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Finally got my next appointment scheduled

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Posted 10/4/2022 9:34 PM (GMT 0)
I have been lagging on getting my appointment scheduled, blood tests and scans done. The first two phases of treatment through DC Dr. J didn't help much. This wasn't entirely unsuspected as I thought my symptoms lined up more with a Bartonella/persister type of illness. As I'm sure many here can relate I've just been beat down mentally and physically by this illness. It's been seven years and it's hard to motivate myself at times. Additionally, my dad died unexpectedly a few months ago and that has been a whole can of worms dealing with that and trying to help my mom out while being so ill.

A couple weeks ago I decided to experiment by trying some old Tick Immune Support (lots of herbs in single capsules). A few days after I started that I started taking some old Methlyene Blue. My reaction to this was swift and severe. Lots of symptoms intensifying that are specific for a Bartonella type illness. The red scratch marks on my back and butt being one of the most obvious.

Now I'm excited to get into the next phase of treatment and hopefully get on some heavy duty meds and persister drugs. I imagine I will be able to tell within a month or two if I'm barking up the right tree. My current experiment with the herb mix and M. Blue reminds me of how devastating it is the poke the Bart bear. Mt illness is multi-systemic, like many others, but the inflammation of the nervous system is a killer. It is a completely debiltating for me. It makes the very simple things I try to do day to day to be able to withstand my current life almost impossible. Therefore, I imagine I'm going to be fighting depression during this upcoming treatment phase. Sucks, but doing nothing isn't working either. The pain and misery is worth it if at the other side is increased well-being. Here's hoping.

Post Edited (Lymie24) : 10/4/2022 2:37:40 PM (GMT-7)

Posted 10/4/2022 10:20 PM (GMT 0)
Im rooting for you Lymie24! I hope this next portion gets you back to 100%. I believe he prescribes dapsone which is an exciting drug that has been a game changer from what I've heard. Keep us updated
Posted 10/4/2022 11:06 PM (GMT 0)
Glad you are taking next step. Hope brings beetter feelings.
Posted 10/4/2022 11:29 PM (GMT 0)
Thanks running wild. Hope things are going well for you.

Thanks bro123. Where are you at in treatment? How are you doing?

I've taken Dapsone before when I tried Horowitz's double dapsone protocol through my local LLMD. I've been up front about struggling physically and mentally when I tried that plan. It was rough. I made it 28 days or something like that before I ended up in the ER. That protocol was daily dosing of many things including Dapsone. Because of that experience I'm a little fearful of Dapsone, but, administered in a pulsed way like Jemsek does I'm more confident I could handle it. Hopefully it's useful against Bart since that seems to be what my symptoms point towards.
Posted 10/5/2022 12:20 AM (GMT 0)
Lymie24,

Wish you all the best!

You said: “A few days after I started that I started taking some old Methlyene Blue. My reaction to this was swift and severe. Lots of symptoms intensifying that are specific for a Bartonella type illness. The red scratch marks on my back and butt being one of the most obvious.”

Do you mind describing all symptoms that flared with MB besides the scratch marks that you correlate with bartonella?
Posted 10/5/2022 12:21 AM (GMT 0)

Lymie24 said...
I have been lagging on getting my appointment scheduled, blood tests and scans done. The first two phases of treatment through DC Dr. J didn't help much. This wasn't entirely unsuspected as I thought my symptoms lined up more with a Bartonella/persister type of illness. As I'm sure many here can relate I've just been beat down mentally and physically by this illness. It's been seven years and it's hard to motivate myself at times. Additionally, my dad died unexpectedly a few months ago and that has been a whole can of worms dealing with that and trying to help my mom out while being so ill.

A couple weeks ago I decided to experiment by trying some old Tick Immune Support (lots of herbs in single capsules). A few days after I started that I started taking some old Methlyene Blue. My reaction to this was swift and severe. Lots of symptoms intensifying that are specific for a Bartonella type illness. The red scratch marks on my back and butt being one of the most obvious.

