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Author Topic: Can I donate my still-living (but somewhat worn) body for medical research?  (Read 74637 times)

Offline OldDragon

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Okay, I'm new here, and at the suggestion of an existing member.

As the title says, and within reason according to my circumstances, I'm willing to offer my living body as a subject for serious medical research in areas that may help me achieve some benefit/s whilst still around to enjoy it/them, and to further research and understanding of particular conditions whilst I'm able to give verbal feedback.

I have quite a complex medical history that includes spinal damage; fibromyalgia and recently diagnosed breast cancer - oh, and I need to lose around 4 stones to aid mobility but without that impacting on pending chemotherapy (following lumpectomy and full lymph node axillary clearance) and fibro associated IBS sensitivities.

My background is psychology related and I write.

Open to genuine suggestions and discussion.


[MOD - Subject heading altered to make it a question, in line with the forum style - CS]
« Last Edit: 13/06/2008 09:20:11 by chris »


 

Offline RD

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So you want to be a guinea-pig?.

You could volunteer to participate in a drug-trial to test a new treatment for an illness you have...
http://www.entertrials.co.uk/clinical-trials-home
Testing new medicines is not a risk-free exercise.
« Last Edit: 13/06/2008 03:57:02 by RD »
 

Offline OldDragon

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That's probably not an option open to me at this present time - chemo pending, and all that. Not really what I had in mind, either.

It could be that elements of my case history tie in with research already being undertaken? Spinal trauma links with fibro and/or drug sensitivities, for example, or perhaps someone is looking into the options for fulfilling the dietary needs of those with compromised mobility that precludes a healthy exercise regime?

With an immune system already compromised by FM, possibly feedback on the effects of undergoing chemo as that might relate to fibro might be of interest to someone?

All I am doing is offering an opportunity that might be of use to someone in the medical science research field, is probably unique, could benefit others and, if it's workable, a willingness to assist them with feedback.

I've been hospitalised twice during the past month and undergone two surgical procedures. During that time I had to cease taking anti-inflammatory medication because of the risk of excessive bleeding during surgery, and the knock on effect of that, possibly coupled with the surgery, on my spinal damage has been severe, and includes crippling muscle spasms and pain that did not respond to any analgesics prescribed, and only minimally to muscle relaxing medication at the prescribed doses. My biological time clock appears to have taken on a mind of its own, and insomnia a whole new meaning known only to itself. I've no idea what my natural brain chemicals are doing - gymnastic exercises off the tops of electricity pylons for all I know, amd judging by the sensations akin to bouncing a cattle prod around and between my shoulder blades. (And they have me on corticosteriods in an attempt to settle that down at the moment - something that's been resorted to successfully in the past.

Before anyone makes any assumptions - no, I'm not further frying my brain with worry or anxiety over the cancer. If I could lie down for long enough to fall asleep before the next electrical spasm strikes, I assure you I'd sleep like the snoring dog without a care in the world and currently taking advantage of the chance to keep the sofa warm for me!  Fact is, I've not been able to sleep in a bed - other that the hospital one that helped kick this whole performance off over a month ago - in over 12 years. Sometimes I've gone for weeks without sleep, just a few minutes dozing here and there between the spasms.

I am not afraid of death and I'm not afraid to talk about it. Like I said before, my background's psychology related, and if anyone wants to ask questions, and for the right reasons, feel free. I retain the right to withold an answer, but generally prefer to shoot straight from the hip and as honestly as my level of self-awareness and understanding allows.

The fellow who introduced me to this forum said you probably wouldn't know what to make of me. You are not alone! My doc's at a loss too. I gather I'm to have an MRI and bone scan at some point in the near future. Perhaps... just perhaps, there might be some clues there?
« Last Edit: 15/06/2008 00:50:33 by OldDragon »
 

Offline RD

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Hi OldDragon,
I am not suggesting that you stop taking corticosteroid treatment, however this medication may explain your "fried brain" and insomnia symptoms...

Quote
The steroid psychoses we saw presented as a spectrum psychosis with symptoms ranging from affective through schizophreniform to those of organic brain syndrome. No characteristic stable presentation was observed in these 14 patients, but the most prominent symptom constellation to appear during the course of the illness consisted of emotional lability, anxiety, distractibility, pressured speech, sensory flooding, insomnia, depression, perplexity, agitation, auditory and visual hallucinations, intermittent memory impairment, mutism, disturbances of body image, delusions, apathy and hypomania

Since our study, several other critical reviews of the literature and new studies have become available. This newer literature provides longitudinal insight into the nature of steroid induced mental change. The incidence of steroid psychosis varies widely in the literature ranging from 13 to 62%, with a weighted average of 27.6% for some steroid induced mental change, the vast majority of which are mild to moderate and do not herald the development of a full-blown psychosis or affective syndrome. The incidence of a severe psychiatric syndrome in the more than 2,500 patients reported in the literature ranges from 1.6 to 50% with a weighted average of 5.7%.
http://www.drrichardhall.com/steroid.htm


Quote
TABLE 2
Adverse Effects of Steroid Therapy and Cautions.
Neuropsychiatric:
Headache, vertigo, seizures, increased motor activity, insomnia, mood changes, psychosis.
Use with caution in patients with convulsive or psychiatric disorders. Use may aggravate preexisting psychiatric conditions. Steroid-induced psychosis is dose-related, occurs within 15 to 30 days of therapy and is treatable if steroid therapy must be continued
.
http://www.aafp.org/afp/980800ap/zoorob.html
« Last Edit: 13/06/2008 06:41:54 by RD »
 

Offline OldDragon

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Thanks for that, although the symptoms described by me were present prior to the introduction of a short, 6 day course of Prednisilone 5g gasrto resistant three days ago and and at a dosage of 6 6 6 3 3 3 per day. This in an attempt to reduce swelling and inflammation between my shoulder blades. I've had to resort to this on two previous occasions, and when it has proven successful. The last time was in 2003 and at exactly the same dosage.

