Hi - Need reassurance? I've tried every other disease! :P

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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Sun Aug 12, 2012 12:41 pm

SO glad to hear that you have some relief! healthy food = super smart, that's great news too!

re tablets vs liquid, there are supplemental forms of magnesium that you can get as a powder to dissolve in water, too. one example i'm thinking of is magnesium citrate, the product name is 'natural calm' and there are lots of different flavour choices. my preferred form of magnesium for absorption purposes is magnesium glycinate.

so do you have all these nutrients on your list for testing now?:

serum magnesium,
serum zinc,
serum copper,
serum ferritin,
serum 25(OH)vitamind3, and
serum b12.

hope you can get them all!

i'll work on some asthma nutrition info later :) ttfn!
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Sun Aug 12, 2012 4:54 pm

awesome news, glad you got some relief! send your hubby this way if he is interested in the nutrition spin on the asthma :) fyi re asthmatic kids

Serum levels of antioxidant vitamins (alpha tocopherol, beta carotene, and ascorbic acid) in children with bronchial asthma.
http://www.ncbi.nlm.nih.gov/pubmed/10731863
Abstract
We determined serum levels of alpha tocopherol, beta carotene, and ascorbic acid and lipid peroxidation products (thiobarbituric acid reactive substances--TBARS) in 14 children during an asthma attack and remission. Twelve healthy children served as controls. All antioxidant vitamins were significantly lower in asthmatics at remission compared to controls. Comparison of attack and remission periods in asthmatic patients failed to reveal any difference except in beta carotene (p = 0.03). The levels of all three vitamins correlated very significantly with each other (r = 0.89-0.95). TBARS levels were significantly higher at asthma attack compared to remission (p = 0.001). No correlation was observed between the antioxidant vitamins and lipid peroxidation products. This study shows that antioxidant vitamins are decreased in sera of asthmatic patients even during the asymptomatic periods of the disease, and that this decrease is not totally dependent on the increased oxidative stress as reflected by lipid peroxidation products. The role of antioxidant vitamins in prevention and/or treatment of asthma remains to be determined.


i'll find more if you like :) ttfn
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby midnight » Tue Aug 14, 2012 10:21 am

Dr was an idiot and thought nothing was connected on my list and refused to test me for anything at all but has sent me off to the Rheumatology department. So I have to wait for that appointment.

Not really sure what they will do as I am ANA negative...but there you go!

PS thank you for even more supplement info!
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Tue Aug 14, 2012 4:30 pm

oh geez. nice doc :S i suppose the relief from the epsom salts bath was 'coincidence'. that happened to my friend who had athletic exertion/stress/poor diet nutrient depletion. at least her doc agreed to the tests, but when she went on a diet and supplement regimen and got better, it was all coincidence as far as the doc was concerned.

i'll link you up to that science-y post i did for mirry for sure. hopefully the specialist will agree to get you some tests if they see that list. when's the next appt?

re info, yvw. i'm only sorry i can't do more, esp when docs are dismissive like that. boo. in the meantime, we can have a look at your diet and figure out a supplement regimen. worst case scenario you ask for tests because you're afraid you've overdosed on something - 'please save me from myself, doctor!!!' :twisted:
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Tue Aug 14, 2012 4:38 pm

here it is post128490.html#p128490

re uric acid that's not a huge need-to-know, just nice-to-know. when zinc is low normal, so is uric acid. low ua indicates a broken urea cycle with implications for ammonia status (elevated ammonia = not good for you!)

don't worry about copper, or vit e, or selenium, etc. and as the post says, you should not have to justify asking for b12 and d3 tests (but i would qualify that statement by adding, if you have an ms dx already).

anyway some tidbits of science for magnesium, zinc and ferritin are there. mind you, some of the studies reference ms specifically, so with those you might have to say, i want to test this one to help me make sure i don't match the ms patients, or something along those lines.
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby midnight » Wed Aug 22, 2012 6:11 am

I decided to ditch the NHS for now and pay out for a private consultation with a really good Rheumatologist after my GP broke the last straw by announcing that I've never been officially diagnosed with EDS even, and I couldn't possibly have it as it's 'too rare' - The doctor I'm paying to see is a leading expert in EDS (something I at least know I have!) so as well as a set in stone diagnosis, I will be able to request him to test for whatever I want (one of the perks of paying hundreds of pounds!) and he'll also be able to refer me to anyone I/he thinks is necessary - I don't really know what kind of doctor I'd need to see about my other symptoms tbh...any ideas of what I should ask him? Apart from vit/min level testing?

