Undiagnosed circle of hell.

Mars Bar · 14-10-2013 6:01pm

TJJH wrote: »

dlofnep? You still on this blog ?
Tipp lad with same issues.
Thanks

dlofnep closed his account and opened one up as peann which I now see has also been closed.

I hope he is doing well.

TJJH · 14-10-2013 8:15pm

Hey peann, hope you are still hanging in there buddy.
You scared me with your symptom description- I can t believe you preserved through to stage you are at.
If you are getting counselling they have probably told you to stay away from Internet etc.
I started with a dodgy stomach for months, followed swiftly by brain fog/ dizziness, throw in some vertigo and lost two teeth also, anxiety and stiff neck (cracking) I KNOW the foggy sickness- It scared/scares the hell out of me to the point of been haunted. I too was with Dr. W of WRH . You have to face it( counselling helps ).. I don t have all answers but you now know you are not alone with this.
Hope you see this.

Chrisita · 16-10-2013 9:11am

Peann, i hope you return here, I have just read your entire story and boy do I empathize with you. Apart from coffee enemas, I too have done the lot and guess what, a huge part of it was under methylation. My symptoms were different from yours, utter fatigue, unbearable anxiety and finally unrelenting depression. I was your age now when my problems began ( was always a low energy person with a huge littany of allergies,eczema and sinusitis) and this is 21 years later. I was luckier than you in that my career was established and I was self employed and could reduce my days in order to survive. I feel sad for your lost years, but you know what, this methylation protocol along with diet and digestive is going to give you the future you have dreamed about. Are you having your treatment in Dublin? I do know of a GP there and this is his specialty. I know many other people who have had a similar outcome and their lives are much better now. Your personality is so like mine, I insisted (in spite of great resistance) that my problem was physical and the DRr who diagnozed my congratulated me for myrelentless tenacity. I also had pyroluria and copper overload as well as digestive challenges. Lots of hugs and I know recovery is slow, bi=ut it is certain.

Rucking_Fetard · 16-07-2014 1:30am

I was wondering how he was getting on. Still at it anyway. Getting into very complex/nitty gritty of it now.

http://rejectmercury.blogspot.co.uk/

GoodLord · 23-07-2014 2:44am

UmmCadburys wrote: »

Who said anything about Hypochondriac ? Are you trying to diagnose people Padi89 ?

And I certainly never "thought" myself better .

What i did do , was go to my Doctor , but this time i decided to accept his diagnosis and treatment instead of trying to diagnose and treat myself .

Lot of people diagnose themselves with ME

sleepyheadh · 23-07-2014 8:34pm

How is this allowed.. the op basically gave a list of their symptoms and asked what could it be?????

Edgarfrndly · 02-05-2015 3:31am

Hi guys,

dlofnep here. Sorry I haven't been around much, or been posting on here. I went through a really bad spell of depression 2 years ago, and disconnected from my friends, family and online websites. I still struggle - and it's been a very rough few years for me.

But I wanted to write and give an update, as I still get the occasional e-mail asking about how I'm doing.

It's been almost a decade since I became ill after getting amalgam fillings. I'm still very ill at present, but I've learned a lot since I began this journey, and I'm continuing to learn. I'm constantly trying new things, and researching every new peer-review paper that's related to chronic fatigue. I've also recently written a letter to the Minister for Health - highlighting the plight of people with Chronic Fatigue Syndrome, and the total lack of support for us.

I wrote an entry on my blog stating that I had given up. A gentleman from Scotland contacted me, and explained that he had gone through the exact same situation as me. Became ill after amalgam fillings, got them replaced - detoxed and had no results after 3 years of chelation. Was totally despondent but wanted to double-check his fillings. He visited Munro-Hall in England, which found that even those he had his amalgams replaced - there was still some traces of amalgam left over.

They replaced them properly about 10 months ago, and since then he's been detoxing once again and is finally seeing superb results with his detox process. I spoke to him on the phone, and he e-mails me an update every 2 or 3 weeks, letting me know how he's doing. So I booked an appointment with the clinic in question, for this July. Hopefully it will be the turning point I need.

In my absence on here - I also setup a support group on facebook for people who developed chronic fatigue after getting amalgam fillings. It started out with a handful of us, now there's almost 4,500 members - all with the exact same story as me. Everytime I approve a new member, I get a little sad - as I know it's another poor soul on this planet with the same struggles as me. But at least, they are not alone.

In the meantime, a paper was released only a few weeks ago which looked at the role of the AMPK enzyme in relation to patients with Chronic Fatigue. Abnormalities in AMPK activation was observed in CFS patients in contrast to healthy control subjects. You can read the entire paper here if you like. I found it super-interesting. It feels like they are finally starting to make some breakthroughs in identifying the genetic factors involved in CFS.

I've ordered a few supplements in the meantime to support AMPK. They should be here within a few days. I'll give an update on how I respond to them.

I want to leave with some final words on CFS. It is my view that the state needs to do a whole lot more to support research funding into this illness, and to open a dedicated clinic for patients with CFS. As it stands, we're just sent around in circles and ridiculed as being hypochondriacs. It's highly insulting, frustrating and saddening to have years of chronic illness belittled. Both healthcare professionals and society as a whole needs to start re-evaluating how they treat people with CFS. We're not "lazy". It's not "in our heads". It's a very real illness with very serious consequences.

That being said - fingers crossed I will work through all this.

I wish you all the best, especially those on the same journey as me.

Much love,
dlofnep

Splendour · 02-05-2015 10:16am

Thanks for update dlofnep, sorry you've been struggling with depression but glad to hear you're still optimistic. I totally understand how you feel-some days you just want to sit and cry through sheer frustration of the whole thing but then you realise no one is knocking on your door with answers and you keep reading and researching hoping to find something that will work for you.

