MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
A lyme-literate acupuncturist at Lymefriends told me that she'd gotten a lot of relief from insomnia/adrenal issues by following the sleep protocols from the book From Fatigued To Fantastic. Some reviews of it at Lymenet are very negative. I think it might be based partially on the edition- the current edition talks about Lyme as one of the many infections that can trigger chronic fatigue syndromes and fibromyalgia. The author makes suggestions for relatively long-term antibiotic therapy and describes many tests for pathogens as being very poor indicators, and recommends clinical diagnosis of underlying infections.
I was reading the book in a bookstore the other day, trying to get a sense of the thyroid support he recommends- and it was so good that I actually bought a copy (I rarely buy ANYTHING these days due to not working)
I was totally shocked at how good that book was- at least according to my own understanding of what happens when we have adrenal/thyroid dysfunction and issues with insufficiently deep sleep.
He's pharmaceutical-heavy (but that's probably necessary and fibro patients are treated that way often by many doctors). He says what LymeMD and many others say (ti's backed up by many studies)- some fibromyalgia pain is caused by insufficiently deep sleep. I think LymeMD mentioned in a blog post that it could be related to central apnea or sleep apnea caused by floppy soft palate like we sometimes get with Lyme. The author of the Fatigued To Fantastic book says that using a combo of lower doses of sleep meds is better than using a higher dose of any one sleep med- which is interesting.
He also talks about coagulation disorders triggered by infections (which some Lyme doctors think cause poor blood flow in the brain, and therefore brainfog), and is also a fan of heparin for dealing with them- though he says he doesn't use it first-line because of potential dangerous side effects.
I've been thinking for quite a while about trying heparin- my holistic LLMD says there are some major possible side effects with the injectible version- but I seem to remember talking with someone on Lymenet about their speculation that it was the heparin in their PICC line protocol that was making a difference for them with brainfog.
-------------------- Symptom Free!!! Thank you all!!!!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Curcumin holds a lot of promise regarding blood circulation and viscosity. Allicin, too.
Yes, the book has many positive points.
I mostly have concern with drugs for sleep -- I was sorry to see him speak to sleep meds as such an answer. I think all sleep meds are so hard on the liver that it causes more problems in the long run. I wish he had explored some of the natural sleep methods.
I don't think it is necessary to be "pharmaceutical heavy" regarding non-infection stuff. The fact that so many FM patients are handed sleeping pills like candy likely complicates the liver's ability to detox the drugs that are necessary and the toxins from lyme.
Some of the sleep drugs are also toxic to the ears and that is never a good thing.
You can look inside this book and read customer reviews here:
Book: Ototoxic Drugs Exposed: Prescription Drugs and Other Chemicals That Can (and Do) Damage Our Ears
- by Neil G. Bauman -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for the review. I've had that book on my list of books to buy because Scott (the better health guy) talked so highly of it.
For sleep I use melatonin (will only work if you are defecient), nutramedix babuna and nutramedix amantilla combined. The other supplement that has made the biggest difference in my ability to stay asleep is metagenics actifolate (the active form of folic acid).
I also wear a machine for sleep apnea. The machine is hard to sleep with but it does help me get more REM sleep. Oh yeah, the other thing that helps a lot is keeping inflammation/pain down, otherwise sleeping is a lot harder.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Carol in PA had me buy the book a couple of years ago...but of course I haven't read it yet. I'll have to do that. Goodness knows I need it! Thanks for the reminder!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I also think the information in FFTF is good, but I wish he would emphasize the infections as the causative factor. When I first read it, I discounted that whole section, because I didn't think I'd ever want to get all those labs and take all those antibiotics (antivirals, etc.) HA!
(I know, I know. Ethically, he should emphasize Lyme, but that would kill his income stream. I think his clinics have led many Lyme patients astray.)
I tried the SHINE protocol, and it nearly killed me. I started with Sleep and chose Ambien, because it had worked for me previously when I'd used it on occasion.
Nightly Ambien nearly killed me. No drug reaction, or, God forbid, sleep driving. It worked for about 5 days, then my body adapted, and I went 2 weeks without sleeping at all. I thought my adrenals might just quit entirely.
By a fortuitous twist of fate, I discovered the book when I had already committed to my first appt with a LL doc. Within six weeks, I was treating for Lyme. I could have messed around with FFTF for years and never gone anywhere.
Just my two cents. No offense to anyone who found relief from the book, the clinics, or Ambien.
I did discover D-ribose through FFTF, and, ironically, that saved my sleep. Totally redeemed the book and the Ambien debacle.
BTW, his website is www.endfatigue.com. All the info in the book is on the site.
posted
Well, I am a fan of this book as well. I think there is a lot of good information in there. I went to a FFC doctor and she was finally the one who tested me for lyme after 6 months of not getting better.
I will love her for it always!!!
Not only does he address lyme, but a lot of other issues, such as PCOS, yeast, mold, but he really cares about us getting better.
I think he places a lot of emphasis on people getting what the body naturally needs, Sleep, Nutrition, Exercise, Reduction in stress, just lots of good information in there!!!
Posts: 893 | From Florida | Registered: Dec 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I went to the FFC. It helped in some ways but I wasted alot of money there. I heard an interview with Titlebaum (spelling?). He sounds very knowledgeable. I can emphasize with his background but the supplements & the Center experience left me with something to be desired.
There's probably alot of info about hormonal axis that I've already studied that many Lyme patients haven't researched. I probably take it for granted that it's a "known". There's alot of cross-over between the 2 illnesses.
You may want to look into Dr. Robert Bennett's work, too.
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