• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Major relief - but temporary

Messages
29
I have had Fibro for 30 of my 50 years, and it just never lets up for long.

However, this past spring, at the end of May 2009, I noticed that I was not getting the calf cramps that are usually the first indication of a bad spell. I ride a bicycle "as much as possible", and I use that riding to gauge how I am doing.

Usually I can ride for 20 minutes or so at a gentle pace, but last spring I was going further and further, being carefull not to overdo it and put myself back in the recliner for forced rest.

At the end of May, I was working my way up to 15 kilometers - about an hour's ride, and not hurting like I expected. I added 2 kms. every few days and was tolerating it well - no calf cramps!! And over the summer, I worked my way up to riding 45 kms in 2.5 hours - Superman, and no cramps. I was in heaven all summer.

What was different? I had changed my diet, which resulted in noticeably different bowel movements, and it seems that something to do with my gut was making it possible to ride more... but we never know of course. The warm weather also makes a huge difference for me [and most of us, right?].

The diet changes included more "probiotics" from Colostrum capsules, and plain raw milk yogurt [with NO thickeners added]. Also, lots of "oil seeds" - sunflower seeds, flaxseed, pumpkin seed, hemp seed and poppy seed [no drugs in any of those, by the way]. Coconut milk, berries, bananas and raw eggs [about 6 a day], and some, but not much, fresh veggies such as carrots, broccolli, and peas, plus a little bit of oatmeal, rounded out my diet. That is about all I ate, blended together [except for the veggies] with a bit of honey and lots of cinnamon. Morning noon and night I would make the milkshake with yogurt, raw eggs, and berries/fruit.

Perhaps the yogurt was giving me calcium, and the probiotic "gut flora" was helping me use it? Calcium has something to do with muscle contractions, I can never remember if it contracts or releases them... and what is the other one - magnesium that does the other one? Sorry, brain fog... I know this stuff but I have to continuously re-learn it! Arrggg.

Alas, this past week it all came back after a 30 km. bike ride - calf cramps and continuous pains there, general achyness, plus terrible fatigue and headaches. We are still having warm weather. There is less sunlight hours now too - so Vitamin D could be part of it, but I am still getting many hours of direct sunshine most days.

That lasted one week, and by yesterday I was able to walk again without making the calves worse. Maybe I can ride the bike again in a few days... but the wonderfull summer of bike riding that hard is something I have not known for 30 years.
 

klutzo

Senior Member
Messages
564
Location
Florida
Calcium and Magnesium balance

Hi Noah,
Calcium contracts muscles. In reading about your diet, I notice a lack of many whole grains and a complete lack of green, leafy veggies, which is where we get magnesium to relax our muscles.

I've had Fibro for 24 years, and if forced to give up all of my many supplements except one, I would choose to keep magnesium. I consider it essential in Fibro, if only to protect the heart from valvular disease, like Mitral Valve Prolapse, which is so common in Fibro (75% of us have it).

If I were you, I would add some salads and a supplement of either Mg citrate or Mg malate. Avoid Mg oxide, as it is poorly absorbed and causes diarrhea.

Hope you are feeling better soon,

klutzo
 

Cort

Phoenix Rising Founder
Hey Noah congratulations on the temporary recovery. It's amazing what a change in diet can do (I copied your thread to the Lifestyle management forum so people there could check it out as well). I wonder if your diet just needs a bit more tweaking. Have you thought about taking out the oatmeal? That irritates my bowels. I wonder if removing items one at a time and seeing what happens would help? Good luck!
 

Jody

Senior Member
Messages
4,636
Location
Canada
Hi Noah Scape,

Welcome to the forums.

Let's hope your name turns out to be all wrong for you. :)

When reading your post I wondered about Vitamin D. I would experience a plummet every fall, right around this time of year. Didn't seem to matter that I was still out in the sun alot. But when I began taking Vitamin D 2 years ago, it made an enormous difference for me.

