My New Treatment Strategy (Supplements were too helpful)

[sometexan84]

I wanted to share (not necessarily recommend) my new treatment strategy.

TL;DR
- Stopped taking all meds and supplements
- Got wayyy worse
- Am now getting a lot of attention from my docs

I never knew how helpful my meds and supplements were until I just stopped taking them. I figured either I'd feel the same, which would mean I wouldn't have to take pills all the damn time... or I'd get worse, which would mean more abnormal test results, worse symptoms, and hopefully more attention from doctors.

I was just a little too healthy apparently. It was hard for docs to take me seriously. They wouldn't run tests I wanted. Some were dismissive. And some just didn't really know what direction to go w/ me.

Since I've stopped taking meds, I'm visibly sicker. I now have actual pain. It seems I have a lot more autoimmune issues creeping up... all sorts of things. And my test results (e.g. liver enzymes, antibodies, basic CMP panels, etc), they're totally different than they used to be.

It's still early on, but it's led to me getting a lot of good referrals, and actually having multiple specialists that are running lots of scans and tests that I never got before, and docs that actually seem to care, they just seem more invested in me than ever before. For whatever reason.

I'm obviously not saying it's any fun to feel shittier now. Nor am I saying that these guys will be able to help cure me. But I am optimistic. So, we'll see where this new strategy takes me.

 

[YippeeKi YOW !!]

It's still early on, but it's led to me getting a lot of good referrals, and actually having multiple specialists that are running lots of scans and tests that I never got before, and docs that actually seem to care, they just seem more invested in me than ever before. For whatever reason.

WOW !!!! Tex, you totally hit the jackpot !!!!

I'm just sorry that you're having to drop everything that helps, crawl to death's door, and land, gasping and wheezing your last breath on your Dr's waiting room floor to make it happen.

So, we'll see where this new strategy takes me.

Well, regardless of which little island on the outskirts of Hell it lands you on, you can always go back to the tried and true that you know worked for you, and at least this way, you have a shot at maybe another level of improvement.

Totally rooting for 'ya !!!!

It was good of you to post this strategy ....

 

[Rufous McKinney]

I wanted to share (not necessarily recommend) my new treatment strategy.

TL;DR
- Stopped taking all meds and supplements
- Got wayyy worse

I signed up for that new treatment plan, also.

Each time I try to detox I get sicker. I try to hang in there, I throw in the towel. i was on some great herbal formula when - lymph cleanse got added. So each time I'd start up again, I'd give up again.

My vitamins mostly sit in the little container, staring back at me. My max tolerance to swallow them lately is: three. I'll take 3, the rest can: collect dust here.

then bouts of severe gastro things- I stop my digestive tea... that really helps.

Weeks to get it back again.

Or I just: put up with- lessor function. So: I did get that going again- about a month ago.

There is such a thing as too worn out to continue endless protocols and the constant Gardening. Tending to it.

We revolt.

 

[Wishful]

I found that occasionally stopping treatments/supplements and dropping usual foods from my diet was helpful for checking whether treatments were still working (and not causing problems) and that foods I found 'safe' continued to be safe. If you don't check once in a while, how do you know whether those things are still right for you? ME certainly does change over time.

 

[Judee]

I have had a lot of times with little or no supplements or medications. I do think my current ones help a tiny bit but when I have been on nothing my tests still came out "normal."

That doesn't keep me from hoping that your tests will show something treatable though and that you and these doctors will finally find something to get you better!!!!

 

[Hip]

Since I've stopped taking meds, I'm visibly sicker.
...

Actually having multiple specialists that are running lots of scans and tests that I never got before, and docs that actually seem to care, they just seem more invested in me than ever before.

Wow, that's interesting.

Maybe ME/CFS patients just need to hire a makeup artist to make us look absolutely ghastly and near death, and we'd get much more attention from doctors!

The trouble with ME/CFS is that patients feel ghastly, but look great on the outside.

 

[Judee]

Maybe ME/CFS patients just need to hire a makeup artist to make us look absolutely ghastly and near death, and we'd get much more attention from doctors!

The trouble with ME/CFS is that patients feel ghastly, but look great on the outside.

