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Sir Oinksalot
Regular Member


Date Joined Sep 2010
Total Posts : 34
   Posted 9/1/2010 10:01 PM (GMT -7)   
Hi all, I'm new here and came by because I'm really struggling with something and am at my wits end.

I've been through the wars with this disease since I was first diagnosed at age 10, Im now 31. My problem is this, why does it always have to get to the point that dealing with the disease has me at breaking point, where Im ready to just break and become a complete mess, before friends and family finally relent and show some compassion?

I'm just getting worn down by the constant attitude by people that Im just being weak, lazy or exaggerating, or its my fault for having done... whatever the flavour of the month is with them, or that dreaded worst of all one: its all in your head.

Trying to tell people how that can be when at age 10 nothing theyve ever thrown at me was applicable then just makes them angrier.

I just cant make sense of their constant dismissal of everything Ive had to go through, which doesnt bug me so much except when Im having a really bad day (sometimes bad year) and well I have to break down before they will admit "something must be wrong".

Any advice?

BTW over my life so far Ive been diagnosed with RA, Psoriasis, Crohn's & Ankylosing Spondilitis.

Maybe I just needed to vent :p

EDIT: just read the post "do people yawn when you say "arthritis"" ... pretty much sums it up... *sigh*

Post Edited (Sir Oinksalot) : 9/2/2010 12:02:30 AM (GMT-6)


JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/2/2010 12:54 AM (GMT -7)   
A few things you've said ring a bell with me, sucks, doesn't it?

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/2/2010 1:02 AM (GMT -7)   
Advice: Try your very best to educate those close to you on the matter, even if it may seem like a futile task. If friends take the mickey then just walk off, they'll soon get the picture. Leaflets on the various conditions/treatment methods put out by medical authorities and charities can be OK, but sometimes they tend to paint too bright a picture of living with these conditions.

I don't really have any more effective advice than this, because I'm pretty sure there isn't a good solution! My biggest pain is people thinking I'm neurotic for taking a lot of pills, or don't really need pain-killers. The imbeciles would be in ER if they had to experience the daily pain of an inflammatory arthritis with fibromyalgia.

Are you diagnosed as having RA with Psoriasis? What made them come to this conclusion over Psoriatic Arthritis? You're RA disease activity must be very specific if they've made such a call!

tc
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (at) googlemail.com (Anti-spam)
Feel free to contact me for any reason, unless you're in sales!

Sir Oinksalot
Regular Member


Date Joined Sep 2010
Total Posts : 34
   Posted 9/2/2010 1:19 AM (GMT -7)   
Thanks for the reply, pretty much tried it all before, just feeling very frustrated atm.

The one I hate the most is: "again!? Were getting tired of this"

I tend to fire back "thats exactly what I was thinking, only... Im the one who has to live through it"

Anyway...

Psoriasis... I was diagnosed at age 12, doc sent me to a dermo who added that to my chart. Dont know why they dont/didnt connect it to RA, it was about 19 years ago now, I can vouch for them knowing virtually nothing back in those days.

Age 21 it was Crohn's added to the list, Age 26 Ankylosing Spondilitis...

Ive always thought of them as the same disease, just different places of the body affected, but doctors love their fancy names and boy do they love to argue with me when I tell them: oh you mean arthritis in the skin, or arthritis in the spine, or arthritis in my bowel... mmm yeah they dont like that, yet they still dont have any decent answers, just pretty crappy ones atm.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/2/2010 1:36 AM (GMT -7)   
Ouch, I think I've found someone with a worse genetic predisposition than me! I think I'm going to stop collecting diseases soon, only so much space left for them, I mean, I lack dementia (mostly) and male-pattern-baldness....

What meds are you using to control the arthritis of the skin/spine/bowel/soul?
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (at) googlemail.com (Anti-spam)
Feel free to contact me for any reason, unless you're in sales!

Sir Oinksalot
Regular Member


Date Joined Sep 2010
Total Posts : 34
   Posted 9/2/2010 2:45 AM (GMT -7)   
Hehe thats a really long story, I hesitate to say it because I know how preposterous it sounds, theres actually no genetic predisposition to any of these diseases, so Ive found. Im having huge arguments with my doctors atm to make them see reason and do the testing necessary to better look after everyone else with these diseases.

