Disclaimer:  I am NOT a medical professional.   I am a CFS sufferer who is relaying some of his experiences and opinions.   None of the information on these pages is to be construed as medical advice. Please see a doctor for such advice.  For further disclaimer information, see Expanded Disclaimer.

 

Table Of Contents
 
Section I

  
Introduction
   Sleep Apnea
  
Vitamin D
   Vitamin D - Part II
   Parathyroid

Section II
   Getting Well
   Testing
   Dust Mites
   Seaonal Affective
      Disorder
   Adult ADD
  
Mycoplasma
      Infections
   Food Allergies &
      GI Problems
   Candida
   Diet
   Mercury fillings &        dental problems
   Guaifenesin
   Adrenal
      
Insufficiency
   Nutrasweet
   Chiari's Syndrome
   Wilson's Thyroid
      Syndrome
 
Section III
   Finding a Physician
   Seabiscuit author
      Laura Hillenbrand
   
Supplements
   Support Groups
   Other Success
      Stories
 
Section IV - Links
 

Site Map
 

 

Section I
Vitamin D Recovery - Part I
Over the past few months I have had excellent results with plain old vitamin D and Magnesium.

(New!  9/14/2004

 

(Please see my Introduction page for important warnings.) 

Introduction 
What NOT to do 
Where does vitamin D come from? 
My Experience - Cycle 1 - Learning Important Lessons 
Cycle 2 - Better 
Cycle 3 - Getting Closer! 
My Symptoms in Detail 
My Vitamin D Hypersensitivity 
The Different Kinds of Vitamin D 
How Much is Safe? 
How Much To Take? 
"Stoss" therapy 
Adverse Reactions 
Severe Deficiency 
Insufficiency 
Vitamin D, your Bones and Teeth 
Vitamin D and Immunity 
Vitamin D and Fibromyalgia 
Conclusion

Introduction

A few months ago, I wrote some pages on vitamin D.  Today I am reporting that I am having excellent results with this forgotten vitamin.

A few months ago, I went to my doctor with a list of my symptoms:

Very Painful Sciatica (diagnosed as due to spinal stenosis)
Acid reflux
Mucous in the stools
Brain-fog
Sleepiness
Skin sores
Prostate problems
High Blood pressure

Since I started taking vitamin D and magnesium, the sciatica has completely gone.  The brain-fog is almost gone.  The prostate problems and sleepiness are greatly improved.  My dentist tells me that the health of my teeth and gums has improved dramatically.  The skin sores, reflux and the mucous in the stool have shown some improvement.  Only the high blood pressure has not yet shown signs of improvement.

This has taken me six months, but I've learned several important lessons in that time.  If I were to start today, I believe that I could have had the same results in much less time.

It is important to note that when I started, my blood tests showed that my vitamin D levels were not low according to modern standards.  But read on and you will discover that modern people have only about half the vitamin D levels that our ancestors did.

What NOT to do

If you go to the health food store and ask for vitamin D, you will almost certainly be directed to a row of supplements containing fish oil.  Don't use these.  I used these, but I eventually found that I was allergic to them.  Every time I raised dose, I found that my fatigue increased quite a bit.  When I stopped taking it I felt better in about a day.  Fish oil also contains high doses of vitamin A.  There is considerable evidence that this can be harmful, and little evidence that high doses of vitamin A are beneficial.

I recommend that if you take vitamin D, that you use purified vitamin D2 or D3.  I'll get into the different types of vitamin D supplements later.

Where does vitamin D come from?

When the ultraviolet light in sunlight strikes the skin, it creates vitamin D.  Throughout most of human history this light was the primary source of vitamin D.  People are surprised to learn that very few foods contain any significant amount of vitamin D.  The only significant natural source is fish.  A number of foods are artificially fortified with vitamin D including milk and some cereals.

Our ancestors didn't have fortified milk and in many areas ate little fish.  Our ancestors were farmers or hunter/gatherers and spent a lot of time in the sun.  Studies show that people that spend a lot of time in the sun can get ten times the amount of vitamin D we get today.  The amount of active vitamin D they had in their blood was about double what the average person has today.

My Experience - Cycle 1 - Learning Important Lessons

This cycle was in many ways a failure, but I learned a lot from it.  I would later learn that my two mistakes were taking vitamin D from fish oil and raising my dose too quickly.

The first time I took vitamin D, I took 2,000 units per day from fish oil capsules.  I had greater fatigue, but I stuck with it.  After four weeks, the fatigue got worse and I had to stop.  It took about three weeks for the side effects to wear off,  but after that, the fatigue was definitely better than when I had started.  I knew I was on the right track, but I still had to figure out the right way to do this.