At this present time, I don't feel as if my brain is 'fried' - although it was heading that way prior to commencing the Prednisilone course, and after having had the anti-inflammatory medication withdrawn. In my case, that was simply a minimal dose of common aspirin taken only as required as a maintenance dose, due to experiencing undesired side effects when prescribed such as Diclafenic, Mobic, Ibroprofen and their ilk. Heck, I've enough to contend with without extra side-effect symptoms! Lol

Assess for yourselves, if interested, the state of my mental capacity to function rationally. Warn me, please, if you can identify anything I'm failing to register. Three days ago I knew I was not far away from verbally removing the head of the next idiot to cross my path. ;) Well, if they lead with the chin...
« Last Edit: 13/06/2008 06:58:58 by OldDragon »
 

Offline RD

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If your cognitive problems preexisted the corticosteroid treatment then they could be the "brain fog" associated
with fibromyalgia, a.k.a "fibro fog"...
http://en.wikipedia.org/wiki/Fibromyalgia
« Last Edit: 13/06/2008 06:59:11 by RD »
 

Offline OldDragon

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Oh, I am very familiar with the Fibro-fogged brain and cognitive impairment, but am not aware of having such affectng me at the present time - although perhaps you have spotted something in what I've posted above and that I've failed to recognise? It can happen. Feel free to point it out if so. I appreciate honesty and directness. Thanks.
 

Offline OldDragon

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(Strange... Did I imagine a post from you above this, D? ;) No, surely you deleted it?)

Okay, thanks - but seriously, RD, if you (or anyone else) should spot something that indicates it, please warn me. That way I am in with a chance to address it as early as possible.

I'll be logging off shortly - helper arrives at 8am, district nurse soon after to attend to the drain that I still have in situ from the ANC op last week. The former is sure to 'tell' me I 'should' have got some sleep last night. ;) Bless her, she means well, but I doubt could walk a few yards in my shoes, let alone a mile. Lol (Who the devil would want to?)

 
« Last Edit: 13/06/2008 07:38:15 by OldDragon »
 

Offline RD

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Just a couple of thoughts...

If you want to participate in research perhaps someone on a Fibromyalgia forum may be able to put you in touch with researchers.

Medications are available to prevent muscles going into spasm (spasticity),
these include Baclofen, Tegretol, Tizanidine, even Botox injections.
 
These treatments would only be available from a doctor.


http://www.scoopshare.com/Health/Fibromyalgia/Drg_Baclofen.cfm

Quote
Tizanidine
From Wikipedia, the free encyclopedia
Routes Oral, Intranasal, Injection
Tizanidine (brandnames Zanaflex, Sirdalud) is a drug which is used as a muscle relaxant. It is a centrally acting α-2 adrenergic agonist. It is used to treat the spasms, cramping, and tightness of muscles caused by medical problems such as multiple sclerosis, spastic diplegia, back pain, or certain other injuries to the spine or central nervous system. It is also prescribed off-label as a sleep aid, seizure inhibitor, and for some symptoms of fibromyalgia.
http://en.wikipedia.org/wiki/Tizanidine

Quote
Some anticonvulsant drugs are effective in treating bipolar disorder, fibromyalgia...
The anticonvulsants are also known as anti-epileptics. They were designed -- and are approved by the Food and Drug Administration -- primarily to treat people who have various kinds of seizure disorders, including seizures or convulsions caused by epilepsy, strokes, and brain tumors. Several -- phenytoin (Dilantin), carbamazepine (Carbatrol, Tegretol,), ethotoin (Peganone), and valproic acid/divalproex (Depakene/Depakote) -- have been on the market since the 1950s. But a "second generation" of anticonvulsants was developed in the 1990s. These include gabapentin (Neurontin), lamotrigine (Lamictal), pregabalin (Lyrica) and topiramate (Topamax)
.
http://fibrotoday.blogspot.com/2007_09_01_archive.html
 
« Last Edit: 13/06/2008 08:27:29 by RD »
 

Offline OldDragon

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I've been prescribed Diazepam for the muscle spasms. First dose reasonably effective, second moderately so... third and guess what?

I get the same problem with many analgesics. My system seems to adjust rapidly to counter their effects, dosages are increased, and suddenly my system decides it's had enough of that, and rejects it... puting my back into a spasm in the process of retching. First time I tried Dihydrocodeine I got eight hours relief from pain and rode a horse for the first time in a year. Second tablet's effect lasted five hours... A couple of days later the doc doubled the dose and the system rejected the lot.

I am already a member of a fibro forum or two. Probably too complex a case history for them to touch, although some interested in any outcome from here, should anything materialise that could prove useful.

Personal logic applied to this, and these severe flare periods, has me concluding it is the inflammation kicking off, then applying pressure  to the nerve endings in the thoracic vertebrae that must trigger changes in the production of brain chemicals, so likely neurological. If I am able to manage the inflammation effectively, I have had quite long periods of relatively little pain or other symptoms.
« Last Edit: 14/06/2008 01:44:14 by OldDragon »
 

Offline OldDragon

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Seems that so far no one wants to take up the offer, but in case someone does and it means anything at some future date, I am STILL awake! Nothing so far that I have tried to knock myself out with has worked and all I have left that is remotely likely to have any effect, and that I can safely take, are  the hayfever pills! (And I haven't even sneezed today, so perhaps there is a God after all? Lol)

This, by the way, is how I was several years ago and when the doctor I was then consulting told me to go away and learn to live with it. Only difference between then and now, apart from how much I have aged, is that then I didn't also have cancer. (And I am still trying to learn to live with it.)