I have to travel all the way to London to see him, but I think it'll be worth it as he can write and demand that I get things I need :-D
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Wed Aug 22, 2012 10:39 am

heya! i'll have a think - i'm in a break in a conference right now, have to be back in 7 mins from now. will send some thoughts later. flying home soon, will be home in a few hours. ttfn!
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby midnight » Wed Oct 31, 2012 6:04 am

Helloooo!

Sorry I haven't been on in ages, I saw the professor in London..

I have been diagnosed with EDS, POTS and Dysautonomia - when you put them together (as they commonly appear together!) you get what looks like a very MS-type symptom list, but...luckily (or not?!) it's all down to good old Ehlers Danlos Syndrome (for which there is no medical treatment really, just specialist physio, pain meds, orthotics and muscle relaxants).... they're going to treat my dysautonomia (autonomic nervous system dysfunction) with meds though :smile: thanks for all your help!
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby want2bike » Wed Oct 31, 2012 7:11 am

When it comes to health diet is everything. Not important what the disease is but the diet we choose. If they put a name on the disease they will just give you a drug and drugs are poison. If you doctor can't put a name on it he will tell you it is all in your head. He doesn't want to seen as stupid. It is important to examine our enviroment and make sure it is a clean as possible. You get the infromation and you do not need a doctor. Doctors are the third leading cause of death in the USA.

http://www.youtube.com/watch?v=9-qhxa-3 ... tube_gdata

http://www.youtube.com/watch?v=B0WWXzJu ... re=related

http://www.youtube.com/watch?v=3obChbjh ... re=related

http://www.youtube.com/watch?v=8JF7TcPs ... ure=relmfu

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Wed Oct 31, 2012 7:15 am

thanks for dropping in with an update! reposting a couple things...:

A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements
http://www.ncbi.nlm.nih.gov/pubmed/15607555
Ehlers-Danlos syndrome is a rare disorder, comprising a group of related inherited disorders of connective tissue, resulting from underlying abnormalities in the synthesis and metabolism of collagen. This proposal is specifically concerned with Ehlers-Danlos syndrome classic type (formerly Types I-III), which is characterized by joint hypermobility and susceptibility to injury/arthritis, skin and vascular problems (including easy bruising, bleeding, varicose veins and poor tissue healing), cardiac mitral valve prolapse, musculo-skeletal problems (myopathy, myalgia, spinal scoliosis, osteoporosis), and susceptibility to periodontitis. No treatment is currently available for this disorder. The novel aspect of this proposal is based on: (i) increasing scientific evidence that nutrition may be a major factor in the pathogenesis of many disorders once thought to result from defective genes alone; (ii) the recognition that many of the symptoms associated with Ehlers-Danlos syndrome are also characteristic of nutritional deficiencies; (iii) the synergistic action within the body of appropriate combinations of nutritional supplements in promoting normal tissue function. We therefore hypothesize that the symptoms associated with Ehlers-Danlos syndrome may be successfully alleviated using a specific (and potentially synergistic) combination of nutritional supplements, comprising calcium, carnitine, coenzyme Q(10), glucosamine, magnesium, methyl sulphonyl methane, pycnogenol, silica, vitamin C, and vitamin K, at dosages which have previously been demonstrated to be effective against the above symptoms in other disorders.

this is a good read as well http://www.ctds.info/ehlers_danlos_diet.html (note in particular the improvement when boosting high zinc foods and reducing wheat intake)

here's the rest - http://www.ctds.info/ehlers_danlos_diet2.html
note the advice to be careful with magnesium antagonists - smart!
reducing sugar intake, and mixing raw and cooked, also smart.
love the high intake of green leafy veg too. high in K, but also high in E for balance.

if you can get tests i would look at magnesium zinc and vitamin K. i have target levels (upper end of the normal range) for mag and zinc, and if you like i can have a look at the vit K situation too :)

ttfn!
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