Dom's FMS/CFIDS Newsletter
JUMBO ISSUE!
August 1, 2011
A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.
FIBRO STORY CFIDS STORY INSOMNIA STORY HELPFUL THINGS I USE PREVIOUS NEWSLETTER ARCHIVES
Topics in this issue:
1. READERS WRITE
2. COMBINING DRUGS
3. SHOULD PEOPLE WITH FMS/CFIDS GET THE SHINGLES VACCINE?
4. HOW TO MAKE NUTRITIOUS CHICKEN STOCK
5. BRAIN INJURY & FIBROMYALGIA
6. THE ENCOURAGING WORD
7. STATIN DRUGS INCREASE RISK OF DIABETES
8. CONTROLLING HOUSEHOLD MOLD
9. ARE YOU HIGHLY SENSITIVE?
10. TOOTHPICK THEORY - EXPLAINING FIBROMYALGIA
11. EARTHLY LOSS
40. HOW A PHYSICIAN CURED HER SON'S AUTISM
41. UPDATE FROM DOM
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1. READERS WRITE
"I thank God for stumbling across your website as I have symptoms which are similar to what us described in your website www.fms-help.com/fibro.htm."
"I very much appreciate the information you send."
"I feel comforted that I can identify with what you went through. I am also a type A personality who is very driven and had everything going for my career. Now I have to take a breather from the delibitating pain. I trust that God will lead me to something greater through this journey and may Jesus be glorified through my healing. Very glad that your website www.fms-help.com is Christian-centered."
"After reading your page www.fms-help.com/fibro.htm, I feel a sense of relief knowing I'm not alone."
"I want to do more for the Lord but need to rest because of pain."
"I totally understand and appreciate finding your story."
"Lots of great health info on your website www.fms-help.com. Thank you!"
"I can't wait to get your newsletters - for me it's like Christmas!"
2. COMBINING DRUGS
http://www.mediguard.org/alerts/alert/1493.html - Snippet: "New Study: Combining Commonly Used Drugs Linked to a Greater Risk of Death and Declining Brain Function - This study specifically looked at prescription and over-the-counter medicines that are known to affect a chemical in the brain called acetylcholine. Acetylcholine is important for passing messages from nerve cell to nerve cell, but many common drugs interfere with it as a side effect. Medicines that block acetylcholine activity have the potential to cause side effects such as constipation, drowsiness, confusion, memory problems, difficulty thinking or focusing, dry mouth, blurred vision, dizziness, and slowing of urination. Examples of medicines with anticholinergic activity and a potential to cause these side effects include antidepressants such as amitriptyline (Elavil), imipramine (Tofranil) and clomipramine (Anafranil), tranquilizers such as chlorpromazine and trifluoperazine, bladder medication such as oxybutynin (Ditropan) and antihistamines such as chlorpheniramine (Chlor-Trimeton) and diphenhydramine (Benadryl)."
3. SHOULD PEOPLE WITH FMS/CFIDS GET THE SHINGLES VACCINE?
Reader 1--
"I had a physical last week and my doctor offered me the shingles vaccine. Since March, the FDA has approved its use for anyone over 50. Even though it is expensive and is not covered by insurance, I decided to get it because I knew that I could not handle the horrible pain of shingles in addition to the pain I have now. I had no side effects from the shot."
Reader 2--
Reader 3--
"http://www.ncbi.nlm.nih.gov/pubmed/3014472 - here is a link to an abstract back in 1985 when they were doing the baseline research to see if shingles (herpes zoster) vaccination should be able to work or not, etc. Basically we need to have both (1) antibodies circulating (usually from getting chickenpox as a kid) and (2) pre-established cellular immunity in a line of our white cells (also from chickenpox) in order to be sure to not get shingles later in life. The vaccine in the article worked well on some folk, weakly on others, and not at all in some. Interesting mix of people who actually got shingles just out of the blue and healthy people who got the vaccine. Some got cellular immunity but some only got the antibody part of the response. This answers some of my questions about how repeated attacks are even possible, but I don't know if it sways me toward getting vaccinated. My thinking: there is no evident reason to think the vaccine would work any better than having an attack in regards to future immunity.
http://www.ncbi.nlm.nih.gov/pubmed/21224457 - A recent paper showing that shingles incidence was reduced by almost exactly 50% following vaccination of immuno-competent people aged 60 and over. So that is sure not great. I would expect an even lower chance of the vaccine actually being protective in an immuno-incompetent type such as we are. But the study does not address that directly.
http://www.ncbi.nlm.nih.gov/pubmed/20416263 - here is the abstract for safety, tolerability, and immunogenicity of zoster vaccine in subjects with a history of herpes zoster.
http://www.ncbi.nlm.nih.gov/pubmed/20473790 - a U.S. abstract, so presumably the same
vaccine available to you - does work on cellular immunity, but it is expected that the vaccine works
the same way a shingles attack would to re-prime one's system. So that
says (to me) don't bother with the vax.
But the CDC
recommends it even to those with previous attacks: http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5705a1.htm. The summary is interesting, but the whole
article is a really good (that is: more than any sane person would want!) once
over of what shingles is all about.
