On an upswing. Speculating about the reasons.

My health has been above-baseline almost all summer.  For that matter, if we don't count the SIBO symptoms and neurological symptoms (most likely, small fiber neuropathy)—a big "if"—I seem to have been on an  upswing since about December or January.  Starting in or about June, the neuropathy and SIBO improved, leading to even greater upswing.  Just as the downswings (the crashes) are sometimes difficult to explain, so too are the upswings.

Perhaps I hit upon the right combination of supplements for me by sheer luck.  I'm frequently adjusting my medication and supplements at the recommendation of doctors and based on new and changing symptoms.  Right now my med./supp. routine is

• 4 Equilibrants per day on weekdays only (pause on weekends for "pulsing" the dose), plus;
• T3 and T4 for hypothyroidism;
• Digestive enzymes with every meal (for SIBO); 
• Allimax (a garlic extract) with every meal (for SIBO); and 
• Dihydroquercetin (recommeded by Dr. C) as needed for lactic acid buildup and/or histamine.  

I eliminated a couple supplements at around the time the neurological symptoms improved, including my multivitamin which contained significant amounts of B12 methylcobalamin.  I may have been over-methylating on the multivitamin.  The other supplement I eliminated at that time was phosphatidyl choline (PC).  I still can't tell if PC helps or hurts—I get mixed results.

I have been occasionally taking caffeine mints (the caffeine never hits the stomach, so it is gentler on the GI tract), which also contain B12 in the form of cyanocobalamin.  Based on my genetic profile, cyanocobalamin may be the better form of B12 for me.  It does not cause me to over-methylate. (I realize the practice of taking caffeine in any form by a PWME is considered risky by some.  I'm taking it cautiously.)

Also, summers are  usually better for me, perhaps because there are fewer colds, flues and illnesses floating around and perhaps because moderate amounts of natural Vitamin D from the sun seems to serve me well.  But recent summers have not been as good as this one.

The strong shortness of breath (SOB) that was plaguing me in recent years also seems to have abated.  I suspect it has something to do with the change in my diet required by SIBO.  Something in my previous diet may have been triggering histamine and allergic-like reactions which seemed to lead to SOB and sniffles.  I still occasionally experience the SOB, but nothing like before.  I think I know now what foods to avoid, particularly grapefruit, avocado, cashews, coffee, dark chocolate and large amounts of kale.  At the same time, now when I do try small amounts of those problematic foods, the reaction is nothing like before.  Something else seems to have helped abate the SOB and post-nasal drip.  When I do seem to have an overflow of histamine, dihyrdoquercetin helps.  I previously reported that dihydroquercetin did not help, but I don't think I was paying close enough attention at the time.  It's a subtle difference, but I do believe it is real.     

Unfortunately, this improvement may have a potential dark side.  Throughout this period of increased functionality, the tenderness and swelling in the lymph nodes in my neck seems to have worsened and become more constant.  I don't know what this means and I plan to discuss it with my doctor soon, but it tends to temper my enthusiasm about the upswing. 

Beware of Supplements that May Cause Kidney Inflammation or Damages

Since I first developed ME in 2011, one of my on-again-off-again symptoms has been an aching in the area of the kidneys.  Two separate nephrologists (kidney doctors) tested my kidney function and told me it was normal and that I did not have any kidney stones, and yet these aches would persist.  In recent years, the pain has been mostly absent, but would come back 4 or 5 times per year.  

In the past three weeks, the pain has been back again.  It usually comes with strong, persistent thirst. I wondered if there are any supplements that could help reduce this inflammation.  In the process of searching for supplements that would help, I came across this list of 17 drugs and supplements that, according to the American Society of Nephrology, have been associated with kidney inflammation. One of them, to my surprise, was L-Lysine, which I have been taking at a "maintenance dose" ever since my outbreak of the shingles.

It's probably important for anyone who takes supplements to check this list and make sure they are not potentially damaging their kidneys.  

My wild adventure with Phosphatidylcholine

One of my doctors (Dr. M) recently recommended I treat with Phosphatidylcholine (PC).  Dr. M is convinced I have Lyme disease, which I’m highly skeptical about.  But since PC is often recommended for people with ME/CFS too, I thought it was about time I try it.

What is Phosphatidylcholine

Essentially, PC is a lipid that is the primary component of the cell walls within the human body.  As a supplement, sometimes PC is combined with other “lipids” in what’s sometimes called lipid therapy.  According to Dr. M, people with Lyme and ME/CFS sustain damage to the cell walls and taking oral PC helps repair the damage.  Healthy cell walls are critical to overall health for reasons too complicated for this post.  Dr. M stated that many of her patients report feeling significantly better on PC. 