When I run out, if I can't get more right away, I begin to experience old symptoms again. Within a few days of getting back on the D, they begin to subside again. Might be worth looking into.
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Noah Scape,

as Klutzo mentioned, magnesium is your key.

When I run out of my calcium complete supplement (inc magnesium, vit d, horsetail & others) and can't get to the health food shop, I get severe calf/foot/ankle cramps within about 7-8 days.

If your magnesium intake is ok (& balanced correctly with calcium intake), try Schuessler Tissue Salts. The one called mag. phos. - I've forgotten the number on the list of 12 Tissue Salts in the range. Have it in my handbag for those occasional eye nerve twitches I get at work (when I'm overtired). Used it a few weeks ago for severe behind the knee cramps in the middle of the night. Seemed to take 3-4 sprays under the tongue instead of the usual 2 sprays though. At approx $9.65Aust, it is now part of my "can't do without" remedies.

And it's inexpensive - a blessing for those financially challenged.

Victoria

PS Just looked up what seems to be the best site for these Tissue salts and came to schuesslersalts.com as being the most informative.

Also discovered (in looking up Schuessler Tissue Salts) that they can be used for the soul. Interesting. I never knew that, but then I only started using them in the last 12 months.
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
if only to protect the heart from valvular disease, like Mitral Valve Prolapse, which is so common in Fibro (75% of us have it).

Tell me more about Mitral valve prolapse, Klutzo. A left Mitral valve blockage was one of the problems identified in my heart stress echocardiagram 2 weeks ago.

I knew there was heart arrythmia associated with CFS & FM, but was unaware of mitral valve prolapse as another heart issue with these syndromes.

When I was diagnosed with FM in 2006, I researched FM in extreme detail. In recent months, I can identify with many CFS symtoms related on this forum, so am wondering if there was more to my FM diagnosis than originally thought. As I have had numerous other health issues, I have probably mistakenly assumed many niggling little issues were just a matter of ageing, when in actual fact they should be added in to the picture of overall chronic illness.

Victoria
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Raw Eggs

raw eggs [about 6 a day]

Hi Noah,

Thanks for your detailed report. Your mentioning raw eggs caught my attention. I went to an introductory talk recently given by a nutritional consultant (who also does live blood microscopy). Anyway, he had been very ill for several years, and finally got well by monitoring his diet constantly. He at one point discovered that raw eggs were crucial for him.

When I read your account, I immediately remembered a favorite dessert my mother used to make called frozen lemon dessert. Anyway, it was chock full of whipping cream, sugar, and you guessed it, raw eggs. I used to wonder why I would feel so good after eating such a rich dessert. As I read your account, I intuitively felt it was the eggs.

So I got brave :) today, and added a couple of raw eggs to a grain dish. I really couldn't taste it at all, but was pleasantly surprised to find I didn't get my usual tiredness and nausea after eating it. And I had a pretty good rest of the day.

So, I'm going to be experimenting with this raw egg thing for a while. I usually need to hear something 2-3 times before it sinks in that I'm probably hearing it for a reason. Thanks for being #2. :)

Wayne
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
raw eggs--me 3

Hi Wayne--

Well make me #3 with raw eggs, which I eat every morning in my smoothie. My recipe contains: 1 cup goat yogurt, 2 raw eggs, a handful of frozen raspberries or blueberries and an apple--all blended together. Sometimes I add 2 tbs of lecithin powder, if I have some. It is very satisfying and filling.
I'm usually not hungry for 3-4 hours afterwards. :) And VERY Yummy!
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Raw eggs...and biotin???

I remember fondly drinking homemade eggnog about a 100 years ago (well, maybe 99 in CFS years) sometimes several times a week...so it sounds tempting.

I'm just wondering however if those of you who drink it, take a biotin supplement a meal or two away from the raw eggs?

Apparently there's some sort of anti-biotin compound in uncooked eggs that basically destroys/blocks biotin, which can be a very important supplement if one has a candida/fungal infection.

???

Dan
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hi Victoria

Noah Scape,

as Klutzo mentioned, magnesium is your key.

