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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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does zeolite cause herxheimer reaction?

SOC

Senior Member
Messages
7,849
I was just going to ask- where is this person who will even listen to you explain the reactions and responses that you can feel happening to you, let alone then go on to tell you what you need?
Erm... well... there's actual ME/CFS specialists. Ya know, doctors who understand the illness we have -- Montoya, Klimas, Rey, Vera, Kogelnik, Kaufman, Lerner, Bateman, Levine, DeMeirleir, etc, etc.

Of course if you want only alternative treatments, that's another matter. In that case you need to deal with a naturopath who knows quite a bit about alternative treatments, but may, or (more likely) may not, understand the very complex illness that is ME/CFS. If you want treatment for ME/CFS, it makes sense to see a doctor who understands ME/CFS. If you want something else, of course, that's a different matter.

EXACTLY.... and doesn't anyone w CFS understand this??
I guess not. Maybe you're the only smart person here.

All I know is that I started bedbound and now I'm working full-time (not easily, and at a physically easy job), my daughter finished graduate school and will be working full-time, and my uncle appears completely cured... all under the care of doctors who understand ME/CFS, listen to their patients, and treat according to their needs. Those doctors exist.
 

ebethc

Senior Member
Messages
1,901
I guess not. Maybe you're the only smart person here.

I'm still sick, so clearly I'm an idiot!!!! You're well, so you're a genius!

Isn't that the upshot of what you're saying?

BTW - I'm seeing Kaufman this month - if I can find a way to come up w the money in the next 2 weeks, or if I don't kill myself first. Have an appt w Montoya this Fall.. If I"m still alive...
I've seen many well known doctors (stanford, ucsf,northwestern, u of chicago... probably not up to your standards, though)
 

SOC

Senior Member
Messages
7,849
I'm still sick, so clearly I'm an idiot!!!! You're well, so you're a genius!

Isn't that the upshot of what you're saying?
Not at all. I'm saying excellent doctors who understand ME/CFS, listen to their patients, and provide effective treatments exist and deserve our respect and recognition.
BTW - I'm seeing Kaufman this month - if I can find a way to come up w the money in the next 2 weeks, or if I don't kill myself first. Have an appt w Montoya this Fall.. If I"m still alive...
Good luck with Kaufman and/or Montoya. I very much hope you don't kill yourself first! :eek:
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
All I know is that I started bedbound and now I'm working full-time (not easily, and at a physically easy job), my daughter finished graduate school and will be working full-time, and my uncle appears completely cured... all under the care of doctors who understand ME/CFS, listen to their patients, and treat according to their needs. Those doctors exist.

Not in the UK. Or those who do understand it sufficiently to help are impossible - or virtually impossible - to see.
 

SOC

Senior Member
Messages
7,849
Not in the UK. Or those who do understand it sufficiently to help are impossible - or virtually impossible - to see.
Well, yeah. That's the UK. Fortunately the situation in the UK is not universal. Great ME/CFS doctors do exist and are giving many of their patients much improved quality of life. We should acknowledge that that can, and does, happen. IMO, UK patients should not be complaining that treatments and doctors don't exist. Instead they should be screaming bloody murder that their government and medical systems are deliberately preventing them from accessing currently available treatment.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Well, yeah. That's the UK. Fortunately the situation in the UK is not universal. Great ME/CFS doctors do exist and are giving many of their patients much improved quality of life. We should acknowledge that that can, and does, happen. IMO, UK patients should not be complaining that treatments and doctors don't exist. Instead they should be screaming bloody murder that their government and medical systems are deliberately preventing them from accessing currently available treatment.

Many of us already do our utmost to get action via various means. The system is heavily weighted against us, and many of us are not well enough to travel.

We are, on the whole, left without treatment, branded as troublemakers and militants, and deprived of the welfare support we need, also often rejected and abandoned by friends and family.

It's not for want of trying.

If we show info from America to doctors we tend to be sneered at. They often refuse to read it. I have had little or no luck trying to get action from my MP.

We have run campaigns to get the NICE Guideline on ME changed so that we are not offered nothing but CBT/GET. We have discussed this with @Jonathan Edwards, who understands the system, as I think does @charles shepherd - it's easier said than done to get changes made to vast bureaucracies. I think Charles did at least succeed in getting ME declassified as a psychological illness!