At the same time I received Dr. M’s advice, I happened to be reading Dr. Richard Horowitz’s book, “Why Can’t I Get Better,” about Lyme, ME/CFS, Fibro, and other chronic illnesses.  At times, it almost seemed as if the author praised the benefits of PC therapy on every page.  This further motivated me to try it. 

If you read the Internet’s claims about what PC can do for people with complex chronic illnesses, they seem far too good to be true.  According to various sources, it reportedly detoxifies, repairs nerve damage, boosts the methylation cycle, repairs mitochondria, clears oxidative stress, repairs intestinal damage and treats ulcerative colitis, improves memory, and many other things. 

Again, this is all “…according to sources.”  It’s often difficult to verify the trustworthiness of these authorities. 

My Past Dalliance With a Little Bit of PC

Back when I was experimenting with Dr. Yasko’s methylation protocol, one of the few supplements I felt was truly helping was a phospholipid complex which included PC along with two other lipids:  Phosphotidylserine, and Phosphotidlyethanolmine.  It was called “PS Complex” or sometimes “PS/PS/PE/.”  It was actually one of the few Yasko supplements (a “short route” supplement) that I felt truly helped me.  Unfortunately I stopped taking it during a time early in 2015 when I was in a sort of semi-remission, not realizing that I may have reached that state of near-remission because of the supplements I was taking at that time, including PS Complex.  The dose of PC in Yasko’s PS Complex is much less than the standard dose of PC.   

Hello Again, Old Friend

With all of the above in mind, I decided it was time to try PC.  Then came the shocker:  it costs about $90 per bottle! 

Granted, there are less expensive brands on the market, but the consensus of Phoenix Rising users seemed to be that there are only a few brands of PC that are of truly good quality.  The brand my doctor recommended was one of them:  I took the liquid BodyBio version. 

My doctor told me to mix the liquid PC into a smoothie or other strong-flavored drink.  I don’t have the time or patience to make a smoothie every day, so I decided to take it straight.  It tastes like motor oil, but for some strange reason I enjoyed the taste.

My complaint about most ME/CFS supplements is, if they make a difference for me, the difference is often subtle. Sometimes, I am not entirely sure if any individual supplement, alone, is helping.  Often I continue to take a supplement anyway because (a) many other ME/CFS patients report that the supplement is beneficial, (b) the science says it should be beneficial based on my symptoms, and (c) my doctor recommends it. 

PC was not in this category. 

Beginning the next day, I began to experience very strong signs of a Herxheimer reaction and possibly over-methylation: Brain fog, muscle twitching, achy kidneys (nephritis), and stronger-than-normal inflammation.  Still I persisted with the PC for another five days, hoping (stupidly) that I could push through the Herx. 

On day six I stopped taking the PC, and the brain fog went away almost immediately.  However, the nephritis and muscle twitching still continue as of today, four days after halting the PC experiment.  Those two symptoms seem to be improving slightly with each day but still I’m astonished at how powerful the PC was.  My assumption is that the PC set into motion a detox event that my body is still struggling to clear. 

After experiencing such a strong reaction to PC, I started looking deeper into what other patients were reporting about PC on various forums.  (I probably should have done this before taking PC).   Based on forum posts, my rough estimation is that about two-thirds of the patients who’ve reported on their reaction to PC state they had strong negative reactions, many of them consistent with what I experienced.  But those who report positive effects seem very insistent that PC is a key to improvement

There’s one important thing I haven’t mentioned yet:  on day 3 of the PC experiment, among all of the negative reactions, I had a day of extremely clear headedness, almost bordering on a euphoric feeling.  Despite the nephritis, my energy was unusually high that day.  In fact, I had so much energy and mental clarity that I was awake most of the night as the energy burst continued.  Also, I've barely had any shortness of breath or post nasal drip since my first dose of PC.  Strange...

Going Forward

Based on all of the above, I believe there’s great potential in the therapeutic value of PC if I can hone in on the correct dose, correct titration, and perhaps the correct combination with other supplements for my body chemistry.  Maybe the solution is to go back to the more mellow “PS Complex” that I had success with in 2014 and 2015.  Of course, my natural inclination is to see how far I can take the benefits of PC, so I may experiment more with the pure PC liquid.  After all, I have a $90 bottle gathering dust.

