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My ME, Part V - What I Take Now, How it Helps, and General ME Advice

6/2020: Quick run-down version!

Swift advice on starting / stopping meds

1) Be ruthlessly empirical with your self-experimentation. Don't let yourself be fooled by a transient improvement that might have come naturally in this relapsing-remitting disease. Don't let yourself be fooled by a transient worsening of symptoms that might have been caused by overwork and not by your latest supplement.

2) Never, ever try more than one thing at a time. How will you know what's effective if you do?

3) Go off and on supplements multiple times; it's the best way to be as sure as you can be that a pill is really helping you and it isn't chance. Once you're sure, move on to the next thing to try.

4) "Start low and go slow" -- it minimizes your risk. Hip recommends cutting pills into 1/16ths... I usually started with 1/8ths when I was at my most reactive, but I was 'moderate' at my worst, not severe.

5) Keep a methodical symptom diary. There are lots of triggering events and foods and (!) even weather patterns / temperatures, and you need to find them. Be obsessive for a little while, and to those who say, "aren't you maybe focusing too much on your condition?" find them a short pier and advise them to take a long walk. Once you know your triggers you can avoid the avoidable ones without a great deal of conscious thought. It'll just be a program running in your mental background.

You might have days you're too sick to write. When you recover, fill in the blanks as best you can. After awhile, you will have found your triggers and you'll only need to write down aberrant stuff -- things that stick out as weird / wrong / not confluent with your usual symptomology.

6) This disease changes. Your personal protocol ought to as well. I have gone on things I desperately needed at one point in my illness, only to discover they didn't have as much effect after a few months and that they were harmful thereafter. I have titrated doses up and down over time as needed. Constantly reassess.

7) Do yer research. Work hard. Read, even if it's a paragraph at a time. I found a treatment path today that I'd never thought of / heard of before. Keep searching. Don't give up. You are worth the time and the effort. This world deserves to have you in it: working and fighting and loving and thriving. And you deserve to experience the world. Even if it's not in the way you pictured, or that feels most familiar to you.

______________________________________________________________

Swift what I take now

I strongly recommend you read what is to follow -- it shows how many things I tried, what I needed at first and then discarded, etc. I've kept those notes here because I believe they are a good sketch of the hard work it takes to feel better. However there are those who may be interested in my current personal protocol, so that is here:

Morning, around 9am
  • 1 Terry's Naturally Healthy Feet & Nerves Pill <-- (I now compound my own, more effective version of this. Since this is above and beyond most people's means, I'm keeping this rec here.)
  • 3 600-mg Solgar CoQ10
  • 3 400-mg pills Vitex agnus-castus
  • 1 200-mg Solgar DHA
  • 2 2,500-IU Vitamin D
Afternoon, around 1:30pm
  • 3 400-mg Solgar CoQ10
  • 3 400-mg pills Vitex agnus-castus
  • 1 120-mg Spectrum DHA
  • 1 2,500-IU Vitamin D
Evening, before bed
  • 2 250-mg Jarrow Lactoferrin
All of these are linked within the narrative below.

But how are you doing, really?

It's now rare for me to crash dramatically. When compared to before I took this protocol, or compared to anytime I run out of anything, I am at 20% capacity vs 45% capacity.

So you're a recovery story!

That'd be nice. :oops: If I miss 2-3 doses of anything, I relapse. I've found which holes I can plug in the dam. I can still crash if I overexert, and I have symptoms every day. I have found how to improve my condition, but not how to make myself well.

All of us with this disease are really different. It might be some quirk of my genetics that has allowed me to recover, just as some quirk of my genetics made me get sick in the first place. There are those who have done everything right and they're still sick. Many of those people urge other patients not to waste time and money (and hope) on self-experimentation and I completely understand. It has helped me personally, but my experience is not everybody's experience, and my experience is not more valid than that of others. I'd add that there seem to be responders/non-responders in ME: people who are very sensitive, making their condition easy to shift (in BOTH directions); and people who seem to have very blunted responses to all interventions. I am in the former category.

Taken all that on board? Should I also add that I'm not a medical doctor and this isn't medical advice? Yes. Yes, I should. Now, with that out of the way: the rest of the narrative!

___________________________________


The following is my own experience and advice. I'm not downplaying my illness which is, at times, severe, but being here has made me aware that I'm a lot healthier than many others, and that my advice to 'go food shopping when you have the energy' may seem laughable to those whose health has deteriorated to such a point that going food shopping seems like some kind of airy dream. I can only say that you can take some and leave some. Whatever works for you, take it with you. Whatever doesn't apply to you, leave it on the table, and maybe someone else will pick it up. :)

Also remember that I'm not a physician and this should not be construed as medical advice.

