From Our Readers - Comments & Suggestions 11-12-08
November 11, 2008
Vitamin D Deficiency Was Key
I believe this is one of the critical causes of my coming down with CFS/ME. I was under incredible stress for 5 years and became totally exhausted. I came down with CFS, and 9 months into this illness, I finally got a doctor who ran the basic tests and found I have critically low D values - so bad that I was put on 5000 units daily along with high dose Iodine and a bunch of other supplements.
But the D was the key. It explained my overall weakness and thyroid crash. I really, really like my CFS doctor… He is the only doctor who has looked at my TSH [thyroid-stimulating hormone] levels, all my metabolites, etc. I just wish I had gone to him right away. Unfortunately I was going to a neurologist who never did anything, never even told me about B12, and by the time I got referred to the CFS doctor, I had permanent nerve damage due to coming down with shingles of the central nervous system, since my system was so compromised for 9 months.
So... TAKE YOUR D and Iodine! - frostymocha
Prints Articles to Read Later
Thank you for all the effort you put into your newsletters. I really find them very informative. When I click on the link for articles I simply print them up and read later; therefore I am not able to click on the evaluations. Sorry about that, I realize you would appreciate feedback. Thanks for your upbeat thoughts for the day, and survey results - I realize they are not very scientific, but nevertheless interesting! – Doreen
How I Got To Be 75 Percent Recovered
(From the ME/CFS Message Board)
I have been gone from this board for about a year, but in that time I have recovered significantly, and I wanted to share my positive news with you all! When I was at my sickest I remember that the posts where people came back with updates were always so inspiring, and I hope to contribute back in the same way now.
I have been very sick for about 10 years. About a year and a half ago, I was basically bed bound, my husband did everything around the house and even helped me bathe because I lacked the strength. I saw Dr. Enlander in NY City and he was very thorough and we tried Valcyte [antiviral drug], but ultimately that did not work for me. The Hepapressin shots [amino acid complex] he prescribed did help with energy, though. Last summer (a year ago +) three major things changed. And though I don't know which exactly contributed to what, I am going to list them all.
First, I was diagnosed with severe, severe POTS [also known as orthostatic hypotension]. I took medication for it for a bit, though that wasn't a solution for me. What helped the most was an increased intake in salt (1 tsp. in the AM and PM) and the strongest compression stockings available. This didn't help overnight, but eventually, because of the salt and the compression stockings I was able to sit up, to go for short walks, then longer walks, to clean a bit, to make dinner, and it just got better and better. I still do these things every day. If I am upright, I have the stockings on. They are a pain, but soooo worth it.
I also got tested for adrenal insufficiency with Dr. Andrew Neville, ND, of the Clymer Health Institute. It is very affordable (as these things go) and you can do the testing in your town and do a consultation over the phone. You don't have to travel to him. This was a big deal, since years before I had traveled very far to see Dr. Teitelbaum and ultimately did not improve at all from him.
Dr. Neville put me on Mil Adregen for adrenal insufficiency, and also Seriphos® for help sleeping. These helped tremendously! I had been on Klonopin® for years for sleep, then Ambien and still could never fall asleep. I now take no sleep aids save the Seriphos, and I fall asleep very easily by 10 p.m. and wake up at a normal hour (between 8 and 9). I know 10 or 11 hours of sleep is a lot for some people, but at my worst I was sleeping 14 hours a day and napping, so this is a great improvement.
Lastly, and I feel this one might be a bit controversial, but I want to include it because it was part of my regimen. I bought Ashok Gupta's Amygdala Retraining Technique DVDs. I heard about it... on this site. His system is based on retraining the stress centers of the brain, and calming down the nervous system. His DVDs come with a guarantee that you will see results within 6 months. I did find this to be the case, though for me it took a bit longer, like about 9 months to see the full effects of the program.
Besides these things I continued with my diet of low sugar, no white flour, and lots of fruits and vegetables.
Though it was a long road, I now consider myself about 75% recovered. I can drive, do errands, clean the house, exercise (which for me is going for walks - more than this I really can't tolerate). I have gone back to work tutoring part time, and I also have opened my own store on Etsy.com, where I sell handmade kids’ clothing and quilts. This has been perfect for me, for when I was still not that great I could sew for an hour and then rest for an hour. Now I sew and work on projects about 6 or 7 hours a day. I also babysit my friends’ children one day a week. I couldn't do this every day, as they have much more energy than me, but one day with a day to recover is fine.
...Though I don't come back often, I have to say that this site gave me all the information I needed to get better. I learned about the DVDs, about the Clymer Clinic, and about POTS on this site. So thank you from the bottom of my heart to everyone on here I have chatted with over the years. Good luck to you all! And take care of yourselves. – Frankie
This Is a Great Gift Idea!