It will be interesting to see how you get on in Munro Hall, I'd love to have my mercury amalgams replace but unfortunately, I don't have the cash flow. I have been looking into getting Lymes disease testing done in Germany (approx. e600) but it will take a bit of saving for that and as I can't work at the moment so that's not easy either.

It's been a while since I read this thread but I take you've tried a gluten/sugar/dairy free diet? Doesn't make CF go away but I think it helps.

Can you tell me the name of your group on FB please? It's good to have contact and support with those in the same position.

I wish you all the best on your journey too and please keep us updated on how you get on.

Splendour

Edgarfrndly · 02-05-2015 10:28am

Hi splendour - I'll send you a private message, as I don't want to feel like I'm trying to advertise the support group on here. We actually have a lot of Irish members in there, many of whom I'm in contact with a lot. Thank you for the kind words. And yes, I've cut out all the usual trouble-makers in my diet. I was eating pretty sloppily for a while, to try and curb my depression but I'm back on track with it now. Gluten causes huge muscle flares + joint pain for me. It was one of the first things I noticed when I first became ill.

Seanachai · 06-05-2015 12:14pm

Edgarfrndly wrote: »

Hi splendour - I'll send you a private message, as I don't want to feel like I'm trying to advertise the support group on here. We actually have a lot of Irish members in there, many of whom I'm in contact with a lot. Thank you for the kind words. And yes, I've cut out all the usual trouble-makers in my diet. I was eating pretty sloppily for a while, to try and curb my depression but I'm back on track with it now. Gluten causes huge muscle flares + joint pain for me. It was one of the first things I noticed when I first became ill.

Good to hear that you're still keepin' on, I've been on much the same path as you except I never got the fillings thank god, I dread to think how I'd be if I had. I've been experimenting with supplements and treatments for almost ten years now, I could have bought a pretty decent car with the money I've spent

. Despite not having fillings I still believe that mercury and other metals are a factor in my ME especially in terms of the effect they have on the gut, the gut health is so crucial and if it's compromised by this junk then nothing else will work properly.

I think there's a reluctance to acknowledge ME by the state as it opens up a whole can of worms as to why people are developing this condition. It would mean looking at pesticides, vaccines and dental care etc and there are people who would not like to see this happen. I think we're part of a group of people whose bodies are just that bit more sensitive to injury from pollutants and the public medical system is too fragmented to address the illness in an effective way.

I tried the Cutler protocol as described in your blog but I'm not sure if it worked for me. I'm going to try the Chris Shade IMD product to see if I can get any benefit from it and the research you linked to sounds very interesting. Could you PM me the FB group also?, thanks.

Edgarfrndly · 06-05-2015 4:03pm

I did watch one of Chris Shade's online lectures - was pretty interesting. I've avoided it for the moment, as it's still very early days yet with it. I'll send you on the link.

Edgarfrndly · 07-05-2015 1:05am

Sent off a letter today to Leo Varadkar to highlight the plight of people with CFS. I discussed the need for a streamlined diagnosis, and a dedicated clinic for treatment. Also discussed the need for financial assistance with respect to vitamins and supplements, which make our lives a little more bearable. I spoke about the need for education, so the public understands the difficulty of living with CFS and so GP's are able to identify the symptoms at an early stage, so we can be diagnosed sooner.

I commented on the great need for mental health support for us, as it's extremely trying to wake up every day - knowing you won't feel normal, won't feel refreshed and will be extremely limited in the activities you can engage in.

I commented on my own personal situation, and the poor support I received over the years with the HSE.

Will post the reply when I receive one. I think a minister is obligated to respond to a written letter?

Seanachai · 07-05-2015 9:37am

Edgarfrndly wrote: »

Sent off a letter today to Leo Varadkar to highlight the plight of people with CFS. I discussed the need for a streamlined diagnosis, and a dedicated clinic for treatment. Also discussed the need for financial assistance with respect to vitamins and supplements, which make our lives a little more bearable. I spoke about the need for education, so the public understands the difficulty of living with CFS and so GP's are able to identify the symptoms at an early stage, so we can be diagnosed sooner.

I commented on the great need for mental health support for us, as it's extremely trying to wake up every day - knowing you won't feel normal, won't feel refreshed and will be extremely limited in the activities you can engage in.

I commented on my own personal situation, and the poor support I received over the years with the HSE.

Will post the reply when I receive one. I think a minister is obligated to respond to a written letter?

I don't mean to bring you down man but I think you might be wasting your time appealing to that guy. If there is a response it will most likely be from a civil servant within the HSE. The health system is in such a mess that devoting time to a CFS/ME clinic would be seen as a luxury pursuit. Ireland has some of the most advanced healthcare in the world, if you can pay for it in a private clinic. I know of a guy through a friend that is getting assessed for CFS in private clinics and the money he and his family have spent so far would blow your mind.

I'd love to see vitamins and supplements offered at a discount rate or even on some sort of a prescription basis. For this to happen the mainstream would have to acknowledge ortho-molecular medicine and it's effectiveness. At the moment the EU are trying to clamp down on supplements and the present gov are the most compliant one we've ever had.

If a better government get in after the next election there may be a chance that a more conscientious person gets the health brief and may actually pay attention to your letter. Somebody like Catherine Murphy perhaps, I could be wrong but based on Varadkar's previous form I wouldn't hold my breath. You should look into Chris Shade's IMD product, from what I've read it doesn't cause redistribution, worst case scenario it just won't work. I'm not selling the stuff or anything I just think that in a desperate situation we have to keep our options open, while being safe of course. Based on my own journey I have found the diet shown below and high quality probiotics to keep me ticking over through tough times. Yasmina is easy on the eye too

thelowhistaminechef.com/

Edgarfrndly · 07-05-2015 1:36pm

Worst case scenario, I get a cookie-cutter response. I still felt it was worth sending a letter. If I feel it's not adequately responded to, I'll write a public letter. I'm friends with Chris Shade on facebook. I've been following his work for a long time now. I'm going to stick to the Cutler protocol once I've got the necessary work done in MH, as it's the only protocol I've seen working time and time again. Given the group has around 4500 members, I've a pretty good sample size to see what's working for people and what isn't.