When I run out of my calcium complete supplement (inc magnesium, vit d, horsetail & others) and can't get to the health food shop, I get severe calf/foot/ankle cramps within about 7-8 days.

Hi Victoria,

I can never seem to tolerate much magnesium (supplemental) and so I wonder if it's because I'm not taking it with a good calcium mix, or if it's just because of the candida infection I have been dealing with. (Magnesium will make candida grow if it's not balanced with other minerals...)

So I'm wondering what's the brand name of the supplement you're taking? And hopefully it's available in the US?

Thanks!

Dan
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Hi Wayne--

Well make me #3 with raw eggs, which I eat every morning in my smoothie. My recipe contains: 1 cup goat yogurt, 2 raw eggs, a handful of frozen raspberries or blueberries and an apple--all blended together. Sometimes I add 2 tbs of lecithin powder, if I have some. It is very satisfying and filling.
I'm usually not hungry for 3-4 hours afterwards. :) And VERY Yummy!

Hey Dreambirdie, thanks much for the recipe. I'll definitely give it a try. It does sound yummy! :)

Wayne
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Anti-Biotin Compound in Egg White

I'm just wondering however if those of you who drink it, take a biotin supplement a meal or two away from the raw eggs?

Apparently there's some sort of anti-biotin compound in uncooked eggs that basically destroys/blocks biotin, which can be a very important supplement if one has a candida/fungal infection

Dan

Hi Dan,

Thanks for mentioning this. I just did a quick search and found a link to a good article by Dr. Mercola. Lots of good information there. I'll definitely keep it in mind. Dr. Mercola has some good suggestions on how to avoid biotin deficiency problems.

http://articles.mercola.com/sites/articles/archive/2005/02/09/raw-eggs.aspx

Wayne

Here's a copy and paste of the above article; looks like you have to sign up with your e-mail address to view this article on his website.

Important Update on Eating Raw Eggs
Posted by: Dr. Mercola
February 09 2005 | 39,868 views

By Dr. Joseph Mercola

Well folks, it is time for a major update on my recommendations for eating raw eggs. First, before I review the update, I want to dispel the common myth that raw eggs are bad for you. Most people fear them because of the risk for salmonella contamination. If you are still concerned about this please read my earlier article on raw eggs.

As part of that article I had stated that one should never consume raw egg white alone without the yolks, as a component in them called avidin binds to the B-vitamin biotin, potentially creating a deficiency in your body. However, my position shifted when one consumed whole raw eggs, both the yolk and the white together.

One of my raw food mentors convinced me that there was more than enough biotin in raw egg yolks to compensate for this problem, and I revised my previous recommendation to say that eating whole raw eggs would not pose a problem. This idea made sense to me as many wild animals consume raw eggs with no apparent problems.

However, recently a subscriber, Dr. Sharma, PhD, who is a biochemist with Bayer, contacted me about this issue. His investigation into the matter revealed that there is not enough biotin in an egg yolk to bind to all the avidin present in the raw whites. He found that 5.7 grams of biotin are required to neutralize all the avidin found in the raw whites of an average-sized egg. There are only about 25 micrograms -- or 25 millionths of a gram -- of biotin in an average egg yolk.

This is obviously not nearly enough to do the job. For this very reason, controlled diets of only raw egg whites lead to severe biotin deficiency.

New Egg White Recommendations

So is this the 'end' for the healthy consumption of raw egg whites? If you naturally tend to be biotin deficient or are pregnant then the answer is yes. However, raw egg whites (the white 'Yin' to the yolk's 'Yang') are part of the important combined nutritional balance of the egg.

