Starting With Fibromyalgia/cfs/post Polio Syn

[Birdie]

I am thinking trying LDN again...lower dose. I got so sick and horrible pain the first time I tried. I can use it with my pain med thank goodness, just need to start very low dose. Aspirin is helping a lot ....I am using it in pain patches.
I am interested in the DMSO. Do you use it for pain control?

I did not see this reply kaybb. I hadn't been back to my log til now.

I use a lower dose than the usual. For a long time I cut back to 2.5 ml.
Then, took months to work up to 3.0ml.

Those pain patches sound really good. I'd made up a solution of aspiring and distilled water that I used. But it dries up and isn't real convenient.

Yes, I've used DMSO for 40 years for pain. Am using it right now on my hip pain.
Also, I got the DMSO rose cream and use it on my back for Shingles pain.

 

[Birdie]

Oh, funny. I forgot that I do use those patches. Not with DMSO though.
I am super careful with what goes into my bloodstream with DMSO.
Wouldn't want any other ingredients...to be safe.

So, the patch goes in a spot without DMSO on the skin there.

 

[Birdie]

Have another H. Zoster attack. And my husband also. Figure that since it's both of us, that points to a possible dietary cause. Food or supplements. Possibly stress too, but less chance we would both be affected the same by stress I guess.

Anyway, am evaluating our diet. We've been taking lysine, but that didn't keep me, at least, from having attacks.

Am doing our usual routine. Lysine sups, a DMSO/coconut oil/essential oil topical on affected skin... I bought some capsaicin patches yesterday that we might try if needed. The topical brought some relief from pain and itching. Thes essential oils have so far kept our rashes smaller. Seems to dry up the vesicles.

I came here to report progress on sleep. Extra salt is working. Thank you RP. I'm taking pinches during the day and before bed. Slept 8 hours. Getting up did not rush to the toilet like I have been. I'd been getting up around hour 5 for months. Forgot for maybe a year to use extra salt which had helped before.

Very encouraging. Or is it.

 

[kaybb]

I did not see this reply kaybb. I hadn't been back to my log til now.

I use a lower dose than the usual. For a long time I cut back to 2.5 ml.
Then, took months to work up to 3.0ml.

Those pain patches sound really good. I'd made up a solution of aspiring and distilled water that I used. But it dries up and isn't real convenient.

Yes, I've used DMSO for 40 years for pain. Am using it right now on my hip pain.
Also, I got the DMSO rose cream and use it on my back for Shingles pain.

Thank you so much for the info! I hope your shingles go away soon!

 

[PeatThemAll]

I wonder if anyone else here has ME or CFS. Two names, one used in the rest of the world, the latter used in the US. Or fibromyalgia? I think Ray pretty much says these are all thyroid related. That is what I found in my early study when I was dxd with this stuff 20 years ago. Still, it has not been a complete answer or cure. Perhaps, as a lot of people say, there is no cure. But, I've gone from being bedridden to leading a possible life out of bed. Big progress.

I think the hugest progress for me has been that of healing injuries. Years ago, any musculoskeletal injury would take 6 months to heal. Now, it can vary but is usually less than a week for the same degree of injury. Eating according to Peat suggestions, had made a significant advance in this faster healing.

In retrospect, I think I've been hovering between ME/CFS/FM and prediabetes for the greater part of my pre-PEAT life. Context: overweight since 8 years old, always ate by feeling (portion control? pftttt), and things were relatively under control (energy > tiredness) unti I hit 23-24 (4 years post 1st burnout). After that tiredness > energy but stress kept me going (denial) for another 10 years. When tiredness became unmanageable (spent weekends recovering from workweek and still feeling tired), that's when I started looking more into ME/CFS/FM. Then I discovered the works of Dr. St-Amand and guaifenesin. Ordered some of it, and after 1-2 doses I felt like a truck ran over me, so I knew I was 'clearing' (dumping phosphates) and my self-diagnosis wasn't that far from the mark.

Why the long intro, you might say? Because some of it ties in to what you wrote, peppermint included. More specifically, St-Amand recommends ME/CFS/FM sufferers to keep insulin surges low, avoid salicylates and mint (and mint-related products) as much as possible. His theory is that these block/hinder renal phosphate clearance, which downregulates cell metabolism, as cells want to produce less residual phosphate - from the ATP cycle - since they can't freely dispose of the phosphate. St-Amand likens the process to a cell being a factory, and the body provides garbage trucks + highways to get rid of the phosphate waste, but when the kidneys are overloaded, the highways get jammed and eventually even if the cell produces 'garbage' said garbage can't leave the premises, so the cell lowers its production (energy/metabolism) to a minimum. In that context, carb loading, by boosting metabolism, exacerbates the problem (more undisposable waste).