What I have taken over time, at what dosage, and why:

1) Antioxidant blend, formulated locally -
mostly B vitamins, but also A, C, and E, zinc, selenium, copper, manganese, NAC, L-cysteine HCl, L-glutathione, quercetin, and alpha lipoic acid​

What it does:​
This formula helps with brain fog and energy, noticeably so. If I don't take it, I'm wiped. A dose is two pills, so I take one in the AM and one five hours later, whenever that may be​
(As of 1/16, I no longer need to take this... after abx use prescribed by KDM.)​
2) Healthy Feet & Nerves, formulated by Terry's Naturally
mostly more B vitamins, but also biotin, pantothenic acid, zinc, chromium, alpha lipoic acid, Boswellia serrata, and Benfotiamine​

What it does:​
I had shooting sciatic pain down my right leg on 'normal' days and also down the left side on 'poor' days until I started this one. For the most part it gets rid of the symptoms entirely, as well as increasing my B-vitamin dose from 'a lot' to 'WHY SO MANY' levels. This, in turn, aids my energy levels. A dose is two caps, so I take one in the AM and one five hours later, whenever that may be.​
(As of 4/16, I take one cap a day in the morning, not two caps; my B-vitamins were too high, and I think this was contributing to pathogen overgrowth... some pathogens really like B-12-rich environments, which may be why so many of us have such low levels for our own cells.)​
3) Coenzyme Q10, 200-mg (as ubiquinone) [Edit: upped to 1200-mg per day] [Edit: how much
I need varies wildly, not day-to-day, but week-to-week. I've found that it's important to vary this during and after abx use; otherwise, you may end up feeding the pathogens and feeling more ill.]​
pure supplement - nothing else in this but what's on the label :)

What it does:​
CoQ10's action is subtle, and I had to go on and off of it a few times before I could be certain the effects weren't coincidence. It seems to decrease my head/neck pain, and I feel more energy balance when I take it - that is, fewer up- and downswings in the amount of energy available to me at any given time. In my opinion, it's a harmonizer rather than something with a direct, strong action. I take one of these in the morning. If I get the 100-mg, I take one pill twice a day, as with the previous two supplements.​
[Edit: I upped this supplement because of its harmonizing effects, but I was shocked to find it stopped an episode of PEM in its tracks - we're talking I was up and moving again in 15 minutes. That was a dose of 600mg. It's expensive, but worth it to me.]​
[Edit 2: as of 6/16 I take two, 600-mg pills per day, one AM, one PM]​
[Edit 3: as of 11/16, I take three, 400-mg pills (Solgar brand -- brand seems to matter for CoQ10 -- in the AM, two, 400-mg pills in the PM, and (often) one before bed. Basically max this sucker out until you get no additional improvement when you up the dose.]​
[Edit 4: I've been taking about 2.5-g a day for awhile, now, but I tried 5-g and went hiking in Yosemite. It worked, but the 5-g was one step too far: heart palps that evening. One citizen-researcher found a study of up to 3.2-g per day with no side-effects.]​
[Edit 5: As of 12/2017, back down to two, twice a day. YES. I need less of this now.]​
4) Vitamin D3, 1000 units [Edit: 4500 units with some Vitamin A added; I just function better on a higher
dose!]​
pure supplement - nothing else in this but what's on the label​

What it does:​
My Vitamin D was so profoundly low, and low D so closely matches ME symptoms that for one, brilliant day or two I thought it might really be the only thing wrong. I started off on 5000IU, once or twice a day, until my D levels were normal. Now I've backed off to 1000IU once a day. This helps with muscle aches, neurological difficulties, energy level and mood, too... although I didn't notice a difference in those symptoms while taking it, that could be because its effects are slow but sure. It takes months to build up a good store of Vit D.​
[Edit: as of 2/16, I take two, 2000-IU pills per day, one AM, one PM]​
[Edit 2: definitely slow to work and slow to fade, but something I need to keep doing.]​
[Edit 3: as of 6/18, I have two, 2000-IU pills in the AM and one in the PM]​

5) Vinpocetine Plus, 10-mg
10-mg Vinpo, 10-mg niacin, and 30-mg Gingko leaf powder​

What it does:​
Vinpocetine is one of the OTC supplements where I truly hesitated. It's a vasodilator and I worried that it would negatively impact my orthostasis. But there was an article here that swore it was good for ME. On the basis of the fact that ME mutates RBCs, producing a low SED rate and low ESR, and the purely subjective feeling of stasis and congestion at the back of my neck, I decided to give it a go.​
The first time I took it, a tingle flew up the back of my neck, I could practically feel blood returning to my head, which cleared of fog. I had to take it very easy the first day, but after that, it was marvelous. I took two a day; unfortunately, it began to lose efficacy after about 4 mo, so I switched to:​
6) Brain Awake by Irwin Naturals
B-Vitamins again (geez), medium-chain triglycerides, acetyl-L-carnitine, Bacopa monieri, Holy basil, L-Theanine, Tea extract, Lemon balm, rosemary, black pepper, ginger

What it does:
Some of these are circulatory aids and others have been specifically studied in regards to cognition. So far as I know, none of these are strong vasodilators like Vinpo, although the rosemary probably is a bit. This is good - similar properties with a different mechanism, just what you need when you go off one supplement and onto another.
The fact that I did not note a crash when I switched means it's doing its job, but the Vinpo at its height did a far better job. I'm definitely planning on switching back after four months or so on this, unless I find something even better.
Don't really like that this one contains caffeine. It's as much as a half a cup of strong coffee, not terrible, but I like getting my caffeine from coffee itself. ;)
I take it twice a day, just like the others, which means I get about 2/3 of a full dose. Maybe I should be easier on it, since I'm not taking the full dose! (And maybe I should take two in the AM and one in the PM...)
I switched back to the Vinpo, but at a higher dosage; the Brain Awake gave me a righteous headache. I think it must've contained some cerebral vasoconstrictors? I'm now taking three Vinpo a day, which is actually the proper dosage, so...
[Edit: switched back down to two pills. I don't need as much when I up the CoQ10, and peripheral vasodilation was growing uncomfortable.]
[Edit: off this now, as of 1/16. No longer necessary after abx. I do keep them around, and take 1/4 of a pill in case of pathogenic re-bloom.]
7) Vitex agnus-castus pdr, 800mg
just what it says on the tin​

