Home Forums Personal History and Progress Threads How it all began for me!

This topic contains 30 replies, has 1 voice, and was last updated by  maz.aust 5 years, 7 months ago.

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  • #300408
    maz.aust
    Participant

    I broke my ankle 29 Nov 06 – tibia & fibia, operated on 30th Nov plates & screws in, released from hospital 3rd Dec —- 8th Jan 07 had the cast taken off, no probs, no infection, nice and clean. 11th or 12th Jan 07 went for a swim (100 yards) in the Murray River.  2 days later my first PR flare (although I didn't know it) swelling on the back of my right hand near the index finger – much pain! lasted 2 days and went away.  14th Jan 07 on the way home from Xmas hol's – noticed my ankle was inflammed and sore, went to the hospital that night – diagnosis, severe infection; swabs taken, intravenous antibiotics 24/7 for 2 wks, then a pic line went in until Easter.  

    Between Jan & Mar had another 2 PR flares, just my hands again.  Then when I went into hospital to have the plates & screws removed and both hands flared (and on a scale of 1-10 on the pain threshold my ankle was a 6-7 and my hands were a 9!).  They didn't know what was going on – I had every test known to mankind because they thought the infection was spreading (although I didn't spike a temperature at any time) diagnosis from infectious diseases hospital here said – severe staph infection of unknown origin, definitely not golden staph!  Anyway to cut a long story short – had the plates & screws out 2 days before Easter 07 – came off the antibiotics in Jul 07 — so my ankle was great, but my PR had started to take off.

    Between Easter 07 & Nov 07 I was getting flares every 5 wks, lasting for 3 days of excruiciating agony — and it could move quickly as well eg: I could wake up with a flare on the back of my right hand and within 2 hrs my hand was OK and it moved to my right biscep, by dinner time my arm was OK and it had moved to my left thigh… strange thing this PR, even my GP couldn't believe what was happening, although he did see it for himself over a period of 4 hrs – hand to thigh to arm & back to other hand.. He said 'if I hadn't seen it for myself I wouldn't have believed it'….. how true!

    In Nov 07 he sent me to a rheumy who said 'take these, by the way they may make you go blind in a few years', and that was before he said hello!

    The 2nd rheumy I went to said 'I have no idea what to do, you have PR syndrome, but we don't know how you get it so don't know how to fix it'.  

    The 3rd rheumy said 'you have PR and it is very rare'.  She explained in detail what she thought it was and what I should take to try to alleviate the symptoms, ie plaquenil, methatrexate etc – when I asked why I should she told me it would probably delay the onset of RA —- although my bloods showed negative for everything at that time. 

    Me being me, I refused to take anything and went on the net to find out for myself what PR was.  I searched and searched, finding people along the way who were pointing me to seek alternatives to the norm….. finally Lyn-G contacted me and told me about a doctor who's surgery just happened to be about 10 min from where I lived. 

    I went to see Dr D and the 1st appt took an hour – the 2nd appt took another hour, lots of blood-work done more medical history (although there really isn't much), and she was very interested in the fact that I reported I hadn't had any of the normal childhood illnesses, ie measles, chickenpox etc – the 3rd was when I gave her a full history of everywhere I had been in the world, all the animals & had been in close contact with, what illnesses I ever had, what operations I had undergone etc etc etc.  The tests were back and she concurred that I hadn't had any of the normal childhood illnesses which she felt was in itself unusual.

    She told me about a gluten free diet as well as trying to cut out a lot of other things like 'pork, nuts etc etc' and like LynG suggested I drink at least 3 ltrs of boiled water a day to detox.  She said, given my history, it was entirely possible that I had picked something up in my teens or 20's.  She believed it was dormant lying in wait for the right conditions to present themselves —- her guess was the infection I got in 2007.  She told me to make an appt with a naturopath she consults with and come back after I had seen her.

    Since I started watching what I was eating/drinking I have only had one minor flare that lasted just under 24 hrs –  one flare in the past 3 mths, that is a record for me.

