Just a quick question. You don't have to make a long reply------avoid the hasssle factor!

I'm going to the new ILADS LLMD the end of the week and will request testing for Bartonella.

She automatically tests for mycoplasmas & I'll ask about Erlichiosis & Babs, too.
But for now the lab work will be by LabCorp.

(I know, I know, Igenex is the best, but we've got to get my husband tested & treated. So we got to spread the money around-----for now.)

Here's my question:

Just off the cuff, does Bartonella cause the brain to vibrate especially while on neuro meds like Rocephin, Flagyl, Mepron -----even rarely on Zithromax?

Sidenote: I've done a bunch of research now on Bartonella both on Lymenet & internet.
Researched out now------whew!

The first time this happened was on Rocephin. I woke up from a nap so I hadn't drunk any water in a few hours.

I had the horrible sensation that my brain was literally vibrating. I pushed the water to dilute the die-off.

That helped. Also, I do have humming on same meds from my brain or left ear------however you want to look at it it's still originates in the brain.

I know you can't give me an exact answer, but sometimes I think some of you guys could do a great job being my doctor.

Just feeling underdiagnosed & undertreated after reading this board since July.

My neuro symptoms have really never been addressed in a heavy-duty way.

Treatment:
Zithromax---- initial bacterial die-off
Rocephin 180 l GM inj./Flagyl
Mepron/Zith ----Babs
Zith/Flagyl

Any tips would be appreciated.

I'm screwed up today, but I will try to answer promptly.

Thanks for your time,
Jan

 

I just sent you an e-mail. So glad you said "hi".

Let me know if you didn't get it.

Talk to you tomorrow.
Jan
 

let your llmd know this...

Lisa
 

I feel much better today. I stopped ABX for 2 days to use suphur (NAC) & it threw me into pain. That's how I check to see if something is still hanging around the back of my head & neck. Well----it is.

Lisa:

Thanks for your kind reply. That helps me start to put some of these symptoms together & figure it all out.

I didn't want to go in there looking like a total idiot.

Hope you're doing well. I always try to read your posts when they come up.

Chainsaw:

Thanks for your input.

You have been tested 12 times for Bartonella---------gosh that's a lot.

I'll call St. Lukes in New Bedford about lab testing specifics.

Plus, I'll read that article about the Van Sickle girl & the one by Dr. E. in New Jersey.

This will give me something more to go on, too.

Did your Dr. ever try Neurontin, the anti-convulsant? I tried it, but didn't stick with it. You have to start low & work up to very high doses.

For me, it was just easier to revert back to Klonopin because I'm familiar with it.

If I take the wrong brain med, I'll fall off the chemical highwire. It can really mess me up for days.

Again, thanks to both of you for your time.
Jan

[This message has been edited by RECIPEGIRL (edited 12 October 2004).]
 

I'm curious about your new LLMD too!
I'm totally satisfied with Dr.M but it's nice to have another recommendation for folks

Thanks and Take Care.....Terri
 

SO.. whew, I think its working.

You gotcha some body earthquakes too? Deep down tremors that you have no clue where are coming from?

I had that! Rifampin toasted it right in the rear end, so I believe for me, that was DEFINATELY bartonella.

I still believe though that this awful head and neck pressure is bartonella, as it did seem to get better on a new round of rifampin rcently, but is getting worse again.

I have a girlfriend of mine that vibrates like CRAZY and I've always kinda thought... Bartonella?

It took about two months on rifampin for this symptom to go away. I DID lose the vibrations up through my feet and into my leg, but lately

THAT is back.

Bartonella rages are of course, ALWAYS the best

Email me if ya like.
 

I'll e-mail you the info in a little bit.

I've wanted to say hi to you before-----seeing your close by.

Thanks for the reply.

COL:

Thanks for not giving up on making the post GO & having to redo it. I really wanted to hear your opinion.

I've always wanted to pick your brain.

Of course, I'm thoroughly entertained when I read your posts.

How can your brain be bad & you can still write such succinct & pithy replies?

My wordiness is one my problems.

Half the time, when posting a reply, I have to look down below at the person's message "again" just to see how to spell the person's name OR who I'm talking to.