What Ive tried (not a complete list, theres been far too many to remember them all, some which are non-existent anymore like Naprosyn and Vioxx):

Steroids (Prednisolone, hydrocortisone injections), Painkillers (Tramal, Oxycontin, Morphine), Infliximab/Remicade, Enbrel, Humira, and Methotrexate. Naturopathy, Acupuncture, Yoga, Exercise, Massage, Physiotherapy, Chiropractic, Chinese Herbalism, Indian Yogic Meditation and Energy Healing, Copper Wristbands, Magnetic Straps, Tens Machines, Diet (restricted diets, vegetarianism, gluten free), Chemical Solutions (DMSO, MSM), Heat therapies, Mineral Supplements, Enzyme Supplements, Protein Supplements, Adrenal Gland Supplements, Pulsed electrical currents through my bloodstream, Colloidal Silver, Magnetic Pulsing.

What Im on now: nothing, no treatments, no supplements, no drugs, absolutely nothing. Since 3 years ago, at that point I had been bedridden for a year and my rheumy said he had nothing left to try and could only offer me morphine which I declined, so I havent been taking anything for 3 years now while I did my own investigation into getting rid of this disease for good. Admittedly the hardest 3 years of my life to date and it was touch and go a couple times.

I figured it out and found and then knocked out the source of this disease in March this year, it took just one night (Involved removing a cache of bacteria in my belly button that my immune system couldnt reach from the inside and I couldnt disinfect from the outside). Since then my experience reversed itself and it has been like living through all my symptoms in reverse, which has been a horrifying hell of an experience, basically every pain and symptom squashed into the last 6 months, one after another, as my body gets rid of it all. I cannot deny how little of the disease is left in me now, I had my doubts about what I did in March and for myself I made sure nothing else was done to interfere with my knowing that that was it. All Ive done in the last 6 months is eat, sleep and go to work when able. Every joint/muscle etc that has so far healed now feels like I never had arthritis there at all, for example the crohn's was one of the first to go and now my digestion feels like it never had anything wrong with it. Ive tested it with everything I could throw at it too, all the foods that set off crohn's, everything that always made it flare up, Ive done them all in the last few months and its been rock solid. Ive felt symptoms that I havent had since I was a kid come back and recover and then feel better than I can ever remember them feeling. Ive had remission before and this is definitely something different.

Thats been the source of my frustration, some symptoms i had over the years were much worse than others and left me unable to move for months, in reverse/recovery it hasnt lasted anywhere near that long, matter of days/weeks as opposed to months/years, so I have missed a lot of work in the last 6 months.

Yet just as my friends and family wouldnt take my word for it when the disease attacked me over the years, they still dont seem to be able to take my word for it that all I need is some time, just time until this last little bit is gone and I can get my energy back (the fatigue i figure will be the last symptom to go since my body is churning through all my energy, using it to heal, I swear to God I feel like Ive grown a new body almost in 6 months).

So Ive been getting the lines of "seen this before", "looks the same to me". My best friend told me he thought I was stupid and crazy and should go see a psychiatrist.

Funny thing is I have always been open to being wrong and investigating any possibility that could lead me to get better, I did see a psych a couple years ago and after one session he said you really dont need to be here and then said some more stuff that made me feel really proud of who I am. I know I am not stupid, if nothing else, the IQ test I sat at university settles that one.

Argh, I know its just a matter of time now, a week or two at most, and ill be able to show them what Im made of when a disease isnt interfering with me.

Just finding it hard to deal with the fact that theyve never been able to take my word for it when I tell them whats happening with my body. They didnt see it getting destroyed so they didnt believe me, they cant see it getting better so they still dont believe me.

Just would be nice to have them on my side for once, or maybe my darker thoughts have some truth to them when I think I need to find better people to surround myself with. With the arthritis being gone soon, its almost a moot point, though its hard to forget the past...