One final laugh for you before I let the PC do an AV scan... I went to the front door for a breath of air and a neighbour stopped to tell me how well I was looking! LOL I must remember to steer well clear of them if I see them behind the wheel of their car! (Or perhaps they are lying through their eye teeth just to try and make me feel better?)
 

Offline OldDragon

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I don't know if any of this is of interest at all to anyone here, or could be in future, but for the record, I am still awake and in a sitting position. The action of attempting to lie down results in some type of nerve compression that brings on the sentation of an electric shock and muscle spasms that wake me up even more.

I still feel as if my head is rational and not fogged either by fibro or lack of sleep - I feel quite awake mentally, although aware that physically my body is in need of sleep. I have been told by ex-military pals that there are similarities between this apect and what is referred to as battle fatigue as experienced by front line troops fighting in a war zone. I'm not ex military, and have no medical qualifications.

I don't want to bore anyone here with this, or take up space if what I am doing or saying is inappropriate, or unlikely to strike any chords that could be useful to research or furthering knowledge into any of the condtions I have. All I can do is to tell it as it is from my perspective and hope.

If the moderators here feel I'm wasting their space and my time posting, I will not take offence if they say so. Neither will I take myself off feeling angry or rejected. As long as my head remains reasonably rational, or someone with the ability to recognise signs of deterioration in that respect and warns me, I am quite capable of dealing with my emotional needs and addressing those. Well versed, in that respect, in fact. Lol

Perhaps someone can answer one simple question?

Do you think it appropriate, or potentionally useful to medical science for me, as a talking guinea pig, to continue updating this thread?

 

Offline neilep

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Please do not be disheartened !

This is a most unusual offer/invitation you have made. You have also made it on the cusp of the weekend where things notoriously slow down......not just here but in all forums.

I just wanted to quickly post a ' wishing you well ' comment and to welcome you here....


It's possible that you might achieve quicker responses by contacting research institutes/teaching hospitals directly. I personally don;t have any contacts in this area but it's a suggestion nevertheless....

...though the main premise of my posting was just to offer a virtual hug and to say please do not be upset if an offer to accept your invitation fails to materialize here.
 

Offline OldDragon

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Thank you, Neilep - make it a gentle virtual hug though! Thanks to the muscle spasms, the ribs feel like are already broken. ;)

To reassure you, I don't feel disheartened at all, or upset at the lack of response. Simply a little uncertain as to how others here might be reacting to my post. I am well aware that my style of telling things as they are can be intimidating to some, although felt that the science world could take me on the chin, and in the spirit meant. Post as I have here on a fibro forum, or even worse, speak it aloud at a meeting of a local CFS/ME/FM support group, and one starts to hear the knicker elastics snapping and folk looking for oxygen cylinders. I stear clear of the latter now and have done for years. I already have what they have, plus a bit more, and do not desire to dwell in the illness whilst sitting on the pity-pot - I am a looking for the recovery. Tea I've substituted for apple juice in the hope it can help detox my system after all the ineffective meds I've taken over the past hours of wakefullness. As for sympathy, to me it belongs in a dictionary and somewhere between sick and syphilis. ;)

With the ongoing cancer treatments pending, there would be little point at this stage in contacting those research institutes or hospitals you suggest, but something to bear in mind for the future, perhaps? (Not that I can travel far, anyway.)

Before I go, I repeat... do you think it appropriate, or potentionally useful to medical science for me, as a talking guinea pig, to continue updating this thread?
« Last Edit: 15/06/2008 01:03:39 by OldDragon »
 

Offline RD

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If I were you I’d try the medications which some people with fibromyalgia have found effective before I would volunteer to be a guinea-pig for an untried drug. The anti-spasticity medications I listed above are different from Valium (diazepam); you should not let your negative experience with previous medications put you off trying others to relieve your muscle spasms.

Forums created for individuals in similar circumstances may provide you with more feedback than this one.
If your views are too frank to be acceptable on those forums you could write your own uncensored blog.

Links which may be useful …

The Fibromyalgia Research Blog: The latest in Fibromyalgia research, news, and clinical trials.
http://fibroresearch.blogspot.com/search/label/clinical%20trials

National Fibromyalgia Research Association (USA)
 http://www.nfra.net/

Questions and Answers About Fibromyalgia
By National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
http://counsellingresource.com/distress/chronic/fibromyalgia/fibromyalgia-qa.html

More treatments for spasticity are listed here …
http://en.wikipedia.org/wiki/Spasticity

PS
Unfortunately this study is in the USA but may give you some ideas...

Quote
Cognitive Behavioral Insomnia Therapy for Individuals With Fibromyalgia

This study is currently recruiting participants.
Verified by National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

The purpose of this study is to evaluate the effectiveness of cognitive behavioral insomnia therapy in reducing sleep disturbances and improving other FM-related symptoms
.
http://clinicaltrials.gov/ct/gui/show/NCT00321451;jsessionid=7CEC7FE003038B778468A7D78C80444C?order=21
« Last Edit: 14/06/2008 08:16:37 by RD »
 

Offline OldDragon

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Thanks, RD. I will certainly explore with my own GP (on leave at present) some of the options that you have suggested, and recent experiences indicate to me an urgent need to review my medication situation.

