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Posted 8/15/2017 11:21 AM (GMT -5)
I'm relieved as I can start treatment now.

Ok... So, I had my follow up with my neurologist today and received all my test results.

Positive for 5 of the following Borrelia-specific bands: 18, 23, 28, 30,39,41 ,45,58,66, and 93.

Epstein-Barr Anti-Diffuse 1:20(H)

Celiac Disease DQ2 (DQA1 0501/0505, DQB1 02XX) - Positive

Mycoplasma Pneumoniae Antibodies IgG Abs: 223(H)


So, they are starting my on the Jemsek Protocol:

Week 1
Minocycline 100 mg 2x day - Mon, Wed Fri
Azithromycin 500 mg 2x day - Mon, Wed, Fri

Week 2 Same as week 1

Week 3: Same as week 1 & 2 + Flagyl 2x day - Thur & Fri

Week 4 - Off

repeat
Posted 8/15/2017 11:38 AM (GMT -5)
Yeah for starting treatment. Now you know what I am going to say next..... don't forget to detox.
Posted 8/15/2017 11:49 AM (GMT -5)

PeteZa said...
Yeah for starting treatment. Now you know what I am going to say next..... don't forget to detox.

Thank you... And also thank you for the email regarding the cardiologists!!

Definitely going to detox. Already started a routine. Activated charcoal, lemon water, epsom salt bath, skin brushing, detox tea, oil pulling, and plenty of water.
Posted 8/16/2017 3:45 PM (GMT -5)
Well, haven't even taken my 2nd dose of my first day on antibiotics and I feel like I'm going wacko. I know this means die off, but DANG! It's heavy in the brain.

What is the best method for brain detox? Or should I do the same thing as a regular detox?
Posted 8/16/2017 6:09 PM (GMT -5)
Yes, keep up with the regular detox.

Are you taking a binder?


Particularly for the brain:

- Nutramedix Pinella

or

- Jernigan's - Neuro-Antitox II - CNS/PNS
Posted 8/16/2017 7:52 PM (GMT -5)

Girlie said...
Yes, keep up with the regular detox.

Are you taking a binder?


Particularly for the brain:

- Nutramedix Pinella

or

- Jernigan's - Neuro-Antitox II - CNS/PNS

That's what I'm looking for. Thanks again Girlie.

I thought I read somewhere that you need to use something other that traditional detoxing methods to detox the brain.

What is the recommended dosage for the Pinella tincture?
Posted 8/16/2017 8:10 PM (GMT -5)
Burbur pinella dosage is 20 drops, as needed
Posted 8/16/2017 8:12 PM (GMT -5)

Purrrsiankitty said...
Burbur pinella dosage is 20 drops, as needed

Is Burbur Pinella better than just Pinella?
Posted 8/16/2017 8:40 PM (GMT -5)

Hoagie said...

Purrrsiankitty said...
Burbur pinella dosage is 20 drops, as needed

Is Burbur Pinella better than just Pinella?

Burbur is a 'general' detox and Pinella is a brain and nerve cleanse.

A binder - such as Activated Charcoal flushes out toxins out of the digestive tract - so they aren't reabsorbed.
Posted 8/17/2017 7:55 PM (GMT -5)
I was just reading a bit on the neuro symptoms I am experiencing and wondering if the meds in the protocol I am using cross tyhe blood-brain barrier.

Anyone have knowledge on these meds?
Posted 8/17/2017 8:50 PM (GMT -5)
Minocycline is one of the better abx to cross blood/brain barrier.

It can take awhile to get used to...

dizziness, off-balance, etc. because of it's ability to get to the brain.
Posted 8/18/2017 11:44 AM (GMT -5)

Girlie said...

Hoagie said...

Purrrsiankitty said...
Burbur pinella dosage is 20 drops, as needed

Is Burbur Pinella better than just Pinella?

Burbur is a 'general' detox and Pinella is a brain and nerve cleanse.

A binder - such as Activated Charcoal flushes out toxins out of the digestive tract - so they aren't reabsorbed.

I just wanted to add that, while Activated Charcoal is a good GI detoxifier, it's also a blood detoxifier. It's still used in some hospitals for certain overdoses. (www.mayoclinic.org/drugs-supplements/charcoal-activated-oral-route/description/drg-20070087).


But, I originally wanted to stop by and say congratulations to you, Hoagie on getting your test results back and having them be so clear with those infections! Now, time to tackle it all. Best of luck!!!!
Posted 8/18/2017 9:22 PM (GMT -5)

Girlie said...
Minocycline is one of the better abx to cross blood/brain barrier.

It can take awhile to get used to...

dizziness, off-balance, etc. because of it's ability to get to the brain.

Thanks Girlie. This actually happened to my tonight when I took my evening dose. Did not happen the first day of treatment, nor this morning, but tonight I got an attack of neuropathy on my left side and got quite dizzy.
Posted 8/18/2017 9:25 PM (GMT -5)

Traveler said...

Girlie said...

Hoagie said...

Purrrsiankitty said...
Burbur pinella dosage is 20 drops, as needed

Is Burbur Pinella better than just Pinella?

Burbur is a 'general' detox and Pinella is a brain and nerve cleanse.

A binder - such as Activated Charcoal flushes out toxins out of the digestive tract - so they aren't reabsorbed.