    On Mon 26/05/08 had my appt with the naturopath and she after a long consultation found 2 bacteria lurking in the background – the first was rickettsia and one other, that was it.   

    So as of today we know what it is and hopefully next Mon when I have my appt with Dr D I will find out how she plans to get rid of it or put it into remission…..

    Will keep you updated.
    Maz, Aust

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313525
    maz.aust
    Participant

    Mon 02/06/08

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313526
    maz.aust
    Participant

    6th June – the herxing begins (I think)???

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313527
    maz.aust
    Participant

    18th Jun 08

    It's been 2 wks since I started the antibiotics and I am definitely starting to herx – the aches are all over the place but it was only on Mon I was in any sort of real pain.

    I guess this is good because the meds are working!

    Back to my PR GP on Thursday (tomorrow) for the next lot of antibiotics.  Looking forward to that.

    My attitude now is – if I am herxing it's working! and that is great……….

     

     

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313528
    maz.aust
    Participant

    20th Jun 08

    Back to Dr D for my next appt – happy to report all is very well, the herxing is minor.  As well as the Klacid I have started Amoxicillin (2-1/2 ml Mon & Thu morning) — today is Tues 24th and all the herxing is gone and I feel great.  Need to up my intake of pure water though, can't seem to get 3 litres of water down…..lol

    Carrying on as usual – back again in a month for the next antibiotic, and yes it means I will be taking 3 – lucky everyone else who is only taking minocin.  Must ask Dr D why that is next time I see her.

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313529
    maz.aust
    Participant

    28th July — Final appt with Dr D

    All going really well, bloods are great, only a couple of really minor flares lasting about 2-4 hrs but I don't need anything more than 2 panadiene forte when it starts. 
    My AP therapy is:
    1/4 Tablet, Clarithromycin : 2-1/2 mls, Amoxcillin : 1/2 tablet Rulide
    Mon & Thur

    My next appt with Dr D is in 4 wks time – when bloods will be taken, and assessed.  All going well I will leave with scripts for 12 months and will only need to see her once or twice a year to monitor my progress.

    Dr D has offered to write to my own medical doctor to advise him of her findings, and method of treatment asking if he would be interested in taking over my treatment from then on. 

    I have been so lucky to have found Dr D through Lyn-G (a big thank you to her). 

    I sincerely believe that I am very fortunate to have been able to research, both the the disease and possible treatments available, quite quickly over a 5 mth period because of the people I met along the way, people who pointed me in a few different directions and actually led me to the place where I am now.  I know enough to make an informed decision about my treatment path with the full knowledge and support of my medical team, and have been strong enough to say no to a couple of rheumatologists along the way.

    Personally I believe AP is the way to go.  If it gets my PR under control that is terrific and so far so good. 

    The most important thing for me is that I know I have chosen the right path.

    Maz

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313530
    maz.aust
    Participant

    MY ‘AP REGIME’

    Mon & Thu
    02/06 x 62.5mg Clarithromycin
    08/06 added x 2-1/2 ml Amoxicillin (= equivalent to 25mg)
    28/07 added x 75mg Roxithromycin

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313531
    maz.aust
    Participant

    In Feb 08 when I came back from Xmas holidays I earnestly started searching and then researching what I had.  The first thing I discovered was that what I had was just one of many AI diseases and it didn't take too long to convince me I had it for life and there was no cure.  Once I accepted that fact I began searching for a way to treat the symptoms.  At this early stage I was just looking for something to ease the pain.  What I found was a therapy that could actually lead to remission. 

    I started AP on Jun 2 and although I am not taking the usual mino I am on the program.  I chose to go onto AP therapy before I read 'the book', but I had read a lot on the subject of AP v/s traditional meds prior to making my decision.  My doctor explained to me about 'herxing', she also said my lab results could rise before they drop.  I really didn't care, all I focussed on was that this was a way to get into remission or at the very least make my own symptoms bearable so I could get my life back.