What it does:​
I'm proud of this detective work, guys. I had real issues breathing, to the point that my limbs would sometimes go numb, or parts of my face. Ugh. I already described the mechanism in previous posts, but if this is all you're reading, it goes like this.​
Vitex --> increases FSH --> increases progesterone --> AIR​
Progesterone has also been studied as being neuroprotective, anti-inflammatory, and overall awesome. Don't take during pregnancy, since it impacts reproductive hormones, but I have to say, it doesn't change my period except that it made it a wee bit more normalized. I cannot complain on any level except that it tastes pretty awful if you take it as a pure powder. Nature's Way makes a 400-mg cap, so you can take a cap twice a day; or, you can save it for emergencies and take three caps at once if you feel a breathing episode coming on (to save money... but I seriously recommend taking it on the regular and avoiding breathing difficulties altogether.)​
[Edit: I know people look down on OTC solutions in general and on herbs in particular, but this remains one of my best treatment solutions. Have been taking it at this dose for ages, and there is little that contributes more to my overall health. If I don't take it for awhile, I definitely notice the lack!]​
[Edit 2: Nature's Way was apparently changing their design. It's widely available again. Moreover, Vitex is also apparently a mitochondrial protectant... which is maybe why it helps with dyspnea in the first place?]​
[Edit 3: Vitex also apparently contains a CoQ-10 building-block, methyl-4-hydroxybenzoate. Just how much CoQ10 can one person need to make?]​
[Edit 4: I've actually been taking about 2.5-g of this per day -- 3 pills in the morning, 3 in the afternoon. Not sure why that's not here, it should be!]​
8. Lactoferrin, 250-mg twice a day

It was hard to find Lactoferrin, but its immune-boosting abilities made it worth my while.

[Edit: sometimes I do this twice a day, sometimes once a day -- depends on the immune support I need.]​
[Edit 2: as of 11/16, I just take one in the PM before bed. Do NOT let this sucker stick in your throat! Drink plenty of water... or else anticipate a lot of 'immune activation' on the inside of your pie-hole. :( ]​
[Edit 3: after dramatically decreasing probiotic intake (see below) I'm actually at the full, recommended dosage of 2 pills per day. Still taken in the PM with plenty of water.]​
9. DHA and phosphatidylcholine:

Great for nuchal pain and inflammation. Does at the nervous-system level what Vinpo does at the vascular level. I take 100-mg DHA pills, and vary how much I take depending on the symptom (anywhere from 200-mg per day to 400-mg per day.) Same for phospatidylcholine -- pills are about 400-mg, and I take anywhere from zero to two pills a day.​
[As of 11/16, I take 200-mg of DHA twice a day, and don't really take phosphatidylcholine anymore. I ran out the other day and suddenly remembered PAIN LIKE NOBODY'S BUSINESS at the back of my neck. Geeeez. Absolutely essential to my well-being.​
I should add, too, that the reason I started taking DHA was based off of the fact that fish oil as a supplement made me crashy for reasons I can speculate but can't confirm. After reading a Morris and Maes paper about palmitoylation, I extrapolated that DHA on its own might be okay. It actually ended up being super-vital for me.]​
[As of 5/18, I take a full Solar pill in the AM, and a second, smaller veggie dose in the PM. Two pills was a bit too much. I'm starting to wonder if this is a cell membrane integrity thing.]​
10. Probiotics