(I am working with a doctor atm to get my case written up for the med journals, she is very excited by my recovery (maybe I should get her to talk to my friends and family hehe) and is dead keen to see it help others, which is promising. Ive also done the same thing to a few other people's belly buttons with illnesses unrelated to the auto-immune ones and theyre all getting better too, though they only started a few weeks ago, but thats promising too)

Its definitely gonna be hard trying to explain my life before now to new people that I meet, or lack of a life to be more accurate, while everyone still believes that these diseases cant be cured.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/2/2010 6:58 AM (GMT -7)   
A cache of bacteria in the belly button? Caused RA, Ps, Ch and AK?

EDIT: I should point out I'm not doubting you or anything, just quite baffled. I mean, pyogenic bateria can infect a joint and induce a rapid-onset septic arthritis, but for an arthritis to be as slowly destructive as RA..... I'm just not 100% sure that I'm understanding you correctly! If I am, then what you're saying is medically fascinating, and I want to know more!

The arthritis could be reactive, rather than causative (an auto-immune response to the bacteria causing onset of RA, rather than the bacteria itself causing the onset via pus) - but if this were the case, then bacteria removal shouldn't cause the arthritis to then go into remission...

So, assuming the arthritis caused by the bacteria was not reactive, but instigated by the inflammatory bacterial pus produced - then removal of the bacteria WOULD cause a reversal of symptoms, but I don't see how the bacterial infection could survive for decades without being killed, or how the arthritis could persist for that long without joint damage. You must have taken a course of anti-biotics at some point at least, and if not, then unless you were immuno-suppressed from before the onset of symptoms, or prior to infection....

(It is perfectly possible, though, to have RA for quite a while and suffer no permanent/physical joint damage. This is not true for septic-arthritis.)

Well, my head is hurting!

Post Edited (JayBespoke) : 9/2/2010 8:11:13 AM (GMT-6)


Sir Oinksalot
Regular Member


Date Joined Sep 2010
Total Posts : 34
   Posted 9/2/2010 10:12 AM (GMT -7)   
Trust me I know how baffling it is, Ive spent the last 6 months thinking about it all, about everything that is documented about the disease and what I have been through. I have also been talking to the people i know about it, I shouldnt be surprised that some think me nuts, but then this is why Im willing to let a Dr poke and prod me, to do all the tests necessary to figure out why I got better.

I would love to have all the answers but I dont have the education nor the access to the equipment necessary to properly investigate what I have done.

I'll post how I came to do this, which is what I gave to my Dr and let you come to your own decision. Again, this is another reason why Ive gone to a Dr with it, I really dont want to be "that" person telling everyone I know better and to do "whatever" to get better, but at the same time I cant just set this aside and ignore what could help other people.

There will be some permanent damage when all is said and done, there has been some disfigurement to bones, which wont affect their functioning much at all, but cosmetically its there to be seen.

This is what I think is happening with this disease:

My initial action was to ignore what the docs said and to assume that there never has been anything wrong with how my body functions, that the immune response is working properly and the problem lies elsewhere. Call it a hunch, but thats how I have always felt.

So the problem is this particular type of bacteria that causes this response, but the bacteria alone isnt enough for a disease, the body can kill the bacteria so then there would need to be a continual source of bacteria endlessly coming in to cause a persons health to degenerate over time. A large quantity all at once would make you visibly sick, large enough and it would kill you pretty fast, so this disease needs to be less than visible, but constant. This is the small river wearing you down over time. For this to happen the bacteria need a safe spot they can multiply in, which your immune system cant reach, but it protected from the external environment as well, from there they can multiply and trickle into your body and grind you down given enough time. Infinite supply of bacteria vs limited resources with which to defend, at some point ground has to be given.

The action of the bacteria I imagine is just something that will steal resources from the body and shorten its life, hence why the immune system fights back, the genes we get tested for are in my opinion the genes responsible for identifying and taking out these bacteria, without these genes our bodies wouldnt recognize the bacteria and theyd just live inside us and take whatever they want. The Aboriginies here in Australia dont have these genes at all and there are no cases of RA ever occuring in any Aboriginal, however they do have significantly lower life expectancies than other races.