Cycle 2 - Better

On my second cycle, I still took vitamin D from fish oil capsules, but I raised the dose more slowly.  I started by raising the dose every four days. I also added 800 mg of magnesium.

I saw some of my symptoms improve dramatically on this cycle.  My sciatica slowly improved.  I could walk farther with less pain.  It took six weeks, but my sciatica slowly improved until it was completely gone.  Walking had been very painful, but was now pain-free.

My prostate problems also improved.  I had been literally running from my car to the bathroom after my drive home every day, but this was no longer the case.  This got worse again when I stopped taking vitamin D for a few week, but improved almost immediately when I started my third cycle of vitamin D.  My prostate is still not 100%, but it is far better than when I started.

I raised the dose until I reached 2,000 units.  At that point, I became nauseous and had to lower it.

After about a month, I suddenly had a lot of anxiety.  Even after discontinuing the fish oil capsules, it took three weeks for this to go away.  This was a miserable experience!  If you have claustrophobia or something like it, imagine having an attack of claustrophobia that lasts for three weeks!

I believe that if I had avoided fish oil and raised the dose slowly, I would not have had the anxiety, but I have since asked my doctor for anxiety medication in case this happens again.

Cycle 3 - Getting Closer

I learned some very important lessons on the first two cycles.  I purchased vitamin D3 allergy caps.  These are purified vitamin D without fish oil or vitamin A.  I started my third cycle at 400 units and then raised it by 400 units every four to ten days.

I went to 2800 units.  Again I found this was too high and had to lower it.

I am now at 2000 units per day and have been at this level for over a month.  I have found that the dose must be raised VERY slowly.  I am now raising it by 400 units per MONTH.

My sciatica is long gone.  My brain-fog is improved.  My prostate problems came back when I stopped taking vitamin D, but are now greatly improved again.  My skin sores and reflux are better.

My Symptoms in Detail

Several months ago I had very painful sciatica that began last year.  I had been through physical therapy and it seemed to get better only to come back.  During the second cycle of vitamin D, it started to slowly improve.  After about six weeks, it was gone!  I was pain-free.   This subsided when I was taking about 1,200 to 1,600 units of vitamin D.

The brain-fog did not improve much on the first two cycles.  I blame this on the fish oil capsules I was taking.  On the third cycle, I saw huge improvement in brain-fog.  I'm less sleepy too.  I have less pressure in the temples and popping in the ears.  I do still have to take naps some times.  My brain-fog started to improve at 1,200 units on the third cycle.

Several months ago I had very bad prostate problems.  I would urinate before leaving work, drive home, and still have to run to my bathroom.  My prostate problems are now far better, but not 100%.  Most nights I still have to get up once during the night.

Several months ago I had a great deal of mucous in my stools.  I was moving my bowels two or three times a day and then going back to the bathroom two or three times to clean up the mucous.  I am now moving my bowels only once and going back to the bathroom to clean up mucous only once on most days.  Wheat still makes it worse, and I must avoid it.  The problem isn't gone, but getting better.

I had some skin sores that did not itch, but were very red and ugly looking.  One was on my eyelid.  These are still there, but improved.

A few months ago, my dentist told me my gums were in terrible shape despite the fact that I had been carefully brushing, using a Sonic Care bush and using mouthwash.  She compared my gums to those of patients with diabetes.  Recently, I went back and my dentist told me my gums had improved dramatically.  I told her it was all due to vitamin D.  I had not done anything else differently.

My Vitamin D Hypersensitivity

I don't mean to imply that this has been easy.  If getting better were easy and risk-free, everyone would do it!  Every time I've raised the dose I've felt feverish and often had headaches.  My thermometer says that I have not running a fever, but I felt like I have.  Most of the time this has lasted only one or two days, but it has lasted as long as eight days.

At times I wondered if I had not made a big mistake, but in the end I always felt better than I did before.  After feeling better, I then spent several days at the new dose before raising it again.

According to the papers I've read, some people are sensitive to the dose and experience effects like this when they change their dose.  It is unusual, but not unheard of.

The Different Kinds of Vitamin D

There are actually several variations of vitamin D.  When ultraviolet light strikes the skin, it creates vitamin D3 (cholecalciferol).  This is also found in animal products, especially fish liver.  Vitamin D2 (ergocalciferol) is found in yeast.

Both of these are converted in the body over a period of weeks into circulating vitamin D.  If you start taking vitamin D every day, it will take about six weeks for the circulating vitamin D to reach its peak.

Circulating vitamin D then enters the cells where it is finally converted to active vitamin D.

