Is it possible for a neurologist to cooperate with Lyme and Co's protocols?

I can't say if a neurologist will cooperate with Lyme and co's protocols.
I guess it depends on her background, experience, and if she/he is educated about Lyme and co's.


I hope you wont be asked to have a spinal tap done.


So, are you hoping to be treated by the Internist,and not look for a LLMD?

I think overall - the appointment went really well. Not once did they deny lyme...or tell you to see a psychiatrist.
30 year Fibromyalgia diagnosis? Oh my...you must be ecstatic to get rid of that...

So the Internist is willing to treat you for a year - with antibiotics.
Did the antibiotics list show using two different ones together...or is is only monotherapy?

as far as finances go...we can only do what we can do, right?
Are you appointments with the Neurologist and Internist covered by insurance?

Maybe you could combine a few herbs (if you can afford it) to go along with the antibiotics.

I have to see where I put that protocol sheet the last time I ran across it. It's supposed to be in my purse, but more and more I'm putting things in inappropriate places. I THINK abx were listed individually, at least in the beginning, and without non abx, but he didn't discuss it with me, just walked out of the office after he saw my positive RMSF report. Brought the sheet back, gave it to me and urged me not to read it. And believe it or not he specifically pointed to one foreign word that ties with his top 3 other negligent things he's done. The word was Herxmeier. (sp).

It's wonder I survived the doxycycline. I thought I was going to die before I finished it because I knew NOTHING about detoxing last year.

On the Fibro...I suffered for year with a quack family doctor giving me quack diagnosises and quack medications (including months of prednisone!)before I went to Columbia University Hospital here in Missouri and they gave me the Fibro diagnosis. No meds from them, they pulled me off all the quackery stuff. Another med I was on was time release nitroglycerine. They sent me home with a few print-offs of flexation exercises.
I was the proverbial guinea pig and bounced around so many kinds of Drs. and medications and all the while the ONLY symptom I had in common with others given the same diagnosis was very tender pressure points. It didn't take too many years before I was fairly positive I didn't have Fibromyalgia. That's why by '92 I convinced the quack Dr.to pull blood for Lyme. 3 Pos bands of antigens but it was pooh-poohed.
Thing is, it just the Fibro 18 pressure points, but anywhere on my body if you squeezed or poked me I would practically go writhering to the floor with a pain that would linger for 30 minutes or longer.

My insurance is the beloved Medicaid. My neuro visit today cost me 50cents! The only reason I have it is because after 9 years of appeals and 3 judicial hearings, I was given Disability. Only by then I only qualified for SSI, which doesn't pay much but it was a Godsend because I was killing myself working and had to stop.

I don't mind at all advocating for myself. I do cringe at their little scribbles of "non-compliant". I think I give them good reasons in my defense.

I refer back to your Lyme101 at least every other day for ideas. There is so much, hard for me to get through my lyme skull, but I try to concentrate on one at a time. I contacted the local health food store for help but they are not in that line of herbology and don't carry even Jap. knotweed in any form. I will have to bite the financial bullet and get it online. Some anti lyme herbs supposedly grow wild here. I have 10 acres but that's where the ticks are, so I haven't ventured to look. I'm safer buying my tinctures.

I would love to get a rife machine, I've been told it will help with my shortness of breath. So much other things I could be doing, I know. I need a partner to help manage me. My bf is great for helping me by doing the physical labor here, but his mind is not capable of guiding me through this.

Thank you Pirouette, you made me feel pretty good.

I used to be a quite capable person, and pulled things off that still amaze me. (huh. I typed "me", "em") But as the years and now months go by I get overwhelmed more often and more thoroughly. I suppose with my aging and breakdown of my body it's going to stress on things it never used to and my immune system at a very low ebb.

This does hit me in waves right now, so I try to regroup and catch up as much as I can in the good moments.

As for Chinese medicine, I don't think so,I'm in a very rural part of Missouri. Though there are quite a number of Chinese restaurants in the area maybe there is one of those practitioners around. None speak good English and I don't know Mandarin, so trying to ask questions might get me the boot.

I'm fully prepared that I might not get well. Last year I was in such bad shape I got all of my affairs in order, and everything should pass smoothly into my daughter's hands should something happen.

