?"

No response. Dirty look. Unappreciated logic an humor.

I already had a career - spent a lot of blood, sweat and tears honing my craft. And now I have to become my own health expert while paying others to play the part?

Ugh. I want ALL. MY. MONEY. BACK.

-p
Posted 4/22/2017 9:35 PM (GMT -5)
That's what I say Pirouette! I'm disabled now. Even if I weren't I'm past retirement age.
What kind of shape are we in physically and mentally to have to be our own specialist?
Crimminy it's asking a lot to have to learn all this!

ETA: And have to run around jumping through all the hoops some of which are very painful, to please the medical community for what few crumbs they throw our way that we can actually use.
Posted 4/22/2017 9:53 PM (GMT -5)
Totally agree jm - totally.

My brain is out of sync past couple of days.

I meant to also comment on the fact that MDs generally learn most everything they know about the (tens of thousands?) of drugs available from pharmaceutical representatives. These reps have NO medical or scientific training. They are hired out of college based on attractiveness (first and foremost) and personality. I know this first-hand as I had college friends follow this path and make a TON of money.

SO, when your (primary) knowledge of a drug you're prescribing comes (primarily) from the peddlers of it, your knowledge will be limited and tightly controlled.

We all know that modern healthcare is allopathic in nature (based on managing symptoms more so than addressing underlying dysfunction). And this is accomplished by prescribing meds. How in the H.E.L.L. does this help improve our health?

There are a few good MDs out there - and I think the younger generation is probably doing a better job but they're also the newly indoctrinated. You just have to get VERY lucky and know how to find information and have the patience and time to learn it.

-p

Post Edited (Pirouette) : 4/22/2017 8:58:26 PM (GMT-6)

Posted 4/22/2017 11:15 PM (GMT -5)
Thanks trav,girlie pirouette . Im up n coming .i once said if i could start a center for tx and r&d ,i would hire the lot of you...georgia i would love to get you and marnie from lymenet, alan macd and eva sapi in a room with dr k,dr j and maybe ginger s. If i crap gold bricks i would have yolanda ,daryl hall and the euro billionaire fund blue and nqa's lyme centre for almost excellence .

i made a short list of what i have aquired knowledge wise in the last to years as far a lyme n co,
pharmacology,herbalist ,curandero,apitherapist,microscopist,pathologist,functional medicine including alt ivs ,methylation, snps, nutrition, electroherbalism ,parasitology and that not counting the emotional and spirtual stuff like eft ,splankna and meditation /qigong

Good thing lyme has taught me redirection and forgiveness to i ran into the id duc that refuse to treat my positive test,at the grocery store - and after some advice from my friend that was with me i chose not to confront and ream him a new one verbally and literally
Posted 4/22/2017 11:22 PM (GMT -5)
excellent post blue -

re: your ID doc run-in.

Don't need to confront him publicly. Simply write him a letter and let him know how his ignorance is unsupported by the CDC and explain why many states now require MDs explain to patients that even a negative test is meaningless for dx. And then let him know all the things you've done to heal. And then tell him that you'd love to share your knowledge with all the other Lyme patients he has broken his hippocratic oath and turned away.

Don't mark it "private" - you want his staff to read it.

-p
Posted 4/23/2017 2:27 AM (GMT -5)
Great suggestion pirouette. .i wonder if it would sway his old au***erways.wish i was as good of a writer as you...

pss.when my llmd asked why i hadnt tried the dapsone i showed him the chemical structure being so close to sulfa thay i was going to risk it..i guess they get bizzy to make mark of nuances
Posted 4/23/2017 4:38 AM (GMT -5)

Pirouette said...
Totally agree jm - totally.
My brain is out of sync past couple of days.
I meant to also comment on the fact that MDs generally learn most everything they know about the (tens of thousands?) of drugs available from pharmaceutical representatives. These reps have NO medical or scientific training. They are hired out of college based on attractiveness (first and foremost) and personality. I know this first-hand as I had college friends follow this path and make a TON of money.
SO, when your (primary) knowledge of a drug you're prescribing comes (primarily) from the peddlers of it, your knowledge will be limited and tightly controlled.
We all know that modern healthcare is allopathic in nature (based on managing symptoms more so than addressing underlying dysfunction). And this is accomplished by prescribing meds. How in the H.E.L.L. does this help improve our health?
There are a few good MDs out there - and I think the younger generation is probably doing a better job but they're also the newly indoctrinated. You just have to get VERY lucky and know how to find information and have the patience and time to learn it.
-p


I learned medicine just like they did and it takes getting really sick and not having any answers before you see the other side of the fence. When you run out of options, you either learn to create new options or fold up shop. I'm not a quitter.
Posted 4/23/2017 6:03 AM (GMT -5)
GH you went to med school? I was wondering what your background is
Posted 4/23/2017 6:11 AM (GMT -5)

Psilociraptor said...
GH you went to med school? I was wondering what your background is

Pharmacy school, we spend more time on the meds than they do and we don't get the diagnostics with only one year of therapeautics.
Posted 4/23/2017 9:55 AM (GMT -5)
I am sure there are wonderful doctors out there, but my ex-stepdad was a GP and, even before you get into the lyme issue, he was as much use as a dead hedgehog in bag :P

Give me a Traveler et al any day of the week!!
Posted 4/23/2017 10:31 AM (GMT -5)
I agree that it's a very sad state of things when we have to learn just as much as a doctor in order to get the treatments we need. If we can learn it while so very ill, they really have no excuse.

I did want to say something about the letter writing - I was once involved with a group that wanted to write letters to doctors that misdiagnosed them and derailed treatments/healing -until I found out that the only thing they wanted to do was to basically alienate those doctors from the Lyme community by just yelling and cussing said doctors. That's not how we bring doctors to "our understanding" though. Honey catches more flies than ____.

And, I can't ignore all the wonderful thoughts and words that are being said here about me. Thank you all. I am humbled (and embarrassed), but grateful that my efforts to share have helped and that I've been here to learn from you all as well. Thank you all.
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