The messed up part is the action of the bacteria either interfering with the protein made by these genes, the protein that attaches to a white blood cell to direct to what to attack. I think either the bacteria damage the cells ability to make the protein properly, or perhaps the bacteria makes its own version of this protein (its possible as well that when the bacteria is killed its outer layer protein is set free and causes this problem) and well wherever this "wrong" protein comes from, it is what is causing the white blood cells to attack healthy cells and damage your body.

Having this happen as a once off... no big deal, but as a small constant assault on the body it will bore its way right through you. Different bacteria - different disease.

God I wish I had the lab to investigate that theory. Thats what Ive put forward to my Dr to investigate.

I have had anti-biotics at various points in my life but it never helped with my pain symptoms, which makes sense since if Im right the pain is from very real damage done to your body and will only go away once the body has healed it, but that requires time and the constant nature of whats pouring in prevents that. Where the disease has already passed through is already damaged and the blood circulation is compromised until it can be healed, which limits the effectiveness of anti-biotics that are taken for just a week or two.

I have no idea why the belly button, well that not true I have some ideas but without dissecting myself I cant know for sure why there. I'm pretty sure it has to do with that hole not properly closing or some bit of tissue left behind by the umbilical cord to create that cache and set the disease up to just require time.

Again all reasons why i have taken this to my Dr, I dont want to be messing with peoples health to "see what happens", there are 3 other people who have done this because of me and that was because they asked to, all three have shown their health getting better (one hugs me almost every other week as she finds her body feeling better and better and her head spinning over how its possible, she has no diagnosed disease, just a woman in her forties who has had a few kids and had her health issues put down to wear and tear).

Anyway I know this is getting ridiculously long and I havent even posted how I came to be messing with my belly button, so here that is, I guess I now just have to rely on my Dr coming through with this so everyone wont think me crazy for the rest of my life :p

(copy and paste from what I gave my Dr)

Why I did what I did:

Over the years I had run the same gauntlet many people do, and I had exhausted everything. I was at a stage where I could no longer just wait for “someday” to come, for some new drug or treatment, or what many consider to be impossible: a cure, to be found somewhere off in the distant future. I had fought the disease all my life and never looked at it as something I should just accept. I had tried to make the best of my life despite it, after all there was no other choice.

No one else had an answer that worked. Every person with medical and health training had admitted there was nothing more they could try and nothing that had been tried obviously wasn't effective. I decided to try and piece this together myself.

I found some people talking about bacteria being the cause of disease. Not just arthritis but many others, mainly cancer and MS etc. This was new so I followed it. The main wealth of information on this was from Bob Beck who came up with the Magnetic Pulsing, Colloidal Silver and Pulsed Electrical Current treatments for tackling cancer and aids. More information about his findings can be found at:

http://www.cancertutor.com/Cancer02/BobBeck.html

I tried the protocol and it did help a little bit, but it got me no where near to where I wanted to be. So I kept looking for an answer, namely the answer to where are the bacteria coming from in the first place. I went with the assumption that my body can eliminate bacteria. I've had colds before after all, it's really just about quantity and as long as there aren't too many bacteria and a finite number you can survive and get better. So there must be more to it than just a bunch of bacteria inside my body causing chaos. They need to be coming in continuously for me to have ongoing degenerative symptoms.

I found a clue to that question from some dentists in Sweden. They talked about people who had had root canals done which ended up creating a perfect breeding ground for bacteria inside the dead tooth. With the immune system unable to get into the hole that was drilled, the bacteria could multiply in there free from harm and were spilling into the body. The dentists found that when these teeth were removed the persons disease symptoms were greatly reduced. They also found that taking the pulled teeth and grinding them into powder, then injecting that powder into rabbits would cause the rabbit to develop the same disease the person had. More about them here:

http://www.naturalhealinghouse.com/dentalconnection.htm

Now I just had one more question, where in my body was that tooth situation happening? I don't have any dead teeth, I have never had a root canal. So for me that safe cache of bacteria was going to be somewhere else. That's what I needed to find, and if I found that spot and eliminated the bacteria from it, then my theory was that my disease would stop. With nothing to keep feeding it, it would just dissipate.