@Hip, you made me laugh with this one but you are absolutely correct.

 

[sometexan84]

I have had a lot of times with little or no supplements or medications. I do think my current ones help a tiny bit but when I have been on nothing my tests still came out "normal."

That doesn't keep me from hoping that your tests will show something treatable though and that you and these doctors will finally find something to get you better!!!!

That's frustrating.

I just figured w/ my multiple high-titer enterovirus infections, my autoimmune stuff, and w/ my other infections, that stuff would really manifest if I stopped w/ meds and just let it happen.

Wow, that's interesting.

Maybe ME/CFS patients just need to hire a makeup artist to make us look absolutely ghastly and near death, and we'd get much more attention from doctors!

The trouble with ME/CFS is that patients feel ghastly, but look great on the outside.

Yea, hehe, maybe.

Since stopping meds...

- My eyes perpetually look like someone who hasn't slept in two days
- My hands and wrists hurt constantly, both w/ this sort of swollen looking liquid-filled area on back of wrists
- My hair is coming out in clumps when I run my hand through it w/out pulling
- They found major arm muscle weakness
- My right shoulder, elbows, and feet hurt for some reason
- Had to go to ER from the most painful constipation of my life, effing embarrassing
- Urine turned super dark all of a sudden... so liver testing... lots of abnormals there

This is all new, 100%. Also new, same tests I've done before... but now very abnormal results...

- Crazy high liver enzymes
- IgG levels super high
- Abnormal CPC and CMP panels
- Red blood cell issues

But yea, I no longer look great on the outside

 

[Hip]

Since stopping meds...

Sounds fairly intense.

Hair coming out might be an autoimmune effect (alopecia areata).

Maybe you might have some condition which is not ME/CFS (and which hopefully might be more treatable that ME/CFS).

 

[Gingergrrl]

@sometexan84 Which specific meds and supplements did you stop? I apologize if you listed them and I am somehow missing it. Also, were you taking a steroid and abruptly stopped it? I'm guessing no to my second question but wanted to make sure so you do not have an adrenal crisis.

 

[Alvin2]

This is a good point, invisible disabilities are easier to ignore.
When people see me in the scooter then it seems to click in for them.

This thread is probably the doctor equivalent.
Not to mention anchoring bias (another discussion).

 

[lenora]

That's frustrating.

I just figured w/ my multiple high-titer enterovirus infections, my autoimmune stuff, and w/ my other infections, that stuff would really manifest if I stopped w/ meds and just let it happen.


Yea, hehe, maybe.

Since stopping meds...

- My eyes perpetually look like someone who hasn't slept in two days
- My hands and wrists hurt constantly, both w/ this sort of swollen looking liquid-filled area on back of wrists
- My hair is coming out in clumps when I run my hand through it w/out pulling
- They found major arm muscle weakness
- My right shoulder, elbows, and feet hurt for some reason
- Had to go to ER from the most painful constipation of my life, effing embarrassing
- Urine turned super dark all of a sudden... so liver testing... lots of abnormals there

This is all new, 100%. Also new, same tests I've done before... but now very abnormal results...

- Crazy high liver enzymes
- IgG levels super high
- Abnormal CPC and CMP panels
- Red blood cell issues

But yea, I no longer look great on the outside

I think you're making a very intelligent decision in stopping all supplements, meds (slowly, if needed) b/c you have some serious problems going on. Perhaps there is an interaction of sorts....who knows? This much I do know though: If you're hospitalized you'll have 10 doctors with 10 different opinions. Not really very helpful, is it? (I've been there, so I know.)

I hope you take copious notes, or have someone take them for you because you'll really need them. An Internist is usually the doctor who can put the pieces of the puzzle together (b/c they know the entire body, as opposed to specializing in one tiny bit of it). I do hope you have one you like and trust....and make an appointment as soon as you can. All test results should be sent to this person, and copies prepared for you, also. If you get too many different opinions and don't know what to do, your Internist should be able to help you make sense of it all. Good luck & better health. Another Texan (Dallas). Yours, Lenora.

 

[YippeeKi YOW !!]

Not to mention anchoring bias (another discussion).

