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Hi Jen. Just happened upon this website while searching for CPAP info (I use an auto-pap and have for years - it is my very, very good friend!) I have read/skimmed your posts and, after reading your list of symptoms thought I'd suggest that you check out some info on pituitary issues. Don't know if your endos have checked that or not. I, too, had many, many, many years of undiagnosed symptoms, went to many, many doctors to no avail, and FINALLY (with God's intervention I'm sure!!) found out the major problem. Yeah! I actually wasn't a hypochondriac (as a lot of people were thinking We know our bodies the best thank you very much. I have learned that we are in charge of our own health and have become a "researcher" by necessity myself. Thank goodness for websites like this where we can all compare notes.

I was diagnosed with acromegaly, and one of the specific symptoms of that happens to be sleep apnea. I've learned that 1 in 5 people have a pituitary problem, but only a few people per MILLION are diagnosed each year! Here's the website and a list of symptoms of pituitary problems:

http://www.pituitary.org

Symptoms of a Pituitary Disorder

* Headaches
* Depression
* Mood/Emotion Swings
* Anger
* Loss of Memory
* Loss of Sleep
* Sexual Dysfunction
* Lethargy
* Weakness in Limbs
* High Blood Pressure
* Unusual Hair Growth
* Eating Disorders
o Anorexia
o Obesity
o Bulimia
o Weight Gain
* Diabetes
* Infertility
* Impotence
* Irregular Menses
* Lactating

Here's some info [i]specific to acromegaly[/i]:

Symptoms and signs may include:

* Soft tissue thickening of the palms of the hands and soles of the feet
* Enlargement of hands (ring size), feet (shoe size) and head (hat size)
* Enlargement of forehead (frontal bossing) and jaw (prognathism) with pronounced under- or overbite,
spreading teeth, and enlarging tongue
* Carpal tunnel syndrome
* Arthritis
* Oily skin and excessive sweating
* Tiredness, fatigue, depression
* Impotence, loss of libido
* Interrupted menstrual cycle (amenorrhea)
* Lactation (galactorrhea)
* Heart disease and heart enlargement (cardiomegaly and left ventricular hypertrophy)
* Hypertension
* Diabetes mellitus
* Sleep apnea
* Loss of vision
* Headaches
* Colon polyps and colon cancer

(Acne can be a part of it too). Hope this helps if you are still looking for answers God bless ...

TOVI! Welcome to the board! I need to pick your brains!!!

I have a coworker who is, well, poorly educated. She's just been diagnosed with Diabetes, and only yesterday told me she has leaky gut, too, and can't eat most meats. After I lectured her on going on the caveman diet and eating only meat...

Can you send me some info on Leaky Gut? Links, anything. Feel free to PM me with it. I need to pass it on to her, and cross my fingers and hope she's getting adequate medical care. She's on the verge of losing her job too, so her life just SUCKS right now.

THANK YOU!!!!!
Barbara

Horselady,

Hey, thanks for that information. From what I have read, fibromyalgia/chronic fatigue syndrome are linked to a hypothalamus/pituitary/adrenal axis disfunction and that is what I have attributed some of the pituitary issues to since my official diagnosis is chronic fatigue. I will do more research into this pituitary thing. Maybe this will help. I know that the endo has done some tests in the past that were supposed to be checking my pituitary--this was actually about a year ago--about 6 monhts before I got REALLY sick. I was only mildly ill at the time. I thought I had PCOS and hypothyroid at the time. But they determined I was "normal" then.

Maybe I should just go back to the last endo and really pick her brains and demand more testing!

Thanks again,
Jen

Hey Jen, did ypu catch this in a link in BB's thread?

Getting to the Root of Glutathione Depletion? – The Methylation Proctocol

Treatment Study of Methylation Cycle Support. Neil Nathan and Richard Van Konynenburg.

Rich Von Konynenburg has asserted for about ten years that the depletion of glutathione – the master detoxifier in the body – is at the heart of chronic fatigue syndrome (ME/CFS). As he dug deeper into the subject he realized that his original idea – providing patients with glutathione enhancing supplements - was too limited and he began to look 'upstream' at more fundamental factors. Two years ago the glutathione problem had turned into a ‘methylation cycle’ problem. The methylation cycle controls how much glutathione is available to the cell.