I went with the magnetic technology to find this spot. I knew the magnetic fields could penetrate my body and eliminate bacteria, it was just about finding the source spot.

This is why I built an electromagnet that resonated at 7.83hz:

I read a report that observed that bacteria move through mud pools when exposed to the Earth's atmospheric magnetic resonance. The Earth's atmosphere has many resonance frequencies and they change slightly here and there, nothing is static. The base frequency of the Earth's atmosphere is 7.83hz, named the Schumann resonance.

Full article on bacteria and the influence of magnetic fields:
http://jeb.biologists.org/cgi/reprint/86/1/345.pdf

Schumann Resonance:
http://en.wikipedia.org/wiki/Schumann_resonances

I built my electromagnet with the intention of making bacteria move so they would come out of their safe spot. Whether they went into my body properly or out of my body made no difference, since my body can take care of them the only thing that was important was getting them out of their hiding spot to end their cycle of endless reproduction and invasion into my body.

In regards to the safety of my magnet, my competency with electronics was never in doubt, it was just a question of the magnetic field itself. It does affect bacteria but how does it affect me. So I looked into that, my hunch is that it is not harmful to me, phrases like magnetic radiation are misnomers. From what I found it would seem I am right in thinking that, after all we live in the Earth's atmosphere and to assume that that frequency of magnetic radiation is harmful is to assume that the Earth is harmful to us. NASA discovered that to maintain the health of the astronauts they sent into space they needed to install magnetic-field generators that provided this 7.83hz resonance field. Without it they had trouble healing and their health would continue to degrade until they landed back on Earth again. Unfortunately I cannot re-find the NASA article that gave me that information. It would appear that that frequency of magnetic radiation is beneficial to us. So I had no reservations about using it on myself.

With that plan of attack set up all I had to do now was find the hiding spot. Because this electromagnet is only making bacteria move, it would have no effect on my body where the disease was, unless it was the hiding spot. I placed this magnet all over my body searching and nothing changed with each area I tried. I targeted my most painful areas, I targeted the two areas where I broke bones years ago, I targeted every vertebrae in my spine, I tried my head, teeth etc. Nothing changed.

This is how it happened as I remember it. I was lying down holding my magnet, I had been at this search for a few days by this point, and I was wondering where next to try, I was running out of ideas to be honest. I pictured my whole body and where I might try next when strangely I felt like I could feel the whole spread of my disease throughout my body in one snapshot and it looked like a spiral and the center of the spiral was at my belly button. I'll be very honest here and say at that moment I was very confused, I remember thinking why there? That makes no sense. Like I said I was running out of ideas and so I just went with it. I put the magnet on my belly button and after a few minutes I felt something I hadn't felt when I had used the magnet on other parts of my body, I felt a reluctance to take it away from my belly button. That reluctance intrigued me, so I tied the magnet on and went to sleep with it running.

The next morning the only way I can explain it is that something felt different, without any of my symptoms having changed yet I had this feeling of “something is different”. I wore it on my belly button for another night just to make sure that if I was pushing bacteria out, that I definitely had gotten all of them.

That would turn out to be the last thing I needed to do, the only thing left was to recover completely from all of my symptoms.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/2/2010 1:47 PM (GMT -7)   
The story is fascinating, and I'd definitely say you're doing the right things in terms of approaching a doctor. Depending on your success, you might do well to contact a biochemist or regenerative medicine researcher who aren't MDs.

What strength was the magnetic field? I studied 2 years of Electronic Engineering, and would imagine field strength would be a deciding factor of the effectiveness of the magnet, not that I've ever felt better after an hour fully sub-merged in a 2 Tesla MRI scanner. (I doubt you've constructed a larger field, so you had nothing to worry about in terms of damaging yourself - nuclear magnetic resonance has a proven track record of safety - unless there are metallic products inside the body (not excluding colloids or compounds like Iron or Magnesium as nutrients... that's a lie, I'm not sure what a magnetic field does to a colloid.)

You know, I'm almost tempted to try it, given it's easy enough to reproduce, and no harm done either way. I've got to say that the hypothesis is a little convoluted though - basically that a purulent bacteria induced extremely low-level septic arthritis, and was able to survive in the belly button.

