Antibiotics

[Navid]

Right now, even though I got this after "mono", it looks like antibiotics are helping me - and I have tried a lot. Still, I am not even close to 50% functioning after about 10 months of treatment, but I have been sick almost 21 years now.

Personally, I think there is some sort of interplay between bacteria and autoimmune disease....

hi daff:

glad to hear you are feeling at least a bit better. when does kdm expect new tx to be available are they all abx related...what abt those of us who do not tolerate abx?

tx, navid

 

[Daffodil]

hi navid. sorry..i don't know anything about the new treatments....I just heard him mention that new ones are coming.

 

[Daffodil]

after stopping the rocephin, I really feel bad. my neck and right lymph node under my jaw is aching a lot, as if it is swelling up. very hard to move my neck and painful to get up when laying down

 

[knackers323]

So how far off an answer do you think we are Jon?

@Jon_Tradicionali you there mate?

 

[Jon_Tradicionali]

@Jon_Tradicionali you there mate?

Hi, yeah I'm here.
I get hit hard by depression daily.

I don't expect 2014 to end without studies pinpointing the exact cause or at least mechanism.

As for drugs for remission or 'cure', the docs are right, the correct combo must be found. Klimas trials a lot of combos e.g.

I never forget one guys story on his journey to finding a cure. High potency, high dose mixture of herbs targeting EBV did it for him. He had been sick for just 18 months keep in mind.

Reading the journey to how he achieved it is incredible, especially his description of what he felt the night he took the herbs and the weeks after.

I'd recommend everyone to read it for inspiration, if nothing else.

I'll provide link if anyone is interested.

Anyway Knackers, I've got Valtrex and three ABX as well as EDTA to take high dose of each for one week as an experiment ( I don't advocate experimenting with drugs). Just waiting on Pridgens results before I try that out. Just curious what he will find.

Jon

 

[Daffodil]

i am now a week into my treatment with Ceftin, after having stopped the IV Rocephin, which was working wonderfully.

I am now certain that my relapse is not a herx. my neck pains, my lymph node aches even more, and my brain fog has pretty much all returned. I can feel my body getting totally inflamed again, especially my head.

 

[Daffodil]

wonder if rocephin is doing something other than killing bacteria. they have found it helps with cocaine addiction and does something involving glutamate:

http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=362


hmm...so apparently glutamate gets brain cells fired up and rocephin normalizes glutamate in the brain...and CFS patients have elevated glutamate.

but...if Rocephin was helping me due only to normalizing glutamate levels, surely stopping the Rocephin wouldnt result in lymph node ache and swelling? glutamate elevation wouldn't result in that, would it? also, neck pain...as if an infection were spreading...

 

[knackers323]

Hi, yeah I'm here.
I get hit hard by depression daily.

I don't expect 2014 to end without studies pinpointing the exact cause or at least mechanism.

As for drugs for remission or 'cure', the docs are right, the correct combo must be found. Klimas trials a lot of combos e.g.

I never forget one guys story on his journey to finding a cure. High potency, high dose mixture of herbs targeting EBV did it for him. He had been sick for just 18 months keep in mind.

Reading the journey to how he achieved it is incredible, especially his description of what he felt the night he took the herbs and the weeks after.

I'd recommend everyone to read it for inspiration, if nothing else.

I'll provide link if anyone is interested.

Anyway Knackers, I've got Valtrex and three ABX as well as EDTA to take high dose of each for one week as an experiment ( I don't advocate experimenting with drugs). Just waiting on Pridgens results before I try that out. Just curious what he will find.

Jon

Hi yep the depression caused by this illness sucks.

I hope your right about that time line, I've had enough of this shit.

I'd like to read that link.

Is the EDTA for biofilm?

What is the pridgen thing?

 

[heapsreal]

wonder if rocephin is doing something other than killing bacteria. they have found it helps with cocaine addiction and does something involving glutamate:

http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=362


hmm...so apparently glutamate gets brain cells fired up and rocephin normalizes glutamate in the brain...and CFS patients have elevated glutamate.

but...if Rocephin was helping me due only to normalizing glutamate levels, surely stopping the Rocephin wouldnt result in lymph node ache and swelling? glutamate elevation wouldn't result in that, would it? also, neck pain...as if an infection were spreading...