Edgarfrndly · 09-09-2016 10:28pm

I haven't updated this thread in a long time. I return with I guess some good news, and bad news.

The bad news is my health is still very poor. The good news is that the latest metabolomics study has finally indicated what's happening with CFS.

You can read the study's results in full here: http://www.pnas.org/content/early/2016/08/24/1607571113.full

The findings show that CFS is a hypometabolic condition. The metabolites are severely reduced in patients with CFS - and will actually for the first time give us an identified biomarker to work with.

My understanding of the study is as follows. The cells in the body enter a "cell danger response" mode in response to a foreign body like a toxin, virus or bacteria. During this mode, intercelluar communication is restricted. Signalling is affected, mitochondrial function is impeded and it impacts the body's overall ability to perform routine tasks.

They compared it to a mammal's body when it enters hibernation, or a worm entering dauer state to survive harmful conditions. It's a severely restricted mode to be in, and should normally snap back to normal when the danger is cleared. Unfortunately for CFS patients, it never does for some reason.

They are confident they will be able to find functional treatment for the disease. When I am not sure of, but they say it will be sooner rather than later.

I'm not entirely sure if I will get to benefit such treatment, but I am hopeful for the next generation who won't have to go through this horrible journey I have endured.

The evidence is now overwhelming and indisputable. CFS is a real physiological disease and is not in our mind.

On a side note - it saddens me that I first wrote this thread 6 years ago. Time really does fly. Make your days count.

Seanachai · 12-09-2016 2:02pm

Edgarfrndly wrote: »

I haven't updated this thread in a long time. I return with I guess some good news, and bad news.

The bad news is my health is still very poor. The good news is that the latest metabolomics study has finally indicated what's happening with CFS.

You can read the study's results in full here: http://www.pnas.org/content/early/2016/08/24/1607571113.full

The findings show that CFS is a hypometabolic condition. The metabolites are severely reduced in patients with CFS - and will actually for the first time give us an identified biomarker to work with.

My understanding of the study is as follows. The cells in the body enter a "cell danger response" mode in response to a foreign body like a toxin, virus or bacteria. During this mode, intercelluar communication is restricted. Signalling is affected, mitochondrial function is impeded and it impacts the body's overall ability to perform routine tasks.

They compared it to a mammal's body when it enters hibernation, or a worm entering dauer state to survive harmful conditions. It's a severely restricted mode to be in, and should normally snap back to normal when the danger is cleared. Unfortunately for CFS patients, it never does for some reason.

They are confident they will be able to find functional treatment for the disease. When I am not sure of, but they say it will be sooner rather than later.

I'm not entirely sure if I will get to benefit such treatment, but I am hopeful for the next generation who won't have to go through this horrible journey I have endured.

The evidence is now overwhelming and indisputable. CFS is a real physiological disease and is not in our mind.

On a side note - it saddens me that I first wrote this thread 6 years ago. Time really does fly. Make your days count.

The beginning of my symptoms coincided with a mystery virus that I got when I was 13. I went from being lean and having good sleep patterns to being spaced out and prone to weight gain. Hopefully a targeted treatment does come out of this and as you say people can avoid having some of their best years taken up with this setback. We've all earned out stripes I think.

jenny smith · 13-09-2016 11:11pm

Edgarfrndly wrote: »

I haven't updated this thread in a long time. I return with I guess some good news, and bad news.

The bad news is my health is still very poor. The good news is that the latest metabolomics study has finally indicated what's happening with CFS.

You can read the study's results in full here: http://www.pnas.org/content/early/2016/08/24/1607571113.full

The findings show that CFS is a hypometabolic condition. The metabolites are severely reduced in patients with CFS - and will actually for the first time give us an identified biomarker to work with.

My understanding of the study is as follows. The cells in the body enter a "cell danger response" mode in response to a foreign body like a toxin, virus or bacteria. During this mode, intercelluar communication is restricted. Signalling is affected, mitochondrial function is impeded and it impacts the body's overall ability to perform routine tasks.

They compared it to a mammal's body when it enters hibernation, or a worm entering dauer state to survive harmful conditions. It's a severely restricted mode to be in, and should normally snap back to normal when the danger is cleared. Unfortunately for CFS patients, it never does for some reason.

They are confident they will be able to find functional treatment for the disease. When I am not sure of, but they say it will be sooner rather than later.

I'm not entirely sure if I will get to benefit such treatment, but I am hopeful for the next generation who won't have to go through this horrible journey I have endured.

The evidence is now overwhelming and indisputable. CFS is a real physiological disease and is not in our mind.

On a side note - it saddens me that I first wrote this thread 6 years ago. Time really does fly. Make your days count.

That is just one study and i do not necessarily believe it is the answer. A few years ago it was gene expression and the researcher whose name i forget was on the verge of a breakthrough or similar words. Of course researchers will say that they want their funding

In fact Cheney said something similar about the heart, the heart was being protected in his theory.

Hope you get better soon

Edgarfrndly · 14-09-2016 2:34am

jenny smith wrote: »

That is just one study and i do not necessarily believe it is the answer. A few years ago it was gene expression and the researcher whose name i forget was on the verge of a breakthrough or similar words. Of course researchers will say that they want their funding

In fact Cheney said something similar about the heart, the heart was being protected in his theory.

Hope you get better soon

It's not just one study. The study's findings were validated in a second study by a completely different lab and different researchers. In both studies, metabolites were significantly lowered in CFS subjects in comparison to healthy subjects.

