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

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My recovery story, in case anyone is interested

A.B.

Senior Member
Messages
3,780
I had my dental amalgam removed and I would do it again. Even though I can't prove that it did anything, in the following months I gradually lost some emotional and mental symptoms which have never returned. I have never had any lasting improvement with anything else. I'm more skeptical about detox. The drugs approach is highly speculative and possibly dangerous, the natural approach is nonsense.
 
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Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
There are things people can do like pacing, dietary changes, antivirals, supplements, etc that will improve some patients to some extent (doesn't work for some patients, some patients may have a lot more improvement).

But the recovery to a full or almost full life itself is spontaneous. (So far, there is no treatment to get a recovery).The reason, a lot of people who made the above changes have not improved at all, or improved some and are stuck at that level.

In the ones that have recovered, they mistakenly attribute the recovery to the changes they made above. Crucial difference!

Perhaps they are so excited that they have recovered, and they want to help others- good thoughts!

People who are reading such recovery stories may make some changes, but they probably have already tried some or all of these changes.

@justy there is no reason to feel that we haven't done more to get better, we are all doing the best we can with our circumstances. Some bodies recover, some don't.

The crucial difference mentioned above is very important to remember in such success stories.
 

brenda

Senior Member
Messages
2,266
Location
UK
@justy
I sympathise with you for trying everything you could think of in the past as l did too, many times. I went raw vegan and macrobiotic for a while and agree with James that it is just the foundation and other factors must be brought in, and for myself it involved emotional healing and coming to terms with how a failure to diagnose aspergers has impacted my life and relationships.

I didn't get the diet right though for various reasons and had some healing but it stopped. After quitting gluten which l still ate on the macro diet in the form of seitan and avoiding the high folate in the raw vegan diet, along with the usual stopping of dairy and sugar, it started to kick in and stay this time so l think that it has to be just right. But even then there will be other things that you need to quit to get the immune system recovering.

As James has pointed out, it is trial and error to get it right and to do that we must be able to listen to our bodies and know what is harming us and stopping recovery.

It is interesting to hear people deny that our bodies can heal because mine had got as low as it was possible as a universal reactor and unable to take anything even herbs and has been in that state for so long. If mine can heal from mercury poisoning twice, pesticide poisoning, Lyme and many other infections at the age of 65 then anyone can do it all it takes is perserverance to get the formula right to kick the healing in.
 

maddietod

Senior Member
Messages
2,859
@justy
... anyone can do it all it takes is perserverance to get the formula right to kick the healing in.

I think that there are some people here who have found the right combination of diet, lifestyle (e.g. pacing), doctor, and treatment protocol, and have experienced improvement or remission. I want to emphasize that for some people the diet part isn't necessary, and for some people the doctor part doesn't help. And that you can go to a great doctor, but if they don't have tools in their toolbox that fit your presentation, they can't do much.

I love when people share stories of what works for them. There might be a few of us with a similar illness pattern, who improve following the shared regimen. This is a great way to use each other as resources.

I appreciate how clearly James says 'This works for me; give it a try if you'd like.' We even get short videos to watch! This is very generous, lots of fun, and will probably help some of us.
 

aquariusgirl

Senior Member
Messages
1,732
Yo james..congrats man.

But didn't you say .. your B12 is high... out of range?? we see this in all these illnesses autism CFS...mental illness....

Unless mistaken, it means your B12 is leaking out of the cells cos there is not enough folate to keep it in the cells or maybe its related to lack of Lithium to transport B12.

Rich VanK has written about the first issue on this forum.. .

Amy Yasko (www.ch3nutrigenomics.com) has written about the lithium connection...& trust me, we patients learned that the hard way.. (that you can take all the B12 you like ..if Lithium is low .....it aint going anywhere....) I pounded B12 for years!! & got nowhere...

There is some connection between Lithium & BH4......& that comes from James Clelland who is researching the role of these 2 in bipolar & schizophrenia....(.US researcher in mental illness.)

