Something's making me feel better

drob31

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This is very preliminary, but the last 4 days I have had more energy, and it has been very consistent. I still don't feel like myself but I wanted to share a few things.

1. Magnesium - I'm taking Doctor's Best 100% Chelated Magnesium Glycinate. I recently updated my dose to 1.2 grams a day. This is one supplement I see that universally helps CFS. I'm pretty sure a large majority of cases of CFS are caused by mitochondria dysfunction (caused by something else), and magnesium is critical for ATP production.

2. Stinging Nettle Root - This is the oddball. My SHBG is pretty high: 72 (ref: 16-55). This could be affected by the t3 I'm taking, however, this seems to be a trend with CFS: high SHBG. I'm taking 2 grams at night of generic NOW foods brand.

3. Prescript-Assist - After anihilating all of my gut flora and maybe some helpful fungi, I began using this to try to restore balance. It has been helping with consistent digestion along with the magnesium. This might actually be the most important part.

4. Selenium (100 mg) - I took this one out when I was having issues tolerating iodine, however I have read that it can be antiinflammatory in certain doses as well as help with thyroid conditions. http://chriskresser.com/selenium-the-missing-link-for-treating-hypothyroidism.



Next up:

D-ribose
Cytomel (adding to t3 regimin)
Lisinopril (Ace inhibitor, my secret weapon?)
 

zzz

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This is very preliminary, but the last 4 days I have had more energy, and it has been very consistent. I still don't feel like myself but I wanted to share a few things.

1. Magnesium - I'm taking Doctor's Best 100% Chelated Magnesium Glycinate. I recently updated my dose to 1.2 grams a day. This is one supplement I see that universally helps CFS. I'm pretty sure a large majority of cases of CFS are caused by mitochondria dysfunction (caused by something else), and magnesium is critical for ATP production.
Magnesium is one of the most important supplements for many, many reasons. For example, in addition to assisting in ATP production, magnesium quiets down the hyperactivity of the brain's NMDA receptors, and this hyperactivity is an essentially universal condition in ME/CFS. This not only has direct effects on brain function, but also helps with autonomic nervous system problems, which originate in the brain. Magnesium is also a muscle relaxant, so it helps to prevent or relieve various types of muscle cramps. Since half of the heart muscle is composed of mitochondria, the heart needs twice as much magnesium as other muscles, and magnesium is therefore very important for good cardiac health.

Many people can't absorb magnesium efficiently through their gut enough to make a difference (in which case injections or nebulizer treatments are the next choices), but apparently you can. The magnesium glycinate that you're taking is the best absorbed oral form of magnesium; magnesium citrate and magnesium malate are also good, while magnesium oxide is the most poorly absorbed. Taurine helps the magnesium get into the cells, and is a recommended supplement to take with it. Also, if you raise your intake of magnesium substantially, you should take a potassium supplement, as otherwise you will become potassium deficient. Similarly, if you raise your intake of potassium substantially, you should take a magnesium supplement, as otherwise you will become magnesium deficient.
Next up:

D-ribose
Cytomel (adding to t3 regimin)
Lisinopril (Ace inhibitor, my secret weapon?)
Of these, if you can tolerate the D-ribose (as most people can), it should give you the most benefit by far. Be careful with the ACE inhibitor; for some people, these have negative effects.
 

Gingergrrl

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Selenium and Magnesium are important ingredients for glutathione conjugation.
@Gondwanaland Can you explain that? What do you mean by glutathione conjugation?

The last week or so I have been trying a new method of magnesium and also started taking 200 mcg of Selenium per day and I am also noticing some improvements both yesterday and today.

I also changed how I dose the beta blocker which I also think is helping.

Granted my functioning was very low so improvements for me do not remotely compare to that of a normal person. But the last few days, my breathing has been better when I walk, I was able to drive one time by myself, it is easier to eat regular food again, and my sleep and energy are better.

I am still getting headaches, nausea, and arm pain for at least part of every day and still very weak (cannot lift or carry anything) but I notice something is different. My BP also remains low to mid 90's/60's in spite of Midodrine but at least it is not in the 80's/50's where it was.

I have no idea if this will last and afraid that typing it will jinx myself!

@drob31 I am also glad to hear that you have had a few days of feeling better and that is great!
 

Gingergrrl

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@zzz just curious, I took D Ribose for over a year and never noticed anything (good or bad) from it so I stopped. Did you find that if you fixed Magnesium or Selenium deficiency, that the Ribose could work better? I am wondering if I should try it again?
 

zzz

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@zzz just curious, I took D Ribose for over a year and never noticed anything (good or bad) from it so I stopped. Did you find that if you fixed Magnesium or Selenium deficiency, that the Ribose could work better? I am wondering if I should try it again?
I've been taking the ribose for about nine years now, whereas I've been doing the nebulized magnesium for about nine months. The ribose always worked very well for me, and the magnesium had no noticeable change on its effect.