Bad short-term memory. I have notes to myself taped in my kitchen, at computer, on bathroom mirror.

I use to live from note to note. It has gotten some better.

Well, from what you've said I must be on the right track. I'm so sorry you have to have this in your feet & legs. How can you stand it?

I hope you are better overall. You've been through so much lately. I admire you for holding it together.

A sick mom taking care of sick children is unfathomable. Not fair.

I'm not that strong.

Anyway, the vibration is very scary stuff. Feels like a tuning fork virating in your head. You KNOW something is way wrong.

For me, it's while herxing on brain meds.

My husband & were certain Dr. H. had said he wanted to test me for Bartonella. I even told my mom I was being tested.

Then, when I got the Bowen results, I felt like an idiot because it doesn't even test for Bartonella.

I was totally baffled.

He then gave me Mepron/Zith for mild Babs symptoms which seemed to suddenly pop up after a year of Lyme treatment.

Well, getting ready for Austin is overwhelming me & have to make lists to get ready down to packing car, every detail. Or else, I'm afraid I'll leave the front door open???

It's a tinsy 3 hour trip, but the preparation is what throws me.

I'm so use to the long, journey to Houston. It's not THAT far at all, Houston was bad, because I couldn't sleep very much the night before.

I'm a complete zombine on no sleep & I would be half dead when I reached the Doctor's office.

I was just afraid I would oversleep or something and miss my appointment.

O.k., if you're still reading -----
thank you very much for helping me.

Thanks for your time.

I'll let you know what happens.

Take Care All,
Jan
 

------------------
Julie G.
___________
lymeinhell
 

Well its a good thing you wanna pick my brain! It definately wouldnt take much effort as there is not much up there.

There was a time when I was a writer, in fact a non paid published one but hey, I'm still a writer.

My brain doesn't work. Trust me. My brain ping pongs around more than my son's favorite YuGiOh games.

One thing I do not have though, fortunately, is brain fog. I USED to! I used to have brain drunk quite often, the only thing that has royally flanked the patience department is memory.

I find myself forgetting who I am talking to,

occassionally banging my head and saying "think, think, think". Etc. More often than not, when Im herxing though, I DO get brain fog, and drunk..

and I just started on Mepron again last night so I have no clue what I'm saying.

Oh well, 10-4. JulieG, I dunno where that article is. Hmm, ANyone?

About my leg, the vibration and buzzing doesnt hurt BUT the bottom of my left foot? Ha! I usually limp, more often than not. Now THAT hurts. Classic bartonella. Ick.
 

I'm working on finding that article. I'll post link as soon as I find it.

Jodie,

Oh, so you are a writer! O.k.------I understand now.

You need to write a little booklet on Bartonella --------like you have nothing else to do! LOL

Truthfully, it's hard finding real-life experiences on the co-infections and patients want that the most.

Thanks,
Jan
 

There is a Dr. E, female, his wife. I right? I think I am.
 

I've got the citation, but can't access it. Restricted journal sites.

TITLE:

Concurrent Infection of the Central Nervous System by Borrelia burgdorferi and Bartonella henselae: evidence for a novel tick-borne disease complex.

Arch Nerol 2002 Sept: 58 (9) 1345 - 7

This is like breaking into Ft. Knox.

Jan
 

You need to double-click on Dr. E.'s name to show abstract.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1155 9306&...
_____________________________________________

Newspaper Article about Dr. E. and Bartonella

Scroll down to "Hope for Those with Lyme Disease"

http://www.geocities.com/ldbullseye/bullseye.html

[

[This message has been edited by RECIPEGIRL (edited 12 October 2004).]
 

I can't locate the entire article. I even went to Free Medical Journals where they offer 'select' free journal articles if you sign in as a guest.

I did sign in. I can get the current October 2004 Arch Neurol.

But it would not let me access this 3-year old article. It said restricted----have to purchase.

I'm still looking. They have certainly worked hard to bar this from the public domain?

Jan
 

quote:

---

Originally posted by TheCrimeOfLyme:
Dr. E the male in NJ is sadly, deceased

There is a Dr. E, female, his wife. I right? I think I am.