What To Take

Vitamin D3 is often sold in fish oil capsules.  This is what you will find in most health food stores.  I highly recommend against these.  They can be quite allergenic and contain high levels of vitamin A that can be harmful.

Vitamin D3 is also sold in a purified form.  TwinLab makes Vitamin D Allergy Caps in 400 unit capsules.  Allergy Research Group makes capsules that contain 2,000 units.

Personally, I've found that starting at 2,000 units is too much for me.  I am vitamin D sensitive.  When I started off with 2,000 units, I felt ill with fever and vomiting for an entire day, but it may be fine for others that are not vitamin D sensitive.

Vitamin D2 comes from yeast that has been irradiated with ultraviolet light.  Some people call this "artificial" vitamin D.  Studies show that it takes about 50% more vitamin D2 to have the same effect as D3.  Some web-sites say this means that D2 is inferior to D3.  This is not true.  I have not tried vitamin D2, but it may be a worthwhile alternative for people that are unable to tolerate D3.

Make sure that the bottle specifies what kind of vitamin D your supplement has.  That way, if one does not work, you can try the other.  Many supplements don't say what kind of vitamin D they contain.

How Much is Safe?

The government says adults should take no more than 2,000 units per day and infants should take no more than 1,000 units per day.  Dr. Reinhold Vieth has written a study showing evidence that 10,000 units per day is safe for adults, but Dr. Vieth's views are controversial.  According to Dr. Vieth dangerous levels of calcium and vitamin D have been observed only in people taking more than 40,000 units per day for many months.

Excess vitamin D can cause high levels of calcium in the blood.  If you decide to exceed 2,000 units per day, see your doctor to have your blood vitamin D and calcium levels checked periodically.

Never exceed the government limit of 1,000 units of vitamin D per day in infants or 2,000 units per day in children.

How Much To Take?

Dr. Vieth makes a good case that the optimal dose for adults is 4,000 units.  This is enough to cause the parathyroid to virtually shut down.

I saw significant improvement at 2,000 units or less!  If you decide not to exceed the government limits, you may still see significant improvement.

"Stoss" therapy

Stoss therapy is popular in Europe.  Several people have already written to me about it.  Each month the patient is given one very large dose of vitamin D.  This ranges from 50,000 to 300,000 units.

I have been able to find very little information on this.  I do know that if I vary my dose by just 400 units per day, I may feel feverish.  For me, taking 50,000 units once every 30 days would not seem wise.

Dr. Vieth mentions stoss therapy very briefly and shows that because it causes a sudden spike in vitamin D blood levels, it is not as safe as taking small doses everyday.

Adverse Reactions

If you take more than 40,000 units per day for many months, you can have a very serious adverse reaction.

Adverse reactions can happen at smaller doses.  The most common cause is hyperparathyroidism.  (Do not confuse the parathyroid with the thyroid.  These are two different glands.)  If you have an adverse reaction, ask to be tested for this.  (See my parathyroid page.)

Sensitivity to low doses can also be signs of sarcoidosis, tuberculosis, or lymphoma. These can be diagnosed and treated by your doctor.

Sarcoidosis is especially interesting.  It is often treated with steroids by mainstream doctors.  At this site, there is a new and experimental treatment for the condition.

Sometimes adverse reactions cannot be explained.  I had an adverse reaction.  I tested negative for parathyroid problems and found the best way to handle this was simply to raise the dose slowly.

Severe Deficiency

It is well known that severe deficiency can cause major fatigue and other problems.  It can even cause rickets!  Doctors rarely look for this.  Your levels of vitamin D can be tested and mainstream doctors can treat you.

But this page is not about severe deficiency.  It is about vitamin D insufficiency.

Insufficiency

The day before I started taking vitamin D, I had blood drawn for a vitamin D test.  I was surprised when I then got the test result back and it showed that my level of vitamin D was about 70 nmol/L, which is slightly above the median for the western population.

So, why did I get a major benefit from taking vitamin D when my levels seemed to be OK to begin with?  My levels were OK only when compared to other modern westerners.  There is considerable evidence that our ancestors received ten times as much vitamin D as we do and had twice the level of vitamin D in their blood than we do today.  As hunter/gatherers and farmers, they spent a lot of time in the sun.

Vitamin D, your Bones and Teeth

Vitamin D helps the body absorb calcium.  Without it, you can eat all the calcium you want, but your body will not be able to digest it.  Vitamin D has been found to be involved in at least 30 processes throughout the body.

If your body does not have sufficient calcium, it will start to produce parathyroid hormone (PTH).  PTH causes your body to take calcium and phosphorous from your bones.  Insufficient vitamin D will weaken both your bones and teeth.

