Diagnosis! sorta.

[gordbentley]

well bob gave me another 3 month script of mino! ive been sent to a rheumatologist and im having all my blood work done again. but at least he put a name to my disease. reactive arthritis. apparently when i had my tummy infection 2 years ago (which gave me a sore back) that was reactive arthritis and it cleared up. so now he thinks the joint pain has come back as well as with my digestive issues which are minor hes telling me because ive only been taking the mino three days a week i havnt been treating it effectively. so in two weeks there taking me to the hospital and im getting a serious shot of antibiotics which they say should clear up my problem (crossing my fingers) so im dosing everyday now until i get my iv dose which they say will knock it dead in its tracks. having my fifth round of blood work now for everything all over again. lyme, ESR, SED, RF, anti ccp, ADS DNA? if anyone can tell me what that is ive never had that one, compliment level? never heard of that either, and serum immunoglobin? also never heard or had that one. the other thing he was telling me that i should stop going on this site as he feels it will make my symptoms worse (stress). bob also told me he has scleroderma, now we have been friends for awhile and i never knew or noticed this but when i looked at his hands you could see it a bit (very mild) he says he takes no meds he just keeps active and trys not to over think it which he says he credits to having no progression. so im taking his advice and I will be on here one more time tomorrow just to say farwell once again. ill poke my head in from time to time but to be honest im feeling great all over again right now, and im crediting it to a positive frame of mind (less stress) so I bid you all farewell! I hope you all get out of the rut as well I hope I do as well. I would like to thank Maz, Maz aust, Lynnie, Richie, Jeff, Kate Love, Mother bear and pretty much anyone else I missed on the list as there are alot of you who have helped me gain a positive frame of mind knowing that I’m not alone with this one. However im going to be getting off my computer for a lengthy period of time in order to become a bit more active which i think i should be doing as i spend way to much time on this thing.

I LOVE YOU ALL! and as Maz would say. Peace!! 😀

[gordbentley]

I will be here all day as im finding it hard to leave this place. I need to have a slow withdrawl lol plus i have oodles of homework so im on the computer all day and night, tomorrow will be my last day here for awhile sadly. as i said ill poke in from time to time to give updates but i wont be as engaged as I have been lately.

[motherbear]

Gord

I am so happy you have a diagnosis and a positive outcome. 🙂

We shall miss you but at the same time it is so good to hear you so happy.

You know we will all be here for you should you ever need us but until then take great care and enjoy life.

You so deserve it! 😀

Hugs

Caroline.

[DragonSlayer]

Hi, gordbently:

the other thing he was telling me that i should stop going on this site as he feels it will make my symptoms worse (stress)

Regret that “stress” does not cause IBS, nor did it ever cause ulcers as doctors claimed for so many years. Some physicians just don’t like the competition from the internet; when patients actually talk to each other, they learn too much. For instance they could learn that there are almost certainly no reactive arthritides that last for two years! Giardiasis–perhaps, but others–no way.

Missing a test: HLA B27 (and not “serological, but ELISA or FC; must be accurate). Increased Immunoglobulin (IgA for one disease IgG for another and IgM for good measure, I suppose) will only suggest a disease mechanism, but what can be done about it?

Good Luck, whatever You decide to try,
John

[gordbentley]

I dont have IBS, stress just makes my joints hurt more.

[gordbentley]

and i didnt have joint pain for 2 years i had a sore back for three months and a stomach infection at the same time. pain went away when i was put in abx. then 2 years later i had another stomach upset, but i didnt treat with abx and the stomach upset left after a week then a week or so later my knees started to hurt, progressed from there. now im on abx and the pains gone. dropped from 100mg to 50mg MWF and the pain crept back in over three weeks. upped the dosage and pain went away. i would say its reactive cuz it only ever happens when i get a stomach bug. maybe the bug is chronic who knows but were gunna hit it hard with abx in the next coming weeks. i cut out starch dragon as that seams to be something you stick too i did the hla-b27 testy thing and it was neg. everything is always neg. my disease is pretty mild so im going to remain confident i can beat the $%$%#%$ outta it

[gordbentley]

oh and another interesting factor. stress affects your immune system and ulcers and IBS are known to be caused by bugs. so when your stressed it doesnt cause the ulcers but lowers your immune system allowing bugs like H-pylori to proliferate, thus causing your ulcer. stress is the number one killer but it doesnt kill directly it just affects how your body handles infections and cancer cells. thats why people who are stressed get sick. i got my tummy bug after the death of my sister the first time. the second time around I was laid off from work and unemployed at the moment. thus causing stress thus causing me to get sick. ive made the stress connection and researched a ton. a positive outlook will bolster your immune system and help you kick the crap out of whats “bugging” you

[gordbentley]

reactive arthritis can plague an individual for up to a year, so the way i look at it is i got aprox. 4 months to kill it

[aynurrzepa]

Hi Gord,

In a way it’s good you made up your mind and so positive about it. I sympathise with your friend with sclero. I have one which is and has been mild for the last 30 years or so and I also think it’s also because I was oblivious of the fact for the most part of it (my mum knew but kept it secret for me) until about 6 years ago I got myself diagnosed. I even had two healthy pregnancies and did not get worse after them (or maybe just worsening of ulcerations and slowing of healing process? not sure) but what I am trying to say is that I still started AP. Because although I believe I’m of the lucky lot (if you can call me lucky having aquired SD in the first place!) I still do not want to imagine what MAY happen years ahead, when my healing/regeneration process slows down due to aging, my hormones change, mu immune system regardless of how much I boost it starts getting weaker etc etc… Having mild SD may be deceptive. I cannot say for sure if I will remain this mild or at some point things will catch up with me! I think positive but before it’s late I decided I can do something to prevent the worst. Before I took no meds at all BTW I probably have ulcers I shouldn’t have should I’ve been on some treatment from Raynaud’s (I mean alternative treatment no drugs)… but I always felt uneasy about it thinking:”should’t I be doing something?” Anyway, here is just my little story about mild SD, no meds, staying positive. By choosing AP I think I’ve chosen a positive approach to face the danger and catch the bull by it’s horns. But somethi’g else tells me if I chose to stay positive and have a healthy lifestyle I’d achieve the same or I want to think so. But once the diagnosis is known it’s hard to stay brave and ignore the problem…and such a scary one too…
My firend has Reactive Arthritis as well and she’s been put on abx (Aythromycin not sure re spelling) one high dose a week straight away plus steroids which her doc is trying to reduce to absolute minimum if not take her off them completely. She is doing fine now and although her pain is not totally gone she is pain free most of the days for the last 3-4 months. Her treatment started just less than a year ago. Not sure when her rheumi will take her off meds, but at least he is using abx to treat her whereas many other rheumis she saw just told her either to take antidepressants and stop thinking about it/reading internet (again!) or just accept it and learn to live with it. He is the only one who attempted to treat her with abx which is astonishing for Reactive Arthritis!
Whatever choices we make, I wish us all to come over this problem sooner than later! STAYING POSITIVE & KEEPING STRESS AT BAY IS THE KEY!
Take care and good luck!

[Author]

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