But we keep trying, despite ending up repeatedly exhausted and frustrated, and no further towards a solution. So I think UK folks can be forgiven for sometimes expressing that frustration here, where at least other UK folk understand.
 

SOC

Senior Member
Messages
7,849
Many of us already do our utmost to get action via various means. The system is heavily weighted against us, and many of us are not well enough to travel.

We are, on the whole, left without treatment, branded as troublemakers and militants, and deprived of the welfare support we need, also often rejected and abandoned by friends and family.

It's not for want of trying.

If we show info from America to doctors we tend to be sneered at. They often refuse to read it. I have had little or no luck trying to get action from my MP.

We have run campaigns to get the NICE Guideline on ME changed so that we are not offered nothing but CBT/GET. We have discussed this with @Jonathan Edwards, who understands the system, as I think does @charles shepherd - it's easier said than done to get changes made to vast bureaucracies. I think Charles did at least succeed in getting ME declassified as a psychological illness!

But we keep trying, despite ending up repeatedly exhausted and frustrated, and no further towards a solution. So I think UK folks can be forgiven for sometimes expressing that frustration here, where at least other UK folk understand.
Yeah, it sucks to have ME in the UK. :( We all know that and have a great deal of sympathy for you folks, and anger on your behalf.

My only point here is that it is neither correct, nor respectful of the clinicians working so hard on our behalf, to claim that good doctors and decent symptomatic treatments don't exist. If you want to say the doctor don't exist in the UK and that the UK NHS denies you life-changing treatments, I'll agree with you completely and join in your anger and frustration over that situation. It still doesn't mean the doctors and treatments don't exist.
 

South

Senior Member
Messages
466
Location
Southeastern United States
Not having ME, I think I can still empathize with those who do - I have health issues that I've long ago given up finding a "doctor" for.

Although people are trying to be helpful when they say "go see a doctor", that isolated statement deserves the heated reaction it got on this forum, in my opinion. It isn't helpful, even though it was intended to be.

Even in the most progressive countries, there are only a small handful of actual useful, non-closed minded, non-condecending doctors when you look at their number compared to the population of that nation. In non-progressive countries, there almost none.

Millions of people who need them, and yet only a small handful of actual useful doctors. Most of us will never get to see them, and that's the cold hard truth.
 

ebethc

Senior Member
Messages
1,901
Although people are trying to be helpful when they say "go see a doctor", that isolated statement deserves the heated reaction it got on this forum, in my opinion. It isn't helpful, even though it was intended to be.

It was NOT intended to be helpful, because the writer of that comment has no clue how many doctors I've seen. The truth is that I've seen MANY doctors w fine credentials, and I don't have unlimited resources to go to every single doctor far and wide on the so-called top doctors for cfs list (I have appointments scheduled w Kaufman and Montoya - but no expectations... Other doctors are Stanford made me MORE sick w the drugs they prescribed).
 
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Daffodil

Senior Member
Messages
5,875
Just found this thread. @ebethc did you ever take zeolite again? i started it at 1/2 tsp for a few days and got really sick..brain fog 1000 times worse....and it lasted a long time. I am bad now too but maybe for other reasons.

i have severe neuro issues and was desperately hoping the zeolite might help. i have tested and show high ammonia levels.

I read that Klinghardt recommends Sealantro by Nutramedix to bind to the aluminum in the zeolite, while you are on it...

I paid a lot for this zeolite and dont want to give it up altogether...

xo
 

ebethc

Senior Member
Messages
1,901
Just found this thread. @ebethc did you ever take zeolite again? i started it at 1/2 tsp for a few days and got really sick..brain fog 1000 times worse....and it lasted a long time. I am bad now too but maybe for other reasons.

i have severe neuro issues and was desperately hoping the zeolite might help. i have tested and show high ammonia levels.

I read that Klinghardt recommends Sealantro by Nutramedix to bind to the aluminum in the zeolite, while you are on it...

I paid a lot for this zeolite and dont want to give it up altogether...

xo

nope.... zeolite is for mold (as far as I know), and that's not my focus now.