They are following up this study with a "big data" study, looking at an even wider array of data. The samples have already been taken, and they are now processing the data - with the assistance of MIT hot shots, who are working on algorithms to process the huge amount of information.

This is the closest we have ever got to understanding the processes of CFS and why it occurs.

But I mean, if you have any criticisms of the findings of their study - I'd be happy to hear them, instead of just asserting you do not believe in their findings.

jenny smith · 14-09-2016 10:13am

Edgarfrndly wrote: »

It's not just one study. The study's findings were validated in a second study by a completely different lab and different researchers. In both studies, metabolites were significantly lowered in CFS subjects in comparison to healthy subjects.

They are following up this study with a "big data" study, looking at an even wider array of data. The samples have already been taken, and they are now processing the data - with the assistance of MIT hot shots, who are working on algorithms to process the huge amount of information.

This is the closest we have ever got to understanding the processes of CFS and why it occurs.

But I mean, if you have any criticisms of the findings of their study - I'd be happy to hear them, instead of just asserting you do not believe in their findings.

What i said was i do not necessarily believe it. There have been loads of claims over the years on people being on the verge of a cure. The amount of people in any of these studies is so small it does not mean much. I will believe it when i see them cure people

Seanachai · 14-09-2016 11:06am

Edgarfrndly wrote: »

It's not just one study. The study's findings were validated in a second study by a completely different lab and different researchers. In both studies, metabolites were significantly lowered in CFS subjects in comparison to healthy subjects.

They are following up this study with a "big data" study, looking at an even wider array of data. The samples have already been taken, and they are now processing the data - with the assistance of MIT hot shots, who are working on algorithms to process the huge amount of information.

This is the closest we have ever got to understanding the processes of CFS and why it occurs.

But I mean, if you have any criticisms of the findings of their study - I'd be happy to hear them, instead of just asserting you do not believe in their findings.

Have you ever been on anti-virals or investigated a viral link to your issues?, there's a private clinic linked to the Mater that is treating Lyme patients but also other viruses in relation to CFS.

Edgarfrndly · 14-09-2016 2:03pm

Seanachai wrote: »

Have you ever been on anti-virals or investigated a viral link to your issues?, there's a private clinic linked to the Mater that is treating Lyme patients but also other viruses in relation to CFS.

I don't have lyme disease. No, it's not a viral infection. And even treating a viral infection in ME/CFS won't resolve the problem in full. Robert Naviaux gave a great interview about why this is the case. I'll try find the link for you.

Edgarfrndly · 14-09-2016 2:15pm

jenny smith wrote: »

What i said was i do not necessarily believe it. There have been loads of claims over the years on people being on the verge of a cure. The amount of people in any of these studies is so small it does not mean much. I will believe it when i see them cure people

That's how the scientific method works. A hypothesis is suggested and either validated or refuted. Nobody up until this point has put forward credible hypothesis for the underlying cause of CFS/ME. There have been studies which have highlighted individual issues, like imbalanced gut flora, reduction in brain matter, AMPK issues, etc.. But none have really looked at the disease in a broad scope.

That's precisely why the OMF's study is different. They are looking at absolutely everything. The list is extensive.

The have a great team, with some of the best minds in various fields working together.

They haven't put forward a claim that they have a cure. They have simply stated that based on their findings - with a much better understanding of the mechanics of CFS/ME - They will be able to develop treatment.

I share your skepticism for claims about CFS/ME cures. But having ready the study in great detail, I have confidence that if anyone finds a cure for this disease - it will be them.

jenny smith · 14-09-2016 4:35pm

Edgarfrndly wrote: »

That's how the scientific method works. A hypothesis is suggested and either validated or refuted. Nobody up until this point has put forward credible hypothesis for the underlying cause of CFS/ME. There have been studies which have highlighted individual issues, like imbalanced gut flora, reduction in brain matter, AMPK issues, etc.. But none have really looked at the disease in a broad scope.

That's precisely why the OMF's study is different. They are looking at absolutely everything. The list is extensive.

The have a great team, with some of the best minds in various fields working together.

They haven't put forward a claim that they have a cure. They have simply stated that based on their findings - with a much better understanding of the mechanics of CFS/ME - They will be able to develop treatment.

I share your skepticism for claims about CFS/ME cures. But having ready the study in great detail, I have confidence that if anyone finds a cure for this disease - it will be them.

http://phoenixrising.me/archives/25982

Edgarfrndly · 14-09-2016 6:05pm

jenny smith wrote: »

http://phoenixrising.me/archives/25982

There was a study done by Dr. Maureen Hanson on mtDNA with relation to CFS patients. Her conclusions were:

Analysis of mitochondrial genomes in ME/CFS cases indicates that individuals of a certain haplogroup or carrying specific SNPs are more likely to exhibit certain neurological, inflammatory, and/or gastrointestinal symptoms. No increase in susceptibility to ME/CFS of individuals carrying particular mitochondrial genomes or SNPs was observed.

So genetic mutations may exacerbate symptoms, but did not have any meaningful difference on the susceptibility of getting CFS.

It may or may not be the case that specific mutations increase susceptibility of getting CFS, but as of yet - there is no evidence to indicate it.

Have you read Naviaux's paper in full yet?

jenny smith · 14-09-2016 6:50pm

Edgarfrndly wrote: »

There was a study done by Dr. Maureen Hanson on mtDNA with relation to CFS patients. Her conclusions were:

So genetic mutations may exacerbate symptoms, but did not have any meaningful difference on the susceptibility of getting CFS.

It may or may not be the case that specific mutations increase susceptibility of getting CFS, but as of yet - there is no evidence to indicate it.