However, to clear any misunderstandings, I'm not looking at present towards volunteering myself as a guinea pig for drug trails. To me, knowing considerably more of my medical history than has been revealed here to date, that would be an act of lunacy!

Helping the medical profession to better understand the nature of the condition, or similar,  related conditions, the ups and downs, and effects on the daily life of someone with such, is an area that I may well be useful in. In fact, and to be fair to anyone reading this, I am being urged to attempt to do this by a number of other people. It is possible some may, in their own time, come forward here and reveal themselves. That will be up to them, but I have suggested they do so and as a result of private email correspondence that I've received.

One has mentioned the difference that one of the drugs that you mentioned has made to them, and we are exchanging an interesting dialogue, so even if there's not a great deal of feedback forthcoming, as yet, in this thread, some good is coming from it, which is encouraging.

Negative experiences with particular drugs won't put me off trying others, obviously with my doctor's approval and discussion. He freely admits (something I have great respect for him over) that he doesn't know how best to help me, or what to try next! Let's face it, it's not quite as straightforward as me asking for anti-biotics to treat a sinus infection or haemorrhoid ointment for piles. Lol

Regarding other forums and blogging, perhaps I should 'fess-up' a little more here - I do already write uncensored articles and blogs for specific groups or on other online forums. These pitched accordingly. I'm also one of a team of administrators for another website forum, albeit not science related, that does have a strong foundation dating back to psychological research carried out in the early 1970s.

I will certainly check out the links you have posted. Have those saved for when I am better placed to follow them up.

On a personal note, I finally managed to lie down without bringing on another series of spasms at 6 am this morning and slept until 8am when my helper called but she left me to sleep on through her activities until 10.30am.

Having attempted a bit of a detox last night using apple juice, and refrained from any caffeine intake, I had the anticipated withdrawal headache. Easily cured with a mug of tea.

When the district nurse came in to deal with the drain and dressings, I asked her to also check my BP and blood sugar levels. I am not diabetic, but after the severe FM/neurological pain, muscle spasms, perspiration loss, insomnia and minor vomitting of the last few days, suspected there was an imbalance. BP was 140/90 and blood sugar 4.9. Better than I expected, but I'm no doctor.

She questioned me and voiced concerns about my recent dietary intake - which I am aware wasn't ideal yesterday, consisting largely of fruit juice and raw veg/salad with a bit of cold quiche, and a beef sandwich. All at irregular times and snatched as and when able. Lol

At least I ate! During past flares of this intensity, that's not always been possible.

Today, I feel rational and am not aware of any fibro-fog; reasonably refreshed from the sleep achieved; but extremely sore and tender from the effects of the muscle spasms, and there is still some obvious spinal inflammation present in the C6 - T5 region. Ribcage feels as if I have done a few rounds in a boxing ring and as if wearing a tight corset! Lol

The only medication I have taken so far today is two x 300g soluable aspirins. Will be taking the penultimate Prednisilone corticosteroid dose of 3 x 5g tablets shortly. The key to recovery from this flare, TO ME, seems to be to deal with the inflammation and settle that down if possible.

NB: Just checked out this link, RD - http://clinicaltrials.gov/ct/gui/show/NCT00321451;jsessionid=7CEC7FE003038B778468A7D78C80444C?order=21 - will be interested to follow up on the results, although obviously don't qualify personally due to geographical location and other exclusion criteria.

Pity no studies are going on in the UK re. FM and the impact of surgery etc.
« Last Edit: 15/06/2008 01:07:30 by OldDragon »
 

Offline neilep

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140/90 is what I think most doctors would say is just at the upper regions of normal....and I bet you that within 5 minutes it would have come down further. My BP is always up there too.....

Pomegranate juice is a wonderful detoxifier and green tea............drink green tea (with no milk)...it's wonderfully refreshing !!

Try to reduce your dairy products, drink semi-skimmed and cut down the red meat....eat little and often rather than just main meals....oily fish, red berries, green veg....and if you're going to drink juice...tray and drink freshly squeezed...and not from concentrate (Tropicana for instance)

...oh....and yes..........please do keep updating.

Hugs (gentle ones)


neil
 

Offline RD

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If you do try the medications I have mentioned and feel they are not having any effect, they should be tapered-off over a week or longer, (like steroids), not stopped suddenly as this can temporarily increase spasticity, (a temporary withdrawal effect).

Your GPs should be able to advise you on this matter; they should have a copy of the BNF, (as should your local library) ...
Quote
It includes the BNF details medicines prescribed in the UK, with special reference to their uses, cautions, contraindications, side-effects, dosage and relative costs. Updated in print every six months, the BNF reflects current best practice as well as legal and professional guidelines relating to the use of medicines.
http://www.drugguides.co.uk/index.asp?details=957509&t=9790853697763+%26ndash%3B+British+National+Formulary+55&gclid=CM3etfmS9JMCFQuJ1QodyShGWg
 

Offline OldDragon

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RD…

Thanks for that, although from experience, I have learned the hard way to thoroughly familiarise myself with as much information as possible, including contra-indications, before taking anything prescribed nowadays.

On several occasions, I have queried things with the pharmacist or referred back to my doctor to confirm something - and been proven right to have done so. A few times, I’ve had to return a prescription to the chemist’s untouched. My reasons ranging from  being unfamiliar with differences in generic and common names that, had I known them to be the same, could have alerted me at the time prescribed, to contra indications relating to medical conditions not yet mentioned here -  e.g. allergies and allergy related asthma.