In 2007 Rich created, using Dr. Yasko’s complex methylation program for autism as a foundation, the ‘Simple Methylation Treatment Program’ for ME/CFS . One of the benefits of the program was that it utilized relatively inexpensive supplements. Dr. Neil Nathan MD liked what he saw and agreed to use 30 of his patients to test out Rich’s theory and this lead to the first study examining the efficacy of this protocol in this disease.

The study found significant gains in many measures of the methlyation panel including glutathione levels. They didn’t reach normal levels but they were approaching them and the authors suggested that continued treatment may bring them up to normal. Seventy-one percent of patients reported ‘improvement’. They assessed themselves on a scale of one to ten; average energy level was up 50% (from 4-6), sleep up 20% (4.6-6.4), pain better by 30% (4.3-5., etc. Ninety-five percent reported reduced symptoms with an average number of symptoms falling by half.

The average patient wasn’t healthy (six on a scale of ten) with average start levels at out about 4 or 5 but they did receive significant benefits.

Dig Deeper! The Simple Methylation Protocol Explained

Dig Deeper! The Theory Behind the Protocol

Dig Deeper! The Treatment Methylation Study Paper

Conclusion: A small, preliminary, study but it suggested that the simple methylation protocol - which has the distinct advantage of being inexpenisve - may be helpful

Here's the link http://aboutmecfs.org/Conf/IACFS09Treatments.aspx little more than halfway down the page.

Thanks Barbara. I learned the most about leaky gut from my alt doctor. Leaky gut is still considered an "alt" diagnosis. I'm on a list of supplements -- "a leaky gut protocol" and I stay off gluten and casein plus food I'm intolerant to. This is slowly healing my leaky gut. The first few months I found it horrible, but once I started feeling better, I didn't feel the urge to "cheat" because cheating made me feel so lousy. This sounds similar to what people report here about CPAP.
http://www.leakygut.co.uk/
http://www.drweil.com/drw/u/QAA361058/w ... y-gut.html
http://www.mdheal.org/leakygut.htm

The main thing I'd suggest is that she get tested for food intolerances. If she can't afford to get tested, she can try eating a very restricted diet then adding one food at a time and seeing if she gets a reaction. The problem is food reactions can take up to three days to manifest depending on the speed of your digestive system so she can only add one food every three days. http://www.drweil.com/drw/u/QAA400354/B ... rance.html I think this is great if things aren't that bad. For myself, things were too severe, so I took the ALCAT test.
Good luck to your friend!

T

Thank you Tovi!!! I'm passing this info on to her!!!

Best,
Barbara

Muse-Inc wrote:Hey Jen, did ypu catch this in a link in BB's thread?

Getting to the Root of Glutathione Depletion? – The Methylation Proctocol

Treatment Study of Methylation Cycle Support. Neil Nathan and Richard Van Konynenburg.

Rich Von Konynenburg has asserted for about ten years that the depletion of glutathione – the master detoxifier in the body – is at the heart of chronic fatigue syndrome (ME/CFS). As he dug deeper into the subject he realized that his original idea – providing patients with glutathione enhancing supplements - was too limited and he began to look 'upstream' at more fundamental factors. Two years ago the glutathione problem had turned into a ‘methylation cycle’ problem. The methylation cycle controls how much glutathione is available to the cell.

In 2007 Rich created, using Dr. Yasko’s complex methylation program for autism as a foundation, the ‘Simple Methylation Treatment Program’ for ME/CFS . One of the benefits of the program was that it utilized relatively inexpensive supplements. Dr. Neil Nathan MD liked what he saw and agreed to use 30 of his patients to test out Rich’s theory and this lead to the first study examining the efficacy of this protocol in this disease.