---

No, the Dr E that you want is still around and he is in Hunterdon County , NJ. There was a husband & wife team in Central NJ -- that is the female Dr E. Her husband
(Dr. John Drulle) has passed away from Lyme
 

Thank you very much for taking time to reply to my post.

Good News!

I got that Bartonella test done at the LLMD/FNP (ILADS - family nurse practitioner)on Friday in Austin.

I made sure to tell her about the brain vibration so it wasn't overlooked in the first time visit. She was seeing my husband too, so it was a little rushed for me.

I don't know how many strains she tested for. The test is from LabCorp for now. I have no idea if she treats co-infection with a negative test or not. We'll see.

Finally, I got the B12 injections I was not able to get at the other LLMD. She even gave me 1 cc daily. How great is that? My nerves need this so much with all the head pain I've had over the years.

I'm upside down in my sleep pattern; easier to sleep in the day than at night. Dr. B.'s Guidelines says B12 helps this------so I'm really hoping it'll eventually help a little.

The B12 is given with an insulin needle in the arm & it didn't hurt at all. The needle is so slender compared to the Rocephin injection in hip.

My husband gave me the first B12 shot & reality will set in tomorrow when I inject myself.

I purchased the B12 & insulin syringes at Costco cheaply. You don't have to be a member there to use their pharmacy, but it's charge or cash only for non-members.

(Anyone can go there-------I think because it's federally regulated.)

I also got RX Amantadine for Dopamine for my brain & to help absorb ABX which I was not able to get from the other LLMD, either.

I also got Doxy tablets for my brain which the pharmacy had to special order which is the usual case for this.

She wanted to prescribe Zithro, but I just told her I had plateaued on it & it did nothing for neuro symptoms. So she gave me the Doxy.

These changes may help me turn the corner in my treatment; especially if she decides to try Rifampin for my brain.

The night before my appointment, I did manage to type up an easy to read, one-sentence symptom list of my brain symptoms to be made a part of my medical record and dated it & signed it.

I never can seem to paint a picture in the doctor's head of how I live so maybe that will help. I also wanted this documented if I need to apply for disability.

Of course, I forgot it in the car and had to go get it.

We were still pressed for time in making the appointment and by the time I got there, the paper work looked like a mountain to me. I didn't know if I was coming or going.

Anyway, I'm resting today; I've overdone it.

Thanks again.
Jan

 

BTW, when I first started Rifampin, I had the brain buzzing and leg vibrations for at least 3 mos. That's thankfully long behind me know.

------------------
Julie G.
___________
lymeinhell
 

could you email info please?
thanks,
Lisa
 

Lucky you... Vitamin B12 shots!!! I've been trying to get those for years now.

I see Dr. F in N.J. thay say she's the Babs queen? I don't know.

Anyway, when I mentioned to her about the B12 shots, she pretty much ignored it .

Maybe I'm not redy yet for them. I need like an additional IV to go along with what I'm om now...

I say additional IV, For yeast...Is there an abx out there for Yeast? My yeast problems or beyond just a pill!!!

I had to buy maternity jeans, cuz my stomache bloats out so bad enough to need maternity clothes.

I feel this isn't your normal or average yeast problem one has.

So, is there IV drug one uses to KILL this nasty yeast? ( Clafren)

Anyone have any experience with this or could direct to some of those grat articles you guys were braggin about

Hope to bet an email from you Jan with an update...Jamie

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

 

I just started to recover tonight so I'll e-mail you in the morning. I'm behind on everything.

I did a quick answer on Lemonhead's topic about yeast infection you might like.

I'm also going to write you back with some ideas for you. Really, I haven't forgotten you.

Talk to you later,
Jan
 

Still sick but, the BArt tests are now coming back negative so, we can only hope.

Sherry

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

 

Hi. So good to hear from you.

Thanks for the information. That chloramphenicol is suppose to be heavy duty. Glad you're testing negative now for Bart though.

I don't know what my results are. Their office is flooded with Dr. H. patients & they'r so, so busy.

I need to e-mail you. Doxy threw me in bad head pain. I thought I was passed all that. Evidently------not.

I want to find out how you are & if you've been to your new LLMD.

I hope everyone's doing o.k.

Talk to you later.

Jan