My story

kevinwittering

I married my present wife in Dec 1987 ( second time around for both of us ). In very early Feb 1988 ( she says I was a pre-owned husband and obviously only had the bare one month guarantee and it had expired ) I woke one morning with a small pain in my lower back. By the end of Feb I could no longer sit up in bed in the morning, I had to roll off onto the floor and push myself up. By the end of March the pain had proceeded up my back to my neck and down to my ankles and feet. Over the years the pain became worse, the worst affected part of my body has always been my neck ( the other joints hurt just as much but the neck pain gets into the back of my head and then a headache develops, when it is really bad it is a migraine type headache ).
The arthritis got worse and worse until in mid Nov 2002 I got cellulitis in my left lower leg and was hospitalised for 8 days. I was given 2 types of intravenous antibiotics 4 times a day whilst in hospital. I continued to take pain killers and Indomethacin throughout as I was experiencing pain in most joints. When I left hospital I continued with the antibiotics for 2 weeks in pill form. I was off work for a total of 6 weeks.
At some point, and I could not pinpoint it I realiased that I had not had to take the Indomethacin or painkillers as I had not had any pain. The absence of pain continued for some time, again I could not say for how long but I believe it was for between 2 and 4 months, during that time I took no painkillers or Indomethacin.
Then one morning I woke with a small pain in my neck and gradually the pain got worse. Now 8 years later it is as bad as it had been before I had the cellulitis.
Has anyone else had a similar experience???
Is it possible that there is something in my body that causes my arthritis that was subdued by the antibiotics??? After all the standard treatment for stomach ulcers used to be a dairy diet, nowadays it is a course of antibiotics to kill off the bugs in the stomach that causes the ulcers.

frogmorton

Hiya

There is such thing as reactive arthritis....look it up and see if it matches what happened to you. then ask your Gp for a referral to a rheumy for a diagnosis.

Unfortunetely it could be coincidence that the pain went off at the same time as the anti b's either way you could do with knowing exactly waht is going on.

Have you seen a rheumatologist/orthopeadic surgeon?

Your story is not dissimilar to a lot of us where the pain goes away for a long time - maybe even YEARS and then comes back again to catch us out.

I hope you get to the bottom of it soon

Love

toni xx

barbara12

Hi Kevin
And a very warm welcome to the forum, Arthur is a strange thing, I have OA in multiple joints, some day I think I am cured, I can go about my business has though nothing is wrong, then a few days later the pain returns.
I think only a rheumy can tell you what type of arthur you have, and take it from there, coming on this forum has taught me how many types there are....shocking really.
I do hope you get the help you need very soon, the forum is a mind of information so you stay with us.
Barbara x

dreamdaisy

Hi kevinwittering, and welcome to our merry little band. Like frogmorton I thought reactive arthritis, but I don't know much about it. It may be worth your while ringing the helpline here and asking for any information they have on that - or post a question on the helpline forum. Whatever it is it sounds nasty, it has blighted your life and you need some answers - and soon! I hope you are as well today as you can be. DD

dorcas

Hi Kevin and welcome to the forum from me too.

You've had lots of good advice from Toni, Barbara and DD. I agree with the consensus.... see your doc and ask for a rheummy referral. As Barbara said arther comes in many forms and it can take time for a definitive diagnosis.... but the starting point is always the same ..... your doc.

Good luck with getting to the bottom of your pain Kevin. keep in touch and let us know how you get on.

We're a caring bunch here and help each other through the ups and downs of having arther... so I hope you'll stay with us! and look forward to seeing you around the forums.

Iris xxx

kevinwittering

Definitely not reactive. At first the doctor thought it was ankylosing spondylitis as the symptoms developed in almost textbook ankylosing style. Never had conclusive proof from any tests that it is.

The only time I have ever had any real respite from the condition is the approx 3 months after having been treated for the cellulitis. It has always got progressively worse up to then and has been getting progressively worse since it started up again after roughly 3 months.

Do think I need to see the doctor though as I have now been on Indomethacin for 23 years and cannot believe that something more effective with less potential problems hasn't been found by now.