However, that's just me. The human metabolism is very complex, and it's quite possible that there was something blocking the ribose from working for you. Since you didn't have a negative reaction to it, it certainly wouldn't hurt to try it again; you have nothing to lose, and it may help a lot with your energy.
Selenium and Magnesium are important ingredients for glutathione conjugation.
@Gondwanaland Can you explain that? What do you mean by glutathione conjugation?
Magnesium is actually used in the synthesis of glutathione, which is an extremely important amino acid with powerful antioxidant properties, and which is often deficient in PWME. Selenium, on the other hand, is a component of the first four glutathione peroxidase enzymes (there are eight of these all together). These enzymes have a powerful antioxidant effect, and selenium is largely responsible for this effect. As implied by the name, these enzymes also contain glutathione, but selenium is not a component of glutathione nor used in its production.
 

Gingergrrl

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@Gingergrrl - Why are you taking a beta blocker when your BP is so low?
@Mary I'll try to make it brief to not sidetrack this thread. When my EBV re-activated in Jan 2013, I began having constant tachycardia in my sleep with HR in the 160's to 170's waking me up multiple times per night. Then I began having episodes of POTS where I would stand up from lying down or sitting and HR between 120 to 170. I had many tests and no arryhthmia (all sinus tachy) but it was by far the most debilitating symptom of everything. Each time my HR went into the 170's it would take me about a full day to recover.

I tried different meds and with low dose Atenolol, the tachycardia is completely gone. Zero episodes in my sleep and almost zero episodes of POTS. I take only 12.5 mg per day (half of the lowest dose pill) but now I divide the doses so I take 6.25 mg AM and 6.25 mg PM. It really is not enough to lower my BP and if it is slightly lowering it, it is worth the trade off to have the tachycardia gone. Every time I have stopped the Atenolol for more than a few days, the tachycardia returns.
 

drob31

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Just an update. 5 mcg of cytomel also increased energy in a very big way. The slow release t3 does not have this effect and I really question how much is actually getting absorbed. I'm going to still use slow release t3, but taper off and on to cytomel, and then taper off both for a little while. However, cytomel is like 200 mg of caffiene without the crash.

I'm going to use an ACE inhibitor to try to combat water retention. It's really just an experiment at this point. I just filled a prescription for 60x10mg of lisinopril.
 

drob31

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Magnesium is one of the most important supplements for many, many reasons. For example, in addition to assisting in ATP production, magnesium quiets down the hyperactivity of the brain's NMDA receptors, and this hyperactivity is an essentially universal condition in ME/CFS. This not only has direct effects on brain function, but also helps with autonomic nervous system problems, which originate in the brain. Magnesium is also a muscle relaxant, so it helps to prevent or relieve various types of muscle cramps. Since half of the heart muscle is composed of mitochondria, the heart needs twice as much magnesium as other muscles, and magnesium is therefore very important for good cardiac health.

Many people can't absorb magnesium efficiently through their gut enough to make a difference (in which case injections or nebulizer treatments are the next choices), but apparently you can. The magnesium glycinate that you're taking is the best absorbed oral form of magnesium; magnesium citrate and magnesium malate are also good, while magnesium oxide is the most poorly absorbed. Taurine helps the magnesium get into the cells, and is a recommended supplement to take with it. Also, if you raise your intake of magnesium substantially, you should take a potassium supplement, as otherwise you will become potassium deficient. Similarly, if you raise your intake of potassium substantially, you should take a magnesium supplement, as otherwise you will become magnesium deficient.


Of these, if you can tolerate the D-ribose (as most people can), it should give you the most benefit by far. Be careful with the ACE inhibitor; for some people, these have negative effects.

Thanks for the info. I will look into adding Taurine and potassium. My CBC before using high dose magnesium showed lower potassium and higher sodium, which makes me think an ACE inhibitor could help.

What negative effects have you heard of with the ACE inhibitor?
 

Mary

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@Mary I'll try to make it brief to not sidetrack this thread. When my EBV re-activated in Jan 2013, I began having constant tachycardia in my sleep with HR in the 160's to 170's waking me up multiple times per night. Then I began having episodes of POTS where I would stand up from lying down or sitting and HR between 120 to 170. I had many tests and no arryhthmia (all sinus tachy) but it was by far the most debilitating symptom of everything. Each time my HR went into the 170's it would take me about a full day to recover.