Have you read Naviaux's paper in full yet?

point i was making is Kerr was the man who was talking cures then http://www.telegraph.co.uk/news/science/science-news/3336526/ME-Invisible-disease-is-now-easier-to-read.html

"British researchers are close to developing, for the first time, a blood test and potential drug treatments for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), following groundbreaking work on its genetic origins."

That was 8 years ago. What happened to the potential drug treatments?

Edgarfrndly · 15-09-2016 12:04am

jenny smith wrote: »

point i was making is Kerr was the man who was talking cures then http://www.telegraph.co.uk/news/science/science-news/3336526/ME-Invisible-disease-is-now-easier-to-read.html

"British researchers are close to developing, for the first time, a blood test and potential drug treatments for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), following groundbreaking work on its genetic origins."

That was 8 years ago. What happened to the potential drug treatments?

I think it's important to read the conclusions of the paper in question first. It's titled "Use of single-nucleotide polymorphisms (SNPs) to distinguish gene expression subtypes of CFS/ME" if you want to read it yourself. It's available on Sci-Hub.

This study provides evidence that human SNPs located within CFS/ME associated genes are associated with particular genomic subtypes of CFS/ME. Further work is required to develop this into a clinically useful subtype-specific diagnostic test.

So what they are saying is, people with CFS/ME with certain symptoms are likely to have specific SNPs. There is no claim here of a diagnostic test or treatment, but rather - that further testing would need to be performed to validate the findings and to create a diagnostic test. Which it has not been done.

I think the difference between this and the latest paper by Robert Naviaux is that Naviaux's metabolomics findings has been validated in a second independent study. It is a lot closer to a claim of being able to develop a diagnostic test than Dr. Kerr's original study - who btw, I've not heard about in some time.

Look - it's definitely ok to have a healthy amount of skepticism about any studies on CFS/ME. I completely understand it as someone who has had this disease for over a decade. It is fine to be skeptical of claims of treatment or a cure.

But it's also important to stay hopeful - not to the point of deluding yourself. But not to the point where we completely disregard every credible scientific paper on the illness.

Seanachai · 15-09-2016 9:53am

Edgarfrndly wrote: »

There was a study done by Dr. Maureen Hanson on mtDNA with relation to CFS patients. Her conclusions were:

So genetic mutations may exacerbate symptoms, but did not have any meaningful difference on the susceptibility of getting CFS.

It may or may not be the case that specific mutations increase susceptibility of getting CFS, but as of yet - there is no evidence to indicate it.

Have you read Naviaux's paper in full yet?

Some people seem to be just poor detoxers, possibly related to the cytochrome P450 enzymes. I could never tolerate a freshly painted room and would get violent headaches if I was exposed even before I got sick.

Edgarfrndly · 15-09-2016 11:08am

Seanachai wrote: »

Some people seem to be just poor detoxers, possibly related to the cytochrome P450 enzymes. I could never tolerate a freshly painted room and would get violent headaches if I was exposed even before I got sick.

I'm the exact same. Paint fumes makes me extremely ill for days. I haven't painted my room in years because of it. It's pretty common in CFS - multiple chemical sensitivity is the name for it I believe.

Carnmore · 21-04-2017 11:46pm

Where's the best and cheapest place to buy the Andy Cutler protocol?

Edgarfrndly · 21-04-2017 11:52pm

Carnmore wrote: »

Where's the best and cheapest place to buy the Andy Cutler protocol?

I have the book here somewhere. To be honest - you don't really need it. There's not much to it.

You take DMSA and ALA every 3 hours for 3 days, and then take a 4 day rest period. Take a good multivitamin like oxylent to replenish each day.

Start off with a low dose like 12.5mg, and gradually taper it up every 6 - 8 rounds. Just join one of the groups on facebook.

Personally, I had no results with the protocol over 80 rounds or so. But I have seen some people who have had good results.

Carnmore · 22-04-2017 12:07am

Edgarfrndly wrote: »

I have the book here somewhere. To be honest - you don't really need it. There's not much to it.

You take DMSA and ALA every 3 hours for 3 days, and then take a 4 day rest period. Take a good multivitamin like oxylent to replenish each day.

Start off with a low dose like 12.5mg, and gradually taper it up every 6 - 8 rounds. Just join one of the groups on facebook.

Personally, I had no results with the protocol over 80 rounds or so. But I have seen some people who have had good results.

Thanks but I meant the chelators and supplements rather than the book - I have the protocol http://www.maybeitsmercury.com/how-exactly-to-chelate-using-the-andy-cutler-protocol.html

Edgarfrndly · 22-04-2017 12:22am

Carnmore wrote: »

Thanks but I meant the chelators and supplements rather than the book - I have the protocol http://www.maybeitsmercury.com/how-exactly-to-chelate-using-the-andy-cutler-protocol.html

I ordered mine in the past from a place called living supplements. Most people order from there. They are the cheapest.

Graces7 · 23-04-2017 4:17pm

Edgarfrndly wrote: »

I'm the exact same. Paint fumes makes me extremely ill for days. I haven't painted my room in years because of it. It's pretty common in CFS - multiple chemical sensitivity is the name for it I believe.

Yep. My old enemy! Fabric conditioners.. DW40 ... paint.. every chemical there is.

Seanachai · 24-04-2017 1:34pm

Edgarfrndly wrote: »

I have the book here somewhere. To be honest - you don't really need it. There's not much to it.

You take DMSA and ALA every 3 hours for 3 days, and then take a 4 day rest period. Take a good multivitamin like oxylent to replenish each day.

Start off with a low dose like 12.5mg, and gradually taper it up every 6 - 8 rounds. Just join one of the groups on facebook.

Personally, I had no results with the protocol over 80 rounds or so. But I have seen some people who have had good results.