My first question would be - if bacteria are buried in the naval, and were not connected to a blood supply (so there's no lymphocyte or phagocyte activity that could destroy the bacteria, nor was the tissue necrotised (dead, rotten, black, etc), then where is its flood supply? If dander etc was sustaining the bacteria, then submersion in water would potentially kill the bacteria (and on enough exposures, it would kill the bacteria simply by laws of statistics.)

I'm always wondering about respiration without the presence of oxygen, it would have to be anaerobic, and the by-products would certainly be toxic, and potentially alcohol...

Anyway, I'm speculating on other reasons that MRI exposure to the naval (or a delayed onset from exposure to the rest of your body) would improve symptoms. Looking at the placebo effect, I'd say it's unlikely to be quite so potent as to force a remission (although of course, possible). Also, i doubt the effect would have lasted 3 years. So, alternatives.... if we assume the arthritis (etc) was reactive (sort of an over-blown defense mechanism if you will) then the bacteria is long gone... there are studies on magnetic waves improving joint pain, although they're never controlled (against a placebo or other product) and they're rarely blinded and randomized.

Occam's razor dictates that the least complex conjecture which is possible, is most likely to be correct, and in my opinion, the least complex solution is that the remission was caused by one of, or a unique combination of, or reaction to, the many known techniques and chemicals you've used to treat the condition. (Note I'm not saying this is what I believe - just what the simplest explanation is.)

Is the doctor you're working with a professional researcher (i.e. published in journals) or a physician in practice? (Or both, of course.)

I'd say from what you've described, the research will certainly be interesting - and if a trial is conducted, should confirm (or deny) the magnetic-field-exposure hypothesis. Either way, it's been fascinating to read (and think) about. I'm currently flicking through both my Rheumatology, Orthopaedics, Biochemistry and Organic Chemistry text books thinking about your story... long term conformational changes in the body from a "slow-release" bacteria actually offers a lot more than a treatment (or cure) for arthritis, I'm thinking in terms of biologic vaccines (i.e, to cure HIV - current research involves sealed molecular frames containing a poison, which detect and bind HIV infected cells only, I'm envisaging that if a bacteria can cause such long-term autoimmune behaviour shifts, then it can in theory prevent HIV-replication within cells... I'm not first person to suggest this, but it gives credence to quite an esoteric area of biotechnology research)

thanks,

James

EDIT - I just realised I completely hijacked the reason you posted, and I'm sorry for that, i didn't do it intentionally. I'm expecting to start my Phd thesis in about 9 months, in electronic diagnostic tools, like integrated bio-labs on a silicon/gallium chip, oh and I have arthritis & fibromyalgia, so it is obviously quite pertinent to me.

Post Edited (JayBespoke) : 9/2/2010 2:50:59 PM (GMT-6)


Sir Oinksalot
Regular Member


Date Joined Sep 2010
Total Posts : 34
   Posted 9/2/2010 2:55 PM (GMT -7)   
Well the hijacking doesn't bother me, truth is this whole thing now isn't about me anymore and is quite literally about friends and family so... Nice to hear some feedback that isn't just "i dont know, sounds pretty weird"

I dont know if the magnet is necessary or just some skill with a scalpel, I do know the location was critical. I used that magnet on every part of my body and didnt feel anything change, once I did the belly button my whole world started to change.

It may sound a little strange but I dont think ill be escaping that label any time soon anyway, but all my life with this disease Ive always been driven to find an answer that worked, Drs telling me from age 10 that ill just have to live with it and manage the symptoms was the worst answer I could think of, so I rejected that from day one and remained determined to find a way to be free. My first symptom areas were pretty ummm personal, and coming before puberty... completely unfair. I have the chance to explore that now, free from pain and functioning the way it was meant to... hehe definitely something that provided huge motivation for getting rid of the disease. Ummm the point I was trying to make was that since I did my belly button 6 months ago (not 3 years, 3 years was just how long I had been drug/treatment free) I havent had to look for any more answers. For myself it is something that is answered to my satisfaction, meaning no drugs, therapies, treatments, diets... basically not having to do anything to maintain my health besides watching out for moving buses.

