Undiagnosed circle of hell.

Edgarfrndly · 13-09-2019 10:25pm

Grady Uninterested Statistics wrote: »

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

The only experts in the field of M.E are those who are actively studying it an experimenting in labs. There are many of health professionals who profess to be experts in the disease, but considering we know very little about what causes it and how to address the causes medicinally - I'd be weary of any medical practitioner claiming to be an expert.

To put it another way - if you have M.E, there's no medical professional you can go to with the intent of curing it or treating it properly.

bo0li5eumx12kp · 29-09-2019 11:23pm

On this topic - chronic fatigue - I formerly had a response to high noradrenaline type drugs.

So - ADHD orientated normally.

But these synergise massively with autoreceptor blockers like mirtazapine.

So spent some time on these, but ultimately no dice.

So - I progressed to high dose T4 thyroxine - just to see what would happen.

It's increases sensitivity to noradrenaline - so some effect.

Next step is, explore Liothyronine - T3 supplement - the active form of T4.

It makes sense to me this would work.

bo0li5eumx12kp · 29-09-2019 11:26pm

I also had my mercury fillings drilled out - which made no difference at all.

Also hair samples analysis (mineral state).

High only in Arsenic - probably all the brown rise I eat.

If anyone uses TRS (a heavy metal removal spray - pure snake oil), pm me and I can post it you; I no longer need it - plus it's snake oil (just expensive).

Edgarfrndly · 30-09-2019 12:42am

Some of the more interesting research coming out as of late, is that M.E patients are absent of a specific bacteria (c. sporogenes), which instead of being pathogenic - acts in a neuroprotective role as a mutalistic bacteria (both host and bacteria benefit from each other). The thought is that reintroducing this specific bacteria would be a huge game changer, as it plays a role in tryptophan metabolism which is problematic in M.E patients.

There was a writeup of it but I can't seem to find it.

Seanachai · 08-10-2019 11:30am

Edgarfrndly wrote: »

Some of the more interesting research coming out as of late, is that M.E patients are absent of a specific bacteria (c. sporogenes), which instead of being pathogenic - acts in a neuroprotective role as a mutalistic bacteria (both host and bacteria benefit from each other). The thought is that reintroducing this specific bacteria would be a huge game changer, as it plays a role in tryptophan metabolism which is problematic in M.E patients.

There was a writeup of it but I can't seem to find it.

Faecal Microbiota Transplant would be worth looking into then, it's an expensive experiment though.

bo0li5eumx12kp · 08-10-2019 1:54pm

1) Active Thyroid hormone T3 can increase sensitivity to noradrenaline - have some on mail order.

2) Catecholamine/noradrenaline synthesis can be interrupted by mutations in MTHFr and COMT genes.

23andMe for gene testing?

Got some methylfolate and methylcobalamin in the post - even as we speak.

I've had consistent positive responses to noradrenergic enhancement, but haven't managed to find a means to implement this sustainably.

I think research by Ted Dinan in UCC basically X'd out gut matter transplantation as being of any merit.
Read that a while ago.
Anyone correct me?

Edgarfrndly · 08-10-2019 4:57pm

Clarissa Future Snapdragon wrote: »

1) Active Thyroid hormone T3 can increase sensitivity to noradrenaline - have some on mail order.

2) Catecholamine/noradrenaline synthesis can be interrupted by mutations in MTHFr and COMT genes.

23andMe for gene testing?

Got some methylfolate and methylcobalamin in the post - even as we speak.

I've had consistent positive responses to noradrenergic enhancement, but haven't managed to find a means to implement this sustainably.

I think research by Ted Dinan in UCC basically X'd out gut matter transplantation as being of any merit.
Read that a while ago.
Anyone correct me?

Methylfolate and methylB12 did nothing for me, or anyone else I know with ME. Good luck with it, but don't expect miracles. I developed a website to analyse the raw data from 23andme to look for specific SNP's relating to the methylation cycle so I'm fairly up to scratch on all of them.

As for fecal m. transplant, I haven't heard of any cases where it's cured a patient, but then again - we're talking about a very specific bacteria and it's unknown if a FMT would restore it. They are looking at alternative ways to reintroduce it.

Once again, it's not said that this would cure patients, but would rather assist with neuroprotection which is lost. To cure patients, they need to correct the cause of the metabolic trap, which is at present the best hypothesis on the cause of ME.

bo0li5eumx12kp · 08-10-2019 5:38pm

Edgarfrndly wrote: »

Methylfolate and methylB12 did nothing for me, or anyone else I know with ME. Good luck with it, but don't expect miracles. I developed a website to analyse the raw data from 23andme to look for specific SNP's relating to the methylation cycle so I'm fairly up to scratch on all of them.

As for fecal m. transplant, I haven't heard of any cases where it's cured a patient, but then again - we're talking about a very specific bacteria and it's unknown if a FMT would restore it. They are looking at alternative ways to reintroduce it.

Once again, it's not said that this would cure patients, but would rather assist with neuroprotection which is lost. To cure patients, they need to correct the cause of the metabolic trap, which is at present the best hypothesis on the cause of ME.

Link to website?

It's hardly geneticgenie is it?

Neuroprotection - don't know about it honestly but if it's in reference to neurotoxicity, speculation is that newly approved ketamine jump starts neurogenesis, something something - trophic factor etc.