Google for more info & I've heard that Merck has locked up the global supply of BH4. Very hard to get hold of...

Not surprised about your mum's health issues.... many have observed the familial connections v. CFS, autism and mental illness. And it's not that its stressful living with these folks ......you have genetic weaknesses IMO..& you need to figure them out at some point or hope that the biomed researchers figure it out.

STudy out recently said that if u have the snps (genes) that predispose to schizophrenia, you are 75 -100% likely to get the disease. they also said its 8 illnesses not 1.. and there hasn't been a new drug for 50 years.....if memory serves. anyway.. u can double check with google.

Take care!
 
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Messages
52
@aquariusgirl ok you've terrified me. But I feel fine now? maybe I do just have high b12? I had never taken b12 supplements/shots before when I had my b12 test. If i feel fine and i am in remission should I be worried? thanks

also I'm no longer depressed either
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
James, I wasn't talking to you in a negative way by any means. I'm so happy that you've gotten well. Anybody who gets well from this, God bless them and may you have a very happy life.

If I had to do it over again, I would never have had my amalgams removed. Granted, I'm glad to have a completely white smile when I smile or laugh, but it didn't change my life. It didn't make it better. I went to one of the top biological dentists in the country who deals with this after that happened. He did it the right way and I still was sick.

I did chelation treatments I did mineral IVs, you name it I did it and I was still sick. It was a lot of money it was about $5,000 to have done. Plus, other expenses with vitamins and chlorella and all that stuff.

Sometimes I feel like we keep looking for things on the outside to make us better when it's really inside and what's going on in the body and those supplements and treatments just can't get to it, whatever "it" is.
 
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aquariusgirl

Senior Member
Messages
1,732
sorry James. Not trying to scare you.. It could be that your B12 is coming down into range?

You would have to track it and even a British GP can run that test...you can get B12 from food if your stomach is working and intrinsic factor & all that stuff I guess.

What I wrote above is pretty much all I know. I'm just suspicious that something is going on with BH4 & Lithium & B12. See below.

It sounds like you are in a good place, but I'd just watch it ....and keep an eye on the research. I think we got dealt a bad hand genetically & its not an accident we got ill.

Also, I do wonder if folks like us acquire a heavy metals load while we are ill & if so, Professor Boyd Haley says mercury is "tightly bound" in the body.. and so I am skeptical that once you have mercury, you can detox it without chelation.

Haley has videos on you tube..if you are interested. Problem is the most common chelators are flawed, according to him.

Be well!



http://www.ch3nutrigenomics.com/php...t=26219&p=156290&hilit=james+clelland#p156290