I've Cut My Supplements Way Down

In February, I wrote that I wanted to cut my supplements way down.  It was partly because my doctor suggested it and partly because I'd wanted to do it for a long time anyway.  Too many supplements is expensive and risks overtaxing the liver.  Not to mention they are a hassle.  So I listed my supplements in order from those that I was most sure were helping, to those that I was least sure were helping.  Then I started eliminating supplements from the bottom of the list.

In April I took a big step back in my baseline health.  I didn't think it was because of the reduced supplements, but just to be safe, I went back on all of them.  Things returned to normal a couple months later, and so I started eliminating supplements again.

Of the 18 supplements on the list, I'm now only taking half of them.  (It's funny, I thought I'd eliminated more than that before I counted just now).  But for many of the suplements that I'm still taking, I've either reduced the doses, or I take the weekends off from them.  The only supplements/Rx's that I take on weekends now are T3 Thyroid and D-Ribose.  Everything else is eliminated on the weekend.

So far, I don't think I feel a difference.  As long as that continues, I will continue to cut down on supplements until either I eliminate all but a few obvious ones (like multivitamin and fish oil), or until I experience a setback.  

For those who might wonder, the supps and Rx's I'm still taking are: T3, Vit. D3, Probiotics, Equilibrant, DHA/EPA, D-Ribose, and only occasionally potassium and magnesium.

Others might wonder: given that I haven't missed the supplements I eliminated, does that mean that they were a waste of time and money?  That's hard to say.  The list I prepared in February was only a fraction of the supplements I've experimented with since getting ME/CFS.  Over the last four years, I've probably tried 4 times that many (so about 70 - which is not unusual for a PWME).  Given the large number of supps I've tried, it would be absurd to say that they all helped, and I specifically recall some that made me worse.  But I think for the most part, I needed the supplements that I took when I took them.  I have certainly improved over the last 4 years, although I'm nowhere near where I'd hoped to be by now in terms of improvements.  I think most of the supplements that I tried and stuck with for any length of time were the right supplements for me at that time.  I don't regret anything.

Re-Ranking My Supplements

As I wrote about in my last post, I've been planning to rank all of my supplements and prescriptions in order of most effective to least effective.  After that, I plan to start cutting from the bottom until I notice a decline in my health.  The idea is to get down to only the supplements and prescriptions I absolutely need in order to maintain my current baseline health.  My new doctor supported his idea.

I had ranked by supplements once before, but it has been years since I've done so, and since then, many of my supplements have changed.  I've also had much more time to observe which supplements are clearly helpful and which supplements are more questionable.

Unlike last time, I'm not going to rate any "treatments" other than supplements and prescriptions -- in other words, nothing that fits into the category of lifestyle adjustments, like changes to diet or sleep habits.

I'm only including supplements that I take every day.  I am not including "as needed" supplements.  For instance, whenever I'm coming down with a cold, flu, or other mystery bug, I take my cold-buster regimen.  I'm not worried about cutting back on those supplements at this time.

The ranking is included on the attached Google Docs spreadsheet.  The supplements and prescriptions at the top of the list are the most effective and would be the last to be eliminated.  

https://docs.google.com/spreadsheets/d/1ElblrbMj20NVgyC2jH881ar6YF7MpkafmG4UmTnCHIg/edit#gid=0

Rating the effectiveness of my treatments

[2/12/13 note:  This post is out of date and needs to be updated.  I will update it soon.]

In today's post, I take inventory of all the supplements, medications and other treatments I have taken or am taking for ME/CFS and categorize them according to how much, if at all, they have helped me.  Obviously, nothing so far has been a "cure," but several treatments have reduced or eliminated certain symptoms.  I categorize the treatments into 5 tiers based on my level of certainty that they have helped.

Tier 1 - Very High Certainty

While nothing is 100%, below are treatments that I am 95% or more certain have helped:

Low-Carb, No-Processed-Sugar Diet - Within a week of changing my diet, my GI tract issues resolved.  On the rare occasions that I have "slipped" from this diet, those symptoms have briefly returned.  Signs of Candida, such as white film on tongue, have also diminished.

T3 Thyroid Hormone - 37.5 mg/day.  T3 has solved my body temperature issues. Prior to taking T3, I frequently felt colder than I should under the circumstances,  especially my hands and feet.  That is no longer a concern.  My doctor insists that T3 also improves energy, but I have not been able to specifically attribute my increase in energy to T3.

ImmunoStim - 3 capsules 2x/day.  As soon as I began taking this supplement, I stopped experiencing regular sore throats, which formerly affected me at least once or twice per week.  It also halted my regular swollen glands in the neck and armpit.  Unfortunately, at $52 per bottle ImmunoStim is very expensive.