The study found significant gains in many measures of the methlyation panel including glutathione levels. They didn’t reach normal levels but they were approaching them and the authors suggested that continued treatment may bring them up to normal. Seventy-one percent of patients reported ‘improvement’. They assessed themselves on a scale of one to ten; average energy level was up 50% (from 4-6), sleep up 20% (4.6-6.4), pain better by 30% (4.3-5., etc. Ninety-five percent reported reduced symptoms with an average number of symptoms falling by half.

The average patient wasn’t healthy (six on a scale of ten) with average start levels at out about 4 or 5 but they did receive significant benefits.

Dig Deeper! The Simple Methylation Protocol Explained

Dig Deeper! The Theory Behind the Protocol

Dig Deeper! The Treatment Methylation Study Paper

Conclusion: A small, preliminary, study but it suggested that the simple methylation protocol - which has the distinct advantage of being inexpenisve - may be helpful

Here's the link http://aboutmecfs.org/Conf/IACFS09Treatments.aspx little more than halfway down the page.

Muse-Inc,

I'm not sure which thread you are referring to? But this is the same protocol that I used that returned my energy and stamina--and greatly improved my mood! I have posted a link to this protocol somewhere on cpaptalk somewhere, maybe not in this thread. This work by Von Konynenburg was the first I had ever heard of polymorphisms in the genes that code for the enzyme that breaks down folate. That is why I started taking folinic acid and 5-MTHF which within 4 days returned my energy and stamina and I only keep getting better. I still have some of my symptoms including excess hair, cold hands and feet, joint pain and stiffness (worse in the morning and with rest) and muscle cramps. I'm hoping my other forays into vitamins and herbs will eventually cure these problems as well.

Yes, I think Von Konynenburg is a freaking genius and I love him! I ought to email him and tell him so! I can handle some of these aches and pains and weird symptoms as long as I have the energy and stamina to get thru a day!

Thank you SO MUCH for thinking of me!

Tovi wrote:Thanks Barbara. I learned the most about leaky gut from my alt doctor. Leaky gut is still considered an "alt" diagnosis. I'm on a list of supplements -- "a leaky gut protocol" and I stay off gluten and casein plus food I'm intolerant to. This is slowly healing my leaky gut. The first few months I found it horrible, but once I started feeling better, I didn't feel the urge to "cheat" because cheating made me feel so lousy. This sounds similar to what people report here about CPAP.
http://www.leakygut.co.uk/
http://www.drweil.com/drw/u/QAA361058/w ... y-gut.html
http://www.mdheal.org/leakygut.htm

The main thing I'd suggest is that she get tested for food intolerances. If she can't afford to get tested, she can try eating a very restricted diet then adding one food at a time and seeing if she gets a reaction. The problem is food reactions can take up to three days to manifest depending on the speed of your digestive system so she can only add one food every three days. http://www.drweil.com/drw/u/QAA400354/B ... rance.html I think this is great if things aren't that bad. For myself, things were too severe, so I took the ALCAT test.
Good luck to your friend!

T

Tovi,

I've never heard of the ALCAT test and will have to do some research into it! I am considering doing NAET for food allergies/intolerances. Its been so long since I have eaten cheese, I don't even miss it anymore--but I do miss yoghurt and I also miss pineapple!

Have you tried NAET?

jen

All you you with leaky gut need to investigate taking L-Glutamine, it's an amino acid, a natural component of proteins. It is highly recommended for healing gut tissue.

Muse-Inc wrote:All you you with leaky gut need to investigate taking L-Glutamine, it's an amino acid, a natural component of proteins. It is highly recommended for healing gut tissue.

All said to help carb addicts wean themselves off starchy carbs ... which happen to infalme leaky gut.

DS, so you're saying, if my friend can heal the inflammation of the Leaky Gut with this L-G stuff, she can eat meat again? She sorely misses her BBQ....

Cheers,
B.

Babette wrote:DS, so you're saying, if my friend can heal the inflammation of the Leaky Gut with this L-G stuff, she can eat meat again? She sorely misses her BBQ....

Cheers,
B.

Nope. I think it would take a bit more than just a single supplement. The tao of a healthy gut is healthy food. The gut is the first and primary defense of the body's immune system. The gut also has, by a very large margin, the body's population of non human cells (bacteria some of which are good for us and others not). Bacteria have to eat too so that what you eat they eat. The trick is to eat the foods that the good bacteria in your gut like to eat (like fiber from green veggies) and stay away from the foods that the bad inflammatory bacteria eat (ie. grains).