Have you considered that maybe the exposure to mercury compromised your immune system enough to allow an opportunistic virus to get in? The mercury itself may have had an effect but the fatigue could actually be caused by a virus. If they get into the vagus nerve they can cause a lot of problems. There's a private clinic across from the Mater now dealing with viral issues.

Carnmore · 24-04-2017 1:37pm

Seanachai wrote: »

Have you considered that maybe the exposure to mercury compromised your immune system enough to allow an opportunistic virus to get in? The mercury itself may have had an effect but the fatigue could actually be caused by a virus. If they get into the vagus nerve they can cause a lot of problems. There's a private clinic across from the Mater now dealing with viral issues.

Hi Seanachai. An endocrinologist said similar about a virus suppressing the immune system recently. What's the name of the clinic you mentioned (PM me if necessary)

Thank you

Damien M · 27-04-2017 1:27pm

Carnmore wrote: »

Thanks but I meant the chelators and supplements rather than the book - I have the protocol http://www.maybeitsmercury.com/how-exactly-to-chelate-using-the-andy-cutler-protocol.html

I would goon the FB page, Andy Cutler Think Tank I think it's called, it's moderated by people who have used his protocol with great success. Of course there are those who it hasn't worked for. All Mercury has to be removed from the teeth, I know of some people tried using chelators while still having a dozen or so fillings. :eek:

Shawn Bean on FB, a functional med doc in America has a lot of good stuff on Mercury, Mold, Lyme Disease etc, the thing with Lyme is its very hard to test if it's burrowed into the body, repeated tests can be needed to see if its there. Other poster said that opportunistic viruses can enter the body once Mercury has done its dirty work, this is Cutler's stance on a lot of issues-sort out the Mercury and the body can fight off the Lyme/Mold etc.

I wouldn't give up on the Cutler Protocol just yet.

Seanachai · 16-05-2017 1:32pm

Carnmore wrote: »

Hi Seanachai. An endocrinologist said similar about a virus suppressing the immune system recently. What's the name of the clinic you mentioned (PM me if necessary)

Thank you

I have used enzymes in the past to try and address viruses, I used a product called 'Virastop', it is now sold under the new name 'Enzyme defense'. I had a pretty bad herx reaction which indicated to me that viral issues were a part of my condition. I've tried the new product in the last few days and I also had a reaction, with an improvement in energy levels and digestion. I'm saving to get a loan and I'm basically going to get tested to the hilt and try out different protocols on myself and visit one of the functional medicine doctors that we have here now (thank you athletes & body builders :cool:).

I hate the public health service with a passion (not the staff), even when I do get to see a consultant I can almost predict the outcome, right down to the phrases that they all use to dismiss complaints. I have all my results on record and if the functional medicine results show a problem where the others gave me the all-clear I will post them up here to show that there are probably thousands of people with chronic illness that are being dismissed by the public health system because of either ignorance or poor quality diagnostics.

antifyre · 23-11-2017 10:32am

Carnmore wrote: »

Hi Seanachai. An endocrinologist said similar about a virus suppressing the immune system recently. What's the name of the clinic you mentioned (PM me if necessary)

Thank you

Anybody have any good/bad experiences with this particular clinic? Looking for a possible diagnosis on very CFS like symptoms that have been on and off for a year now. PM greatly appreciated if it's not the done thing to post here...

bo0li5eumx12kp · 13-09-2019 8:19am

Old thread.

Any old posters still active?

How did the DMSA work out?

every_other · 13-09-2019 10:04am

Hi All, I stumbled across this thread but had to post...

Please be aware the standard Lyme test done via GP's isn't the most reliable. If you arent tested within a particular time-frame of being infected it can come back as a 'false negative' or if you are already chronically ill, it can also come back 'false negative' (the antibodies are not produced by the body as its so immune suppressed). Please refer to TickTalk Ireland (the go-to resource on everything Lyme related) which explains this further. A family member got severely ill and we got these 'false negatives' but we kept digging and ruled nothing out. Unfortunately alot of chronic Lyme disease diagnosis's can be missed and mislabelled as Fibro/MS etc. It really is a hot topic of debate as to how inaccurate these tests are.

With regards to our Lyme journey, we of course pursued the medical route but we also went to a herbalist and tried biomagnetic therapy. Found magnetic therapy quite beneficial for the extreme nerve pain. Given how ill they were we had to pursue other options. Thankfully huge improvements over the past two/three years.

80j2lc5y7u6qs9 · 13-09-2019 10:31am

every_other wrote: »

Hi All, I stumbled across this thread but had to post...

Please be aware the standard Lyme test done via GP's isn't the most reliable. If you arent tested within a particular time-frame of being infected it can come back as a 'false negative' or if you are already chronically ill, it can also come back 'false negative' (the antibodies are not produced by the body as its so immune suppressed). Please refer to TickTalk Ireland (the go-to resource on everything Lyme related) which explains this further. A family member got severely ill and we got these 'false negatives' but we kept digging and ruled nothing out. Unfortunately alot of chronic Lyme disease diagnosis's can be missed and mislabelled as Fibro/MS etc. It really is a hot topic of debate as to how inaccurate these tests are.

With regards to our Lyme journey, we of course pursued the medical route but we also went to a herbalist and tried biomagnetic therapy. Found magnetic therapy quite beneficial for the extreme nerve pain. Given how ill they were we had to pursue other options. Thankfully huge improvements over the past two/three years.

TickTalk Ireland is only one viewpoint and i question if it is the go-to resource on everything Lyme related. The site says Tick Talk Ireland is composed of a small group of passionate volunteers wanting to provide accurate information about the prevention, diagnosis and treatment of Lyme Disease

Is the information from medical doctors?

every_other · 13-09-2019 10:43am

Grady Uninterested Statistics wrote: »

TickTalk Ireland is only one viewpoint and i question if it is the go-to resource on everything Lyme related. The site says Tick Talk Ireland is composed of a small group of passionate volunteers wanting to provide accurate information about the prevention, diagnosis and treatment of Lyme Disease

Is the information from medical doctors?