D-Ribose - 5 grams/2x per day.  The effect is subtle, but definitely noticeable.  I experience a bounce in energy during the hour or two after taking a dose.  I also believe that Ribose effectively eliminated my POTS symptoms, which plagued me early in this journey.  I still experience POTS, but only very minimally.

Vitamin D3 - 5-10,000 IU's day.  Supplementing D3 is supposed to help with shortness of breath (SOB).  My D3 levels originally tested low (in the 30's) when I was experiencing frequent SOB.  After taking 10,000 IU's for a couple of months, my D3 serum level was in the 70s (close to optimal), and I now only experience SOB rarely.  I now take a maintenance dose of 5,000 IU/day.

Magnesium - At one point, I thought that my ME/CFS may be evolving into Fibromyalgia as well.   I was experiencing muscle pains all over my body.  I began supplementing approximately 300-500mg/day of Magnesium and the symptoms abated.  I believe it also improved my sleep.

Melatonin. Improved my sleep significantly.

Body pillow - As a side sleeper, I believe this pillow has improved my sleep. It's a much more ergonomic way to sleep.  Whereas before the body pillow, I would turn over 5 or 6 times a night--waking up a little each time--now I fall asleep in one position and wake up in the same position 8 hours later.  The difference is remarkable.  

Tier 2 - Fairly Certain

These are treatments that I am fairly certain are responsible for the improvements I experienced at or near the time I began the treatments, but about which, for various reason, I am less certain of their benefits.  

B12 Protocol (Specifically Fredd's protocol).  I sense a small bump of energy after taking the active B12 lozenges and the dibencozide, but I have not yet experienced the system-wide healing (the repair of the methylation cycle) that is supposed to accompany these types of treatments.  I have only experimented with this treatment for approximately 2 months, so I may not have given it enough time.

NT Factor - 2 tablets 2x/day.  I noticed a slight improvement in energy levels and a decrease in the length of crashes after beginning this supplement.

Pau D'Arco tea - I've noticed that the white film on my tongue - which is indicative of candida - dissipates when I drink this tea regularly. 

Pregnenolone - 10-100mg/day.  My pregnenolone levels tested low - in the lowest 5% of the normal range.  When I took 100mg of pregnenolone/day, I noticed an improvement in mental clarity, memory, and sharpness.  While I am not comfortable taking 100 mg every day (I normally take only 10 mg per day),  I will occasionally take 100 mg when the need arises.

Potassium - 300-1200 mg/day depending on need.  Muscle twitching, muscle cramps and brain fog afflicted me for a period of time after I began supplementing B12.  Potassium alleviated these symptoms.

Yoga.  No other form of exercise was remotely helpful -- in fact, most others caused a crash.  But there's something about the light stretching of yoga that usually ensures I have a good energy day.  Oddly enough, I use my wife's pre-natal yoga videos, which are tailored for low-energy workouts.

Breathe Right nasal strips - Improves my sleep, but I only use these when my nose is slightly stuffy.

Tier 3 - Uncertain But Hopeful

I haven't noticed any specific improvement from these supplements, but I continue to take most of them because the science behind them is sound and because I believe they may, individually or collectively, have contributed to my overall improvement.

Pro-biotics 2x day

Zinc 23mg/day

Fish Oil, DHA/EPA  - 100 mg/day with occasional breaks 

Milk Thistle - 1260/mg, 2-3x day, with occasional breaks - to protect the liver.

Multivitamin powder - 1 scoop every morning.

Thymic protein - 1 packet every 4 hours when getting sick.

CoQ10 - 200 mg/day

Vitamin C - An additional 500mg/day (on top of multivitamin) when getting sick or crashing

Acetyl L-carnitine - 200 mg/day

Nystatin (for candida) - 1.5MU/day for 2 months.

Coconut Oil (also for candida) - Whenever a recipe calls for the use of oil, we substitute coconut oil.  Regardless of whether it actually works against candida (some people swear by it), it tastes better anyway.  The only downside is it is more expensive than vegetable oil. 

Tier 4 - Too soon to tell 

These are treatments that are, by nature, supposed to be long term treatments and which I only recently started.  Over time, these treatments will likely move up or down on this list.

Famciclovir - 500mg 2x/day

Low Dose Naltrexone (LDN)  Starting at 1.1mg and working up to 4.5 mg/day

Tier 5 - Possibly made me worse

Fluconozole (generic for Diflucan) - I experienced a sharp increase in the pain in my kidney areas right after starting this medication.  The kidney area pain dissipated immediately after stopping the medication.

VSL3 probiotics - My experience with VSL3 is written about here.