Have u looked into nmda antagonists like memantine to help lower glutamate as well as tnf alpha. It seems to have some good neuroprotective effects and anti inflammatory effects?

 

[Daffodil]

no i havent, thanks heap!

 

[maryb]

I never forget one guys story on his journey to finding a cure. High potency, high dose mixture of herbs targeting EBV did it for him. He had been sick for just 18 months keep in mind.

Reading the journey to how he achieved it is incredible, especially his description of what he felt the night he took the herbs and the weeks after. Jon

If you can hit this illness earlier on you have a much better chance, such a pity most of us are still chasing the right treatment after many years.
Even so I would be interested in the link Jon

 

[Jon_Tradicionali]

Hi yep the depression caused by this illness sucks.

I hope your right about that time line, I've had enough of this shit.

I'd like to read that link.

Is the EDTA for biofilm?

What is the pridgen thing?

Have long have you had this ?

The link @maryb @knackers323 : http://www.cfs-healing.info/max-rivers-spontaneous-healing-me-cfids-cfs.htm

I think almost everyone on this forum would cry or become teary after reading the above. I know I did.

Pridgen is the surgeon, turned FM researcher, who claims to have found a way to halt the process (essentially cure) which manifests the various symptoms in FM patients

He was supposed to publish on 15th of March but there is a delay in collecting and publishing of his data.

Edit: Yes EDTA is for biofilm.

 

[knackers323]

Have long have you had this ?

The link @maryb @knackers323 : http://www.cfs-healing.info/max-rivers-spontaneous-healing-me-cfids-cfs.htm

I think almost everyone on this forum would cry or become teary after reading the above. I know I did.

Pridgen is the surgeon, turned FM researcher, who claims to have found a way to halt the process (essentially cure) which manifests the various symptoms in FM patients

He was supposed to publish on 15th of March but there is a delay in collecting and publishing of his data.

Edit: Yes EDTA is for biofilm.

Since I was 17. I'm now 35

 

[Jon_Tradicionali]

Since I was 17. I'm now 35

I'm sorry.

 

[knackers323]

I'm sorry.

Me too mate but shit happens hey. How long you had it?

 

[Jon_Tradicionali]

Me too mate but shit happens hey. How long you had it?

Caught the flu when I was 4/5. It never went away. I am now 23.

 

[knackers323]

Caught the flu when I was 4/5. It never went away. I am now 23.

Sorry man. It is an evil illness isn't it, it takes away so much. So you really confident that we will at least know why we feel the way we do by the end of the year?

I've felt like that before and been disappointed, what makes this time different?

 

[Jon_Tradicionali]

Sorry man. It is an evil illness isn't it, it takes away so much. So you really confident that we will at least know why we feel the way we do by the end of the year?

I've felt like that before and been disappointed, what makes this time different?

Evil is just one word to describe this.

There has been so much already found from past studies, the studies due to be published this year will be groundbreaking. That's why.

 

[Daffodil]

without the rocephin, I feel as if I am dying.

 

[Daffodil]

hi all. just wanted to give an update. so when I returned from reno, I was in a big decline after having stopped rocephin. I was put on oral antibiotics but felt awful. the diarrhea continued and I was losing weight. I had lost about 25 pounds since starting the protocol. much of that weight was likely due to change in diet (no gluten, more veggies, etc.) but I was worried that part of it was from the continued diarrhea.

about 11 days ago, I was taken off the antibiotics and given a new treatment plan: xifaxan and immunoglobulin.

after I stopped the antibiotics, I felt good briefly and now feel as if the infection is spreading again. I think the antibiotics were targeting something, but made me sick in other ways while I was on them. now, I am experiencing aching lymph node, night sweats, worse fog, etc.

I would like to begin the new protocol ASAP but am running into some problems obtaining the medicines. this will likely be resolved within the next week or 2, but I am worried I will worsen considerably by then.

after a year of constant diarrhea, I now have constipation.

xox