Having only recently (and accidentally) discovered some minor errors and queries in the district nurses information folder left here - these relating to my current medications and a reference that IBS was not detailed on their computer records - I decided to query these things. It appears that, when medical records are transferred from the old paper folders onto the new computerised systems, the people employed to enter the data are not medically trained, and therefore unfamiliar with the terms and significance of some information. It may not be significant to omit a diagnosis of IBS (made about 14 or 15 years ago) from my medical notes, but to record on a friend’s notes ‘Can take penicillin’ instead of ‘CANNOT take penicillin’… and you will soon see my drift.

The doctor was well aware I’d had IBS for years, but confirmed there was no record of it or when they’d first diagnosed it. Between us we came up with an approximate time that coincided with the early diagnosis of CFS and sero negative poly-arthropathy. (Circa 1993/4)

I’d be most interested to see how many other errors and omissions there might be, and that I can recognise in my own medical notes following computerisation. That if only to help ensure I’m not accidentally medicated with something lethal to me a little sooner than I might choose… and assuming choice to become possible in the UK before I naturally turn the toes up or whatever. (Having already survived a few near death experiences – e.g. walked away from a motorway RTA at 80mph; a couple of fires; falling tree 5’ behind my car etc… I know only too well how these ‘whatever’ things can happen.)

Neil…

I think 5 minutes probably wouldn’t have made much difference at present, but perhaps a little further away from this flare and if I can follow some of your dietary suggestions, there’s certainly potential for improvement.

To show willing, I have managed to search the shelves of the local village store and acquired a litre of pomegranate smoothie, which includes blueberries and acai – all natural and no additives. That is described as a natural detox on the carton, but the only thing resembling what you describe. I was amazed to even find that locally.

I may need to be a little bit careful and try experimenting with the green tea. I’ve tried a few herbal teas and with mixed results. Unfortunately, I can’t recall the ones that proved anything but refreshing for me! Lol (I do recall a 60s party where the contents of dried herbal tea bags were being turned into spliffs though… ;) Could this mean my memory is experiencing restoration?)

I already have semi-skimmed milk on a regular basis, even skimmed on occasions when semi-skimmed in out of stock.

Can up the red berries as they come into season and if I can beat the birds to them, also increase the green veg, but have to be careful with things like cabbage, sprouts etc., and the IBS.

Red meat is a failing of mine, but I do enjoy tuna, salmon, various white fish and other seafoods, and eat those regularly.

If anyone here IS looking to test healthy dietary things and needs a subject for a case study, and think I might be useful for this purpose, then I am more than willing to assist. I don’t even mind posting my (not so vital) statistics openly on this forum.  Lol  (Although think I’d prefer to avoid posting any ‘before’ and ‘after’ photos, and most others would probably prefer that too!)

Having already said I have a weight(y) problem to address, I don’t mind openly discussing that here, if anyone has any questions. No embarrassment on my part there. No worries about openly revealing my age, sex, height, weight etc. and dealing with emotions IS my main area of expertise, so I am quite at home on that front.

In about three weeks I’ll be seeing the oncologist and have a better idea of what my follow-up cancer treatments will involve. I am sure there will be people here who have far more knowledge of that that I have, but it would make sense to me to have a good, healthy eating plan prepared and in place prior to any chemo cycles commencing. Pre-op my weight was 196 lbs (14st). If the batteries hadn’t packed up in my scales I could give you an update on that now, but it will have to wait until Monday, when I can replace the batteries. Those scales will also detail the BMI and various other things, too, should anyone want those things, and explore my case further, as it relates to diet.
 

 

Offline Andrew K Fletcher

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Ok have read your posts and now have an understanding of what it is you are up against and if you feel like joining our study into varicose veins and pressure changes in blood pressure, you might find a lot more than may be obvious at first glance.

Have you had an epidural at any time?

Stay away from the pomegranate juice as it is a very powerful oestrogen loaded drink that will play havoc with your other problems.

IBT will give you the leverage to rapidly detox s it increases urine density markedly over flat bedrest and daily activity.

And with your psychology background you may be able to give an accurate description of changes, so please make a note of anything which we can reflect upon down the road to some significant recovery.

Please feel free to google "andrew K fletcher" and "inclined bed therapy" to learn a little more about myself and my research which I am sure you will find very interesting.

Thank you for your kind offer to monitor your varicose veins also as this will prove very useful in say 4 weeks from when you tilt your bed. I say bed because when the bed is tilted it will be far more beneficial than sleeping on the couch. The dogs will love it also :) If you could take discrete photographs of the veins you are monitoring so we can see a before and after it would prove very useful, if not don’t worry about it.


Kind regards Andrew


Andrew
 

Offline OldDragon

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Thanks for your response, Andrew.

After reading yours re. IBT I had a feeling that I might well discover more than the obvious. However, I am afraid we'll have to go with the sofa and not a bed. I have done a fair bit of experimenting over the years, and even an orthopaedic bed plays havoc with my spine. It was only when a friend gave me my present sofa, that I made the chance discovery that, on it, and when not experiencing a flare, I could, on occasions, achieve between 6 and 8 hours restorative sleep! I believe that has to do with the angle of the seat and the support the back of it affords me, together with preventing certain movements during the periods of unconsciousness. Perhaps, by being supported in this way, and the position that I adopt, it relieves pressure on particular nerves caused by arthritic damage/wear and tear to my spine, thus enabling undisturbed sleep?