I just wanted to add that, while Activated Charcoal is a good GI detoxifier, it's also a blood detoxifier. It's still used in some hospitals for certain overdoses. (www.mayoclinic.org/drugs-supplements/charcoal-activated-oral-route/description/drg-20070087).


But, I originally wanted to stop by and say congratulations to you, Hoagie on getting your test results back and having them be so clear with those infections! Now, time to tackle it all. Best of luck!!!!

Thanks a bunch Traveler!!

I'm such a worrier. I was waiting for the Lyme test result so I could rule out MS. And now that I finally got it, I still feel there may be a possibility I may have MS as well.... But that's me. I worry about everything.

And thanks for everything.

Post Edited (Hoagie) : 8/18/2017 8:30:06 PM (GMT-6)

Posted 8/18/2017 10:21 PM (GMT -5)
So glad to hear that you're starting treatment, Hoagie!

How often do you guys take activated charcoal? My doc says not to use it everyday because it can limit nutrient and medication absorption.
Posted 8/18/2017 11:52 PM (GMT -5)
Agent - I take it daily (except when I forget).

It needs to be taken a couple hours away from everything that you don't want swept out with it.

If you take your abx at 5;00 pm and eat at 6:00 - then you can take the charcoal at 8:00 pm and don't take anything else until 10:00

It ushers out everything in the digestive tract with it - that's the reason for the two hour window on either side.

Drink lots of water - I take 1 1/2 glasses with it.
Posted 8/19/2017 4:20 AM (GMT -5)
you have antibodies against gluten, you should stop eating gluten products. this should help your gut heal and better cope with the antibiotics treatment
Posted 8/19/2017 10:26 AM (GMT -5)
Celiac Disease DQ2 (DQA1 0501/0505, DQB1 02XX) - Positive

Is that the only test you had for Celiac diagnosis? Having the genes doesn't mean anyone has Celiac.

"30-40% of the American population has one or both of the genes, but only 1 in 133 (latest estimates), so less than 1% has Celiac. Genes does not equal Celiac."

You really should be tested for the antibodies. (although the 'gold standard' is a small intestinal biopsy)

Have the Tissue Transglutanimase Antibody test done (tTGA) and see what it shows.
Posted 8/19/2017 5:49 PM (GMT -5)

Girlie said...
Celiac Disease DQ2 (DQA1 0501/0505, DQB1 02XX) - Positive

Is that the only test you had for Celiac diagnosis? Having the genes doesn't mean anyone has Celiac.

"30-40% of the American population has one or both of the genes, but only 1 in 133 (latest estimates), so less than 1% has Celiac. Genes does not equal Celiac."

You really should be tested for the antibodies. (although the 'gold standard' is a small intestinal biopsy)

Have the Tissue Transglutanimase Antibody test done (tTGA) and see what it shows.

Priceless info. My doctor didn't fully explain I guess due to use discussing the EBV and Lyme diagnosis. He stated that I wasn't full on Celiac but I was on the spectrum.
Posted 8/19/2017 5:56 PM (GMT -5)
Having the antibodies test is helpful. If it shows hight antibodies - then you know for sure that you have to be very diligent about cross-contamination when on a gluten free diet.


Do you have symptoms when you eat gluten?

I would go ahead and have the Tissue Trans-glutanimase antibody test done.
Posted 8/19/2017 6:02 PM (GMT -5)

Girlie said...
Having the antibodies test is helpful. If it shows hight antibodies - then you know for sure that you have to be very diligent about cross-contamination when on a gluten free diet.


Do you have symptoms when you eat gluten?

I would go ahead and have the Tissue Trans-glutanimase antibody test done.

As of the last month, I get really foggy headed, kinda like an uncomfortable buzzing feeling whenever I eat grain at all. Doesn't even have to be gluten.

I will check with my doctor regarding that test.


BTW, how have you been Girlie? Any progress?
Posted 8/19/2017 6:15 PM (GMT -5)
Not since I started the Babesia treatment with Mepron...

Well, maybe it's helped with my tinnitus - most days it is gone now - it was subsiding somewhat with bart treatment so am not really sure which treatment is responsible.
Posted 8/19/2017 6:17 PM (GMT -5)

Hoagie said...


As of the last month, I get really foggy headed, kinda like an uncomfortable buzzing feeling whenever I eat grain at all. Doesn't even have to be gluten.

I will check with my doctor regarding that test.


So, if you get those symptoms with non-gluten grains - then that's not Celiac.
Posted 8/19/2017 7:58 PM (GMT -5)

Girlie said...

Hoagie said...


As of the last month, I get really foggy headed, kinda like an uncomfortable buzzing feeling whenever I eat grain at all. Doesn't even have to be gluten.

I will check with my doctor regarding that test.


So, if you get those symptoms with non-gluten grains - then that's not Celiac.

I got my 2nd MRI resu lts back this morning. This time I had an MRA,which came back ok. The MRI I had this time was with contrast. It says : Enhancing lesions seen in the mid brain with surrounding FLAIR signal hyperintensity likely indicative of edema.

I went and picked up the results from the clinic myself. Need to have my dr look it over to see what he says.

Anyhow, I read that grain can cause inflammation and maybe this is compounding what is going on up there. The MRI was taken on the very day i started abx. Could this be a potential cause of the edema going on in my head?
Posted 8/19/2017 8:02 PM (GMT -5)
I think it's the infections and also the toxins from the infection dieoff.
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