Naltrexone for ME/CFS

Yesterday, when I asked my doctor about immune modulators, he seemed eager to prescribe me low dose Naltrexone.  I had never heard of it, so I decided to research it before filling the prescription.  This post is a summary of my research.

A site called Low Dose Naltrexone seems to be the best for general information.  After that, my next stop was the Phoenix Rising forums.

The only "problem" with the great Phoenix Rising (which I love) is that there's often too MUCH information.  The current thread on Naltrexone is 74 pages and growing.  Who has time to read all that?  Well, I intend to anyway, and this post will be my ongoing summary of that thread.  My citations in parenthesis are references to the post #s within the thread (found in the upper right corner of each post). 

First, Naltrexone was originally developed to help drug and alcohol addicts with their dependency issues.  It also helps people who have chronic pain, as it seems to reduce inflammation, so it can be especially useful for those who have fibromyalgia in addition to ME.  For ME patients, it is usually given in low dose, of 4.5mg or less.  In it's low dose form, it is known as LDN, for low dose Naltrexone.  Some people take as little at 0.5 mg. (50)

Alleged Benefits of LDN

One poster made the following claim, which if true, is exactly what many of us need: "LDN is an immune modulator rather than a booster. It is supposed to increase NK cells. It is also supposed to shift the immune system from Th2 dominance to Th1 dominance--which would allow the body to better fight a retrovirus." (136).  It is not clear, however, what this poster's source it. I couldn't find it through a Google search.  A few others in the thread posted positive experiences with LDN, saying it improved their brain function and energy levels. (721).  People with Fibromyalgia or other inflammation conditions report the best success rate because LDN also works as an anti inflammatory.  

Side Effects

The main side effect reported was insomnia when first starting Naltrexone, which usually abates after a few weeks.  The most common advice is to start at a very lose dose - maybe 1 mg, and slowly work up to higher levels as sleep normalizes.  One poster took 3 months to work from 1.5 mg to 4.5. (72)  The same poster said that every time he titrated up to a new level, he experienced a Herx reaction as his immune system kicked in. (123)  Others also report start-up reactions. (34).  Still others report losing weight rapidly after starting LDN. (127).  Others said it helped them gain weight.

My Conclusion

Well, I still have about 1/2 of the thread left to read (I'll update this post as I go), but I skipped ahead to the last few pages.  Those who tried LDN and stopped due to side effects (mostly insomnia) or ineffectiveness, seem to outnumber those who benefited.  Then again, if I try it and it doesn't work at least I'll know. So I've decided to give it a try, at least long enough to see if it improves my NKC function in the next round of tests...  If LDN doesn't work, I may try Immunovir.

[3/22/12 Update: I've finished the reading the PR thread, and read a couple other LDN threads from other sites. In my estimate, LDN was reported as being effective for less than half of people who posted in these threads...but barely less than half.  If it even has a 40-45% success rate, it seems it would be worth a try for most PWMEs].

What Are the Best Probiotics?

*This is the next is a series of posts summarizing my research of common ME/CFS supplements and trying to determine the consensus best dosage, and best brands.  Keep in mind, I have no medical background or training, so the goal is just to sort out conflicting internet information and find a common nexus.

People take probiotics for a wide variety of reasons.  There are 2 or 3 reasons for PWMEs to take probiotics.  First, probiotics boost the immune system as a whole.  The gut is the immune systems' first line of defense, and probiotics promote a healthy gastrointestinal tract.  Second, since many PWME's have compromised immune systems, they also have candida overgrowth.  The proliferation of "good bacteria" in probiotics tends to crowd out the candida yeast.  Finally, probiotics help treat IBS and other GI tract problems that are common to PWMEs.  

What Is the Best Brand of Probiotics for PWME's?

Apparently, different strains of probiotics are effective for different symptoms.  Some are better for immunity, and others are better for IBS, etc.  I wasn't interested in trying to determine the best brand for each symptom.  Rather, I wanted to determine which brand was recommended most often for general treatment of a wide variety of symptoms--especially since PWME's usually don't just have one symptom.  For more specific information on buying probiotics, see this article.  

My method was to review as many probiotics rating sites and message boards to learn which brands were recommended the most often.  Is it possible that some of the rating sites are actually paid advertisements?  Yes, but I tried to use common sense to detect and avoid obvious paid ratings.  For instance, one brand was rated #1 on one website, and not mentioned in any other ratings.  On the other hand, if a brand consistently rated in the top 5-10 on most lists, but not always #1, I gave that brand more credit.  When you think about it, who would pay to have their product ranked #7 on a list of 10?  Also, at least one rating site is operated by a non-profit organization, so I gave that website more credence.  