Maybe James Donald Clelland
Nathan S. Kline Institute For Psych Res

Grant 1R21MH082331-01 from National Institute Of Mental Health IRG: NPAS

Abstract: Tetrahydrobiopterin (BH4) is a vital cofactor that maintains availability of amine neurotransmitters (NT) such as Dopamine and Serotonin, regulates Nitric Oxide synthesis, and stimulates and modulates the Glutamatergic system. Dysregulation of NT systems has been implicated in the pathogenesis of psychiatric disorders, including bipolar disorder (BPD). BPD has a large genetic component, and of great significance to this application, the GCH1 gene (which encodes GTPCH, the first and rate-limiting enzyme in the BH4 biosynthesis pathway), was recently associated with BPD. We have observed that patients with psychiatric disorders (including BPD) have a deficit of plasma total biopterin (a measure of BH4) compared to control subjects, that appears to be alleviated via lithium (Li) treatment. This finding, along with a) the known roles of BH4 in NT maintenance, and b) the association of the BH4 biosynthesis gene GCH1 with BPD, supports our hypothesis that our measured plasma biopterin deficit is involved in the etiology of BPD. Furthermore, animal study data showing upregulation of GCH1 mRNA via Li, supports our finding that Li treatment increases biopterin levels. Based on the central roles of BH4 in NT synthesis, we now hypothesize that BPD susceptibility is influenced by a GCH1 gene variant that decreases GCH1 mRNA levels, leading to a BH4 deficit that can be alleviated by Li. This new hypothesis, which will be tested during this study, is based on striking preliminary data In 30 BPD subjects and 46 controls, we confirmed that GCH1 is significantly associated with BPD (OR, 3.2,p=0.038), and importantly, we also showed that subjects with the BPD-associated GCH1 allele have lower GCH1 mRNA. In addition, analysis of 17 BPD subjects (9 Li treated and 8 not Li treated), showed that a) Li increases GCH1 expression, and b) that Li treatment elevation of GCH1 mRNA is highest in patients without the BPD-associated GCH1 allele, a finding which suggests Li treatment may be less effective in patients with the associated allele. Based on these very exciting data, this exploratory study is designed to test our hypothesis that BPD subjects have a plasma BH4 deficit (reflecting a CNS deficit) that can be alleviated by Li treatment, particularly in patients without the BPD- associated GCH1 allele. The Specific Aims of this study are1) To recruit 280 BPD subjects, genotype each for the GCH1 allele previously associated with BPD, and compare to genotypes of 280 matched controls. 2a) To collect pre- and post-Li treatment bloods from the 280 BPD subjects recruited under Aim 1. 2b) To Assay peripheral GCH1 mRNA expression in the pre and post-treatment samples 2c) Assay plasma biopterin levels in the collected in the pre and post samples, and 2d) To test for interactions between GCH1 genotype, GCH1 mRNA levels, and biopterin in pre- and post-Li treated BPD subjects and test for correlations with assessment scales. Understanding the roles of GCH1 and BH4 in BPD etiology may allow improved treatment and clinical outcomes for patients, and early interventions for those at risk of developing this devastating illness

Project start date: 2009-04-09

Project end date: 2011-01-31
 
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aquariusgirl

Senior Member
Messages
1,732
james7a said:
maybe I do just have high b12? I had never taken b12 supplements/shots before when I had my b12 test.

I think you are saying your blood B12 was high even though you weren't supplementing...but this would be consistent with a B12 transport issue, right? the question is, is it high in the blood, but low in the cell?

Google RichVanK, B12, CFS. I think he wrote about this.

That's why folks look at MMA or do the methylation panel from vitamin diagnostics.

@Sushi... can you help with links? thanks. I'm not sharp today......
 

5150

Senior Member
Messages
360
Except he does know exactly how to fix CFS/ME. Not 25%. 100% (or close).

Congrats James for figuring out what it takes. Like your videos.

I think Dr Lipkin and all would like to know this result. Maybe his job isn't needed, if this is the "way out".
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Maybe James Donald Clelland
Nathan S. Kline Institute For Psych Res
Can you give a link for this?

I think you are saying your blood B12 was high even though you weren't supplementing...but this would be consistent with a B12 transport issue, right? the question is, is it high in the blood, but low in the cell?
The test was probably total B12, which doesn't usually mean much. Some, or a lot of it may not be available (oxidized or something?)

@Sushi... can you help with links? thanks. I'm not sharp today.....

Sorry, not today, too much on my plate.
 
Messages
52
@Tammy I hope so!!
Justy's situation had me thinking last night and I realized i never really stated it here and that is I had a house to my self whilst I followed my recovery routine. I didn't have to face any drama of any kind (in regards to my mum even though it was in the back of my mind). I feel this can't be overlooked. All I can do is share my story and there are some people that can try what I've done if they are able to.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
@Tammy I hope so!!
Justy's situation had me thinking last night and I realized i never really stated it here and that is I had a house to my self whilst I followed my recovery routine. I didn't have to face any drama of any kind (in regards to my mum even though it was in the back of my mind). I feel this can't be overlooked. All I can do is share my story and there are some people that can try what I've done if they are able to.

That's why I made the comment I did about younger people and recovery. Dr Ramsay also said famously about the ones who did better being able to rest at the start.

However, even if patients were allowed to do just that by doctors (and in my day many would have been harmed by the graded exercise regimes) so many practical things stop adults who are hit by the disease being able to rest as we need to. We no longer have the TB sanatorium or anywhere safe to go.