One of my clients I see at the Senior Center has been telling me about the meals her son and daughter-in-law bring over once a month – a completed cooked homemade meal with enough leftovers for a couple of days. The son & DIL bring the meal once a month - this was their Christmas present last year. What a great gift! – Beadlady
Chi Gong Helps Me Relax, Gives Energy
I have just been on a detox week and learned how to do Chi Gong or Qi gong. This exercise is incredible, and because my mind is concentrating on the exercises, it really helps me relax. It helps different organs in the body also. It involves lots of stretching, deep breathing etc. You learn to draw in energy and even hold an 'energy ball' which I could actually feel in my hands! Sounds weird I know, but it's really there! It's great to close your eyes when doing the moves too.
I cannot get on with yoga and always end up aching after, but this form of exercise really helps me. After the exercises - I feel much more relaxed, happier, less stressed and more energy before the day begins. I would recommend anyone to look it up or even find a class or DVD.
I am now doing the warm up Chi Gong exercises every morning. - jofms
What Helped Me
It's a cliche...but a cliche is a cliche because it's true. Acceptance helped me. There are still times that I get really mad about my illness and limits. I have found that it's a waste of the limited energy I have to fight my body, to fight myself. Let go of guilt and anger... these are stress, and this illness can NOT handle stress because it wipes us out. Listen to your body. Even watching an intense TV show or movie can exhaust me, so I watch in pieces. And sleep when you can (if you work) or when you need to. Also find pride in yourself... even if it's a small step forward, it's still forward.
Also joining the chat... finding others who are where you are, helping newbies, talking to old-timers (those who have had the disease a long time) this helps SO much – Stillooking
The Candida Riddle
The question remains...Which came first? The chicken or the egg? One thing I have learned through all of my recent research on Candida, is that there is almost ALWAYS another underlying issue in the gut and digestive system. Everyone has Candida in their body and when your body is in balance, so is your yeast. So what causes the yeast to get angry and start wreaking havoc?
Well, for starters who here hasn't had at least a dose or two of antibiotics in their lifetime, and for us girls, those little prego stopper pills we popped as teens probably did us in! Many of us may have even inherited this angered yeast monster in the womb of our moms as research is now stating. The fact that the average American ingests over 50 lbs of sugar each year is also a strong indication that we took our yeast to the fat farm and let it go.
But what else could be causing this yeastie beast to take over? Here-in lies the chicken/egg riddle. One of my recent panel of tests came back with low HCL [stomach acid] and enzyme production. These are fundamentally necessary in order for proper digestion and vitamin/mineral absorption to occur in the stomach and intestines. These also help to create a hostile environment for pathogens and yes, say it with me – "yeast."
Hypochloridria (low hydrochloric acid creation) …. has been linked to many syndromes and diseases…. Studies show that 1 in 150 people in the USA have low HCL production. That's a staggering number and yet the traditional medical community does not recognize this as a problem. Some experts say that hypoHCL usually happens as a person ages but I know I've had this my whole adult life and I'm only 36. But was it the Candida that cursed my HCL, or did my HCL rent out its house to Candida and it never left?
Regardless of who came first, I am now armed with the knowledge to take care of them both. So for all of you out there doing the spit tests, you may have discovered you are among the yeasties and that's a start...but don't stop there. [Note: For info on the 'spit test', see Dr. Pellegrino's article on Candidiasis.] Chances are you have some other little devils causing a ruckus in your body and the yeast just wanted to come out and play as well.
Here are some good links for anyone interested in knowing more:
How to Explain ME/CFS…
A Letter for Family and Friends
….For four years I’ve been suffering with Myalgic Encephalomyelitis (M.E.) and for four years I’ve been trying to describe it to non-sufferers. I’ve compared it to a permanent flu, to a never-ending marathon, to insomnia with eventual pointless sleep. Now that it’s been part of me for so long, I realized how I could get the point across. I’ve not only been living with it, I’ve been battling with it. The only thing I can think to compare it to is living with an abusive and unpredictable partner… Note, the comparison I make here to abusive relationships is not to belittle anyone going through that experience. It's just my feelings and my perceptions to do with my illness.
• He tells me what I spend my day doing.
• He makes me cancel on friends, and cancel appointments.
• He decides whether I can read a book, or listen to music.
• He gives me false hope; lets me think that I can achieve an unprecedented step forward, then pulls me back down to his level.
• He tells me what I can eat and drink.
• He’s indecisive, sometimes he lets me do something then changes his mind midway.
• He plays tricks on me, and punishes me when I read his mood incorrectly.
• He makes me feel sick in the same day that he let me be happy.
• He controls how long I sleep, or if I’m allowed to sleep at all.
• He makes me feel weak, when inside I know I'm strong.
• He makes me feel pain for no reason.
• He makes me afraid of what will happen if I defy him.
• He knows I dream of leaving him, and reminds me that I’m foolish for doing so.
But what I don’t let him know, is that I will one day be free of him, and that his power over me will slowly diminish.