My complaints are the usual suspects: brain fog (most stubborn, stressful b/c it inhibits ability to work & organize life, mountain of medical documentation!), joint/muscle pain (stubborn), PEM/fatigue (most improved symptom), digestive problems (slow, gradual improvement).. If I had the $$ I'd see Kaufman @ OMI b/c his "playbook" is aligned w my problems - viruses, gut, MCAD... If your problem is mold, I don't think my protocol or kaufman would be very helpful, though...Currently, I'm less certain that my core problem is mold, but it's hard for me to say since I am so hyper reactive to any airborne triggers - pm, dust, pollen... Certain VOC's like bleach/ammonia knock me out...However, viral loads and digestion/gut are things that I can say for sure are problems for me, so that's what I'm doing now... It's really a chicken/egg situation for me.. i.e., would I be less sensitive to environment if my gut/viral load were better? Yes, but how much... we'll see.

I've tried a LOT of supplements/rx in the past several years, and based on what I've learned, and I'm getting more focused..I just added bitters & enzymes this week, but in general, I'm winding down my supplement & rx "trials" ... The next thing to try is a sequential compression massager ($400! on AMZN https://goo.gl/LlxACU), but that's not going to happen any time soon...Some cheaper tools to try for ameliorating pain (from a NYC ballerina of all ppl :)) https://goo.gl/G0i4X8

core (every day)
Thyroid Meds (t3/t4 combo, compounded)
EBV/Inflammation: olive leaf extract
Gut/Sinus/Inflammation: Enzymes (Wobenzym, serrapeptase), Urban Moonshine Bitters, Berberine, Probiotics (low histamine only), Zinc
Cognition/Inflammation: SAM-e
general wellness: sunshine, walking; low histamine, clean diet; rinsing sinuses w rx saline water

as needed (min 1-3x per week):
general wellness: magnesium, calcium/vitamin d combo, arnica gel (externall) and arnica tincture (internally); soft foam roller on I.T. band, back, lats..
histamine/MCAD/cognition: quercetin complex (includes vitamin c, rutin, etc.), extra rutin, olba's oil sinus inhaler; singulair; burdock

as needed (2-3x per month):
cognition: various choline supps; pqq, nicotinamide riboside, pterostilbene
inflammation: pantothenic acid, astaxanthin
 

Daffodil

Senior Member
Messages
5,875
@ebethc thanks for the detailed response. i got sick after mono and was on high doses of antivirals for years but it never helped me. my antibodies were never that high. i have now been doing antibiotics for over 4 years and that has helped... but there are plenty of times i dont think anything will help a lot.

xoxox
 

ebethc

Senior Member
Messages
1,901
@ebethc thanks for the detailed response. i got sick after mono and was on high doses of antivirals for years but it never helped me. my antibodies were never that high. i have now been doing antibiotics for over 4 years and that has helped... but there are plenty of times i dont think anything will help a lot.

xoxox

If you ever want to revisit the antiviral tx, I've found Olive Leaf extract to be excellent... quality matters, so I recommend pure encapsulations or designs for health... I used a whole foods brand OLE in june and it set me back... I think that some toxic (for me) solvents are used to extract from herbs in cheaper supplements, which bothers canaries like me.. I know OLE has other benefits, too, but that's what I'm taking it for...Andrographis is a good herbal AV, too.
 

dadouv47

Senior Member
Messages
745
Location
Belgium
Zeolite is far from being ''for mold'. My doctor don't think I have mold and prescribed me zeolite. it's mainly to detox and also to help balancing the PH of the body (increasing PH), which is very important ( mainly if you have gut problems). Thats the main difference between zeolite and others detox medications.

I have been taking it for a month and yeah I'm feeling the usual side effects / brainfog, but it decreased over time ( I went slowly at the beginning). Don't know if it will help but maybe you should start trying it again with a very very low dose and going up very slowly when u feel more comfortable.
 
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Daffodil

Senior Member
Messages
5,875
@dadouv47 thanks for the encouragement. i did read a post on another forum where a woman said she took it for 6 years before her fog went away. are you taking it with Sealantro to absorb aluminum as per Klinghardt?

xox
 

ebethc

Senior Member
Messages
1,901
Zeolite is far from being ''for mold'. My doctor don't think I have mold and prescribed me zeolite. it's mainly to detox and also to help balancing the PH of the body (increasing PH), which is very important ( mainly if you have gut problems). Thats the main difference between zeolite and others detox medications.

good to know.... who's your doc?