I did something this afternoon that gave me an epiphany. I need to make multiple signs to place around my home and car that read "Don't get side-tracked" Or "Stay focused".

I'm used to multi-tasking but anymore I cannot. I absolutely break down the moment I changed mental or physical directions, I'm lost.

Pirouette said...
jm -

It's a great idea to put reminders up everywhere. That will help you feel a little less overwhelmed and I think the reminders do work.

I think we have all had those "is this all there is?: scares. But they are setbacks - not our future. It's actually a good thing that you got your affairs in order - one less thing to worry about and you can focus on your treatment and getting on with your life.

Hang in there - maybe post a new thread asking for ideas for where people obtained herbals. I know most members here are very resourceful.

-p

They are. I've made some notes and scouted around. Just today I went and picked up my car that had a $688. repair bill. The entire drive shaft had to be replaced and it had to be ordered out of state.

If I can get the Japanese Knotweed for under $30 I'll be thrilled. My next acquisition is another herb that kills Lyme. Teasleroot extract from Woodlandessence.

Here's another idea I need to enact. I have an auto emergency fund I pay into monthly out of my disability check. I have an animal emergency fund fueled by raising and selling a few African Pygmy Hedgehogs. Vet bills can be daunting.
I need to start a wellness fund for ME.

Today was the day I saw the neurologist that ordered the brain mri. I had to do the memory test thing again with a nurse first. She said I got 100%, but I'll tell you, I really had to take my time with it.
The Dr. came in and looked at the images with me and pointed everything out, and what we would see under certain conditions, like strokes. Nothing there to see, other than a large mass of gunk in one of my sinuses, and I knew that.

I did half expect evidence of brain bleeding but apparently nothing there.
She tried to find a lump on the right side of my head that was appearing in the images, but couldn't and she wrote it off as an enlarged vein (or artery?) that isn't there now. Other than a deviated septum that explains some things, that was about it. She explained that the severe muscle spasms I complained about 2 years ago, that I was having in my feet and shins at night were due to insufficient oxygen flow she said there really wasn't any reason for her to reschedule me back.

She wanted to know why I'd come there, "all this just for headaches?" I reminded her about the memory loss and confusion and I'd told her about the 'bargain' I had to make with my Dr. to receive my Flagyl, that I'd see her. Somewhere in all that I asked about getting a saliva test to check adrenals and of course she wanted to know why and how I'd come up with that, so I gave her the cliff notes of getting the RMSF diagnosis, not finding any info about it, only Lyme, ended up seeing symptoms I'd wondered about for decades and several of them added up to weakened adrenals.

The one thing I hoped to not see was her eyes glaze over when I said "Lyme" and then she really shut down when I said "internet".

The last thing she said to me was "I am not ruling out alzheimers."
I told my friend afterwards to be sure to ask for a brain autopsy when I die, and if the spirochettes are in there, sue everyone he can.

PeteZa said...
So glad the brain MRI was clear. That has to be a huge relief for you.

As for the tinctures, if you let them sit for a bit the alcohol dissipates.

I read that earlier! Good to know.

I don't know why it's not a relief for me, I know something's wrong in my head, and thought if it was Lyme like I believed, there would be some kind of evidence of inflamation or past bleeds or something? And there would be something I could do about it.

Telling me she's "not ruling out" alzheimers is more of a death sentence I can't do anything about. Am I looking at this all wrong? This 'lyme brain' is new to me. It's much more severe than my years of 'Fibro-fog' which of course wasn't Fibromyalgia at all.

Girlie said...
Don't worry about the alzheimers - your lyme-brain will get better with treatment.

I had nothing show up on my brain mri either...but I was happy.


Really - you don't want anything to show up...if there's no scarring, no inflammation...etc...that's a good thing!
No scarring, no inflammation means not likely any damage...right?

I was confused as to what should show up. But I am very relieved your brain mri was clear too! Like I've said before since becoming active here, I'm in the best company!!

I have seen a lyme literate neurologist. He just said listed to your LLMD (LOL).

So he just agreed with LLMD, but did nothing that was non -standard on his own. Was a waste of time.

Good MRI hear too......

.....and my brain was totally out to lunch during that time phase!.