M.E. is a hugely complicated illness, and like abusive people, each form has its own tricks and tortures. It lets you appear capable and healthy but inside you’re constantly physically and mentally exhausted. Remember, next time you see a sufferer, that in energy terms, he or she may have just climbed a mountain. But all they’ve done is sat and smiled at you. That’s what M.E. does.
It fools the body into thinking that it’s just run a marathon, climbed a mountain, built a house, gone a week without sleep, but all it’s actually done is made lunch. When a sufferer tells you he or she is a little tired, they sometimes mean is they are so exhausted they could weep. It’s a trickster, that sleep won’t stop. Whether it’s got you in a weak or strong hold, it’s still powerful.
So please, when you see your sufferer friend, remember that they are fighting a constant battle with their oppressor. If you can’t imagine it yourself, don’t try. Just support them. They’ll need it. - Rach87
Another Look at the Paleo Diet
This subject has been discussed in the past but I was reminded of how important it can be for some of us when I had a physical this week. I have avoided all sugar, bread - even whole grain - and all "white stuff" for several months. I'm amazed at how much clearer my thinking is and how much better I sleep. (Anxiety is a different matter but that's not caused by the diet. I'm sure it would be worse if I wasn't sleeping better.)
When I asked my doctor about it, she said that some people do much better on the Paleolithic diet like our caveman and woman ancestors ate - no grain and no sugar. Hmm. Can it be this simple? Not a cure but certainly a step up for me.
You'll have to try it for yourself if you haven't. At first it seems impossible but only if you buy processed food. If you're like me, you'll soon have more energy - which you can use to prepare all your food!
I also want to caution you to be aware of the HABIT of fatigue. I find that I'm often wary of increasing my activity in order to avoid a crash, but in doing so, I'm not stretching myself. We must never stop trying if only just a gentle bit. - Marta
Trigeminal Neuralgia and ME/CFS Connection?
Q: Has anyone seen a connection between ME/CFS and trigeminal neuralgia? I was diagnosed with CFS in 1987 in San Diego. When I came to Florida, fibromyalgia was added to diagnosis. But pain in my face became unbearable and I was sent to pain clinic at Orange Hospital where a wonderful Dr. Amune said I was fighting two separate things, and sent me to Orlando to Dr. Fields who said it was Trigeminal Neuralgia and did Gamma Knife surgery twice, about a year apart.
But it came back again, and right now the only relief I get is from capsaicin and Darvocet. Capsaicin does more for me than the pain pills. I watch my organic diet, grow my own vegetables, do meditation, yoga, take multiple vitamins and minerals and recently added an enzyme that seems to be helping the lower half of body.
Has anyone else ever seen a connection between the two, other than that they are both nerve related? Needless to say, I have had numerous blood tests, MRIs, MRAs, catscans and about every test one can think of. Also have been taking B-12 injections for the past 4 months. Any help would be appreciated. By the way, I am 83 but still try to work thru the pain to take care of nice organic garden, not overweight and everything else checks out OK. – Margaret
A: While we don't know of a direct connection, there may be some biological weaknesses or deficiencies common to both. For example, research has shown that a number of trigeminal neuralgia patients receive pain relief from daily doses of B-12, and Japanese researchers have linked the methylcobalamin form of B-12 to the prevention and treatment of ME/CFS. However, there hasn't yet been sufficient research of either to definitively identify B-12 deficiency as a risk factor, let alone determine a connection between the two.
Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your personal healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
IBS or Celiac Disease?
|Posted by: greenthumb
Nov 12, 2008
I was diagnosed with fibromyalgia, costochondritis, IBS, post-herpetic neuralgia, and several other unknown pain syndromes in 1996. The ensuing IBS complaints were so unpredictable that I was having accidents in public places. Several years ago my 76 year old mother was diagnosed with Celiac disease after a battle with Wegener's Granulomatosis. She also has the skin blisters (dermatitis herpetiformus) that some CD patients have. Since all the women in my family have autoimmune problems, she suggested I go on the gluten-free diet. I went cold turkey--and miraculously found a total reversal of the IBS! This was never even considered by my doctors and now I want to get the word out for others who might really be suffering from the same thing.
My suggestion for ProHealth would be to include Celiac Disease in your health sites. I just wonder how many IBS patients really have Celiac disease--and suspect the number might be very large.
Some may feel the gluten-free diet is too restrictive, but there are many wonderful substitutes out there for wheat, rye, barley, triticale & spelt...like Quinoa (keen-wah), buckwheat (which is not wheat at all), potato flour, brown rice flour, tapioca flour, and many others. Gluten-Free Pantry sells wonderful cake, brownie, and cookie mixtures, as does Namaste brand so you really never "go without" goodies. I've even found lovely pre-made breads & biscuit mixes, something this southerner missed terribly.
If you suffer from IBS, might I suggest you go gluten-free for a while and see if it helps? If you have celiac disease, you'll never want to eat gluten again because you'll soooooo enjoy the absence of bloating, pain, straining, or rushing to the bathroom within a matter of days or weeks.