Now I'm excited to get into the next phase of treatment and hopefully get on some heavy duty meds and persister drugs. I imagine I will be able to tell within a month or two if I'm barking up the right tree. My current experiment with the herb mix and M. Blue reminds me of how devastating it is the poke the Bart bear. Mt illness is multi-systemic, like many others, but the inflammation of the nervous system is a killer. It is a completely debiltating for me. It makes the very simple things I try to do day to day to be able to withstand my current life almost impossible. Therefore, I imagine I'm going to be fighting depression during this upcoming treatment phase. Sucks, but doing nothing isn't working either. The pain and misery is worth it if at the other side is increased well-being. Here's hoping.

Well the Bart/Persisters protocol was brutal for me…
Buckle up!
Get your detoxes in place

That said… it might not be as brutal for you
Posted 10/5/2022 2:17 AM (GMT 0)

WalkingbyFaith said...
Lymie24,

Wish you all the best!

You said: “A few days after I started that I started taking some old Methlyene Blue. My reaction to this was swift and severe. Lots of symptoms intensifying that are specific for a Bartonella type illness. The red scratch marks on my back and butt being one of the most obvious.”

Do you mind describing all symptoms that flared with MB besides the scratch marks that you correlate with bartonella?

Sure. I wouldn't say that MB was necessarily the thing that flared me the most. It's tough to say because I added them close together, but, the Tick Immune Support, which can be found on Amazon, flared my symptoms by itself. I've tried this herb mixture before but I thought I was having side effects from it. Now I'm leaning towards the possibility that I was taking too many capsules and it was too strong.

Other symptoms that flared are tremors, tender soles of feet especially upon waking in the morning, occasional pins and needles in toes, off and on shin pain, GI symptoms intensify, teeth pain, ear pain, eye pain, painful lymph nodes in neck and armpits, episodes of hot and cold, increased anxiety likely due to neuro system barrage, related to that increased irritability and sensitivity to stimulation (I want to kill my dogs when they start barking at something outside or a neighbor closes their car door), episodes of frequent urination, muscle twitching: both limbs and fascinations...one weird thing I've never experienced before is my right hand's pinky twitches almost uncontrollably at times, skin crawly sensations, more frequent insomnia (I think this is due to nervous system buzzing), and more thumping of heart/slightly increased heart rate.

Those are the ones off the top of my head. The neurological symptoms can be unbearable. My clinicians prescribe me Klonopin for when the nuero stuff gets out of control. I hate taking it, but, the other option is not to sleep or almost have an anxiety attack at times.

There is a lot of bad in there, but, and knock on wood, my chest pain and heart symptoms have improved greatly since last year.
Posted 10/5/2022 2:20 AM (GMT 0)

Girlie said...

Lymie24 said...
I have been lagging on getting my appointment scheduled, blood tests and scans done. The first two phases of treatment through DC Dr. J didn't help much. This wasn't entirely unsuspected as I thought my symptoms lined up more with a Bartonella/persister type of illness. As I'm sure many here can relate I've just been beat down mentally and physically by this illness. It's been seven years and it's hard to motivate myself at times. Additionally, my dad died unexpectedly a few months ago and that has been a whole can of worms dealing with that and trying to help my mom out while being so ill.

A couple weeks ago I decided to experiment by trying some old Tick Immune Support (lots of herbs in single capsules). A few days after I started that I started taking some old Methlyene Blue. My reaction to this was swift and severe. Lots of symptoms intensifying that are specific for a Bartonella type illness. The red scratch marks on my back and butt being one of the most obvious.

Now I'm excited to get into the next phase of treatment and hopefully get on some heavy duty meds and persister drugs. I imagine I will be able to tell within a month or two if I'm barking up the right tree. My current experiment with the herb mix and M. Blue reminds me of how devastating it is the poke the Bart bear. Mt illness is multi-systemic, like many others, but the inflammation of the nervous system is a killer. It is a completely debiltating for me. It makes the very simple things I try to do day to day to be able to withstand my current life almost impossible. Therefore, I imagine I'm going to be fighting depression during this upcoming treatment phase. Sucks, but doing nothing isn't working either. The pain and misery is worth it if at the other side is increased well-being. Here's hoping.