The nutritional breakdown of the egg white is rather impressive. With 9.8 grams of varied protein, high riboflavin, magnesium and potassium, plus a whopping 25 percent the daily value of selenium, there are options to have your white and eat it too! If you decide to eat whole raw eggs, here are my suggested options:

1. My primary new recommendation, and the one I now follow, is to separate the yolks from the whites so you can cook the whites and consume the yolks uncooked, or raw. The white can be cooked and eaten on its own. Although cooking the white reduces the nutrient quality and perhaps increases allergic sensitivities to some, the avidin in the egg white breaks down when cooked to 100 degrees Centigrade, therefore releasing the biotin back for your absorption and virtually eliminating any risk of biotin deficiency.

2. Supplement with biotin. Safe and adequate recommendations for biotin use are about 30 to 300 micrograms per day in adults, and 10 to 30 micrograms per day for infants and children. Typical therapeutic doses are anywhere between 100 micrograms and 16 milligrams per day.

Studies have shown daily doses as high as 100 milligrams caused no adverse effects in otherwise healthy individuals. No studies to date have been done using intakes anywhere near 5.7 grams, but for those who are interested Allergy Research Group has a 5,000-mg biotin capsule, and, depending on your overall egg consumption, there's also an 8,000-mg capsule by Thorne. You would theoretically need about 5,000 mg of biotin per egg white to 'neutralize' the avidin in the average large egg.

You can also get limited amounts of biotin from your food. Animal livers are by far the richest sources.

3. Don't eat raw egg whites every day. Allow your biotin reserves to rebuild and eat only raw yolks or an alternative breakfast.

4. Eat yolks one day then whites the next. Remember that the biotin loss occurs in your digestive tract when the two molecules bond together before it is even absorbed. Eating the yolk and the white separately will greatly reduce the problem.

5. Keep your intestinal flora healthy. Probiotics should always be used. The GI track is long and has evolved different biotin strategies at different locations. A 1989 study showed quality biotin absorbed most effectively at the upper bowel. Keeping this region healthy and functioning optimally with plenty of good bacteria is a must to speed up the nutrient uptake of high-quality, small molecules such as biotin versus the 'lumbering' avidin at the start of digestion.

Additionally, a healthy lower bowel will produce limited biotin on its own and absorption may even be possible.

Detection and Treatment of a Biotin Deficiency

If you have been consuming whole raw eggs like I have, you may be concerned that you are now deficient in biotin. You need not worry too much as it takes months to years of severely deficient biotin intake to cause any noticeable symptoms, and these symptoms will clear up quickly if you stop eating raw egg whites and take a biotin supplement for a few weeks.

Common symptoms of biotin deficiency include:

* Brittle fingernails
* Thinning hair and/or loss of hair color
* A red, scaly rash around the eyes, nose and mouth

Less common symptoms of biotin deficiency include:

* Depression
* Lethargy
* Hallucinations
* Numbness and tingling in the hands and feet

A definitive diagnosis of biotin deficiency can be made if the symptoms in question resolve by supplementing with biotin, or by measuring and detecting a reduction in urinary excretion of biotin.

The Bottom Line

One of the problems with being on the leading edge of natural medicine is that occasionally one will veer off course a bit, but with time the direction always swings back to the truth. Many readers have appreciated my openness to modifying my views based on new information. This is in direct contrast to the conventional medical model that can be quite dogmatic and rigid about considering new data to modify their current beliefs.

When eating any part of an egg raw, I also recommend that you read my guidelines on how to ensure that you are consuming fresh high-quality eggs.


Related Links:

Raw Eggs for Your Health -- Major Update

Eggs Not a Likely Source of Salmonella Contamination

People are Buying More 'Designer' Eggs

Efforts Needed to Prevent Salmonella Infection from Eggs

Eggs Improve Bad Cholesterol

Eggs Can Prevent Breast Cancer
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Dan,

Im not an expert on the subject of brands & what's good & what's not, to be honest. I do know you should have a balance of calcium to magnesium when taking calcium - can't remember what the ratio is.

If I was home, I would look it up in one of my books, but as I am just about to leave work (on time for the first time in a couple of months), I can only suggest you get the correct ratio in a google search.