Unless your ancestors were from areas far from the equator such as Scandinavia or Alaska, their vitamin D and calcium levels usually did not drop low enough to cause their bodies to make PTH.  Today, most people produce fairly large amounts of PTH all the time.  Producing PTH was meant to occur only in unusual situations.  It was not meant to occur constantly.

Vitamin D and Immunity

There is a second critical function that vitamin D performs.  It helps regulate the immune system, preventing autoimmune illness.

Almost everyone seems to claim these days that their supplement strengthens the immune system.  Well, studies have shown that vitamin D provides major protection against breast, colon, and prostate cancer and multiple sclerosis:

Study Shows Vitamin D Reduces Risk of Colon Cancer - Veterans Administration

Vitamin D and Breast Cancer Risk

Prostate cancer risk and exposure to ultraviolet radiation: further support for the protective effect of sunlight.

The Vitamin D Council Cancer Page

Vitamin D Supplementation In The Fight Against Multiple Sclerosis

In the United States, all of these conditions increase as we go farther north.  There is strong evidence this is related to sunlight exposure and vitamin D levels.  

Vitamin D and Fibromyalgia

Several papers have speculated that vitamin D may be connected to fibromyalgia.   I do not have fibromyalgia, but several things in my own experience and research support the idea.

Fibromyalgia, like chronic fatigue, and multiple sclerosis is widely suspected of being an autoimmune illness.  Studies have shown dramatic improvement in MS patients using vitamin D.

Low levels of vitamin D can greatly affect levels of phosphates in the body.  According to Dr. Paul St. Amand, fibromyalgia is related to abnormal retention of phosphates and including calcium phosphate.  It is well established that low levels of vitamin D cause the body to make parathyroid hormone (PTH).  PTH causes calcium  phosphate to be extracted from the bones.

When I increase the level of vitamin D, I've noticed that for a few days, I may have increased fatigue including stomach upset.  I've also discovered that 900 to 1,500 mg of guaifenesin, the same drug that many people use to treat fibromyalgia, will often settle my stomach in about 20 minutes.

Conclusion

If you take vitamin D, do not take fish oil or fish oil capsules.  These can be very allergenic and contain high levels of unneeded vitamin A.

Carefully catalogue your symptoms before you start and keep a daily journal.  Some symptoms may get better as you raise the dose.  Others may take weeks or more to show improvement.  Still others may not show complete improvement until you reach several thousand units and stay there for six weeks or more.

Understand the risks of taking more than 2,000 units per day and consider getting tested by a doctor if you do.  The government limit is 2,000 units per day, but one prominent doctor in the field, Dr. Reinhold Vieth, believes that up to 10,000 units is safe.  He also believes that it is important to take at least 4,000 units per day.  We do know that people that take more than 40,000 units for several months have come down with very serious toxic reactions.

Many people will simply be able to start taking 2,000 units per day without adverse effects.  If you have an adverse reaction to this dose such as fever or nausea, get tested for hyperparathyroidism.  Also consider that you may have sarcoidosis, tuberculosis, or lymphoma.  (The odds of these are small, but worth considering.)

Many people will have adverse reactions to 2,000 units or less and not have any of these conditions.  It may help to start with 400 units per day and raise this dose by 400 units every four to ten days.  Always err on the side of caution.

I found that I was often feverish when I raised my dose.  This could last up to ten days, but I always felt better after that.

Again, the symptoms of vitamin D toxicity include nausea and vomiting.  See the Merck Manual for more information.  If this occurs, discontinue taking vitamin D immediately.  If it continues, see a doctor right away.

It can take six or seven weeks for vitamin D blood levels to peak once you start taking it.  If you have an adverse reaction, be careful about "toughing it out".  It can take weeks for levels to come down after you discontinue it.

Risks Involved: The government believes that doses of 2,000 units or less are safe.  Some people may feel ill due to vitamin D hypersensitivity.  If you do have an adverse reaction to doses of 2,000 units or less, see your doctor to be tested for parathyroid problems.

The risks of taking doses of over 10,000 units for long periods of time are considerable.  Note that the government believes that doses of over 2,000 units is risky.  There is evidence that this is too conservative, but there is little doubt that taking over 10,000 units is risky.  See the article by Dr. Vieth.

Effectiveness: This can result in significant improvement.
Difficulty: Minimal.
Doctor Needed:

It is not necessary to see a doctor to take vitamin D doses of 2,000 IU or less, but this dose may not be enough.  To take higher doses, you will need a doctor.  The doctor may order regular blood tests for vitamin D toxicity.

If you have an adverse reaction to a relatively low dose of vitamin D, get tested for hyperparathyroidism.  

Cost: Vitamins and possibly doctor's fees.

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Last modified: 5/9/2004