After getting my intake under control, and eventually losing weight, my exercise *in*tolerance (not the exercise per se, but the recovery) problem got better over time and, like you, I now recover faster from a (same level of) injury.

I'm still not over it, but I now focus more on the mental part of managing it. In retrospect, I started internalizing / bottling in (stiff upper lip) more and more as my work responsibilities increased, but the more I internalized, ironically, the worse my internal organ problems got. More specifically, what used to be 'just fatigue' started taking on the form of panic attacks, decreased immunity, prostatitis, inflamed gut, bloating, and interstitial cystitis. My only way out was to take sabbaticals when things got too bad or that I just couldn't function (full-time, or even part time at a point).

Pardon my French, but somewhere along the line, if I don't stop giving a f*** of social pressure / unrealistic expectations, I still pay for it. So now my focus is living as much as possible in real time emotionally (letting it out, fully accepting the rises and falls as they manifest themselves) rather than playing the bravado, tough guy act. As seen on a Facebook image, a mental antidote to this is to care less about what others think: "not my monkeys, not my circus."

 

[ecstatichamster]

Vitamin a supplementation raises iron levels without supplementation over a few months.

 

[kaybb]

In retrospect, I think I've been hovering between ME/CFS/FM and prediabetes for the greater part of my pre-PEAT life. Context: overweight since 8 years old, always ate by feeling (portion control? pftttt), and things were relatively under control (energy > tiredness) unti I hit 23-24 (4 years post 1st burnout). After that tiredness > energy but stress kept me going (denial) for another 10 years. When tiredness became unmanageable (spent weekends recovering from workweek and still feeling tired), that's when I started looking more into ME/CFS/FM. Then I discovered the works of Dr. St-Amand and guaifenesin. Ordered some of it, and after 1-2 doses I felt like a truck ran over me, so I knew I was 'clearing' (dumping phosphates) and my self-diagnosis wasn't that far from the mark.

Why the long intro, you might say? Because some of it ties in to what you wrote, peppermint included. More specifically, St-Amand recommends ME/CFS/FM sufferers to keep insulin surges low, avoid salicylates and mint (and mint-related products) as much as possible. His theory is that these block/hinder renal phosphate clearance, which downregulates cell metabolism, as cells want to produce less residual phosphate - from the ATP cycle - since they can't freely dispose of the phosphate. St-Amand likens the process to a cell being a factory, and the body provides garbage trucks + highways to get rid of the phosphate waste, but when the kidneys are overloaded, the highways get jammed and eventually even if the cell produces 'garbage' said garbage can't leave the premises, so the cell lowers its production (energy/metabolism) to a minimum. In that context, carb loading, by boosting metabolism, exacerbates the problem (more undisposable waste).

After getting my intake under control, and eventually losing weight, my exercise *in*tolerance (not the exercise per se, but the recovery) problem got better over time and, like you, I now recover faster from a (same level of) injury.

I'm still not over it, but I now focus more on the mental part of managing it. In retrospect, I started internalizing / bottling in (stiff upper lip) more and more as my work responsibilities increased, but the more I internalized, ironically, the worse my internal organ problems got. More specifically, what used to be 'just fatigue' started taking on the form of panic attacks, decreased immunity, prostatitis, inflamed gut, bloating, and interstitial cystitis. My only way out was to take sabbaticals when things got too bad or that I just couldn't function (full-time, or even part time at a point).

Pardon my French, but somewhere along the line, if I don't stop giving a f*** of social pressure / unrealistic expectations, I still pay for it. So now my focus is living as much as possible in real time emotionally (letting it out, fully accepting the rises and falls as they manifest themselves) rather than playing the bravado, tough guy act. As seen on a Facebook image, a mental antidote to this is to care less about what others think: "not my monkeys, not my circus."

Years ago I followed St.Amand & worked with a doctor who promoted his work. I took guiafenesine for 4 yrs. for fibro. He claimed the salicylates, mint ..etc, would block the guiafenesine from working. I don't remember the mint/salicylates being the actual problem with phosphates. Only that it stopped the guifenesine from clearing phosphates and they were the real problem according to St. Amand. Did you have any success with Guifenesine? I only slowly got worse. It was my only hope back then.

 

[PeatThemAll]

Years ago I followed St.Amand & worked with a doctor who promoted his work. I took guiafenesine for 4 yrs. for fibro. He claimed the salicylates, mint ..etc, would block the guiafenesine from working. I don't remember the mint/salicylates being the actual problem with phosphates. Only that it stopped the guifenesine from clearing phosphates and they were the real problem according to St. Amand. Did you have any success with Guifenesine? I only slowly got worse. It was my only hope back then.