So it's pretty clear that some probiotics are really a poor idea for some patients. However, a probiotic that's enteric-coated causes no untoward symptoms for me. The probiotic I take I can't begin to recommend enough, and was shocked I hadn't discussed it here, already; I've been taking it for at least a year, now. It's Dr Ohhira's Original Formula probiotic, and I take one in the AM, one around 2pm. Be aware, you should take it at least an hour before a meal, and at least two hours after a meal, or it will make you nauseated.​
Note: despite our speculation here on PR, this has many of the same bacteria in it that have made me ill in the past, making me think it's not "lacate-producing" bacteria that are really the problem. Over many, many months, my digestion has improved to the point that I can eat (some) foods I once had issues with, including citrus, apples, potatoes, sugars (yes, there was awhile where I was on zero sugar, even fruit-sugar), and some nuts. Like the CoQ-10, this is a relatively expensive supplement, but it's worth it to me.​
If I miss two doses, my gut starts to become very... loud. The company swears you only need ONE pill per day for ONE month to restore your microbiome and then you won't need their product anymore, but I guess we are special little snowflakes.​
Other probiotics I've tried that have caused neuro flares include VSL-3 (which KDM recommended), fermented foods such as kim chee, D-lactate-free probiotics, and the list goes on. This brand is the only kind I don't react to. There is also an extra-strength version which I have never tried.​
Finally, the same brand makes a version that produces glutathione in the gut. I find that it tends to help digestion and mood even -- but I saw no improvement over time from using it, just the same effect every time. With the Original Formula I've actually seen consistent gains, even though I return to having issues within a few dose-times if I run out.​
The transit time it takes for fermented food to bother me is 7 hours, or approximately the time to takes to transition from large to small intestine. Some here say that's where leaky guts are the leakiest, so that's intriguing to me.​
[Edit: as of 12/7 I no longer need the probiotic. Whoo hoo! Also, it contained mushroomy things, to which I'm allergic -- basically it became more of a liability than a help. I'll continue to search for other enteric-coated probiotics to see if I can continue. Been without it for a few days and no loud gut sounds, so... whew! Seems okay.]​
[Edit: DANGER, WILL ROBINSON. Was NOT okay.​
Decreased and increased probiotic dosage until I came to once every SIX days. o_O This gets the best balance of low allergic symptoms but still has some efficacy. Needless to say, this has taken about half a year to be sure it's right. The day I take it, my hands and feet are super-itchy, and there is a mild increase in breathing difficulties, but it's manageable, and very imp't for digestion and to fight off pathogens.​
Struggled with topical infections for awhile, but have increased Lactoferrin to twice previous dosage and this revision appears to be working as of 9/2018.]​
[Edit: as you might gather from the above, by 2019 I weaned myself off of the probiotic entirely.]​
11. K Pax Energy --
Essentially a multi-vitamin with a small amount of caffeine (less than a usual cup for 1 pill). I take a half-dose around 2pm. Overall health has zipped up another 8%! (12/17)​
[Edit 1: Interestingly, this also contains selenium, which I started taking separately as well. I take 1 pill in the AM now, and don't take it in the PM.]​
[Edit 2: I no longer need this.]​
12. Selenium --
Selenium is a cofactor in dopamine production. It should always be taken in the morning due to its interaction with clock genes. My sleep cycle shifts around if I take it in the PM -- it's noticeable! Also can be used for this therapeutically -- I can definitely take it to set my wake time (take it 8am one day, awaken at 8am the next). Good for travel, tho I primarily added it for dopamine reasons. Note, KPAX already contains some selenium so don't overdo. I just need a little bit more, so I take it every third day. It might be better to cut my pill into 1/3s but oh well.​
13. Tyrosine --
A dopamine precursor. I take about a gram per day, which is still quite a low dose.​
[Edit: I took this off and on pretty briefly and did not note gain/loss, so I dropped it.]​
It's worth noting that none of this has CURED me. Missing a few days in a row of anything important (including Healthy Feet and Nerves, DHA, Lactoferrin, CoQ10, and Vitex) will precipitate a return of whatever symptoms it suppressed, followed by a crash. After some busy time at Stanford, I've run out of a few things and been shocked how fast my health degraded back to a horrible baseline I'd nearly managed to forget. As a result, I order a new bottle of something whenever I only have one bottle left.

What I take for emergencies:

There are additional things I do if it gets real.

1) Muscle spasm or pain:

Take up to 10 drops Anemone pulsatilla tincture.

What it does:​
Anemone pulsatilla or Pulsatilla vulgaris is an herb that should only be dispensed by a practitioner, because in our more-is-better culture, there are a lot of people out there who believe that if ten drops is good, twenty must be better. No, no, listen: it's a low-dose drug. If you take twenty drops that's a double-dose and could potentially land you in hospital.​
This is the only reason why I believe this isn't being touted as a miracle drug. Basically:​
  • Anemone relaxes skeletal muscle without seeming to have an impact on cardiac muscle
  • Anemone does not produce an opiate-like high; nothing happens to cognitive function that I can discern
  • Anemone does not provoke orthostasis or any other neurological side-effects I can discern
  • Because there are no cognitive effects, it does not appear to be addictive.
  • Anemone works in five minutes or less.
I use this when my muscles are spasming so badly I can't get to sleep. Just to reiterate its non-addictive nature, I've had the same small bottle for so many years that the tincture is losing its potency.​
Directly apply an analgesic cream.

What it does:​
Reduces inflammation, which can be half the battle, and the site of whatever's bothering you​
Directly apply Olbas, or another circulatory stimulant at the site of pain or congestion.​

What it does:​
Reduces inflammation by increasing circulation to the area, carrying away oxidative toxins. Some of the ingredients are directly vasodilatory. Most of these types of oils/creams heat up, though, so be aware that this will occur. I find it slightly uncomfortable, but it's a 'good hurt', like getting a massage to loosen overworked muscles. Your mileage may vary, though.​
Use Black Cohosh tincture (Cimicifuga racemosa)
See Hormones and Neurotransmitter issues, below​
Use prickly ash, Zanthoxylum clava-herculis.
What it does:​
I'm not entirely sure the mechanism of action. I recalled it was for pain when I was having a blinding migraine. I had tried the anemone, a standard NSAID, Olbas, and black cohosh and still I was in pain. So I tried this herb, which I had because of its antimicrobial properties. It cut my pain by 1/3 within just a few minutes.​
Prickly ash is so named because it buzzes on the tongue. Recommend a few mLs tossed at the back of the throat to avoid this!​
2) Breathing Issues

Vitex agnus-castus, 1 g (a shallow teaspoon) in brewed coffee or hot water, with honey