In theory having had a recent bout of shingles should provide the same level of immunity as getting the vax. That said, I have had 3 cases of shingles over the last 10 years or so - the first was absolutely HIDEOUS and the next two attacks (all on different nerve locations weirdly enough) were much less severe. So that suggests that I did get some immunization effect from the first bout; but, of course, maybe not. Could have been some other immunologic factors had me weak enough for the danged shingles to show up, but strong enough to avoid a major meltdown. AND, again weirdly enough, I have not had a single cold sore since that first shingles outbreak. I don't think that is likely to be coincidence as I had been plagued by them since childhood. I figure you would need to have the acyclovir well out of your system for the vax to work. That drug made me horribly ill, and I was so glad when my 7 or 10 days of the drug was over. I certainly would take it again if I had another attack of shingles, though. I checked around about whether the medical community had any consensus of thought about the vaccine being useful or not for those who have recently had shingles. No clear picture was found, but I will search again. I recall the vax manufacturer's drug info said it was not contraindicated, but didn't say whether it would likely be actually useful. This will have been more than two years ago, give or take.
"I am finding a
scattered number of reports of healthy people (some older, some children)
breaking out in shingles after vaccine. Some of these have been
tested and found to be actually caused by the attenuated live virus in the
vaccine (rather than caused by what is referred to as wild type virus).
Adult shingles vax seems to be using the same attenuated strain as is used for
kids' chickenpox vac, but the adult dose is about 14 times
stronger. You and I are both too old to have had the childhood
vax, so it is reasonably assumed that our shingles was a reactivation of our own
childhood infections. Or we could have been exposed to a kid with
chickenpox without knowing it - church, supermarket, the usual suspects.
In your case it could also have been you being exposed to a child who had
recently been vaccinated. In any event, we both had bad
cases which made us very sick, indicating that our immunity to the virus was
low. My subsequent cases were much more tolerable and I have no
pain left over from them (recurrent post-herpetic pain from the first attack
though) so I do figure I regained partial immunity by means of my first
attack. You likely have as well. Therefore my conclusion at
this point is that I won't get the vax, and I would not recommend that you do
either."
Comment from Dr. Teitelbaum (Fibro & Fatigue Center)--
http://www.sharecare.com/question/fibromyalgia-patient-shingles-vaccine - "Dr. Jacob Teitelbaum answered: I am not quick to offer shingles vaccine in chronic fatigue syndrome (CFS). I am quick, at the first sign of a painful one-sided rash (can't cross the body vertical midline), which is suggestive of early shingles, to treat with Valtrex. If begun early, it usually aborts the attack very quickly (adding B12 shots can also decrease the risk of persistent nerve pain)."
FROM DOM: What's strange is that although I never had chicken pox, I had a (first and HORRIBLE) attack of shingles 2 years ago. It felt like a blowtorch burning my body non-stop for 2 weeks! It was one of the worst things I've ever been through!!!!! The pain never let up. I took Lortabs, etc. from the doc, but another doc told me later to use Lyrica for that. I also had some PHN (post herpetic neuralgia) after that attack, because I didn't go to the doctor for 3 days (not knowing what this rash was), so it was almost too late to start on the antivirals at that point. I have heard of people in nursing homes committing suicide due to having severe PHN, the pain is so bad! (Oh, those poor souls!) Since then, shingles tried to come back twice, but I stopped it almost immediately with massive doses of Acyclovir (antiviral). In fact, I take 400 mg of Acyclovir daily to prevent cold sores (which I used to get one after the other in my adulthood www.fms-help.com/coldsores.htm), and also I take it to prevent shingles. 1 capsule of Lyrica helps the PHN when it tries to flare up. A complete list of things I use to stay functional is at www.fms-help.com/what.htm (these are helpful and actually necessary for my survival in this world!)
4. HOW TO MAKE NUTRITIOUS CHICKEN STOCK
5. BRAIN INJURY & FIBROMYALGIA
From a reader--
"http://www.mindyourheadcoop.org/blog/?p=1141
- You may already know about this
FROM DOM: See these pages on my site about the brain and fibromyalgia: www.fms-help.com/brain.htm and www.fms-help.com/brainbased.htm.
6. THE ENCOURAGING WORD
"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.”
Philippians 4:6 NLT
7. STATIN DRUGS INCREASE RISK OF DIABETES
8. CONTROLLING HOUSEHOLD MOLD
From a reader--
"Interesting article, I never would have thought about house plants!- http://www.everydayhealth.com/allergies/mold.aspx?xid=aol_eh-allergy_14-_20110718&aolcat=ABO&icid=main|htmlws-main-n|dl11|sec3_lnk3|219069."
FROM DOM: Read my devastating mold story at www.fms-help.com/mold.htm. And yes, the house plants had to go, as well as the aquarium.
9. ARE YOU HIGHLY SENSITIVE?
http://www.psychologytoday.com/blog/attending-the-undervalued-self/201003/time-find-out-are-you-highly-sensitive-0 - Find out if you are highly sensitive.
FROM DOM: Use the google box at the end of this page to find references in my past newsletters to two books: "The Highly Sensitive Person" and "Too Loud, Too Bright, Too Fast, Too Tight."
10. TOOTHPICK THEORY - EXPLAINING FIBROMYALGIA
From a reader--
"So many relate to the Spoon Theory www.fms-help.com/spoon.htm. Well, for those of us with Fibro, God gave me the Toothpick Theory: http://atouchofintegrity.blogspot.com/2011/07/toothpick-theory.html."
12. TRAMADOL
From a reader--
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