Update on my progress

Alright that makes sense. Well that narrows things down. I guess Lyme is no longer a key player and it's all Bartonella for me. You're on Rifampin and Biaxin and what else? I asked about Bactrim - my doc says people can have allergic reactions to it and since my MCAS is pretty bad he was hesitant.

Girlie - remind me, do you travel to see Dr J or are you a local?
I have a great PT I’d recommend to anyone in the DC area who does Integrative Manual Therapy. Your scapula issues sounds just like mine and it’s getting better with time using this type of PT. Something to look into ... it’s worth it’s weight in gold and I was a previous believer in fascia before but now I’m kinda a fan girl. LOL

jb1994 said...
Alright that makes sense. Well that narrows things down. I guess Lyme is no longer a key player and it's all Bartonella for me. You're on Rifampin and Biaxin and what else? I asked about Bactrim - my doc says people can have allergic reactions to it and since my MCAS is pretty bad he was hesitant.

Who... me?

I was prescribed bactrim when I first went to the J clinic - Within several days I got some welts - one on my chest area and another on my leg. I had already read up on the TENS / SJ Syndrome and I freaked out - called the clinic and sent them photos - they said they didn’t think it was anything to worry about - but they agreed to change my med.
This was before Bart treatment -

I am now on Rifabutin , Ceftin and minocycline

jb1994 said...
lol Charlie the only thing you can't tolerate is gluten, consider yourself lucky, it's one of the few things I can tolerate and it's terrible for me haha. Makes me bloated but at least it doesn't make my body go crazy.

No kidding, lol, interesting. Goes to show how everyone's body chemistry is different. I'm just glad I didn't get the alpha gal allergy...

8 years ago I did get a reaction to cheese, milk, yogurt and some different foods. Treatment has helped heal my gut and I tolerate most food very well now, but I still I suspect I still have leaky gut and SIBO because I still can't handle gluten and get an inflammatory response. Georgia Hunter has opened my eyes how SIBO and leaky gut can still be quite evident even near the end of treatment even when I'm out running, exercising, yet still dealing with Bartonella.

Yeah, it really is unhealthy anyways, considering the amount of glyphosate and carbs. But once and awhile it would be nice to have some Jets Pizza lol.

https://www.healingwell.com/community/default.aspx?f=30&m=4151972&p=3

jb1994 said...
Everyone with symptomatic bartonella has SIBO? ***? How do you figure that? I'm pretty sure I don't.

Well then there you go man, just like Georgia Hunter was talking about in another thread about SIBO, you and Girlie said you didn't have that. But when you eat gluten you get bloating and other reaction to foods? Very well could be SIBO and leaky gut, as well as the borrelia and coinfections tearing up your digestive tract.

I suspect symptoms of SIBO aren't always apparent, some can be rather mild.

Post Edited (Charlie55) : 9/29/2019 12:54:18 AM (GMT-6)

Charlie55 said...

Girlie said...
Rifabutin

What's the drug for Girlie, I'm not familiar with it, just curious...?

===================
Are you asking what Rifabutin is, Charlie?
Haven’t you heard of it?

It’s in the Rifamycin class - like Rifampin is. It’s for bart.

- it’s stronger than Rifampin.
The herxes on Rifabutin are like nothing I’ve ever experienced before. I had a high fever and high heart rate that lasted 24 hours.
Couldn’t sleep, whole body pain - my head was sore to touch.

Girlie said...

It’s in the Rifamycin class - like Rifampin is. It’s for bart.

- it’s stronger than Rifampin.

I'm glad I asked, I didn't know that, I heard it mentioned a few times on the forums, but didn't know what it was taken for. I will mention to my LLMD, thank you so much...

Girlie said...


The herxes on Rifabutin are like nothing I’ve ever experienced before. I had a high fever and high heart rate that lasted 24 hours.

Detox detox detox, hang in there Girlie!

Girlie said...
I don’t have any issues when I eat gluten - but for most of the past few years I’ve been mostly gluten free... I’m used to cooking GF as I have a son who has Celiac disease.

You lucky duck, I'm jelly!

Yeah seems as though the millennium generation has it the worst... Just too much crap in the environment and food supply.