I tried different meds and with low dose Atenolol, the tachycardia is completely gone. Zero episodes in my sleep and almost zero episodes of POTS. I take only 12.5 mg per day (half of the lowest dose pill) but now I divide the doses so I take 6.25 mg AM and 6.25 mg PM. It really is not enough to lower my BP and if it is slightly lowering it, it is worth the trade off to have the tachycardia gone. Every time I have stopped the Atenolol for more than a few days, the tachycardia returns.
Wow - that must have been very rough - I'm very glad the Atenolol is helping you!
 

drob31

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I'm still doing better. I tried a quarter of 10 mg of lisinopril, and it has a slight sedative effect. Not good, this will need to be taken around bed time, and when my bp is higher anyways. I will slowly increase the dose until I'm up to one tab.

The cytomel does not hit me as hard in the morning. Is this because my cortisol is too high or too low? I just got my 3rd round of serum cortisol test results back.

Free serum cortisol (figure this one out, lol).
First test: 0.8 (ref: 0.6 - 3.6)
Second test: 6.5 (ref 0.6 3.6)
Third test: 1.0 (ref 0.6 - 3.6)

The serum testing is all over the place. Previous saliva test results are always high in the morning / afternoon, and normal at night.
 

Gingergrrl

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@drob31 Just curious when you mentioned Cytomel, do you take any other thyroid meds or have Hashimoto's or Hypo diagnosis vs. no thyroid issue but taking it to increase energy? I take a low dose of Armour but have never tried any other thyroid meds.

And so glad you are still feeling better!
 

drob31

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@drob31 Just curious when you mentioned Cytomel, do you take any other thyroid meds or have Hashimoto's or Hypo diagnosis vs. no thyroid issue but taking it to increase energy? I take a low dose of Armour but have never tried any other thyroid meds.

And so glad you are still feeling better!
I'm taking slow release t3 at 40 mcg a day (20mcg at 8 and 20 mcg at 4). I'm going to taper that down and use cytomel. I will use 20 mcg SRT in the morning with 5 mcg cytomel. Then 5 mcg cytomel 4 hours later, then 5 mcg 4 hours later, and another 5 if I need it. That brings me to 40 mcg total still. I will lower the morning dose of SRT to 15/10/5 over time, and continue the cytomel, then try to taper off the cytomel, and see if I return to feeling terrible, or maybe if a short course of t3 has healed thing.

I have no thyroid antibodies, however one doc I'm working with thinks I'm seronegative hashimoto's. 90% of true hypothyroid people have hashimoto's and 10% of those don't test positive for antibodies. I think because they test for IgG and IgE but not IgA. So I may or may not have it. My ANA was negative. Maybe all my issues are genetic and not virus related... but there is a mitochondrial component involved, I'm sure of it.

Armour did not work for me, or at least maybe my cortisol was out of whack when I tried it but armour made me feel like I was in outter space.

Slow release t3 didn't even "work" for me. It seemed to help very mildly. It brough my free to up from 3.1 to 3.9, but my TSH is now .4 instead of 1.8.

Thanks for the support.

I'm willing to self hack myself until something starts working, or I break something.

I swear if I can make it past this, I will go to med school so I can become a doctor and help you guys!
 

drob31

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By the way, my doc says that armour or anything with t4 in it is a bad idea because of the high rate of conversion to rt3. Basically the more t4, the more you're creating rt3. So you want to lower total t4, and raise free t3 while lowering rt3. Armour won't necessarily do this depending on how it's getting absorbed and converted.


Another weird thing I should mention while on t3, is that I almost always get cold hands after eating. It's pretty strange.

I'm pretty sure it's related to cortisol and blood sugar.
 

Gingergrrl

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Can I take magnesium and selenium without a doctor monitoring? Or anything else being discussed on this page?
@Strawberry There have been a lot of things discussed on this page and some are prescription meds from a doctor and some are OTC supplements. Magnesium and Selenium are both supplements that you can buy without needing a doctor (but I would recommend checking with your doctor just as no one on PR knows anyone else's exact medical issues!)
 

taniaaust1

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Can I take magnesium and selenium without a doctor monitoring? Or anything else being discussed on this page? Thanks.
You should be okay giving these things a trial to see if they seem to help or not. They not commonally at all cause bad reactions.

Taking things thou" long term" (more then months) without a good reason if something isnt helping, is probably a bad idea even if it is just minerals or vitamins cause the body is best with certain minerals in certain ratios with other minerals etc.

Doctors thou dont tend to know a lot about vitamin and minerals (they arent really given much training in these things other then just going by test results), so not always best to ask anything too hard of them in these areas (they can often give wrong info in this area), a natural therapist often tends to know more.

I take selenium, its really improved my finger nails and stopped them breaking all the time but it hasnt helped my ME. (I started taking it as I had high copper and borderline selenium levels on hair testing and a specialist then recommended it).

I suggest not to just randomly trial things with ME as it ends up very very expensive and its like searching fora needle in a haystack. Have a reason for everything you trial eg trialng something as you know it helps some symptom you have in some.