Well the Bart/Persisters protocol was brutal for me…
Buckle up!
Get your detoxes in place

That said… it might not be as brutal for you

I fully expect it to be brutal for me. My neuro symptoms are so bad that when I start poking Bart, or whatever else is causing issues, I pretty much feel like the world is ending.

What detoxes helped for you?
Posted 10/5/2022 2:24 AM (GMT 0)
Oh I forgot to mention the horrendous body odor I give off when I'm really hitting the buggers hard. It's a really distinct smell I only get when all other symptoms are intensified.
Posted 10/5/2022 2:55 AM (GMT 0)
“ What detoxes helped for you?“

My favourite was taking a warm Epsom salt bath.
I would get relief for a few hours.
(Except for the herx from hell.)

I had one really really bad herx when I was on the Persisters protocol… it hit me the Friday night after the week 1. I think it was my first cycle of the protocol.
(Week 1 being dapsone Mon-Friday, daraprim Mon to Friday.
Plus Rifabutin, minocycline and Ceftin taken M/W/F)

That Friday night was horrific!
High fever, arms jerking uncontrollably, all-over body pain, head pressure through the roof.
A warm Epsom salt bath took the edge off it for an hour or so.
I believe I also had nausea.
My husband stayed awake all night with me and called in sick for work for the next day - - he was so worried about me.

I did my best at drinking water - but it was hard to - I felt so horrible.
Posted 10/5/2022 3:46 AM (GMT 0)
GIrlie, how did you feel on the last day of the persisters protocol? Were you almost back to normal? When during the persisters protocol did you feel like it was turning around
Posted 10/5/2022 4:43 AM (GMT 0)

bro123 said...
GIrlie, how did you feel on the last day of the persisters protocol? Were you almost back to normal? When during the persisters protocol did you feel like it was turning around

Last day - meaning after I had done the 6 months?

I felt quite good - but I have lingering back pain plus short term memory isn’t good.

I’m not sure if that’s what you’re asking me….
Posted 10/5/2022 4:49 AM (GMT 0)
Re: detox.
I also used alka seltzer gold - don’t recall if it worked.

Also I took Burbur/Pinella (Jernigan)
I would take a dose every couple hours plus an Epsom salt bath.
Generally it would resolve after a few hours - except that herx from he// I described.

Lymie24 - Sorry to hear about your dad.
Posted 10/5/2022 1:10 PM (GMT 0)
Good Luck Lymie!!

i think you are in good hands
we are rooting for you
Posted 10/5/2022 11:30 PM (GMT 0)

Girlie said...

bro123 said...
GIrlie, how did you feel on the last day of the persisters protocol? Were you almost back to normal? When during the persisters protocol did you feel like it was turning around

Last day - meaning after I had done the 6 months?

I felt quite good - but I have lingering back pain plus short term memory isn’t good.

I’m not sure if that’s what you’re asking me….

Yes that's what I meant girlie. Thanks for addressing that. So you would say you made your most progress during the bart/persisters protocol? I think many of my issues are bart related. Even though I treated bart with rifampin and rifabutin daily for a year I virtually made minimal progress. So im scared that Dr J bart protocol won't even do much.
Posted 10/6/2022 5:12 PM (GMT 0)

Girlie said...
Re: detox.
I also used alka seltzer gold - don’t recall if it worked.

Also I took Burbur/Pinella (Jernigan)
I would take a dose every couple hours plus an Epsom salt bath.
Generally it would resolve after a few hours - except that herx from he// I described.

Lymie24 - Sorry to hear about your dad.

Thanks Girlie! I was hoping I could make some significant progress in my illness before he went, but alas, such is life.

I've tried pretty much every detox method I have ever heard of besides coffee enemas. Some of them work, but, they aren't super effective when I'm really feeling a bad herx/flare. Treating strongly disturbs my neuro system so greatly the only thing that really helps is Klonopin. The problem with that is I don't want anything to do with Benzo withdrawls. My provider was confident at my dose that weaning off wouldn't be a problem. Still, I take it as least as possible. I'll probably try Burbur/Pinella again (Think I've tried it once)
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