What it does:
We've already described that. This is faster than the pill form, though, and good for emergencies. Stir a heck of a lot; it won't all combine. Sip slowly, introducing the new chemicals into your system with caution. Stop drinking once your breathing difficulty goes away, but keep it on hand and take a sip or two every twenty minutes thereafter for awhile. It's gross: fair warning. Though it's a lot more palatable in coffee than plain.​
[Edit: I have not needed to do this since I started taking Vitex pills as a matter of course every day.]​
Loosen all clothing, but do not lie completely flat
You may feel exhausted enough to want to be prone, but it's more difficult to breathe this way. Make sure you're propped up with a lot of pillows.​

3) Complete crash

Emergen-C Supplement Powder, in plain or mineral water
sugar, Vitamin C, B Vitamins, Pantothenic Acid, Calcium, phosphorus, magnesium, zinc, manganese, chromium, sodium, potassium, alpha lipoic acid, quercetin

What it does:
When I feel like I can barely sit up, I drink Emergen-C. I use it typically for the 2pm - 4pm slump that sometimes hits me, when my body insists that the best course of action is to go back to sleep. It's not something I do every day, although one of my old students recently reminded me that I used to walk around the classroom holding one and taking it by the mouthful. (Ewww, I know.)
Push the Co-Q-10
Take a high dose (1.2-g to 1.8-g) of coenzyme Q-10
Plain water with baking soda (see next section)
4) Dizziness/orthostasis

Plain water with a pinch or two of aleic or volcanic salts [Edit: plus a quarter-tsp of baking soda]
What it does:
When I feel really ill and dizzy and get disoriented, I drink a full glass (read: 10-12 oz) of water with a pinch of salts added. This is for POTS due to low blood volume. I don't just use table salt, however, but a salt that has other minerals as well. Since it's not just the sodium or chlorine that's low, anything that can help increase blood volume via additional fluids and osmosis is a good thing. I bought bulk salts at one point from Mountain Rose Herbs and gave them, as well as some homemade flavoring syrups, in baskets as Christmas presents... but I saved some for myself as well. I still have and use them.​
Mountain Rose is also a great way to buy bulk herbs. Their stuff is clean and ethically purchased.​
[Edit: Recently, I added a good thimbleful of baking soda to this. When I have orthostasis, my muscles tend to get inflamed too. This, in turn pinches the sciatic nerve again. Eurgh. A little bit of a weak base may be able to partially neutralize that lactic acid.​
But it may also be the CO2. Blood carbon dioxide is often low in CFS patients. This does imply acidosis, and adding more CO2 may be able to help. There are quite a few studies on this, but don't do it often. If you push the baking soda too hard, your body will produce yet more acid in response. Drink slowly and until you feel a bit better; then stop.​
Sometimes I add a touch of chai syrup to this, to increase circulation and make it taste less crappy; though be aware, if it tastes VERY salty, you've added too much.]​
pH basic by Enzymedica also does a freakin' fabulous job at dissipating this muscular burn. I now take it every time I'm more active.​
5) Surface infections

Goldenseal tincture

What it does:​
Goldenseal (Hydrastis canadensis) is an excellent topical and internal antimicrobial agent. For those of us more prone to getting infected everything, it's a boon. It works especially well around the gums, but can be used anywhere. Be advised it stains ALL THE THINGS.​
Colloidal silver
What it does:​
Colloidal silver is one of those natural remedies I wasn't willing to try at first. Half of the information online makes it out to be an incredible panacea, and the other half says your skin will turn silver as you get heavy metal poisoning!​
Actually, I have found it incredibly helpful for mouth infections and such. At 10ppm, you would have to really, REALLY try hard to poison yourself -- as in, drink drinking glasses of it every day for the next 20 years -- when the dosage is 5-mL up to 7/day. It works well, too.​
A simple, non-allergenic cream applied often
What it does:​
Surface infections can occur on the skin if you are immunocompromised in any way, and if your skin is fragile/prone to dryness, cracking, etc. Applying a cream where your skin is dry/fragile can be surprisingly effective in preventing infection by supporting your skin's integrity.​
6) Internal infections

GSE (Grapefruit Seed Extract)

What it does:​
Grapefruit seed extract is distinct from powder of grapefruit seed. It should come in a squeezable container and have a dose of about 10 drops.​
Be very aware, this has been called an 'herbal antibiotic' and it lives up to the name. It will kill anything and everything in your digestive system, and die-off symptoms will occur. Drink it in a full glass of water, slowly, over a long period of time. I would suggest that, if you have a strong infection, take it twice per day for a few days, then once a day for a few more. When you stop having die-off symptoms, take it a few days after that.​
ALWAYS TAKE WITH A PROBIOTIC. Perhaps this won't make a difference, but I always spaced it out: GSE, wait a few hours, probiotic.​
You can overdo this, just like you can overdo a regular antibiotic. I can't emphasize enough that this is a natural product that behaves like a prescription medication.​
Candidase (Enyzymatic Therapy)
What it does:​
It contains some antimicrobial and acidic compounds (Candida apparently likes a more basic environment). Pretty strong -- see above.​
7) Hormone and Neurotransmitter Issues