Also take Dihydrocodeine but due to the side effects only take 2 in the morning.

dreamdaisy

Morning kevinwittering, I hope all is as well with you as it can be. Something has been niggling at me since I read your posts and this morning I realised what it was: someone posted on here, yonks ago, about being treated for Lyme Disease with anti-biotics and her 'arthritis' (as she thought it was) cleared up, for good. As your symptoms cleared after a similar experience, is this a route worth pursuing? I am NOT a doctor, I cannot tell you what to do, but I did remember this oddity, and it might be worth a butchers. If you do a search on Lyme Disease on this forum, her post and the answers should pop up. I wish you well. DD

speedalong

Nothing to add, Kevin, but just wanted to say welcome to the forum.

Speedy

kevinwittering

Been to the doctor, just had a new set of multiple blood tests.

Doctor seems reluctant to even contemplate that it may have been the antibiotics that made the pain go away for a while. Suggested that it may have been the fact that I had been bedridden for a week that eased the pain. I then pointed out that I am at my very worst in the morning after having been in bed for the night. I dread ever being at the point where I am immobile at all, everything siezes up.

As far as the blood tests go I am afraid they tend to be checking the balance of the bits that should be there and the bits they always check for rather than trying to see if there are any unusual things in my bloodstream that shouldn't be there.

traluvie

Hi Kevin ...

I have just read your story..
I suffer the pain in my neck the same way you describe the only difference being is mine can go away for a few days and return... before i had the steroids it was every day .. along with other joint pain too...
I am still under investigation, and my symptoms have only been since september so i am still new to this myself.. i just felt i can kind of relate to how you are feeling..
I really hope you can get some kind of peace of mind soon, i know how that feels.. the not knowing... given time though hopefully things will come together..

Wish you well, pls keep us posted..

Tracy
xxxx

kevinwittering

About time I updated this. I purchased over the internet enough Amoxicillin to be able to take 500mg 3 times a day for just over 6 weeks, I completed the course in early February. Much of my pain disappeared after about 4 weeks and improved more after that. Was not quite as effective as the first time but then the first time I had 2 kinds of antibiotic and the first 8 days was intravenous, the fortnight after was pills.

I went back to the doctor after I had completed the course and talked to her about it, she sent me to see a rheumatologist who, in fairness, said that he didn't know why it worked but if at the end of the day giving me a long course of strong antibiotics fixed me for a few months then that was the thing to do. He sent me for a series of blood tests ( including Lyme disease ) and some x-rays, these have all turned out to be normal except the lyme disease test but that apparently can take months to get the results for.

So I am a lot better than I was but already I notice that little niggling pains are starting up, nowhere near as bad as they had been so I am lucky.

I have another appointment to see the rheumy on Aug 4th, may get the results for lyme test by then.

traluvie

Hopefully then you may have some answers..

Fingers crossed and let us know how you get on..

julie47

Will be available for pocket duty on 4th august if needed
I am pleased that you are feeling much better too.
In the meantime take care

juliepf x

TheOnlyKey

Hi Kevin. Hello to everyone I joined a few days back and have been busy posting. Thank you to Dream daisy for advising me to check this post out.

I have reactive Arthritis and go through a lot of what you have gone through. I have pain in my left collarbone and it runs up the side of my neck. Pain in my lower back and both feet are inflamed. This comes and goes. There are no tests that eliminate reactive arthritis but it follows an infection, From an S.T.I or food poisoning. Something as small as a bad stomach from a dodgy curry that went away long before the pain started could be responsible.

Like your pain. Mine is a lot worse in the morning because I have been still for hours. Once moving my joints seem to ease off through out the day. Your GP may rule out Reactive arthritis because there are no other symptoms such as Conjunctivitis, Uveitis, Balanitis, Fever and other symptoms. I don’t have or have never had any of these but I know its Reactive because of an infection 1 month earlier.

The thing that struck me the most about reading your comments. The antibiotics. A university in Florida carried out studies on people with reactive arthritis giving approx 30 people a long term course of antibiotics and giving another 30 a placebo. They found that the group on the antibiotics had significant improvements in pain and mobility and some were showing no symptoms at all. Were as the group on the placebo, conditions stayed the same.

Sorry I am trying to shorten this because I could type for hours. The theory behind reactive arthritis is there are dead cells still in your system after the infection was killed off. It is your immune system over reacting to something that is no longer a threat. Thus your immune system attacking healthy tissue.