Yes TickTalk is mostly patients helping patients. As I understand Lyme testing is very contentious, not just here, but in the UK and the States. Attended the National Lyme conference just to learn more (Ticktalk run this as far as I know). There was various medical professionals and doctors from a variety of backgrounds and they discussed the standard test and how it can give a false negative. As far as I know or think Marc McSharry and Lynn Boylan have been actively lobbying change to the testing here in Ireland. Again this is all just learning and exploration from what Ive picked up over the past few years. Not a medical professional myself but I have learned Lyme is a very complex disease.

80j2lc5y7u6qs9 · 13-09-2019 10:52am

every_other wrote: »

Yes TickTalk is mostly patients helping patients. As I understand Lyme testing is very contentious, not just here, but in the UK and the States. Attended the National Lyme conference just to learn more (Ticktalk run this as far as I know). There was various medical professionals and doctors from a variety of backgrounds and they discussed the standard test and how it can give a false negative. As far as I know or think Marc McSharry and Lynn Boylan have been actively lobbying change to the testing here in Ireland. Again this is all just learning and exploration from what Ive picked up over the past few years. Not a medical professional myself but I have learned Lyme is a very complex disease.

Are Marc McSharry and Lynn Boylan doctors? I know medical doctors who say the tests for Lyme is trustworthy. If National Lyme conference is run by tick talk it is just their view just like some people make claims about ME which are just an opinion of non medical people

Who are the various medical doctors who spoke of a false negative? What istheir background and do they profit from private practice like the CfS experts

every_other · 13-09-2019 10:58am

Grady Uninterested Statistics wrote: »

Are Marc McSharry and Lynn Boylan doctors? I know medical doctors who say the tests for Lyme is trustworthy. If National Lyme conference is run by tick talk it is just their view just like some people make claims about ME which are just an opinion of non medical people

Who are the various medical doctors who spoke of a false negative? What istheir background and do they profit from private practice like the CfS experts

Whoops sorry the two people I mentioned are politicians! I guess look up the lyme conference website and see the speakers

They are all online and detail their backgrounds but it was interesting to hear their viewpoint too. And yes absolutely I do agree with you, who is benefiting and if its private, a hugely important factor.

Edgarfrndly · 13-09-2019 3:41pm

Hi guys - dlofnep here again.

I don't update this thread anymore - but my health is not great. My memory is also faltering over the past few years. I'm on a waiting list to see a neurologist. It's been so many years since I started this thread that I can't remember every thing I've updated people on.

A quick summary - In 2005 I developed M.E.

In 2013 I was bit by a dog, which added some new symptoms that I did not have before like muscle twitching and strong depersonalisation (google it). My memory also started to get worse and worse, forgetting people's names, forgetting the pin for my phone, simple things like that.

I ended up getting tested for bartonella as I know it's transmittable via a dog bite, but also added lyme and a few other tests alongside it around 2016 or 2017. I tested negative for bartonella, but surprisingly tested positive for lyme. I sought treated and spent 18 months on antibiotics. My neurological symptoms prevailed unfortunately. The twitching lessened but didn't completely go away.

One unexpected result for the antibiotics was that I could now tolerate gluten again. One of my first symptoms when I first got ill was my muscles would feel like they were on fire anytime I ingested gluten. And every few months I'd try gluten to see if I could ingest it, but my muscles would feel like they were on fire again.

After the antibiotics I had no reaction to gluten. My muscles felt fine. I ended up gorging on food that I hadn't eaten in a decade for about 6 months afterwards and putting on about 3 stone! Working on getting it off now.

Sorry if this all sounds like incoherent ramblings, I'm trying to piece it all together as best I can.

But overall my health has been the worst it has ever been. I'm only 36, but I feel like I've the mind of a 90 year old. My fatigue still remains and my libido is non-existent. My libido also started to quickly diminish after the dog bite. I'm not sure if they are both linked or not. My testosterone levels were fine with my doctor. But I almost feel asexual at this stage, because I don't think about sex or dream about it. It's a weird feeling. A sense of nothingness.

In terms of M.E - Mostly, I've just been keeping a look at the Open Medicine Foundation's research to try find hope for the future. I was 22 or 23 when I got ill. I finished college with a degree, hopeful I'd find a cure and make a life for myself.

In a few months I'll be 37, living at home with my parents with no job. It's amazing how quickly life passes you by. If I ever get a cure, I'll probably be well into my 40's and my best years will have been behind me. The OMF are making some progress, but their biggest problem is lack of funding and that is heartbreaking to see. The idea that millions of people around the world are chronically ill and could have a cure if only the funding was made available for it. M.E research is chronically underfunded in comparison to pretty much every other long-term disease.

I also sought help for my mental help over the past 3 or 4 years, because mentally I was in a dark place. The impact of years of chronic illness took its toll on me and I tried to end my life, saved through intervention by the gardaí. I guess it's important to be open and frank about our mental health. I see a psychologist every 3 weeks or so and she's lovely to talk to but can only do so much.

Some days are better than others. I try and compare myself to the worst patients with M.E who can't even get out of bed or shower themselves without help. Physically, I am independent. I can shower and do light exercise, but if I push myself I get punished for it with days of bad fatigue. It's mostly the cognitive issues that trouble me. The fatigue and other stuff, I can grind out until a cure is found. But in comparison to a normal person, I just feel horrible and have felt horrible every day for the past 15 years.

Please do not take your health for granted. If I could have 1 year of guaranteed health versus the next 30 or 40 years of illness, I'd take that one good year every time. I hope everyone is doing well.

80j2lc5y7u6qs9 · 13-09-2019 4:53pm

Edgarfrndly wrote: »

Hi guys - dlofnep here again.