During my first hospital stay, I was given an orthopaedic bed, and, despite this, within minutes of lying down on that on my side, the first muscle spasm of this latest flare kicked in. I'd not had any for several weeks prior to that. Since then, those have been escalating in frequency and intensity, as have the FM related symptoms. My last muscle spasm was approximately 21 hours ago, although I am aware that there is still some inflammation present in the affected region, the heat and swelling that was in evidence there has considerably reduced now. I have now taken 5 of the 6 doses of the corticosteroid course, and just the two aspirins mentioned earlier. No other form of medication at all since last night when I felt it best to attempt the apple juice detox. My system seems to be telling me it is short of something mineral related, and I was craving something salty earlier, so had a small bag of crisps. That craving disappeared soon after, but for some reason I have it in my head that I may be short of magnesium, although where that idea has come from I don't know. The subconscious, perhaps? Something I have read somewhere and forgotten?

I am feeling very mentally alert at present, despite so little sleep, and despite my eye muscles being noticeably tired. It is my intention to take 2 x 300g aspirins shortly and before attempting any sleep. This due to mild to moderate pain resulting from so many spasms of late and my ribs not having recovered from those, and to get some into my system to further tackle the residue of inflammation. These MIGHT have had some impact upon the discharge from the drain that I still have in situ from the last op, as the amount of that discharge has increased slightly. (It was 40ml when the district nurse changed the bag last time. It is now 40 ml, so likely to rise further before the next change is due.) I suspected it might have that effect when I took the previous two aspirins, but felt it the lesser of the evils available in my 'pharmacy', after yesterday!

I will again ask the district nurse to check my BP etc. when she calls in the morning, and on Monday can pick up some means of monitoring that myself for the purpose of the study. Will also ask my son to raise the end of the sofa. :) (It's actually a sofa bed but I do need the back up.)

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Have you had an epidural at any time?
- No, not to my knowledge.

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Stay away from the pomegranate juice as it is a very powerful oestrogen loaded drink that will play havoc with your other problems.
- Glad you warned me about that, thanks. (Had quite fancied trying it, though. Not to worry.)

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IBT will give you the leverage to rapidly detox s it increases urine density markedly over flat bedrest and daily activity.
This certainly interests me, and I am often aware of some degree of oedema in my ankle/calf regions towards evenings/nights.

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And with your psychology background you may be able to give an accurate description of changes, so please make a note of anything which we can reflect upon down the road to some significant recovery.
Do you have a specific questionnaire or preferred format for recording changes, please? If so, feel free to email or PM that to me, so that I can conform to it.

Will certainly google you, thanks, and I believe you are correct and I will find it interesting. :)

Quote
Thank you for your kind offer to monitor your varicose veins also as this will prove very useful in say 4 weeks from when you tilt your bed. I say bed because when the bed is tilted it will be far more beneficial than sleeping on the couch. The dogs will love it also :) If you could take discrete photographs of the veins you are monitoring so we can see a before and after it would prove very useful, if not don't worry about it.


You are welcome, Andrew, and thank you for allowing me to participate. Hopefully, we will both gain something from this? I will see what I can do to get photographs of the leg veins. Tried earlier, but the flash in this artificial light just burned the images out. Will likely need to arrange something in daylight and with someone else holding the camera. As for the haemorrhoid's... perhaps just a report on any improvement in those will suffice, eh? Lol

« Last Edit: 15/06/2008 04:45:15 by OldDragon »
 

Offline RD

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the flash in this artificial light just burned the images out.

Putting sheets of white tissue paper over the flash to reduce its output should prevent the close-up images from being "burned-out" (overexposed), several layers may be required. Toilet, kitchen, typing & greaseproof papers can also be used in this way.
 

Offline OldDragon

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:D - Thanks, RD. I'd never have thought of that, and so obvious now that you've mentioned it. It's a tip that I can pass on to someone asking about the same thing on another forum, too. ;)

I think I'll first try the outside, daylight option, though... Now where did I put, or last see, my shorts? Lol

As a quick update, it's just gone 4.12 am and I am still far too mentally alert to consider an attempt to lie down and sleep, but no further muscle spasms to report, thank God. For me, often less medication brings more relief, but I do still feel that I need to go and take those two aspirins mentioned earlier now.

First, though, I'd like to thank those who have responded here in this thread and also those who have contacted me privately, either here, by email, or on other forums, having learned of this thread's existence.

Many of the questions asked privately have been asked several times, and are not things that I've any objection to answering openly in this thread. Indeed, it would probably help me to do so, as answering numerous individual messages takes time, as I am sure you all appreciate.

Please, if you have questions, consider posting them in the thread. IF there should be anything that I consider too personal to respond to openly, then I will say so and contact you privately with a response. However, in the interests of science and research, my preferred option would be to keep things in the open and inclusive of any issues that reading this thread may have raised or inspired.

Thanks. :)
 

Offline Andrew K Fletcher

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Inclined Bed Therapy (IBT) works by assisting the circulation and preventing stagnating in areas that are prone to circulatory failure particularly the toes and fingers.

Toenails have been reported by a number of people to shed, particularly nails that are not in good condition. This is then followed by a new nail that is healthier. For example. I used to have a split thumb nail right down to the nail bed. This used to rip of and was very troublesome. It healed up! So take clippings of hair and nails and put a date on them. I found this fascinating as there appears to be some changes in colour and general condition. Body hair for example no longer falls out and requires trimming. Hair on the head also appears to benefit, though I have not recovered from being bald, I have however observed increases in hair and a reduction in hair falling out. Again this may be due to circulation improving to the follicles.

