Dont know what to do next after lot of treatments - every opinion is welcome! CFS/Inflammation

MartinK

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Hey all, thanks a lot for answers!

@pattismith thanks for YT video - I need to understand little bit more with my poor English skills :-/
Im still waiting for cervical testing - I'm ordered to my neurologist, he promised me to write MRi, but really long time to wait for appointment...in end of September.
Make MRi on a self-paying basis...more pictures, 3T = its too expensive for me! :-/
Therefore, I decided to try doing home-self DIY testing... I had no better idea than to start manual traction from YT videos and buy Aspen Vista Multicollar neck brace.
I want to try to measure the steps without and with Aspen, or sitting test... how much I can handle without PEM.
PEM is one of my main problems...

@Archie Yeah, I had EBV in childhood and one reactivation 3 years ago. Know Anthony William and did a lot from his reccomendations for a long time - blueberries, L-lysine, cats claw, lot of vegetables, seleno, monolaurine...

but for the whole time I have no results to be able to judge something...still really sick.

This all is why Im starting more investigations on many levels, which have not been investigated in the past...
Really feel many things is on right way but something is missing in the jigsaw to start working.

@Rufous McKinney Yes, ketogenic was wrong, but Im really happy but i'm happy to try i can strike the list.

I think the good way is to examine the spine mainly now. I have hyperkyphosis and morbus Scheurmann...and with this spine problems I did hard work before I got ill with flu symptoms 6 years ago.
All is hard to get really accurate diagnosis...a lot was in the game from the past - Lyme, EBV, intollerances and my bad back.
 
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I think the good way is to examine the spine mainly now. I have hyperkyphosis and morbus Scheurmann...and with this spine problems I did hard work before I got ill with flu symptoms 6 years ago.
All is hard to get really accurate diagnosis...a lot was in the game from the past - Lyme, EBV, intollerances and my bad back.
I have possibly similar back issues:including Scheurmann's..maybe a milder version...but the back and neck here are a mess and perhaps more of my issues stem from some of that than I had prevoiusly realized. My lower back structural problem makes the upper back problem worse. Add head and neck.
 

pattismith

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Hey all, thanks a lot for answers!

@pattismith thanks for YT video - I need to understand little bit more with my poor English skills :-/
Im still waiting for cervical testing - I'm ordered to my neurologist, he promised me to write MRi, but really long time to wait for appointment...in end of September.
Make MRi on a self-paying basis...more pictures, 3T = its too expensive for me! :-/
Therefore, I decided to try doing home-self DIY testing... I had no better idea than to start manual traction from YT videos and buy Aspen Vista Multicollar neck brace.
I want to try to measure the steps without and with Aspen, or sitting test... how much I can handle without PEM.
PEM is one of my main problems…

I think the good way is to examine the spine mainly now. I have hyperkyphosis and morbus Scheurmann...and k.
I had a look into Scheuermann disease, it is a serious spine condition that may be involved in a way or another with your ME/CFS. I hope you will have soon more answers;
Did you talk about your back pain with your doc? Scheuerman can predispose to discopathy (hernia), so a doc may order an MRI of your spine.
Do you have headache and neck pain?
 

MartinK

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@Fuluf thanks ;-) I know CDS and MMS, I used as a gargle several times, when my throat ached...good desinfection. thanks for article - I will look at it! ;-)
Yes, my gut feels good - I'm not making changes if I eat healthy and unhealthy. Sure Im on really healthy food, many vegetables, no allergens... but I also tried for test unhealthy fatty foods and fast carbohydrates and I feel the same way.
You have own experiences with Ayahuasca? I have some friends in a Czech psychedelic society...but Im really careful with halucinogens to be honest :)

@Rufous McKinney @pattismith I think Scheurmann and kyphosis, hyperkyphosis or scoliosis is no big problem, when back and abdominal muscles are regularly strengthened...it may well hold the whole skeleton. But with CFS it's a vicious circle...my muscles are really week, there is no chance to work on muscles, I only manage yoga 2 - 3x day, strengthening makes me worse...gym would kill me!
when I sit longer (that mean 30 mnutes) or walk/stay (that means 15 minutes) my hips hurt a lot, muscles on feet start burn and worst is the pain in back and neck...I feel like knives are piercing me in this in these places. That mean exhaustion and PEM for 1-2 day fulltime in bed.
But it is so hard to discern when my muscles are totally weak! :-/
Headache sometimes - mainly during longer concentration, blurry vision.
 

MartinK

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And I want to say - Im still thinking about Stromal Vascular Fraction (SVF) - Stem Cells and PRP. Know some patients from Infusio, who had really great improoves from this therapy. They suffered from post-Lyme and CFS.

Why I thinking about it? REGENERATION - because HBOT makes me really better in past - I felt really regenerated in that times... extremely beneficial to my muscles, less pain, less fatigue, smaller PEMs.
Maybe this is one of the way too...