I don't update this thread anymore - but my health is not great. My memory is also faltering over the past few years. I'm on a waiting list to see a neurologist. It's been so many years since I started this thread that I can't remember every thing I've updated people on.

A quick summary - In 2005 I developed M.E.

In 2013 I was bit by a dog, which added some new symptoms that I did not have before like muscle twitching and strong depersonalisation (google it). My memory also started to get worse and worse, forgetting people's names, forgetting the pin for my phone, simple things like that.

I ended up getting tested for bartonella as I know it's transmittable via a dog bite, but also added lyme and a few other tests alongside it around 2016 or 2017. I tested negative for bartonella, but surprisingly tested positive for lyme. I sought treated and spent 18 months on antibiotics. My neurological symptoms prevailed unfortunately. The twitching lessened but didn't completely go away.

One unexpected result for the antibiotics was that I could now tolerate gluten again. One of my first symptoms when I first got ill was my muscles would feel like they were on fire anytime I ingested gluten. And every few months I'd try gluten to see if I could ingest it, but my muscles would feel like they were on fire again.

After the antibiotics I had no reaction to gluten. My muscles felt fine. I ended up gorging on food that I hadn't eaten in a decade for about 6 months afterwards and putting on about 3 stone! Working on getting it off now.

Sorry if this all sounds like incoherent ramblings, I'm trying to piece it all together as best I can.

But overall my health has been the worst it has ever been. I'm only 36, but I feel like I've the mind of a 90 year old. My fatigue still remains and my libido is non-existent. My libido also started to quickly diminish after the dog bite. I'm not sure if they are both linked or not. My testosterone levels were fine with my doctor. But I almost feel asexual at this stage, because I don't think about sex or dream about it. It's a weird feeling. A sense of nothingness.

In terms of M.E - Mostly, I've just been keeping a look at the Open Medicine Foundation's research to try find hope for the future. I was 22 or 23 when I got ill. I finished college with a degree, hopeful I'd find a cure and make a life for myself.

In a few months I'll be 37, living at home with my parents with no job. It's amazing how quickly life passes you by. If I ever get a cure, I'll probably be well into my 40's and my best years will have been behind me. The OMF are making some progress, but their biggest problem is lack of funding and that is heartbreaking to see. The idea that millions of people around the world are chronically ill and could have a cure if only the funding was made available for it. M.E research is chronically underfunded in comparison to pretty much every other long-term disease.

I also sought help for my mental help over the past 3 or 4 years, because mentally I was in a dark place. The impact of years of chronic illness took its toll on me and I tried to end my life, saved through intervention by the gardaí. I guess it's important to be open and frank about our mental health. I see a psychologist every 3 weeks or so and she's lovely to talk to but can only do so much.

Some days are better than others. I try and compare myself to the worst patients with M.E who can't even get out of bed or shower themselves without help. Physically, I am independent. I can shower and do light exercise, but if I push myself I get punished for it with days of bad fatigue. It's mostly the cognitive issues that trouble me. The fatigue and other stuff, I can grind out until a cure is found. But in comparison to a normal person, I just feel horrible and have felt horrible every day for the past 15 years.

Please do not take your health for granted. If I could have 1 year of guaranteed health versus the next 30 or 40 years of illness, I'd take that one good year every time. I hope everyone is doing well.

Sorry to hear you were in such a dark place. I am a bit sceptical about ME research. People who did not care about ME till their own got sick now expect everyone to back them. I also think there is a lot of propaganda around ME. If one does not agree with so called researchers one is banned from certain groups. The expert medics are only available to the rich

Do you really think funding is the only thing stopping a cure? Seems to me no one has a clue just pet theories. There was one doctor who said years ago he was two years from a cure, the gene expression guy, i do not recall his name

Edgarfrndly · 13-09-2019 5:49pm

Grady Uninterested Statistics wrote: »

Sorry to hear you were in such a dark place. I am a bit sceptical about ME research. People who did not care about ME till their own got sick now expect everyone to back them. I also think there is a lot of propaganda around ME. If one does not agree with so called researchers one is banned from certain groups. The expert medics are only available to the rich

Do you really think funding is the only thing stopping a cure? Seems to me no one has a clue just pet theories. There was one doctor who said years ago he was two years from a cure, the gene expression guy, i do not recall his name

Yes, their funding is going towards better understanding the disease and ultimately finding treatment and a cure. Not sure if I understand or agree with your cynicism. Their work is freely available to see.

80j2lc5y7u6qs9 · 13-09-2019 6:42pm

Edgarfrndly wrote: »

Yes, their funding is going towards better understanding the disease and ultimately finding treatment and a cure. Not sure if I understand or agree with your cynicism. Their work is freely available to see.

it is also available to see how some medical people get interested only when one of theirs get sick. and how doctors who are experts are only available to the rich. Incline was a prime example of the latter.

It is also shown in Oslers Web how when they thought they had a bloodtest they were arguing over who owned it

Edgarfrndly · 13-09-2019 7:56pm

Grady Uninterested Statistics wrote: »

it is also available to see how some medical people get interested only when one of theirs get sick. and how doctors who are experts are only available to the rich. Incline was a prime example of the latter.

It is also shown in Oslers Web how when they thought they had a bloodtest they were arguing over who owned it

There's no real experts in M.E as far as treatment goes as there is no treatment. So money at present isn't really an issue for patients. But it is a huge issue for researchers.

80j2lc5y7u6qs9 · 13-09-2019 8:43pm

Edgarfrndly wrote: »

There's no real experts in M.E as far as treatment goes as there is no treatment. So money at present isn't really an issue for patients. But it is a huge issue for researchers.

plenty claim to be experts. So i agree to differ with you

Undiagnosed circle of hell.

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