One of the brands that I saw ranked consistently high was Ultimate Flora.  For example, it ranked 1st here, 2nd here (the non-profit rating), and 3rd here.  A few people in the Amazon reviews section said it gave them unpleasant side effects, but the same is true of just about any product reviewed on Amazon.  Two other brands that I frequently saw rated highly were Jarro Dophilus, and Nutraelle.   

[1/16/13 edit:  Ultimate Flora offers many different formulations, but I've learned to stay away from their "Critical Care - 50 Billion" formula, or anything with more than about 15 Billion cultures.  I crash from these extra-strong probiotics, and get major shortness of breath.  Others I've talked to said the same thing.  The right amount seems to be anywhere from 5 to 15 Billion.]

Interestingly, the three best selling brands on Amazon aren't necessarily the most highly rated.  The best selling brands, according to this article are: Align, Acidophilus Pearls, and Threelac. (5/12/12 update: A friend of mine strongly recommends Threelac, and says that some of his PWME friends also call it their favorite.)

Do Probiotics Need a Protective Coating?

Acidophilus Pearls are marketed as having a protective "pearl" coating that ensures the bacteria inside survive your harsh stomach acids long enough to get to where they're needed: your intestines.  But is this necessary, or merely a marketing strategy?  Honestly, I couldn't find the answer to this question.  None of the ratings sites that I reviewed mentioned this feature, but ME/CFS specialist Dr. Teitelbaum seems to lend credence to this claim.  Then again, many PWMEs are skeptical of Dr. Teitelbaum's recommendations.  So, if anyone has more information on this issue, please let me know in the comments section and I will update this post.

The Nuclear Option

I mentioned above that I was also going to review message boards for recommendations on probiotics.  Unfortunately, I didn't find much of a consensus on this topic.  Recommendations were all over the place, with one exception.  This thread from Phoenix Rising includes several endorsements for a super probiotic called VSL3.  It contains about 500 billion living bacteria per dose, which is about 10 to 50 times the typical dose of other brands.  It is also extremely expensive, at $86 per packet of 30.  

[4/25/12 update:  My negative experience with VSL3 is written about here.]

My Choice

Speaking for myself, I do think that probiotics are an important part of my treatment, especially with my high candida antibodies.  My doctor agrees.  I decided to try Ultimate Flora, but at the same time, I can't completely dismiss the "protective coating" claim made by Acidophilus Pearls.  Since most brands' dosage recommendation is 1-3 tablets per day, I decided to hedge my bets and take two different brands.  So I'm taking the pearls in the morning and Ultimate Flora at night.  I will, of course, update this if/when I can tell if it's working.  

[8/23/12 update:  I've been reading more and more about the importance of rotating brands of probiotcs, i.e., taking one type until the bottle runs out, then switching brands, and so forth.  The theory is that the natural state of the gut has many different species of good bacteria living in balance.  Since every brand of probiotics has different combinations of bacteria, if you stick to just one brand, you could get an unbalanced gut that is dominated by the few species of bacteria that happen to be in your chosen brand of probiotics.  Again, I don't know if this theory is true, but it makes logical sense to me.]  

[2/28/13 update:  Dr. Amy Yasko recommends rotating probiotics daily.  She recommends having 3-7 brands on hand and taking a different one every day.]

What is the best dosage & brand of potassium?

*This is the next is a series of posts summarizing my research of common ME/CFS supplements and trying to determine the consensus best dosage, maximum dosage, and best brands.  Keep in mind, I have no medical background or training, so the goal here is to sort out conflicting information and find a common nexus.


In my February 3rd post, I recounted how an apparent potassium deficiency caused me to crash, even though I had only just begun to dabble in a half-baked vitamin B12 protocol.  Notably, I began experiencing twitches all over my body, and later, pain in both thighs.  As I started taking potassium supplements, the  twitching slowly faded (although a small amount still remains).  Yet I was still experiencing a strange aching in both of my thighs, which can also be a sign of low potassium.  That aching remained even after I began supplementing potassium, and didn't go away until I switched forms of potassium: from potassium chelate to potassium citrate.


Based on my review of medical websites and ME/CFS message boards, this is what I've determined regarding the best dosage, maximum dosage, and best brand of potassium:

Maximum Dosage / Best Dosage

The recommended daily allowance (RDA) of potassium for adults is 4,700 mg.  Frankly, if you look at the amounts of potassium in even the highest potassium foods, it's amazing that any of us ever meets our RDA.  Apparently, the diets of our evolutionary ancestors contained about 4 times more potassium than those of modern man.  

