Undiagnosed circle of hell.

tbh

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 .

Grand - you've offered your opinion, it's been heard, thank you. Lets just leave it there - you too Padi

peann

Quick update - I sent off a lab test for some gene testing. I'm checking for a very specific genetic mutation which might explain my (and other's) inability to detox heavy metals naturally. My understanding from watching a lecture on the topic - folate + b12 are not converted to their active forms, which has consequences on glutathione production amongst other things. Gluathione is key in detoxification, in particular heavy metals like mercury. Poor or non-existent glutathione production over the years would lead to an accumulation of heavy metals over time.

One thing I noticed with respect to this specific MTHFR mutation is that many people, despite having low active B12 levels will have astronomically high B12 levels during a blood test. My last blood test a few months back show that my B12 levels were through the roof. I asked my doctor about it, but he said that so long as B12 levels weren't low it was ok. I was a bit suspicious about it, as why have an upper range if it's not dangerous to supersede it by 5 or 6 times the upper limit. From my limited understanding - B12 accumulates as it's not being converted through methylation, hence the high levels in blood tests.

There is a very interesting lecture on it here:

https://www.youtube.com/watch?v=QRHif2aVPvw

Still researching. Still investigating. Still fighting.

MolBee

Interesting peann.

I've heard about the importance of glutathione before. I was actually taking whey powder and supplementing with selenium a few years ago because apparently those two things together is the absolute best way of producing it in the body... never stuck to it though as whey powder makes me heave... Don't know if that would be helpful in the context of any possible gene mutation mind, but just putting it out there.

peann

I eat brazil nuts for a source of selenium but it's a little more complex than that. Waiting on my DNA results now and will see where to go from there.

Still haven't been called for counselling. It's been over a month now, and not a word from them. No wonder suicide rates in Ireland are so high - the support networks are for shíte. Samaritans freephone hotline is still not up - and it has a EU requirement to be setup ASAP.

Was watching the video of poor young boy Donal Walsh (who has sadly passed away today) - He spoke of the help there for people.. But it isn't as immediate as people would like to believe. I've battled this all on my own. Thankfully I'm not as bad as I was - But I still have a rollercoaster of emotions every day. At any moment, I can fall into depression. I find myself getting angry a lot, as I'm not able to express myself properly.

Hopefully I'll see some changes for the better by the end of this year.

Damien M

It's terrible about the counselling-as it's the only 'medical' treatment that will help.

Regarding supplements-are you familiar with Diatomaceous Earth? It's a bit more powerful than Brazil nuts!

peann

I've heard it mentioned from time to time Damien.. I think I have a nice source of selenium, but from what I've been reading about the MTHFR gene mutation, the production of glutathione might be hampered until methylation issues are corrected. I'm still learning and trying to educate myself further on the issue.

I've had a burning sensation in the upper-left of my back (slightly under left shoulderblade) for the past 2 or 3 weeks. Not sure what it could be.

Damien M

Re methylation-have you been to a BioSignature Modulation practitioner, or any of the guys in the ISI, or anyone that is Poliquin certified?
They know all about methylation !

peann

Nope Damien - I'm waiting on my results from 23andme.com to check for 2 specific MTHFR mutations, that play a role in poor methylation.

peann

Sorry for the belated update.

As expected, I had both MTHFR mutations (C677T & A1298C). The implications of this would have meant that I had no ability to detox heavy metals like mercury, which would have allowed them to accumulate. I also have some other mutations with have also played a large role in my poor health. I've done heaps of research, and I'm starting a new protocol this coming week. I've covered it fairly extensively on my blog. I'm also 3.1% Neanderthal, so that's pretty cool!

I'm also going to see the leading IAOMT trained dentist in England soon to use a high-resolution panoramic x-ray to ensure that no amalgam has been missed by previous dentist visits.

So health-wise, I'm pretty crap right now - but I'm learning more and more every day and understand my illness a lot better than I did when I originally created this thread.

My mental health is a bit better - I'm no longer in a deep depression, although I do still get upset and down - just not as bad as before. I did it without anti-depressants, and keeping my mind occupied. I've been doing a course with FÁS to keep me busy - 1 day a week in FÁS, rest is home study which suits me to the ground.

I anticipated being back to normal by now when I originally started - but I'm not and not be for some time. I just truly hope I get there.

TJJH

dlofnep wrote: »

Now that my brain is working, I'm able to think more clearly. Still waiting on an appointment from the Endo. I know my thyroid is probably shot to pieces - as I'm consistently freezing + tired. Secretary is not there til Wednesday - God knows when I'll get an apppointment, and even at that - it's luck of the draw whether they are actually bothered to invest the proper time into testing me correctly. (Anyone who knows a good Endocrinologist that is willing to test Free T3 + T4, amongst the usual antibodies - Shoot me up with a PM )

Fingers crossed - I'll solved this puzzle bit by bit.

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

Mars Bar

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

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

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

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

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

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

Edgarfrndly

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

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

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

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

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

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

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

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

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

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

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

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

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

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.