Eyesight: get a check up if possible as this may well change over 4-6 months of IBT.

IBT also places the body in gentle traction because the body is trying to move down the bed, but is resisted by the friction between you and the mattress. Decompressing the spine will enable repairs to take place between the joints, assisted again by improvements to the circulation that should re-hydrate the cushions between the vertebrae. Again something observed by a number of people who found relief from arthritic problems and neurological damage. Having the feet against a foot board or the arm of your sofa will do the opposite and compress the spine and posibly cause circulation in the feet to be comprimised, which is why I suggest tilting the bed.

Spasm in spinal cord injury was shown to increase in some cases and decrease in other cases. Usually after an increase in spasm there was a lull followed by some recovery of function, though the medical profession would still label this as a mere coincidence even though it was reported again by several people with complete spinal cord injury dating back to 28 years post injury with no recovery prior to IBT in one case. 2 cases where 2 years post injury again (complete) Their case histories are published on the Carecure Forum and duly ignored by everyone J
http://sci.rutgers.edu/forum/showthread.php?t=17404
There is a lot of compelling evidence for IBT on this forum and a lot of idiots who believe having a spinal cord injury automatically makes them an expert. Perhaps you can understand their reasoning that this can’t possibly work for a complete and incomplete SCI when people they have communicated with for years begin reporting that it does and then they lock the thread. Never been able to figure that out.

Contraindications of IBT.
Be aware that IBT increases the uptake of drugs, so you may find that reducing the level of medication in the coming weeks could prove helpful. Parkinson’s disease for example, we found a ¼ of the prescribed LD had the same effect as the full dose without IBT. Possibly due to increased uptake but also possible that the brain started to produce natural dopamine, though a thorough investigation into this would be required in order to establish what is going on in PD.

As for your problem with Cancer, it pains me to tell you that I could not save my own father even though I got him an extra 8 months of good life by challenging the doctor who told us his demise would be rapid and there was nothing they could do because the tumour was pressing on the tubes to his gall bladder. They eventually put a stent in to relieve the pressure and bought him the precious 8 months to which we are very grateful for. But then again, I could not get Dad to try anything alternative, not even to drink filtered water.

During my extensive research into trying to find a way to help dad fight the big C. I found some interesting reports on alternatives, although Dad refused to listen and trusted the people who gave him metformin, which I am convinced caused the cancers, even though he did not have diabetes. (they said it was just in case he did get it?)

Some of what interested me.
http://www.project-aware.org/Managing/Hrt/progesterone_FAQ.shtml This my wife has used to great affect with helping to reduce the problems with uterine fibroids. Look into this if you have not already done so. Avoid anything with parabans in it. Look at all of your toiletries and throw out anything with parabans in it.

The best detox in the world is asparagus. We buy the frozen asparagus (freezer is full of it and we love the stuff.) Makes your pee stink to high heaven in 30 minutes after eating it. We even drink the water it is boiled in or add it to the gravy on a dinner.

Asparagus
Several years ago, I had a man seeking asparagus for a friend who had cancer. He gave me a photocopied copy of an article, entitled, `Asparagus for cancer' printed in Cancer News Journal, December 1979. I will share it here, just as it was shared with me:

"I am a biochemist, and have specialised in the relation of diet to health for over 50 years. Several years ago, I learned of the discovery of Richard R. Vensal, D.D.S. that asparagus might cure cancer. Since then, I have worked with him on his project, and we have accumulated a number of favourable case histories. Here are a few examples.

Case No. 1, man with an almost hopeless case of Hodgkin's disease (cancer of the lymph glands) who was completely incapacitated. Within 1 year of starting the asparagus therapy, his doctors were unable to detect any signs of cancer, and he was back on a schedule of strenuous exercise.

Case No. 2, a successful businessman 68 years old who suffered from cancer of the bladder for 16 years. After years of medical treatments, including radiation without improvement, he went on asparagus. Within 3 months, examinations revealed that his bladder tumour had disappeared and that his kidneys were normal.

Case No. 3, a man who had lung cancer. On March 5th 1971 he was put on the operating table where they found lung cancer so widely spread that it was inoperable. The surgeon sewed him up and declared his case hopeless. On April 5th he heard about the asparagus therapy and immediately started taking it. By August, x-ray pictures revealed that all signs of the cancer had disappeared. He is back at his regular business routine.

Case No. 4, a woman who was troubled for a number of years with skin cancer. She finally developed different skin cancers which were diagnosed by a skin specialist as advanced. Within 3 months after starting on asparagus, her skin specialist said that her skin looked fine and no more skin lesions. This woman reported that the asparagus therapy also cured her kidney disease, which started in 1949. She had over 10 operations for kidney stones, and was receiving government disability payments for an inoperable, terminal, kidney condition. She attributes the cure of this kidney trouble entirely to the asparagus.

I was not surprised at this result, as `The elements of materia medica', edited in 1854 by a Professor at the University of Pennsylvania, stated that asparagus was used as a popular remedy for kidney stones. He even referred to experiments, in 1739, on the power of asparagus in dissolving stones. We would have other case histories but the medical establishment has interfered with our obtaining some of the records. I am therefore appealing to readers to spread this good news and help us to gather a large number of case histories that will overwhelm the medical skeptics about this unbelievably simple and natural remedy.