But having said that, my naturapathic chemist often suggests great amounts of magnesium to help me sleep (it didn't work). So I guess you can take additional magnesium (but perhaps it's the calcium that should have magnesium with it, not the other way around if you know what I mean).

I was told once that you should never take calcium on it's own. I believe the vit D in this supplement helps absorption. If you're concerned about absorption, you should also do weight bearing exercise to help the body take up the calcium.

I used to power walk (with my backpack) for an hour or so each weeknight, as well as 4-5 hours walking at the weekend back prior to 2005, but cannot do this now, so I wonder if my uptake has decreased. In fact, I rarely do more than the 15-20 min walk to work & the same back home - a full time job including the 1-2 hours after work on the internet has been very, very taxing in the last couple of months.

But I might add, very enjoyable & interesting since I joined this Forum. I really like the members on this site.

I have had many falls over the years - some serious, but have only ever fractured my left shoulder acromion - so I must be doing something right.

I take Nutra-Life Calcium Complete (with added Boron). New Zealand is the head office according to the internet. And they certainly do take orders, but I think you might be better off (financially), downloading the ingredients listed on the internet site & searching for a local equivalent.

I took 2 x 250grm daily up to the age of 45 (as well as calcium rich foods, as I rarely eat dairy) and then increased it to 3 tablets daily (which I've been taking for 10 years, am now 55+).

I try to include plenty of calcium rich foods as well (not dairy of course). I don't know how it rates on the good/bad scale, but I certainly have been 100% happy with it in the last 25 years. And when I had the bone density scan & it came back with 94% (instead of the usual 85% for middle aged women) I was ecstatic.

Good luck with the search - remember, don't take calcium as a single supplement (if there is such a thing).

Victoria

PS The heavens have opened up just now & it's pouring heavily with rain (which we need desperately in Victoria), so maybe I'n not meant to go home on time after all.

PPS We get the large 250 tabs size in Australia (only) & I buy it where I have an account (if I remember - on the 1st Sat on each month which is 15% off).

It Includes:

Calcium
Magnesium
Horsetail
Manganese
Zinc
Vit k1
Vit D3
Boron


PPPS the rain stopped in no time & the sun's out - this means I really should go home now.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Thanks Wayne and Victoria...

...for the info on biotin...and the calcium supplement!

Maybe I'll try that ol' eggnog again. Gotta get some real, fresh, organic eggs.

d.
 

Sunday

Senior Member
Messages
733
Oh, so maybe that weird pain I've been having behind my knees is back-of-the-knee cramps? Didn't know there was such an animal. I've been having them since I started the adb12, thanks for the tip, Victoria, maybe I just need to up my magnesium.

Btw, raw eggs were considered convalescent food par excellence at the beginning of the 20th century; eggnog was a convalescent food. A raw egg in a smoothie is unnoticeable except for the shiny smooth texture it gives. Homemade eggnog ain't bad either (you leave out the alcohol unfortunately but you can also leave out the sugar and use agave syrup or some other low-glycemic sweetener).
 

leelaplay

member
Messages
1,576
epsom salts for magnesium

Hi Victoria,

I can never seem to tolerate much magnesium (supplemental) and so I wonder if it's because I'm not taking it with a good calcium mix, or if it's just because of the candida infection I have been dealing with. (Magnesium will make candida grow if it's not balanced with other minerals...)
Dan

Hi Dan
I've taken to adding epsom salts to my bath (when I can take one) for my magnesium. I wonder if you could tolerate that better? In looking for the research that starting me doing this (that said that mag is absorbed as well through the skin as through oral supplementation) I instead found the following:

In fact, magnesium is so important in energy production, that, "Trials with magnesium have improved the well-being of patients (with chronic fatigue syndrome)" (Nippon-Rinsho 1992 Nov; 50(11):2679-83).

http://www.hquest.com/hq_handouts2.asp?VitaminName=Calcium/Magnesium

hadn't seen that before - wonder if there was any follow-up

As they're fairly expensive at the drugstore, I get a 55 lb/25 k bag from a farm supply store for about 1/5 the price