Just reading how toxic the water is in California due to PFAS
https://www.cnn.com/2019/09/27/us/pfas-california-contamination-trnd/index.html

It would be nice if a scientist would figure out a way to reverse Celiac Disease like using stem cells or something, they probably could do it with gene manipulation, but that route scares me.

I've heard a few years back that scientists have found ways to remove gluten from wheat and flour, but I've heard gluten is the stuff which helps plump up bread, so we'd probably go back to eating cardboard again, lol.

Well the party’s over - I woke up pain free today and it lasted until around 6:00 pm and then the pain started.

I have another week off meds.

I don't think anything is coincidence. As far as the twitching, I would imagine that the increased volume of distribution of the new antibiotics freed up a homologous compound of acetycholinesterase from the extracellular matrix. It has been seen before and this is a good thing. This is pretty boring reading but some don't believe what I say without a reference.

https://febs.onlinelibrary.wiley.com/doi/full/10.1016/j.febslet.2004.08.078

Gluten is the glue that holds bread together. It's sticky so yes it makes bread nice and fluffy. That's why gluten free bread is so crumbly and stiff. I would prefer if scientists channeled their energy into making GMOs less toxic since we seem so insistent on having them. The wheat now is different from the wheat back in the day which is why we seem to have a sharp rise in all this gluten intolerance.

Girlie said...

I travel across the continent to see Dr J from west coast Canada.

"I'll tell ya another thing, their beer sucks!" https://youtu.be/svpdl89fq1m?t=77

Ahhh, there'll never be another John Candy... lol They broke the mold, his movies kept me going.

https://youtu.be/ddgkqiwh_qg

Girlie said...
Hoping for tomorrow to be better than it was today ...

It always is!

jb1994 said...
I would prefer if scientists channeled their energy into making GMOs less toxic since we seem so insistent on having them. The wheat now is different from the wheat back in the day which is why we seem to have a sharp rise in all this gluten intolerance.

Yes it is, great documentary and book to watch/read is Wheat Belly by Dr. Davis.

They've hybridized wheat, combined the most resilient strains of wheat with other wheat to make a crop resistant to bugs, fungi, bacteri and other crap. Problem with this is, it's also probably going to be very resilient to our guts. Add in glyphosate, well you have some serious problems in the future.

A few years ago Monsanto accidentally released their GMO wheat in Oregon fields, yeah accidental... I wonder whatever happened with that...

https://singularityhub.com/2013/07/02/monsanto-unapproved-gmo-wheat-escapes-into-oregon-fields-lawsuits-follow/
https://billingsgazette.com/news/state-and-regional/montana/the-accidental-release-of-forbidden-gmo-wheat-in-huntley-could/article_5d72d942-1d21-5f87-9df2-85a72bb755bd.html

It's just disappointing how Monsanto gets away with murder, meanwhile small busness and farmers like the Amish are slowly getting fazed out, considering my post here. Makes me sick!

"Amish Leave Farming For Other Work"
https://www.healingwell.com/community/default.aspx?f=30&m=4154217

I don't plan on joining a religious group like the Amish or others for that matter, but I appreciate their practices, their simple living, their craftsmanship and how it's helped others.

What are we going to get down to, like only a few companies that produce nothing but GMOs like what George Carlin said? Neil Degrasse Tyson says their safe, but yet look at how overweight that guy is? I love Neil and his fortitude to save the planet, but he's quite naive about the safeness behind GMOs, vaccines, 5g, and herbicides like glyphosate. Glyphosate has not only wrecked our guts and microbiome, but it's also killing off mass bee populations, which are responsible for cross pollinating plants across the country. Now truck drivers have to drive bees across the land to keep the eocystem thriving properly. So yeah, corporate America is working out real well for us, yet we want to force our practices on everyone else in the world.

Good ol' corporate America, thinking they know what's best for everyone...

It was hilarious how good ol' Obama was pro-Monsanto, yet the first lady was all about eating natural organic foods. Anything wrong with this picture? lol They're all corrupt!

Post Edited (Charlie55) : 9/30/2019 4:17:34 AM (GMT-6)