For the treatment, asparagus should be cooked before using, and therefore canned asparagus is just as good as fresh. I have corresponded with the two leading canners of asparagus, Giant Giant and Stokely, and I am satisfied that these brands contain no pesticides or preservatives. Place the cooked asparagus in a blender and liquefy to make a puree, and store in the refrigerator. Give the patient 4 full tablespoons twice daily, morning and evening. Patients usually show some improvement in from 2-4 weeks. It can be diluted with water and used as a cold or hot drink. This suggested dosage is based on present experience, but certainly larger amounts can do no harm and may be needed in some cases.

As a biochemist I am convinced of the old saying that `what cures can prevent'. Based on this theory, my wife and I have been using asparagus puree as a beverage with our meals. We take 2 tablespoons diluted in water to suit our taste with breakfast and with dinner. I take mine hot and my wife prefers hers cold. For years we have made it a practice to have blood surveys taken as part of our regular checkups.

The last blood survey, taken by a medical doctor who specialises in the nutritional approach to health, showed substantial improvements in all categories over the last one, and we can attribute these improvements to nothing but the asparagus drink. As a biochemist, I have made an extensive study of all aspects of cancer, and all of the proposed cures. As a result, I am convinced that asparagus fits in better with the latest theories about cancer.

Asparagus contains a good supply of protein called histones, which are believed to be active in controlling cell growth. For that reason, I believe asparagus can be said to contain a substance that I call cell growth normaliser. That accounts for its action on cancer and in acting as a general body tonic. In any event, regardless of theory, asparagus used as we suggest, is a harmless substance. The FDA cannot prevent you from using it and it may do you much good." It has been reported by the US National Cancer Institute, that asparagus is the highest tested food containing glutathione, which is considered one of the body's most potent anticarcinogens and antioxidants.
« Last Edit: 15/06/2008 10:05:43 by Andrew K Fletcher »
 

Offline grumpy old mare

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Sorry, this is going to be long, even though I've only just joined this minute...


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Helping the medical profession to better understand the nature of the condition, or similar,  related conditions, the ups and downs, and effects on the daily life of someone with such, is an area that I may well be useful in.
I would certainly find this very interesting. Even with my – in comparison – ‘minor’ and indefinitely better known type of health problems (several prolapsed discs), I found that only one single consultant had ANY idea what it is like to live with day by day, not being able to sit, hardly able to walk, feeling like being of no use to anything or anybody and even being made out to be more or less of a hypochondriac. The GPs I’ve been seeing were (and actually are) exceedingly unhelpful and clueless. (I'm quite ok now after discectomy - the above is my experience from 'before')


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In fact, and to be fair to anyone reading this, I am being urged to attempt to do this by a number of other people. It is possible some may, in their own time, come forward here and reveal themselves. That will be up to them, but I have suggested they do so and as a result of private email correspondence that I've received.
One has mentioned the difference that one of the drugs that you mentioned has made to them, and we are exchanging an interesting dialogue, so even if there's not a great deal of feedback forthcoming, as yet, in this thread, some good is coming from it, which is encouraging.

One of them is me! I’m not sure which, one particular prolapsed disc or the discectomy, has left me with permanent nerve damage, presenting as tics in my left foot, “escalating” into nerve cramps/”electricity shoots” (a less painful – but still painful - version of the old dragon’s “cattle prod”) in the whole leg. With this, I had for ages the same problem as the old dragon – the doctors did not understand what I was talking about. When it first presented straight after spinal surgery (still in the waking-up-unit) I was being told it’s due to panic attacks and they wouldn’t believe me that until they started I was feeling absolutely fine. It just suddenly started. Anyway, to cut a very long story short, in the end, after nearly a year of having these tics and cramps about once an hour – i.e. not a single night’s sleep undisturbed, the doctors telling me to eat more bananas etc not believing that it was NOT “simple” muscle cramps - I eventually resorted to writing a letter to the management of the RUH, with copies to every single doctor I’d ever had to deal with in connection with my spinal problems … and lo and behold, I had an appointment with the pain clinic within 3 days (of posting the letter!!!), the brilliant and lovely and great female consultant there (oh no, I’m not biased ;-))) actually KNEW what I was talking about and prescribed Gabapentin (see RD's comments), which has really been helping me (I’m on 8 a day). It does not seem to have made the IBS any worse nor made my tendency to be mildly depressed (which has nothing as such to do with the spine - had that before) any worse either.


A couple of questions for Andrew:

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Have you had an epidural at any time?
Why do you ask that in this connection? (I’m asking because I’ve had 2 or 3 epidurals for my back)


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Stay away from the pomegranate juice as it is a very powerful oestrogen loaded drink that will play havoc with your other problems.

I have no idea if this bears any relation to the subject in hand – but this is a quote from an email I sent to the old dragon this morning:
The old leg is playing up at the moment despite the Gabapentin. It does that once a month, just before the period. Very strange, but it's been happening ever since! So I was wondering last night in bed whether maybe somewhere your hormones are in a bit of "disarray"? Might be a totally stupid thought, but hey, who knows!

Is there a recognised link 'hormones to pain' as well or “just” to the fibromyalgia or IBS etc.?


To the old dragon:
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I have it in my head that I may be short of magnesium, although where that idea has come from I don't know
Magnesium is used to alleviate cramps in muscles/feeds muscles – so I wouldn’t be at all surprised if your muscles crave for magnesium after all the spasm!


(Even though I work for the NHS, I'm neither a doctor nor a scientist (I'm not British either, hence my English possibly being a bit weird), so please excuse any 'stupid' questions or using wrong words)



Yay - at last a good reason to convince the other half to get asparagus- and loads of it!! I LOVE asparagus, but he doesn't....

Off to find out more about IBT...
 

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