The studies in Florida were on a small scale and when reading this article it said that more research is needed. But what you have done might just be more proof that it can be kept at bay. I am not saying you have reactive as I saw that you think its not. But reading what you wrote made me also think that’s what is sounds like as well, just like a few others said.

Anyway all the best.

TOK

dreamdaisy

I think I am right in saying that the majority of athritises are auto-immune based, ie the immune system is triggered and it reacts by attacking the body. I have a history of eczema and asthma (both due to an over active immune system) so my arthritis should not have been the surprise it was. I didn't know enough about it then, but I am way better informed now. My first GP didn't know enough either, resulting in five untreated years. Mind you, I would give anything now to go back to that time when it was only the one knee. I did not know how lucky I was, now I do. DD

PatriciaH

Hi Kevin,

You may find the 'roadback' website interesting. They have a theory that giving antibiotics in low dose over a long period of time helps with inflammatory type illness. I am looking into it at the moment. The antibiotics given are minocycline/doxycycline/tetracycline. The ones given to young ones for acne. Apparently, the theory is that bacteria called mycoplasma live in our cells which set our immune system off. (not describing it very well I don't think! Lyme is included in this. Anyway have a look at the website and let me know what you think. It is interesting reading especially as you have had such a good result with the antibiotics already. There is a book called 'The New Arthritis Breakthrough that you can buy that tells you all about it.

Patricia x

kevinwittering

Patricia, thanks, I bought the book " The New Arthritis Breakthrough " which includes " The Road Back " a while ago and found it very interesting.

Saw the rheumy on 4th Aug, all tests normal including Lyme disease. Have no indication of any arthritis. He wont give me antibiotics as they are not a recognized treatment for arthritis. After discussing the matter he would be quite prepared to prescribe gold injections, cortisone or methotrexate as they are all recognised treatments for arthrititis despite the fact tat they are all also know to have bad side effects, even life threatening side effects. Didn't like to point out the absurdity of the fact that he was prepared to prescribe these medicines for a disease he says I haven't got but wasn't prepared to prescribe pills that have worked twice in the past and it shouldn't matter that they are not for arthritis since he said I hadn't got arthritis, well no test ever carried out on me has ever shown anything other than perfectly normal.

Reference to illegal off-prescription drugs removed

Will try to keep you updated.

Direct medical advice removed, House Rule 3

PatriciaH

Hi Kevin - Lovely to hear from you BUT sorry that your rheumatologist won't contemplate giving you the antibiotics. Actually, he should be able to because they are classed as a DMARD although most of the profession don't 'buy into' the infectious theory.

I visited my rheumy in September and he has prescribed them for me. I have to say he is fabulous and very open minded. I have been given 'Aknemin' which is a version of minocycline. The body utilises it better than the tetracycline apparently. I have since found out that the best one, here in the UK, is Acnamino which is minocycline modified release. The tetraclycline will be a good starting point though I am also taking msm/vitamin c powder which is meant to help greatly with inflammation and getting rid of the toxins the antibiotics kills!!!

Do you have a GP who will listen to you and prescribe Kevin?? Do you visit the Roadback website? They have some brilliant information on there. Let's hope this helps us on our road to recovery. I have only been taking for a few weeks but do think my knees are going down very slightly. Only steroids have helped so far but as you so rightly point out they have their own set of side effects. I now have osteopenia because of them. I have been in a flare in most of my joints for over two years now. Have tried Sulfasalazine, Plaquenil and have been taking steroids for a year and a half!!!

I am really hopeful that this treatment works. There is also a Dr Sinnott you can contact by email, who is the roadback volunteer Doc, who will answer any queries you have.

Please keep in touch and I do hope your 'roadback' journey is a successful one.

Patricia x

dreamdaisy

This is interesting reading. I reported to a rheumatology nurse on Wednesday that I had felt a deal better in myself arthritis-wise when I stopped the humira and meth for three weeks whilst on a course of penicillin. I also mentioned that I knew I was not alone in thinking/feeling this. She snorted that it was rubbish, that there is no empirical evidence that anti-bios help, so I think it's time I broadened her education , yes? Good luck Patricia and Kevin, I hope whatever routes you are following help you. DD

PatriciaH

Dear DD,

Thank you SO much for your kind words. I really appreciate them. I am certainly not against conventional medications but, apart from the steroids, none have helped me. In fact they have caused even more problems!!! It is interesting that you also felt better when taking antibiotics. I have heard this many times now. There must be something in it....