I haven't read the guai stuff in years, but I think the precision you add is accurate. As for results, it seemed to work for a while (probably got rid of the built-up, uncleared excess) but after a couple of months I didn't see much difference anymore in fatigue/energy level variations (on or off) so I stopped it.

This being said, independently of taking guai, through trial and error I have found that my life is better with minimal salicylates. It kinda sucks that I'm better off using Ibuprofen rather than a proven, Nobel-prize worthy compound such as aspirin, but, hey, whatever works, works. :/

 

[kaybb]

I haven't read the guai stuff in years, but I think the precision you add is accurate. As for results, it seemed to work for a while (probably got rid of the built-up, uncleared excess) but after a couple of months I didn't see much difference anymore in fatigue/energy level variations (on or off) so I stopped it.

This being said, independently of taking guai, through trial and error I have found that my life is better with minimal salicylates. It kinda sucks that I'm better off using Ibuprofen rather than a proven, Nobel-prize worthy compound such as aspirin, but, hey, whatever works, works. :/

I wish it would have worked..but the salicylate thing is a pain ;/.
So is your pain less when you stay away from salicylates? I have just started using pain patches with aspirin that work but of course it's temporary. May I ask what symptoms you have when using salicylates & how it improves without them?

 

[PeatThemAll]

Regardin aspirin, it might make me feel good the first hour or two (anti-inflammatory effect) but after that I feel something's off for the rest of the day. When I take too much in a day I start having water retention-like symptoms and tinnitus. I wouldn't be surprised if it was linked to fragile blood vessels (indirectly confirmed when I had an earbleed spot on my pillow when I woke up after my first day using an ECA - Ephedrin, Caffeine, Aspirin - stack, as well as borderline burning pee symptoms when I used too much aspirin the times I wanted to know if I would habituate to it). In short, too little upsides for all the downsides.

As for CFS, although I only feel truly alive when I have an adrenaline rush, most of the time I just feel like I need to rest. This goes double when I exercise. Overall, though, I feel better overall now than I did 10 years ago, on average for energy-steadiness, exercise endurance, and mood, but ironically I feel like I'm dying inside, less frequent and intense highs, and more and more blahs (might be just aging, in my mid-40s). I'm looking into Somatic Experiencing to release bottled-in energy.

 

[kaybb]

Regardin aspirin, it might make me feel good the first hour or two (anti-inflammatory effect) but after that I feel something's off for the rest of the day. When I take too much in a day I start having water retention-like symptoms and tinnitus. I wouldn't be surprised if it was linked to fragile blood vessels (indirectly confirmed when I had an earbleed spot on my pillow when I woke up after my first day using an ECA - Ephedrin, Caffeine, Aspirin - stack, as well as borderline burning pee symptoms when I used too much aspirin the times I wanted to know if I would habituate to it). In short, too little upsides for all the downsides.

As for CFS, although I only feel truly alive when I have an adrenaline rush, most of the time I just feel like I need to rest. This goes double when I exercise. Overall, though, I feel better overall now than I did 10 years ago, on average for energy-steadiness, exercise endurance, and mood, but ironically I feel like I'm dying inside, less frequent and intense highs, and more and more blahs (might be just aging, in my mid-40s). I'm looking into Somatic Experiencing to release bottled-in energy.

Thanks for the info....I relate to the energy level and challenges with that. I am going to watch the aspirin. I don't know if the inflammation after using aspirin is because of more activity. I use aspirin patches for pain if I try to do some things during the day. I notice a feeling of inflammation just with higher activity. Thanks for for reply, I need to consider this.

 

[Birdie]

Kaybb and Peat them All, Interesting stuff.

I decided not to use the guiafenisen too. Something about dietary restrictions that conflicted with what I was doing.

Aspirin wise, I use two regulars at bedtime. That usually takes care of pain enough to let me sleep.
I use some of the other anti-inflammatories too.

One problem with my Shingles situation is that the diet to heal them conflicts with the diet to cure my anemia.
I got anemia after giving blood. My ferritin was already low and giving blood wasn't too smart. Carried away with lowering iron when I didn't need to.

Have pretty much settled into a food plan keeping the Anemia and Shingles in mind.
My husband told me it's about optimization. So many variables to work into the plan.
I don't have time to go into it, but after much frustration am relaxing and trying to keep the lysine high and still optimize my iron intake.

 

[Birdie]

Vitamin a supplementation raises iron levels without supplementation over a few months.

Thank you for replying.
How much vitamin A are you suggesting?
I've been using 25,000 IUs for the past couple of years or so.

 

[Birdie]

So, I have 3 ailments: seb dermatitis, shingles and anemia. They are interdependent. Keep in mind I had polio and that virus never leaves the body just like chicken pox.