Perhaps the cause for chronic fatigue is quite diverse from one person to the next but, anything related even distantly to noradrenaline (i.e. thyroid), has always, infallibly been rocket fuel for me.
Methylation is supposedly the process of it's production so, no - certainly not expecting miracles but, curiosity if nothing else.

Well, SAMe, methylfolate and methylcobalaim are all headed my way now so, at least I can check them off the list if nothing else.

Curiosity again but - did you ever try amphetamines/speed etc?

Edit - the primary UK/Ireland genetic testing resource - that is, 23andMe?
Or are there others recommended?

vriesmays · 08-10-2019 5:43pm

dlofnep wrote: »

Yeah, Lyme disease test came back fine.

There are several Lyme infections caused by different bacteria. These tests don't cover all strains.

bo0li5eumx12kp · 24-10-2019 9:23pm

Anyone comment how long they've been chronically fatigued?

How do you pass the day?

What do you expect from the future?

bo0li5eumx12kp · 24-10-2019 9:24pm

Also - does it make any sense to get a 23andme test done if you know already you don't respond favourably to methylfolate methylb12 and SAMe?

Cause even if there is mutation - they're the only treatments, right?

Graces7 · 27-10-2019 6:52am

Clarissa Future Snapdragon wrote: »

Anyone comment how long they've been chronically fatigued?

How do you pass the day?

What do you expect from the future?

I had flu when I was in my mid twenties. ie mid 1960s. Talented young teacher. Never really recovered and one day came to a grinding halt in the staffroom. Literally could not move. I am a strong and stubborn one so had fought increasing illness which made the crash worse

3 weeks later when tests had been negative they sent me on to the psychs. Where they left me until nearly the new millennium .. the new leprosy in the UK is mental illness . drugs, ECT in and out of hospital and all the while very ill

Diagnosis finally as I was seen after three attacks of flu not to be picking up at all.

It was a liberation. Had the internet by then so got off all psych meds and started dealing with truth and reality; to find a different brick wall.. The UK was so bad I left! Came over here just after the millennium and started living ON MY TERMS which is easier here than in the NHS doctor-god situation.

Evry part of it is intensifying with advanced age but I am deeply thankful for life however hard it is. After earlier years... this autumn the worst ever.

I am virtually housebound but that is fine too. Contact with overseas family and work for my hands that helps others

My immune system is down; last time I was to mass I caught a bug and was abed sis weeks so I take care now.

as you know it is far more than fatigue.

The illness is as bad as ever if not worse; this time of year is dire. So I adapt. Lie around! Potter and pootle as I can. Addicted to youtube and knitting.

So .. decades. Lost all my working life, family life. But I AM ALIVE. can find pleasure in tiny things. Safe on my pension so thankful fore that cushioning

bo0li5eumx12kp · 23-11-2019 7:50am

In terms of brain scans used to rule out other conditions investigations for CFS, what is the go to?

CAT?

MRI?

fMRI?

PET?

Anyone had any brain scanning done?

Graces7 · 23-11-2019 9:32am

Clarissa Future Snapdragon wrote: »

In terms of brain scans used to rule out other conditions investigations for CFS, what is the go to?

CAT?

MRI?

fMRI?

PET?

Anyone had any brain scanning done?

had an MRI years ago re an intractable migraine. They were punctilious with head pain.

CFS/ME does not exist here. Had one GP look very puzzled then five minutes late light dawns... "Oh you mean chronic fatigue" with an air of dismissal.

We ar told by experts to inform anaesthetists we have M.E

Tried that too She simply asked if I knew that that stood for.. I did and reeled it off to no effect

Deeply thankful for the online groups and occasional good drs.

NIMAN · 23-11-2019 9:42am

Since the OP last posted on March 2013, I wonder did they ever get to the bottom of their illness?

bo0li5eumx12kp · 24-11-2019 1:03pm

Edgarfrndly wrote: »

Methylfolate and methylB12 did nothing for me, or anyone else I know with ME. Good luck with it, but don't expect miracles. I developed a website to analyse the raw data from 23andme to look for specific SNP's relating to the methylation cycle so I'm fairly up to scratch on all of them.

As for fecal m. transplant, I haven't heard of any cases where it's cured a patient, but then again - we're talking about a very specific bacteria and it's unknown if a FMT would restore it. They are looking at alternative ways to reintroduce it.

Once again, it's not said that this would cure patients, but would rather assist with neuroprotection which is lost. To cure patients, they need to correct the cause of the metabolic trap, which is at present the best hypothesis on the cause of ME.

Ever have brain scans?

MRI/PET?

Anything of interest?

Edgarfrndly · 24-11-2019 3:48pm

Clarissa Future Snapdragon wrote: »

Ever have brain scans?

MRI/PET?

Anything of interest?

I had an MRI a few years ago which showed nothing. It typically won't show anything. I think there's a reduction in grey matter in CFS patients, but overall - nothing stands out.

It's metabolic studies you really need, as that's where the issue appears to lay. The OMF are trying to produce a diagnostic test for less than $200. Their equipment currently costs $30,000 a pop but they think they can get it down to $200 so diagnosing can be quick, cheap and efficient.

BigGeorge · 25-09-2021 8:43pm

Sorry to bring this thread back up - has anyone got suggestions on where to get DMSA, struggling to find it anywhere at a 100mg dosage?

Advice appreciated

GoogleBot · 18-10-2021 8:24pm

https://www.boards.ie/discussion/comment/117939175#Comment_117939175

Hi George have you found what was the problem ?

Undiagnosed circle of hell.

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