Black cohosh tincture (Cimicifuga racemosa)​

What it does:​
For decades, people thought C. racemosa contained compounds that bound to estrogen receptors. Black cohosh is most well-known as a menopausal attenuator, smoothing out the rough ride of those perimenopausal years. As it turns out, it doesn't: it contains compounds that bind to dopamine receptors. If your dopamine is out of whack, B.C. is your lovely, lovely plant.​
It has normalizing action - since it contains dopamine agonists with less action than dopamine itself:​
  • if your dopamine is low, it will bind to dopamine receptors and activate them a little, relieving your symptoms.
  • If your dopamine is high, it will compete with actual dopamine, provoking less response than dopamine and keeping the 'real' dopamine out of the receptor.
At least, that's the current working theory for how it does its thing.​
As I've had worsening dopamine related stuff after my huge crash of early 2018, I tend to take this in the morning with my tyrosine and selenium to give that extra dopaminergic jolt. But if this continues, I'll have to transition to L-dopa.​
It acts on serotonin receptors similarly, but unlike other serotinergic things, it doesn't seem to make me more ill, perhaps because it's a balancer here as well.​
Also, at higher doses, it works really well as a muscle relaxant -- higher doses being 3-5-mL of a 1:3 or 1:4 tincture.​
Note: beware of stuff that isn't the tincture -- often, with herbal remedies -- especially the more popular and well-researched ones -- companies have two 'sets' of herbs. One set, they work until they have extracted the active ingredient -- then they add this to whole herb until they believe it has reached a certain percentage of what they believe to be active. This can result in a far higher dose than should be taken at a time. In my personal opinion, it is better to take the whole herb or a tincture than a commercial pill that has been 'standardized', for multiple reasons which probably belong in their own article.​

8) DAO

Good for food intolerances, taken before meals. I take about 50-mg at a time. It helps mildly most of the time, but if something you have eaten accidentally is giving you neuroinflammation, it's shocking how much it helps.​
I wish I'd found something for that hyperexcitatory, stimulated state, but I really haven't. Anemone keeps the muscles from jumping as badly. Luckily, I appear to have moved beyond that stage of the illness, and am lapsing into the 'exhaustion' phase. (Is that lucky?)

What I absolutely have to avoid:

1) Chocolate, Wheat, Dairy, too much fat, too much sugar
It seems like I've probably had slight intolerances to these things my whole life, but now that any imbalance knocks me for such a loop, I have to avoid them.
Chocolate has stopped giving me headaches! This fills me with joy. <3
It was the TYPE of fat that mattered; I do just fine with ridiculous amounts of coconut oil. It's beef fats that give me the most trouble.
....aaaand I can eat sugar again. WOOT.
2) Therapeutic Sugars
Stuff like inositol makes me feel awful. The pressure in my head increases and I feel brain foggy and dizzy.
3) Magnesium powder
No idea why, but see previous. Calcium, too.

4) Serotonergic compounds, and serotonin-like compounds
You know, I don't think I mentioned the weird, characteristic headache that comes with these, too. It feels like intense, localized pressure against the outside of my head. Really odd. This includes Rhiodiola rosea, which makes me very sad, because it worked like a charm... at first.​
Also, this comes with racing thoughts, muscle twitching, and... Bell's Palsy-like symptoms. I'm guessing it suppresses the immune response somehow? In any case, I avoid it like the plague.​
5) Corticotropic compounds, and cortisol-like compounds
I think we've beat this one into the ground. ;)
Although we could hit it harder...
Aaaaand research to back up our personal experience is always nice: apparently a good subset of us have cortisol hypersensitivity.
Non-drug interventions:

1) Yoga and other light activity -
It's very important to me to stay as active as I possibly can. Being active increases circulation and helps aid in the clearance of the nasty stuff that's making me feel ill. Don't push yourself to PEM, but do everything you can to keep moving in a way that is gentle and self-aware. Be aware of the initial signs of overexertion (cold extremities, forgetfulness) and stop THEN, rather than when you begin to feel ill.
2) Manage your kitchen -
It used to be that I would go to the store when I felt energetic and buy all this stuff to cook with, then have an episode and have to watch it rot, feeling guilty for wasting food and wasting money. One of the tiniest stupid things I did was look up how to store different kinds of fruits and vegetables so they'd last longer. So now I know I can buy something Saturday and cook it next week if I need to avoid activity for awhile and it's no big deal.
When you're energetic (read: feeling 'almost normal'), go food shopping and fill the house with good raw ingredients; or write up a list and ask a friend or a food service to do so for you.​
The next time you're energetic, cook ahead and freeze the results of your labors. If I have a good day, I can make a loaf of bread. If I have a very good day, I can make bread, soup, and mini-casseroles. Think about it like caring for future, sicker you - imagine yourself being really glad you did the work later, and it will help keep you motivated to do the things.​
This way you can eat healthily, even when you're feeling awful.​
3) Do not let yourself be around people who are not good and kind to you -
...wherever it's possible. I removed myself from my old GP, even though I could have stayed to gloat about how right I was. It wasn't worth it to keep him around just to get an 'I told you so'. Stress does impact your health, and you have to reduce stress wherever it's possible to do so.​
4) Be good and kind to yourself.
Focus on your capacities and what you bring to the world, no matter how small it is. Do not berate yourself for events out of your control.​
5) If at all possible, do not sleep during the day.
The way I finally fixed my sleep cycle was by refusing to sleep except at night. Some days, my bed is calling a siren song, guys, it really is. But I force myself to stay awake, thinking of the far higher-quality sleep I'll have that night if I hold off. Sometimes, I go and lie down if I'm feeling really fatigued, but I prop myself up on pillows and bring my laptop so I don't drift off.​
My telltale sign of damaging exhaustion is a slight edge of nausea. If I get that symptom, I know I'm too exhausted to stay awake, and I really do need to nap. On those days, sleeping in the afternoon doesn't affect my evening sleep, because I will still be more than exhausted enough to drop off again that evening.​
Once again, guys, I am aware that there are those for whom 'sleep hygiene' will never be enough to get your sleep schedule regulated unless other aspects of your health improve. I was at the place where I was exhausted enough that it was a temptation to sleep in the daytime, but it wasn't overall good for me. You, however, may need to do so in order to maintain your health. The low-but-slow principle applies for any changes in your life, not just for meds: don't push yourself too hard.​
6) Turn a heated blanket on a few hours before you go to bed.
I have a heated blanket stuck between a few covers on my bed. It increases my circulation while I sleep, and eases overworked muscles. I make sure it's on a few hours before bed so that my bed is warm by the time I'm ready to climb in. This increased my sleep quality SO MUCH. *Be aware!* This can be a fire hazard, so read the warnings on your own blanket carefully. :) Be safe!​
7) Use a tanning bed in the winter, get sun the rest of the year.
We had long conversations/unofficial polls here on Phoenix Rising and S4ME where it seemed that there is, in fact, a pattern of worsening in the winter versus the summer, whenever that is for you in your hemisphere. One of my own worst and longest crashes was in January and I noted a distinct uptick in my well-being in mid-fall (late Sept - early Nov). I won't say I'm convinced, but I'll say I now strongly suspect that there is a seasonality to ME symptoms.​
I managed to find a GP who was game, and measured my CBC and Vitamin D stores as I went through the winter. In addition, I started going to a UV tanning bed during the winter to see if that would improve symptoms.​
This was, by far, the best thing I had done for my well-being in years. Not only did I not have a huge crash in the winter as I did in January 2018, but I remained as productive and energetic as I ever am: the winter slump never happened.​
I will say that I wrap a towel across the back of my neck, where I experience a lot of inflammation and pain, generally; and that I went in low-grade beds for short periods of time (~7-8 min) once a week. This is a very inexpensive treatment where I am, ranging $5-$8 per week. I also put on plenty of lotion so as not to dry out the skin.​
Hey, some of the links above are from iHerb, that gives me credit if I recommend stuff. Most of you here know me and anyone with experience with iHerb knows I'm not making a living this way, but I did figure I should inform you they're here, for purposes of Moral Uprightness.

And that's it for a bit, guys. More later!

-J

[Last edited: 06/2020]

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Hi, Jaime! I am in the process of ordering 1mg of Black Cohosh triterpenes and 50mg of Rhodiola from a local cmpdg pharmacy under the prescription of my integrative dr. She suggested I'd alternate them during the week, with a few rest days in between - or not. I found her suggestion a bit random, and would like to know what you think about it. My morning cortisol and S-DHEA are very high, and estrogen and testosterone very low, with some menopausal symptoms - monthly cycles come 2-3x yearly since 2011. I'd be thankful for your insight.
 
Sure, @Gondwanaland!

Okay, so the BC sounds like a good, even great plan. There's no need to 'start low' because a full dose of the stuff is just 1-mL of tincture. Wait. 1-milliGRAM? Uhhhh, okay, that is high. That is a high dose. You need 1/5 - 1/4 of that.

Black cohosh tinctures are formulated in 1:5 or 1:4 ratios, meaning that there is one gram of black cohosh herb per every four or five milliliters of tincture. A dose is ONE milliliter. That means a dose is 1/4 of a gram. And this is not the 'standardized' sort for which they typically add more terpenes than the plant would naturally have.

Many of us are sensitive to alcohol, but seriously, one milliliter of tincture would have the same amount of ethyl alcohol as a banana.

I'd recommend getting a decent tincture and taking 1-mL. Though your mouth may riot in protest. It tastes... soapy. Like... soapy dirt. Not a very glowing recommendation, I know. Though I will add that, when my estrogen is really low, it tastes weirdly sweet. Like my body is saying CONSUME THAT, PLEASE & THANK-YOU.

I forget, Gondwanaland, do you have serotonin overreactions? Because if so, I wouldn't touch that Rhodiola with a ten-foot pole. It's serotinergic. Moreover, it will eventually and inevitably cause a crash: rather than helping you generate more energy-producing molecules, it seems to encourage you to burn through your reserves faster. It feels GREAT for awhile - a little more, a little less depending on your initial health state. Then, you crash spectacularly when whatever process it pushes reaches the bottom of the proverbial barrel.

Follow-up questions are fine. :)

-J
 
Thanks for the heads up, blog comments are really hard to folllow...Thank you so much for the detailed response!

So... DOUBLE CRAP... will have to open my triterpenes capsules and take just a little bit... Re serotonin, yes, I did have serotoninergic syndrome from 25mg of 5-Htp last year... But I took it yesterday hoping it would help with bowel movements and it did a little, and I had no sides, I think b/c I just replenished with B2...
 