I admit I dont know nearly enough, my education was cut short when RA, Crohn's and AS had a nasty motorcycle accident added to the mix, but in retrospect I cant complain with how things have turned out for me. My past Im sure will heal itself with time.

Just hard to sit back and say "well thats me sorted, bugger the rest of ya", Im just not that guy.

My Dr is just an MD, I have been thinking about who would be the type to research something like this, though she assured me the first step was to have my case published in any event, still whatever happens I will always be pursuing this until it gets to where it needs to go.

Oh as to strength, keep in mind I did all this with pretty much just a high school degree (besides what I learned from home over the years, I had a lot of time sitting at home with nothing to do so I turned my mind to learning what I needed to), my tertiary ed was cut short way too soon for it to really count. It was delivered by sound file from an ipod to a 100w amp then to the coil, I have no idea who much gauss it produced as I didnt have the equipment to test it, but in comparison to other emf devices it wasn't very strong, but then it didnt need to be in my opinion, it was the frequency and sine wave nature of the emf that was important, it just needed to be strong enough to penetrate a few cms. Then again, ill leave that to someone better qualified to investigate.

Like I said earlier, even though this is harmless I really dont want to go messing with peoples health, I always had my suspicions regarding alt practitioners and many were bourne out, but desperation makes you do things... I would never tell someone to do something blindly, or on faith, I would encourage someone to do their own research into whatever treatment first and make an informed decision, and thats the crux of that issue, there just isnt the information yet. I made the mistake only once of taking a med without researching it first, I was desperate with the Remicade failing to work after 6 more months that when the rheumy said MTX I just nodded and said "ok". That drug made me feel even more horrible, and I couldnt have imagined feeling more horrible at that point, but lesson learned.

In an nutshell for me, I could just forget it all and live my life free now, honestly I cannot compare how I feel now to anything else. I had Remicade work for 2 months about 5 years ago and it felt like a miracle, I was running and energetic and my family and friends were googly eyed about the change, but it only lasted 2 months. I always remembered that feeling though, it became my benchmark, something I was going to put everything into to get back, what Ive found is so much more than I could have ever imagined.

I now find myself in a rather unusual position, all my life Ive felt alienated because of this disease, only other people with the disease understood, but now I find myself alienated from them too... When I read the "do people yawn" post I had to laugh to myself because of the line "if they could only spend one hour in my body then they would understand". Its ironic but that sums up what I feel now towards people with the disease.

Its a weird weird world, I could never have imagined my life taking this path, that disease cost me so much, more than I am willing to say even to close family/friends, I can only shake my head and be thankful I was able to find a way out of hell.

Now its just a matter of letting the good times start stacking up to outweigh what was my past.

Thanks for reading James, I guess I really just needed to vent something bad, I never really caught onto the idea of venting my pain/emotions with the disease, it was never something I wanted to share with people, I just wanted to have fun. This has finally given me something from my disease experience that is worth sharing and while letting the good times stack up, to continue my efforts of having someone properly study why someone got better for once, instead of only being able to study why people keep declining.

darn that felt good to get out, thanks again,

Mike

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/2/2010 4:22 PM (GMT -7)   
Please don't stop posting here in a week and disappear, I'm intrigued! I want to know what happens!
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (at) googlemail.com (Anti-spam)
Feel free to contact me for any reason, unless you're in sales!

Sir Oinksalot
Regular Member


Date Joined Sep 2010
Total Posts : 34
   Posted 9/2/2010 5:04 PM (GMT -7)   
Agreed :p

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/2/2010 5:06 PM (GMT -7)   
Email address in sig, no excuse! ;)
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (at) googlemail.com (Anti-spam)
Feel free to contact me for any reason, unless you're in sales!

Sir Oinksalot
Regular Member


Date Joined Sep 2010
Total Posts : 34
   Posted 9/2/2010 5:34 PM (GMT -7)   
Well theres always one excuse I retain the right to use, but she had better be a fantastic woman and she better be rich :)
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