I think the RP foods made me more susceptible to shingles. At least the way I was doing it because what I need is extra lysine.. Too much arginine and supplementing with lysine didn't help. Too many iron blocking foods that I ate with my heme iron foods. This would probably be helpful for most, but not for me. Then, giving blood is helpful for many, but not for me. So, I can see how these things happened and the SD fits right in there too.

The SD feels much better. On Thursday, I was in the sun/garden for 5 hours. Was hoping for SD improvement with the sun on the scalp and it seemed to help a lot.

Today, took a long walk and visited neighbors. Also sunshine. Then a little gardening.

Am washing my hair every couple of days. Using a diluted lemon rinse. TTO in shampoo. Castor oil sometimes on scalp and face.
Today, I used an old shampoo that is a huge help. The company has been bought out and the formula changed.
The new one doesn't clean my scalp the same. BTW, I rarely use this shampoo because it is expensive. And I have only a tiny bit left.
Going to compare ingredients with some available shampoos.

I am scrubbing the scalp with a shampoo brush and rinsing a whole lot.

Still shifting my food around to keep lysine high in shingles tx. For SD and anemia, trying to keep iron blocking foods separate from iron absorbable foods. It's a balancing process. Optimization effort.

I do supplement A, Bs, D, E... and others... Progest-E, pregnenolone, thyroid, lysine for the shingles.. Use a CO and essential oil mix with DMSO on my shingles irritated area... Sometimes copper.

Milk away from iron, salt, less oj since it's low lysine, eggs, beef, pate, cooked fruit, juice, cheese, mushrooms but few due to the low lysine, coffee & tea between meals... raw carrot. All I can think of for now. Sure am glad it's spring and a lot of light now.

 

[Birdie]

Just got my blood lab results and no longer am anemic.

Also the doc explained that the type of immunity for shingles results from having shingles. In other words, having shingles is like a vaccination. The difference between it and the one you pay for is that you get immune to your own if it's yours. If you get the vaccine, you receive somebody else's rather than your own. And you don't know who's it is.

Of course every pharmacy urges you to pay up and get the vaccine. And all your buddies tell you you shoulda gotten the vaccine.

I'd been thinking I might have made a mistake in not getting the vaccine. Since it is no better than having your own outbreak, I am now feeling intelligent.

And, looking forward to my new life without anemia treatments. Oh, the ease of it!!

 

[ecstatichamster]

Congrats @Birdie !!! Great news!!!!

 

[Birdie]

Yesterday I checked some cheeses at Costco. The Jarlsberg is still good using rennet. Real rennet not synthetic. I bought that. Also checked the Italian Parmigiana which still lists good ingredients, unlike the Kirkland.

Other news is that a few days ago, after accidentally getting a tetanus booster, I felt chest congestion. Bronchitis has been going through our town. I came to the forum for support and it did not fail. I went other places too. If I can remember, I took baking soda, extra progest E..., short low dose penicillin.. Did this for the night and next day... Didn't come down with the thing.

On the tetanus booster.. After the nurse surprised me with a shot and I didn't refuse it!! Bothers me that I'm doing this lately. Then, I see my doc who is spending time with immunology and he says the boosters are unneed d. Irksome. I wanted to discuss it with him. Unfortunately. I didn't make my wants clear to the staff when arriving at the front desk.

 

[Birdie]

Congrats @Birdie !!! Great news!!!!

Thanks ecstatic!

 

[ecstatichamster]

Yesterday I checked some cheeses at Costco. The Jarlsberg is still good using rennet. Real rennet not synthetic. I bought that. Also checked the Italian Parmigiana which still lists good ingredients, unlike the Kirkland.

Other news is that a few days ago, after accidentally getting a tetanus booster, I felt chest congestion. Bronchitis has been going through our town. I came to the forum for support and it did not fail. I went other places too. If I can remember, I took baking soda, extra progest E..., short low dose penicillin.. Did this for the night and next day... Didn't come down with the thing.

On the tetanus booster.. After the nurse surprised me with a shot and I didn't refuse it!! Bothers me that I'm doing this lately. Then, I see my doc who is spending time with immunology and he says the boosters are unneed d. Irksome. I wanted to discuss it with him. Unfortunately. I didn't make my wants clear to the staff when arriving at the front desk.

You only need the tetanus shot every 30 years. They used to say every 10 years, but they had no particular reason to say that. When they actually studied it, immunity last at least 30 years. Probably longer. And that goes for the accompanying diphtheria vaccine as well. It's likely that bacterial vaccines work much better than viral vaccines, which I am very dubious about

 

[Birdie]

It looks like my husband and I may have neurological problems from B6 supplementation. Maybe some of what I thought post polio progression is just due to B6. I remember from school to just use it for specific problems, stiffening of the hand ligaments, and warnings not to use it ongoing.

A trend of mistakes here...