Re: Fibromyalgia, Ehlers-danlos Syndrome & Sleep disturbance

[Guest guest]

How long do you wait before your daughter takes the percocet? It should be

at least 12 hours or the LDN cannot do its job. Could you try for a month

getting her off the opiates and trying either acupuncture, massage, Advil,

valerian root, hops, scullcap, magnesium, reiki, any of these or a

combination thereof just to see what the LDN can do. Sorry not to answer any

of your questions but the situation with your daughter just stuck out in my

mind and perhaps LDN can work more effectively for her if she could wean off

the percocet. Best wishes.

[low dose naltrexone] Fibromyalgia, Ehlers-danlos Syndrome & Sleep

disturbance

> Hello all. I'm rarely at this group because I have health crises in

> all 3 family members including myself, and I'm a full time professor

> in Florida.

>

> My 17 yr old daughter has Ehlers-Danlos Syndrome hypermobility type,

> with symptoms quite similar to Fibromyalgia (sleep disturbance,

> temperature sensitivity, gastro, recurrent mild diseases, muscle

> pain, migraines, failure to heal from injuries-- plus joint pain and

> occasional dislocations, and vasovagal syncope, (or passing out from

> emotion & other causes).

>

> I convened an international research meeting on LDN at Rutgers the

> day before the NYAS public LDN meeting last year. But I've still

> been unable to get any collaboration in my efforts to conduct

> parallel case studies of 6+ fibromyalgia patients (with hypermobility

> history) and 6+ EDS patients (hypermobility type) who would start LDN

> and provide blood samples and send them to Dr. Sacerdote at Uni Milan

> (who's participating in the MS trial there, and who did all the blood

> research that shows all the immune disorders are low in beta-

> endorphin--and who has tested my daughter's blood and found it to be

> identically low in BE to her previous fibro patient study AND that in

> 5 weeks her blood BE level came up from 1/6 to 1/2 normal).

>

> What I have found since last June when I started my daughter on LDN

> was that she's perhaps 20% better, but still using some percacet for

> breakthrough pain and NO BETTER WHEN IT COMES TO DEEP, SLOWWAVE,

> RESTORATIVE SLEEP (as evidenced by an all night sleep study in

> November). So I've concluded that without restorative sleep, perhaps

> both fibro and EDS patients won't do as much better as they could if

> they were sleeping adequately.

>

> According to published research Lyrica, or Topomax might help many

> fibro people get restorative sleep--but not my daughter, because she

> was taking BOTH when she had her sleep study, and still NO DELTA

> sleep, no stage 3 or 4 sleep at all. Xyrem looks like the next bet,

> but it's $300/month. Delta sleep CDs might work, but there's almost

> no research (cuz no money in it for a pharmacompany).

>

> So what I'm asking for is

> 1. anybody who could help me in setting up case studies for EDS or

> fibro (meaning somebody who hasn't tried LDN yet, and a doctor who

> will monitor and help with blood sampling issues).

>

> 2. information on sleep studies that any of you have had while taking

> LDN (LDN probably increases alphawave sleep, which is NOT good for

> fibromyalgia, though if it's a constant increase, not episodic

> bursts, it would probably not cause problems not already present for

> fibro patients), especially those of you with fibro (or EDS, but I

> doubt anyone on this list has EDS, or knows that they have it--since

> actually some -- up to 30% -- diagnosed with fibro may actually also

> have EDS III, since only scattered experts normally diagnose that.

>

> 3. MS seems to be much better organized for LDN than fibro--and I

> need fibro people to join with the EDS people I'm in contact with

> (I'm the medical research guy in EDNatnalFoundation's " online

> information group " of two people, who are still being marginalized by

> the oldguard in the organization, similar to the situation in

> Lorenzo's Oil.) If we organize and collect the information on the

> relation between sleep quality and LDN-based improvement in fibro

> (and eventually EDS), we can get pilot clinical trials done in Italy

> for fibro and at NIH Baltimore for EDS III.

>

> I confess I don't regularly read on this group, because I'm too busy

> with my full time psychology professorship and my family's numerous

> health issues--I'm practically a " single mom " to my wife and daughter

> (tho that's an exaggeration of my role, and I'm NOT as overworked at

> home as real single moms are, I'm just overloaded despite the

> miserable job I do as a housewife/caretaker).

>

> I will check back in a few days for answers to my post--but I would

> appreciate it if any replies would be copied to my home email as well

> as the group: nphbrown@...

>

> Norman Brown, Ph.D., Ph.D.

> Assoc. Prof. Psychology & Humanities

> Embry-Riddle Aeronautical Univ.

> Daytona Beach, FL

> 386-226-6631 office (starting Wed new semester) 386-316-5259 cell,

> but I often can't answer, at least it will keep track of callers so I

> can call back.

>

>

>

>

>

>

>

[Guest guest]

First check your daughter for Candida/yeast-overgrowth at the link I'm providing

below. The link provides a very simple home test. Most Fibromyalgia victims

have candida. Below is also an alternative pain med my doctor told me about

that is all natural, no prescription needed. It's said it is a serious pain

med.

Do a search in your search engine for Brownwood Acres Tart Cherry Juice

Concentrate. It has a natural melatonin. Your daughter should drink a glass of

this cherry juice at night before bed. This cherry juice is great for

Rheumatoid arthritis, this cherry juice combined with 4.5mg LDN has cleared my

grandma's severe skin cancers to hardly noticeable in less that 1 year. It does

other things of good also. Would be good for your daughter's fibro also.

Combining Percocet and LDN may only be adding to your daughter's pain. Try to

go as much alternative/holistic/natural as possible.

Low Dose Naltrexone Forum - Check yourself for Candida(yeast overgrowth)...

http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1129136093

Low Dose Naltrexone Forum - My doc gave me name of natural/holistic pain med

http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1136524765