Ask most people to name a food that's high in potassium, and almost everyone cites the banana.  And it's true, the banana is near the top of the list with about  500 mg.  But that means, if you ate nothing else, it would take over 9 bananas per day to meet your requirements.  

It seems that even with supplements, it is difficult to ingest enough potassium.  In the U.S., potassium is sold in tablets with a maximum of only 99 mg.  So, if you didn't get any potassium from food, it would take about 47.5 pills per day to meet the RDA - that's more than half of a typical bottle of 90 pills.  

So, all of the above tells me, when in doubt, err on the side of popping a few extra potassium pills.

On the other hand, it is slightly concerning that the side effects of overdose are basically the same as deficiency: irregular heartbeat, muscle weakness, confusion, numbness/tingling of the hands/feet, and chest pain.  So, without blood tests, there's really no way of knowing whether you're deficient or overdosing!  


But the consensus from this 8 page thread on Phoenix Rising seems to be that, as long as you have healthy kidneys, the risk of overdose is much less concerning than the risk of deficiency, because the kidneys usually filter excess potassium.  Put another way, it usually takes years of overdosing on potassium to trigger kidney failure, but a potassium deficiency can cause serious trouble (like heart failure) right away.  


I wasn't able to find any studies that listed a maximum daily dosage of potassium, but some sources said that any more than 1,800 mg in any one meal can tax the kidneys.  But if you only eat three means a day, you have to average over 1,500 mg per meal to meet your RDA.  So we're shooting for between 1,500 and 1,800 mg per meal?  Sheesh.  That seems to require some pretty careful planning.


I've also read that one should ingest about twice as much potassium as sodium, but who can keep track of it so precisely?  It seems to me it's simply better to increase potassium intake gradually until I no longer experience twitching or muscle pain. 


My conclusion from all this is that it is best to try to obtain most of my potassium from foods (yogurt, bananas, and plantains have about 500-800 mg per serving), and then to supplement another 200-300 mg per meal in pill form.  Theoretically, the rest of my RDA will be met with snacks and the occasional 99 mg pill without a meal.  If I still experience symptoms of deficiency, I'll gradually increase the after-meal doses to a maximum of about 600 mg.  

Best Brands / Forms

Potassium supplements come in all varieties: including potassium chloride, citrate, gluconate, bicarbonate, aspartate, chelate and orotate.  The chelate, aspartate and citrate seem to be the most common.  Personally, I found that the citrate form worked better for me.


Searching the internet far and wide, I wasn't able to find any consensus brand recommendations, but based on my experiencing with a staggering amount (two!) of brands, I'll say that Twin Labs Potassium Citrate works fairly well for me.  I'll update this if I find something that works better.  

How Much Is Too Much Vitamin C?

This is the second in a series of posts reviewing the benefits/risks of supplements commonly taken by people with ME.

When you hear about all of the benefits of vitamin C, especially for boosting the immune system, it makes you want to take as much as possible.  With vitamin C, I'm not too concerned about short term usage because it is so widely viewed as safe even at fairly high doses.  But some ME/CFS "gurus" recommend enormous amounts of vitamin C...up to 10,000mg per day!  It seems to me, this can't be safe for long term usage.   So, in this post, I'll try to determine the maximum safe dosage that can be take for extended periods of time--i.e. years at a time.

In the U.S., the recommended daily allowance (RDA) of vitamin C is 65mg/day for women and 75 mg for men.  (citation).  Most multivitamins contain anywhere from 5 to 10 times the RDA or more, so exceeding the RDA by even large amounts doesn't seem to be harmful.

But, I've seen at least one ME protocol that called for 4,000 mg a day, every day, and one that called for 10,000, for a limited period of time.

Here's a collection of quotes from different medical sites about the maximum safe doses for vitamin C:

"Some studies suggest that adults should take 250 - 500 mg twice a day for any benefit. Talk to your doctor before taking more than 1,000 mg of vitamin C on a daily basis." (Univ. of Mayland Med. Cntr.) 

"At least one study has suggested that very large vitamin C doses can cause rather than prevent oxidative damage to DNA in cells. The [US National Academy of Sciences] panel set a 2,000 milligram daily upper limit for vitamin C from a combination of food and supplements." (BBC article) 

"People can take up to about 1000mg safely."  (VitaminsDiary) 

"In 2000, the Food and Nutrition Board of the Institute of Medicine set a tolerable upper intake level for vitamin C at 2,000 mg per day. Taking more than 2,000 mg per day is likely to increase the risk of side effects." (Livestrong)

I could post more examples, but you'll have to take my word that the numbers 1,000 and 2,000 came up over and over.

