Routine Treatments

[sillysocks84]

I am new to this. Although mine started in Sept. 2012, I had no idea what it was at the time and then got pregnant in Oct 2012 with my son and thought I was completely recovered from the mysterious illness. Well it came back slowly Aug 2014 until in Nov I thought I had a lung disease. All this to say, I have been doing some digging into the forums here to see how everyone copes with their cfs/me and how they go about treatments. I know everyone responds differently to different treatment but I am very interested to know what everyone's treatment looks like. It would be a valuable resource to all of us to share this with each other. So if you could....

1. Please explain what your treatments are with the estimated duration of time you've been doing them.
2. Rate 1-10 (10 the best) how the treatments are impacting your health.

My treatment is Vitamin C (1,000 mg a day) Vitabmin B-complex, D-ribose (5-15 mg a day), Resveratrol with Nicotinamide Riboside, DHEA (25 mg a day). I have been doing this for about a month, and my chest tightness is better, breathing more deep but not "fully". I still tire easily from walking, but am noticing some days are getting better than others. I would rate this a 5 so far. It's helped a little and been a month so far. To the ones on here with more experience, is there something I am taking that may be hurting my cfs/me?

 

[Sushi]

So if you could....
1. Please explain what your treatments are with the estimated duration of time you've been doing them.
2. Rate 1-10 (10 the best) how the treatments are impacting your health.

Great idea, but in practice, I don't think it is practical--for a number of reasons.
Not only do we each respond differently but the same person often responds very differently to a treatment over time. Some protocols that are "helpful" to underlying conditions, also have side-effects, so it is very hard to rate how they are impacting our health. Also, many of us have been doing protocols for decades, one protocol impacts others, etc. We all likely will have different test results and thus treating different manifestations of ME/CFS.

There is also the privacy issue. Some would be willing to do this and some not.

I think any effort like this would need to be very well organized. There are some sites that have attempted this, including HealClick.

Best wishes,
Sushi

 

[sillysocks84]

I understand, Sushi. I thought of all that, but the doctors don't help at all in my opinion. They just don't understand. I have no where to turn and feel desperate. I just turned 30 and have an almost two year old. I am looking at a long time of this and just want to know what kind of protocol I could try out or add something/delete something with mine. Even if it meant managing this thing marginally better. Sorry if this was too transparent. I know about privacy issues and all that. My family is caring but has no clue so I will just poke around here some more and see what I can find.

 

[Sushi]

the doctors don't help at all in my opinion. They just don't understand. I have no where to turn and feel desperate.

This can certainly be true, but there are ME specialists who are usually able to help increase functionality and reduce symptoms. Unfortunately they are a scarcity and you usually have to travel (and pay out of pocket) to see one and get appropriate testing and treatment.

Best wishes,
Sushi

 

[sillysocks84]

Ok, thank you, Sushi. I was afraid of that. But at least it's something and hopefully they will do tons of more research into this.

 

[minkeygirl]

@sillysocks84 it is possible to find docs who aren't specialists but understand and are willing to work with you.

I started seeing A naturopath in 2013 and she totally gets the viral/ infection component along with the immune stuff. She is very close and we do Skype appts.

I'm lucky my PCP will run any labs I ask for

I do pay out of Pocket but it's not that much IMO.

So there are people who can help. Just start googling.

 

[WillowJ]

I have no where to turn and feel desperate.

I'm sorry it's hard. I think most/all of us have been there at least once.

Best wishes.

 

[SOC]

This can certainly be true, but there are ME specialists who are usually able to help increase functionality and reduce symptoms. Unfortunately they are a scarcity and you usually have to travel (and pay out of pocket) to see one and get appropriate testing and treatment.

I do have to travel a long distance (1200+ miles = 1900+ km) to see my ME specialist, and travel cost is out of pocket (although tax deductible), but I don't pay out of pocket for treatments and labs. All that is covered by my insurance... not 100%, because nothing is, but it's covered at the same level as my local doctor visits. Of course that's not true for all ME specialists or all insurance policies.

 

[ahmo]

1. Please explain what your treatments are with the estimated duration of time you've been doing them.
2. Rate 1-10 (10 the best) how the treatments are impacting your health.

My first step was GAPS diet: gluten/dairy free. Immediately some things shifted. Eventually I uncovered sulfur and histamine intolerance, which gave me clues for other directions to explore.

Learning about and correcting for pyroluria was the next big impact on my nervous system. Changing Vit B6 to P5P, adding considerable zinc, selenium, molybdenum, manganese shifted my brain/mood.

Then down the rabbit hole of understanding and correcting methylation pathway. There are 2 guides listed in my signature, plus a simple description re the significance of methylation; Caledonia has a long list, aturtles has current notes re Freddd's Protocol.

Detoxxing metals, Candida, SIBO. In addition to supplements, coffee enemas have been my mainstay.

Low dose naltrexone to balance immune system: increased my stamina considerably.

Currently I'm engaged in understanding the nitric oxide cycle, and how to intervene in the interlinked vicious circles in my system.
Links in my signature to Martin Pall's work. There's currently a problem with the website, it's misdirecting. But the vid is available.

It's been 3 years since I stumbled onto the right path, in the chronological order I've listed above. My quality of life is incomparable with the misery of the years before I began these approaches. My activity levels are still extremely limited, my brain tires easily, comprehension of some of these concepts is a real stretch.

I've found genetic information useful in choosing my approach. I've been very fortunate that since I took one step onto the right path, instead of the previous 8.5 years I'd been meandering in a variety of detours, each step has left me feeling better and more competent to tackle the next piece of understanding. I would never have made such progress without building a rapport with my body, learning to tune into symptoms and using self-testing as a way of managing dosages. I haven't had a practitioner to help.

Not only has this process been like a marathon, but many weeks have felt as if I was engaged in a marathon every day, like my recently completed 2.5 month Candida/SIBO purge, with zero days off from coffee enemas. If you're fortunate, you'll be able to approach the process as an interesting exploration and challenge, instead of feeling overwhelmed. This shift in my own perception/mentation came 5 days after I'd begun the pyroluria supps. I don't see anything in what you've written that suggests pyroluria, but have linked a questionnaire. Here, too, I did not use a Dr. for testing, only this survey.

Managing this illness with a toddler... wow.

http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria

 

[sillysocks84]

@ahmo thank you for sharing all that. It means a lot you took the time to do that. I can see what you are doing and see what might help me I need to get to a specialist for this disease asap. I sm now because taking malic acid to take out some of the metals in my system.

I just wish I had more money so I could really pursue this!