Very interesting, Jaime. Grapefruit seed extract also comes in capsules, at least in the UK - that's what I usually take. I take this one:

http://www.viridian-nutrition.com/shop/Grapefruit-Seed-Extract-Citricidal-400mg-P576.aspx

If you are going to take probiotics it's important to take the right ones, e.g. if you are over-acidic it would not be wise to take a probiotic that increases acidity.

I cannot tolerate some of the supplements you take, for example Co-Q10 (just 100mg), and a much lower dose of Vitamin D than you take undid a lot of the improvements I had made with my own regime.

Be careful not to offer direct medical advice!
 
@MeSci - Thank you!

Yes, I have heard in the UK it can be a cap. Here, at least, that's typically GSE (grape-seed rather than grapefruit) which tends to confuse people. :)

Regarding offering direct medical advice:

"The following is my own experience and advice... I can only say that you can take some and leave some. Whatever works for you, take it with you. Whatever doesn't apply to you, leave it on the table, and maybe someone else will pick it up. :)"

But I did write this early, and normally I make those statements more explicit. I think I will edit this to reflect that. Your comments about getting over-excited by certain supplements are valid, and should be mentioned somewhere in here. :)

-J
 
I didn't see the disclaimer, only a few bits of direct advice! For example "If at all possible, do not sleep during the day." I don't think that this is good advice for everyone, and may be bad for some.
 
This is a lot of good information! Thanks for sharing. What does black cohosh help you with, exactly? I have symptoms of dopamine dysregulation, and at points of desperation have considered antipsychotics, but since I'm not schizophrenic/psychotic and it'll probably just make CFS worse...I'm saying no to those for now. Is black cohosh worth trying? I mainly have moodiness and lowered motivation, cognitive dysfunction and less enjoyment of things in general. I don't metabolize antidepressants well, and am doing better with certain herbs like ashwagandha, so I was thinking one of the things I'll try next is black cohosh tincture...

Also, thanks for the pep talk and suggestions you gave me. I do take dha, but I've only recently heard of phosphatidyl choline, and will keep that in mind for cognitive function for the future.
 
Hey, Tabitha! Not a problem.

I first came to my knowledge of black cohosh for feeling motivationless and down as part of a PMS-picture. I still use it for all PMS-related symptoms. I also do use it in higher doses for muscle pain.

Black cohosh is worth a try, but keep in mind that more isn't necessarily better, dopaminergically. Black cohosh works perfectly well at doses of about 1-mL for this purpose. However, there is an easy way to tell whether or not you've taken enough, which is weird and which I've never observed in another plant medicine.

Black cohosh tastes gross. It's like a combination of dirt and soap and evil. However, if you really need it, suddenly it tastes earthy yet sweet. It's weird and wild. I can take a few drops and wait, and take a few more drops and wait, and once it stops tasting good, that's when it's time to stop taking it. For PMS symptoms that's about 1-mL for me.

I might recommend Rhodiola rosea, but start off even lower, there. Just two or three drops of decent tincture. I had every symptom under the sun during the acute phase, including some transient motivationlessness that didn't feel 'like me'. Rhodiola helped with that, but you should be cautious taking higher doses: it can be quite excitatory as you up the dose.

Finally, be VERY wary of prepared supplements for either of these herbs. As I mention above with black cohosh, 'standardized' extracts I find hazardous for PWME, since we are so sensitive to new chemicals as a group. Go for whole-herb tincture (if you can tolerate small amounts of alcohol) and steer clear of any standardized extract or pill.

Since it doesn't say it here, just a reminder that I am not a physician and this is not intended in any way to be medical advice.
 
Sure, @Gondwanaland!

Okay, so the BC sounds like a good, even great plan. There's no need to 'start low' because a full dose of the stuff is just 1-mL of tincture. Wait. 1-milliGRAM? Uhhhh, okay, that is high. That is a high dose. You need 1/5 - 1/4 of that.

Black cohosh tinctures are formulated in 1:5 or 1:4 ratios, meaning that there is one gram of black cohosh herb per every four or five milliliters of tincture. A dose is ONE milliliter. That means a dose is 1/4 of a gram. And this is not the 'standardized' sort for which they typically add more terpenes than the plant would naturally have.

Many of us are sensitive to alcohol, but seriously, one milliliter of tincture would have the same amount of ethyl alcohol as a banana.

I'd recommend getting a decent tincture and taking 1-mL. Though your mouth may riot in protest. It tastes... soapy. Like... soapy dirt. Not a very glowing recommendation, I know. Though I will add that, when my estrogen is really low, it tastes weirdly sweet. Like my body is saying CONSUME THAT, PLEASE & THANK-YOU.

I forget, Gondwanaland, do you have serotonin overreactions? Because if so, I wouldn't touch that Rhodiola with a ten-foot pole. It's serotinergic. Moreover, it will eventually and inevitably cause a crash: rather than helping you generate more energy-producing molecules, it seems to encourage you to burn through your reserves faster. It feels GREAT for awhile - a little more, a little less depending on your initial health state. Then, you crash spectacularly when whatever process it pushes reaches the bottom of the proverbial barrel.

Follow-up questions are fine. :)

-J
Ah, old me sounds so confident! This is just personal observation and not Fact.
 

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