Aside from food, Vitamin D seems to always pop up (and also anti-inflammatory omega-3s) as a deficiency associated with many chronic aliments of the human body.

As far as I know, BBQ does not cause leaky gut ... the BBQ sauce, perhaps, but not the meat.

I'm taking 1mg l-glutamine at night before bed.
I'm also taking probiotic pearls and several other supplements to help heal my gut.

Associated with leaky gut is also gut dysbosis which is an imbalance of the bacteria in your gut. If you have gut dysbosis and don't treat it and you start taking supplements, you can feed the unhealthy bacteria and start feeling worse. Your alt doctor can do a test to see what particular imbalances you have.

I haven't heard of Vitamin D helping the gut, but a lot of Americans are Vitamin D deficient.

Jen, I haven't tried NAET.

Cheers,
T

I looked up L-glutamine in my various books last night to see what they said. Dr. Teitelbaum--my good ol' standby--says the same thing about gut healing. It is also a precurser along with 2 other amino acids--glycine and cysteine in the manufacturer of the very important antioxidant/scavenger/detoxifier--glutathione. Something we all need our bodies to make very badly, but is often low in patients of chronic fatigue/fibromyalgia.

Also, I am reading now The Magnesium Miracle by Carolyn Dean. Very good book! With my background in biology, farming, ag, horticulture and gardening I feel uniquely qualified to say, yes, she is right in her premise that Modern Agriculture continues to strip the soil more and more barren each year because they don't replenish the soil with anything but a few substances. Plants need more than nitrogen, phosporus and potassium to thrive and produce abundantly nutrient-rich foods.

You will read in old-time gardening books from back when organic gardening wasn't a label, but a way of life, (before pesticides became so commonplace)--people used to use epsom salts in gardening quite commonly--magnesium sulfate. You don't hear much about this anymore!

If you are reading this thread, you would benefit from reading this book ($10 on amazon). It will make you mad, but it will also help you to move forward in health. If you have suffered from fatigue, migraines, muscle cramps, chronic pain, PMS, diabetes, bowel problems--you owe it to yourself to at minimum check it out at the library. Magnesium is in every single cell of your body--critical in hundreds of enzymatic reactions. I have been reading from many different sources that magnesium deficiency is RAMPANT in the US, and I already knew I had many of the symptoms--and was taking a magnesium supplement and have been for years--but I didn't realize it was NOT ENOUGH!

In my opinion the best magnesium supplement on the market is made by jigsaw. http://www.jigsawhealth.com/ I'm not affiliated, just a satisfied customer.

Other ways to replenish include eating nuts, seeds, beans and greens. Also bathe with epsom or dead sea salts. Also you can use magnesium "oil" on your skin or magnesium containing lotions--because you can absorb it through your skin. That is why soaking in epsom salts is so relaxing! And people who used to go to hot springs for their health--I'm guessing there is magnesium in that water to. I'm guessing even the seaweed wraps and mudbaths people take at modern spas also help the body absorb magnesium. That is just a guess on the last few things, but I'd bet money I'm right.

The federal government was already worried about mineral depletion of the soil in 1936 when records show they talked about it in congress. Seriously?

You all owe it to yourself to look into this. I am praying that this becomes common knowledge in the future. And I'm hopeful that this could be the second key to my health puzzle. Folic acid and magnesium. Currently, that is what I think it is. It could take months of supplementation to overcome my mag deficiency. I'll let you know in months if that is what it is.

jen

I went to the Mg website and it seemed a little misleading to me regarding diarrhea issues.

As I understand it, only the magnesium oxide causes diarrhea. There is also magnesium citrate, asparate, and orate (amino acid compounds on which Mg is bound to) which are fairly bio-available and do not cause diarrhea in high doses. Not sure if those are more bio-available than magnesium malate offered on the web site but the citrate and asparate versions are considerably less expensive.

I'll have to get a copy of Dean's book and check it out.