Even if did who would care for the families of adults with children? It's a huge public health issue not being addressed, even by those of us with a public health system

It sounds as if the resources you had went well beyond not having to worry about paying the food bill. It was the gas bill, the council tax, the electricity the mortgage.

This doesn't detract at all from your story and your achievements. Just an explanation for why your story may not help as many people as you would wish (and that is sad).

Just as an aside as a young adult with acute onset ME one of the first things I did in the early years was to address my diet and stress but that didn't cure me or even put me closer to better health in any way and even sapped my strength. So the potential group is even smaller.
 
Messages
42
I agree with @justy.

Then I went to the dentist and he needed to remove an amalgam and it cracked and I swallowed half of it. He didn't use a dental dam. After that I became deathly ill. I continue to try the diet that I was on with no luck. Everything I had worked for had going up in smoke. I was convinced it was due to my amalgams in my mouth and having swallowed that amalgam.

I bought a juicer I started juicing, I continue to take yeast medication and eat well. It was like the floor had dropped out from underneath me. The very tooth that the amalgam was removed out of, I lost. Over a two-year. I had all my amalgams removed I did chlorella and I was so into detoxing to the point of detoxing too much and I felt no better. Today it's showing I have no mercury in my system, or very little mercury so that is not the issue.
How did you measure the mercury levels in your body? Blood, urine and hair tests may be misleading. Sometimes those poisoned by mercury have very low levels in the hair and urine as they are unable to excrete mercury. A study of 40 women with fibromyalgia found that while they had the same blood mercury levels as controls, they had only one-third the urine level - meaning they were excreting less and the mercury was building up in their organs.http://www.sciencedirect.com/science/article/pii/S0048969707005529

Some people find chlorella doesn't help and may even exacerbate their problems. If you no longer have amalgams you could try frequent low dose chelation using alpha lipoic acid. About 12 mg every 3 hours for 3 days (even when sleeping) would be a reasonable dose to start on. Exacerbation or improvement in symptoms is confirmation that mercury is a problem for you.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@David Hammond -it was through urine and hair testing and then also muscle testing at another place. Now I'm being told that I don't have mercury anymore due to muscle testing but God knows we don't know how that works. If it works! I'm not a big fan of muscle testing and Kinesiology.

I've had chelation, IV's of minerals, with glutathione etc. lots of glutathione IV's-I'm done trying to get rid of mercury and honestly I don't think that's my issue anymore. I had this done back in 2001, it's now 2015.

When my amalgams were in my mouth, I felt much better actually! I was working at 2 different places and enjoying my life.

For me, Mercury is not the issue.
 
Messages
52
@Tammy I hope so!!
Justy's situation had me thinking last night and I realized i never really stated it here and that is I had a house to my self whilst I followed my recovery routine. I didn't have to face any drama of any kind (in regards to my mum even though it was in the back of my mind). I feel this can't be overlooked. All I can do is share my story and there are some people that can try what I've done if they are able to.

I just made a video to clarify this just to let people know if my advice is for them or not.

https://www.youtube.com/channel/UCM-sTCzs4dmwGkyfeFdWVPg/videos

@LifeIsSweet Yeah, I'm just showing what worked for me and if you're in a similar position to me.. maybe it can work for you?

It's not like we have a abundance of treatments we can be trying purely for CFS.. I wasn't willing to wait for science to come up with an answer thats for sure! I think it is important for everyone reaching remission or improvements to report them back to everyone else. It doesn't hurt to share the information. I never made my thread 'the cure for cfs' :) I just said it's how i recovered.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I think James is only reporting about what helped him improve. He never said he had a cure for everyone.

Absolutely and there is nothing wrong with that.

The discussion I feel is not intended in any way to detract from or belittle his recovery and methods.

We are comparing experiences here and seeing what can be learned in an individual way though what James has done.

If I ever find a method or cure for my symptoms then I expect the same conversations.