My conclusion is to limit my intake to about 1,000 mg/day (1,333% of the RDA for men) on a normal day, and increase it to 1,500 only when I feel I may be getting sick....or, rather, more sick.

Pregnenolone Supplementation Risks/Benefits

Today, I'm starting a series of posts where I review each of my supplements to explore the risks, benefits, and doses of each. For each, I'll weigh the pros and cons and try to determine "the ME/CFS web world's" consensus on the topic. To be clear: I have no medical training -- I am simply summarizing what I've read on the internet. 

I'll start with hormone supplements since I've heard that messing with the endocrine system is fraught with peril.

First up: Pregnenolone.

Why Supplement Hormones for ME/CFS?  

The theory is that ME/CFS is a multi-system disorder, pointing to a defect in the hypothalimus.  The hypothalimus controls the endocrine system (hormones), immune system, nervous system, and mitochondrial energy.  Many ME treatment plans call for simultaneous support of all four systems as a way of, sort of, taking the stress off of the hypothalamus, allowing it to start functioning properly on its own again.

Personally, my pregnenolone levels were one of the lowest of all my hormone levels when tested in December.  The lab's reference range is 13 to 208 ng/dL.  (The reference range for males is 10-200). (Citation) Mine was a mere 23 - in the bottom 5%.

What is Pregnenolone? 

Pregnenolone is a steroid hormone the body makes as a precursor (the raw material) for other hormones, such as progesterone, DHEA, mineralocorticoids (which regulate electrolyte balance), corticosteroids (which influence inflammation and metabolism), estrogens, and testosterone. (Citation)  Basically, it's the essential building block of the other steroid hormones.

Risks / Concerns  

According the the American Cancer Society, "Very little is known about the safety of the supplements or the effects of long-term use. Some laboratory studies in cancer cells and animals have suggested that pregnenolone may stimulate the growth of hormone-responsive cancers such as prostate and breast cancer....High doses may cause aggressiveness, irritability, trouble sleeping...It also may...lower the levels of HDL, or "good," cholesterol, which could raise the risk of heart disease. Other possible side effects include acne, heart rhythm problems, liver problems, loss of hair from the scalp, and oily skin." (Citation)

I have also read that weening off of Pregnenolone supplementation can cause depression.

I have concerns about increasing any "steroid" as steroids tend to decrease immune response.  I am not certain, however, if this applies to "steroid hormones."  It turns out, this is a very complex question with no clear answers.  Thus far, only animal studies have been conducted on this topic, but those studies found that steroid hormones actually  boost immune response.

I also worry that the increased pregnenolone will convert to female hormones such as estrogen and progesterone.  Once inside my body, how do I know which hormones it will convert into?  On the other hand, this website claims that that concern is unfounded.

Possible benefits  

Pregnenolone is supposed to be a powerful memory aid and enhancer of cognitive function.  I can state from experience, this seems to be true.  Within a few days of beginning 100 mg dosages of pregnenolone, I started having exceptionally productive and clear headed days.  I felt very mentally alert.

Other sources making a strong case for the benefits of pregnenolone supplementation are here, and here.

For what it's worth, pregnenolone is sold as an over the counter supplement.  Anyone can take it in any amount, which tells me it's side effects can't be too harmful.  Right...?

Dosage 

Dosage recommendations are all over the map.  Because Pregnenolone is a supplement and does not require FDA approval, nobody has ever established dosage limitations. (Citation).  My doctor prescribed 100 mg/day.  Dr. Tietelbaum also recommends 100mg.  I've seen recommendation of as high as 200mg.

On the other hand, pregnenolone is typically sold in maximum quantities of 50mg, and several sources state that the correct dose is a mere 5 to 30mg, with frequent "holidays" to give your body time to start anew.  This doctor insists that the correct dosage is only 1-5mg, and that higher dosages are unsafe, but he doesn't provide any citations to research.  The bottom line is, there is no consensus.

Pregnenolone is supposed to be taken first thing in the morning, before a meal.

My Conclusion  

I remain uncomfortable with the idea of supplementing pregnenolone in the long term, especially at dosages of 100 mg.  But I will at least continue taking it until my next doctor's appointment in two months, and then talk to my doctor about reducing the dosage to something minimal, like 10mg, with regular "holidays."

If I continue to take it for more than, say, one year, I will begin regularly testing my levels of dihydrotestosterone, to ensure that it is does not enlarge the prostate.