Yes, one of the nasty little secrets of the medical profession, It comes as a tandem: stereotyping, then anchoring firmly on that stereotype, whch will dictate the treatment, or lack of, that you get ....

 

[Rufous McKinney]

@Hip, you made me laugh with this one but you are absolutely correct.

well, not in my case (outward appearances of being fine).

My horrific condition was fully documented in my recent DMV photo update. The day I could not trigger the fingerprint machine, cheated on the eye examine, the only person who has to take a test on paper with a pencil is me, I killed computer system.

 

[Rufous McKinney]

well, not in my case

Ever been surrounded by people (strangers) asking to pray for you in the basement of a Marshalls discount store?

Thats how obvious my illness is. And I let them pray for me, fine. Just fine. I stood there with strangers in a circle for 5 minutes (when I should have somehow sat down for this cure).

In an exotic foreign place, I visited, a big city, my daughter was on my case because its publically visible that I'm about ready to pass out. You can't act like this in public Mom.

Oh?

 

[sometexan84]

Hair coming out might be an autoimmune effect (alopecia areata).

I strongly believe this to be the case

@sometexan84 Which specific meds and supplements did you stop? I apologize if you listed them and I am somehow missing it. Also, were you taking a steroid and abruptly stopped it? I'm guessing no to my second question but wanted to make sure so you do not have an adrenal crisis.

Meds & Supps I was on before... (not recommended for general treatment regimen, as some listed are geared towards my specific conditions, symptoms, lab results, and lots of research)

• Valtrex
• LDN (Low Dose Naltrexone)
• Magnesium Malate
• Selenium
• Daily Multivitamin
• Fish Oil
• SAMe (S-Adenosyl-L-Methionine)
• L-Methionine
• Vitamin K2
• Acetyl-L-Carnitine
• Alpha Lipoic Acid
• Turmeric
• Monolaurin
• Milk Thistle (Silymarin)
• B12
• D3
• High dose Vitamin C
• Immunoflora w/ LC-Plasma Probiotic
• L. Reuteri Probiotic
• CoQ10
• Dandelion Root
• Benfotiamine
• NADH

hopefully I didn't leave anything out

 

[Gingergrrl]

Meds & Supps I was on before... (not recommended for general treatment regimen, as some listed are geared towards my specific conditions, symptoms, lab results, and lots of research)

It looks like (from your list) that you were not taking a steroid which is good b/c it can be very dangerous to abruptly stop one. Were you still taking any thyroid meds or had you stopped those a while back? I am not familiar with many of the things on your list but I think that SAMe can have a withdrawal syndrome if you abruptly stop it (so that might be part of why you are feeling so crappy). I also wonder if stopping the Valtrex is adding to it if it was keeping your viral titers down? I'm hoping others will review your list and add more.

 

[sometexan84]

It looks like (from your list) that you were not taking a steroid which is good b/c it can be very dangerous to abruptly stop one. Were you still taking any thyroid meds or had you stopped those a while back? I am not familiar with many of the things on your list but I think that SAMe can have a withdrawal syndrome if you abruptly stop it (so that might be part of why you are feeling so crappy). I also wonder if stopping the Valtrex is adding to it if it was keeping your viral titers down? I'm hoping others will review your list and add more.

I'm actually still taking my thyroid meds. I can't have my TSH levels going way back up.

I actually wasn't taking a ton of SAMe. I had very low methylation (SAM/SAH ratio). Was on L-Methionine to allow for more S-adenosylmethionine (SAM). And added low doses of SAMe, just to make sure SAM was increasing.

Valtrex could be important. It was likely keeping my EBV at bay some, at the very least.

I think all this stuff was important, and helping. But w/out it, hopefully it leads to me getting IVIG. That's pretty much my goal.

 

[uglevod]

All your supplements are TLRs antagonists so no wonder you are getting an inflammation spike upon withdrawal...

 

[max_yazhbin]

@sometexan84 it appears you've tried almost everything that I have tried. Have you looked into Dr. Vasquez, he is really big into inflammation? Steven Fowkes, he knows lots of biochemistry because he knows lots of chemistry? John Mionczynski, he knows lots about ethnobotany?