SVF and intiinflammatory https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6327643/

Here is one story - CFS/Lyme Infusio treatment - https://februarystars.co.uk/2017/11/stem-cells-lyme-disease-week-4-update/
 
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@MartinK Unfortunately vegetables are allergens because it's filled with antinutrients to protect itself from predators. Look into it, there was first carnivore conference in March this year, carnivorycon on YouTube if I'm not mistaken, lots of unique info.
No Aya yet, I was mainly interested in Kambo as it's more for the physical healing, works similar to bee venom but more powerful, very interesting thing not many people talk about.
Wish you healing
 

MartinK

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@Fuluf thanks a lot ;-) You have good experiences with Kambo? Any posts in history from you about it? Id like to explore it ;-)
 
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@MartinK Also no personal experience with Kambo, just read how it was very beneficial, key factor in healing of someones Lyme/chronic infection. I had an appointment for ceremony this week but decided not to at the last moment. My situation now is somewhat worsened because of the constant herx/immune reaction and I don't know how I will react. But if nothing helps I will do it nevertheless.
Also forgot to mention about root canals, teeth problems. Also worth to check out. Now watching "Root cause", quite fascinating
 

MartinK

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@Fuluf Yeah, root canals and teth problems - I explore this problemations a lot last year! 5 teeths out in this winter is result - it was under narcosis, I had inflammation and infection under lying wisdom teeths and one root canal problem. Now its ok thanks god!
And what was best? Day after surgery I was like normal healthy! But only one day...

Probably anesthetics worked for me and it was like miracle. Inflammation feelings gone, fatigue too... I wanted to get out of bed and run.

I'd like to find out what those anesthetics are doing for me and what they are...
I am in such a situation that I could take them even in small doses to make me better and able to work, enjoying summertimes...be happy.
It was a great feeling and I wanted to cry...

Kambo - I've already read something, little bit scared from it, lot of vomiting... last vomiting makes me super exhausted and make PEM.
 
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@MartinK I'm no expert in this but probably inflamed nerves from teeth infection? And it's probably not fully gone after removal? Because if dentist don't know what he is doing he probably won't fully eradicate an infection eg with ozone or something. Have you done 3d scans after to rule out residual infection? I think it's a common problem even after removal
 

Wishful

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Probably anesthetics worked for me and it was like miracle. Inflammation feelings gone, fatigue too... I wanted to get out of bed and run.
It could also have been the pain signals, which would exist even if the perception of them were blocked. Others have reported temporary remissions following extreme pain. That surgery could have produced multiple possibilities for triggers.

Also, such triggers only seem to work once or twice, then stop working. I can't recall anyone reporting a reliable trigger for temporary remissions. I've had several triggers that worked only once or twice, despite my deepest desire that they would continue to work, even if just occasionally.
 
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I haven't encountered anything that has taken weeks or months to start working,
And I have: zinc (5 weeks to take effect) and coQ10 (after 2 days I was sure that I was on the right track because it started working though barely but the real effect was visible after 2 weeks).
Both of times it was a sudden improvement, not gradual. So, if I hadn't continued supplementation for a longer time, I would have ended up with nothing.
 
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Both of times it was a sudden improvement, not gradual.
It took me ten months to clear a rash: using traditional chinese herbs. Its never returned. I had given up mentally, but continued because the herbs helped me feel better.

It was so wonderful: over four days- this rash I'd had for ten years-disappeared entirely, and like it was never there.
 
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Hi there,
someone already knows me here, someone not... and I am not happy with this report at all. But...lot of disappointment in recent months.
Try Dr. Brownstein's protocol. Once I got on Iodoral (half of 12 mgs daily) + Selenium + Vit C it changed my life and got me back to about 80% then on top of this I got into Peptides and BPC-157 + TB500 has also been a God send. I'm now back to lifting at the gym and some light cardio on a bike. Not 100% but basically feel just about healed besides the remnants of back pain and light malaise every so often. I am now basically looking for work again and should be back at work by the end of the month
 

MartinK

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@beatsmyth : thanks for tip!
When I see Iodine, looks like a protocol for thyroid problems, right?

Please, what is BPC-157 + TB500 ?

Thanks, Martin
 

MartinK

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Hi all! Really interesting news here...discovered in my dentist office.

I worked on my teeth problems a lot in past - wisdom teeths are out and one dead teeth with big amalgam too.
But, looks like here is one more problem - because I have a crown on my last dead tooth in mouth.
This crown feel out last week and I felt a nasty smell!!!
My dentist (no biological, but no work with amalgams) checked it and looks root canal fillings are very bad! And maybe is more problems under tooth.
I need this tooth tear out as soon as possible for sure...

And now, one interesting conclusion - I found, that I have a crown in my mouth since the year my problems started...:-/

perhaps I have found the right way...really big new hopes :)

Martin