Lovely to 'talk' to you

Take great care

Patricia x


Dear Delboy,

I certainly understand your point of view and realise why you are so fed up with these so called cures. As I said previously I have nothing against conventional meds BUT they have done very little for me, apart from the steroids, and I don't want to stay on them forever at high doses because of the side effects.

I also don't believe diet alone can 'cure' us - nothing can - not even the antibiotics. There isn't a cure yet. Let's hope for the future. I do think a healthy diet can help though and certain supplements. As far as the Arthritis Breakthrough book is concerned I think it is very informative and Dr Sinnott who writes a part in the book will actually answer any queries by email or phone 'for free' so I don't think that can be called money grabbing can it??

At the end of the day we are all just trying to find a way to help ourselves feel better and support each other.

Take care

Patricia x

kevinwittering

delboy wrote:

" The New Arthritis Breakthrough " yet another money spinner for the author leeching money from desperate people who will try anything to rid themselves of the perfidious disease.

The Margaret Hills book is also another of this genre.

For goodness sake if a diet alone worked I wouldn't be poisoning my body with all sorts of medication to try and halt the damned thing.

Pi$$ed off with these so called cures.

Dear Delboy. I read this book after twice having had a DRAMATIC improvement after taking a strong course of antibiotics. I think that the NHS should get a few copies for their so-called experts to have a read. They may be surprised.

As for antibiotics, well what can I say, they are "generally" harmless, they cost a fraction of the other meds that generally have horrendous side effects and who would have guessed 30 or 40 years ago that a doctor would nowadays give you a course of antibiotics rather than put you on a dairy diet when you present with stomach ulcers.

theresa4

Hi Kevin

Antibiotics long term are not good for anyone, I had meningitis 16 yrs ago and for 2 years following this I was ill so continually taking antibiotics for infection after infection. I had no immune system left to speak of and it took a long hard 2 years using herbal and aromatherapy to help me rebuild my immune system. I dont say its not good for everyone as we are all different. My RA gets much worse when Im on antibiotics and have to come off my mTX.
I can understand where delboy is coming from after I myself have spent a fortune in this cure and that cure this aid and that. Im already wheat free for other reasons and that dowsnt help etc... Not forgetting the caring sis in law and my friends mum who bring me new articles of the new cure and get iffy if I say Ive had enough. Lets face it none of them are cheap and I hink eventually we can get sc eptical.
Sorry my hands are very achy today probably fighting my depo steroid please excuse any mistypes.

Hope you find the informwtion and help you need

Theresa

PatriciaH

Dear Delboy,

Boats and Snakeoil aside I absolutely respect your treatment decisions and am glad that you respect mine

I must however point out that the Dr I was talking about is a GP who is not selling anything at all. He just believes in the Antibiotic Protocol, believes it works and gives advice. That's it.

These antibioitcs are only taken three times a week x 100mg. Minimal amounts - and yes probiotics are a must. None of us know if the meds we take are going to work. We can just try our best to heal ourselves with the knowledge we have and help from the medical profession.

Keep well.

Patricia x

kevinwittering

Have persuaded my Dr to try Doxycycline 100mg once a day for 50 days. Started a week ago and has had some effect already. He said he would rather me be on that than the Indomethacin that I have been taking for the last 23 years.
Hopefully the effect will increase and I will start getting some quality of life back.

Hope everyone had as good a christmas as possible.

frogmorton

Oh Kevin the vrey best of luck and please do let us know how yo get on.

Thank you for your Chrsitmas wishes and l hope yours has been a good one too x:-)

Love

Toni xx

kevinwittering

Have now been on the Doxycycline for almost 5 weeks and now manage to sleep for about 4 hours before the ache in my shoulder wakes me and I have to roll over ( prior to taking the antibiotics I could never get past an hour before the pain was so intense it woke me and I had to roll over ). I think it is getting better slowly day by day. The pain has lessened in my other joints as well, knees feel better and just not as achy pretty much all over.

One other point though, doctors have said I have " arthritis " ( generic term for pain in my joints ) for 24 years but have never ever found any indication in either blood tests or x-rays so he has now decided to call my condition " fybromyalgia ", strangely the change in name has had no effect whatever on my pain, should I change my GP to one who can find a name for my medical condition that actually make me feel better ???????