    I started herxing when the 2nd lot of antibiotics were introduced and the herxing definitely got worse when the 3rd and final lot were introduced.  Since late February when I changed to a gluten free/dairy modified diet I have had 2 minor episodes of what I call actual pain (lasting about 2-3 hrs).  The herxing fluctuates between an ache and mild pain and it is attacking places I have never ached or had pain before, so to my mind the treatment is working.  My doctor tells me that herxing can go on for up to 3 mths before it starts to wane so I should begin to see definite improvement in about 4 wks time.

    Since I started down this treatment path the pain levels are not nearly as bad as they were, prior to AP my pain levels were at the 'please kill me & put me out of my misery' stage; on a scale of 1-10 my pain was about a 9-1/2 and nothing but nothing helped (not even morphine) and it went on for 3 full days, so right now I am feeling pretty positive about all this and glad I have chosen this plan.

    The main reason I started on AP Therapy was that I had absolutely nothing to lose,  the antibiotics wouldn't hurt me, plus I wouldn't be trying to undo the side effects of some other medication and the big plus for me is that my own immune system wouldn't be destroyed in the process whilst I gave it a go.

    I believe it is up to us to research, ask questions and finally make our own decision as to what we are and what we are not prepared to do (hopefully with our doctor's or health care professionals' support and monitoring).  For me my treatment plan is  'diet' and 'AP therapy' — my long term goal is to get into remission within 3-5 years.

    Don't forget you are probably going to feel worse before you get better but remember your goal – to get better – or at the very least to be better than you were.

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313532
    maz.aust
    Participant

    Well it's the 7th Oct and I saw my naturopath yesterday for an update on how I am going and why I seem to have been flaring recently (over the past couple of weeks)  

    She believes my system is now used to the 2-1/2 ml amoxicillin so wants it upped to 5ml mayby 3 times a week instead of 2.

    She tested for Lymes again (zero result) and still believes the main problem for me is the ricketssia bacteria — and it is this which is the main culprit to my PRA.  Interesting it popped out of hiding when I had the infection back in Jan 07.  I am still testing negative for strep and most of the other normal things found in PR & RA patients.

    For the past week I have had a sore right forearm (just above the wrist) and it shifts from left to right and back again without transgressing to my hand or anywhere else, this for me is a totally new thing.  Yes it is sore, but not like what I call a flare, it just aches constantly sometimes a little worse when others.  I wonder whether I should go back to my PR GP soon or wait for my appt which is in 2 wks time?  I have to get new blood tests done prior to my visit and really don't want to get it done whilst I have any inflammation because it could corrupt the results.  Lyn said it was really difficult to trace what was triggering my PRA as my PRA is definitely connective and soft tissue affected and not joint affected.

    I just wish I knew what this new thing was —- it doesn't make me feel too great being that I am on AP and doing all the right things and now this is a new symptom I have to deal with.

    Oh well –  life goes on and I will deal with whatever it throws at me — I am probably just having a blonde day (lol) because I am getting the flu.

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313533
    maz.aust
    Participant

    22/10/08 —

    OK new update —

    Saw my PR GP yesterday, discussed my blood tests which are basically all as before, nothing untoward, my RA factor is 160 but personally am not bothered, I expected my readings to go up – I am about 3 mths into AP.

    What is disconcerting though is my herxing/flaring or whatever it is in my forearm, it just doesn't go away – we figure the virus infection I had 4 wks ago when I was on strong doses of penicillin caused the existing bacteria to run rampant — I have a prosthetic in my right hand as well so my guess is that the little buggers are hiding underneath/around there –

    My doctor has decided I should hit it with 3 days of amoxicillin twice a day, then 3 days a week once a day plus still twice a week for the other abx for 2 wks………. if it is the wrong meds I should get worse not better…..Plus she wants me to be available to see her together with my naturopath for a consult to see if there are any bugs they didn't find in my system…. that sounds to me like a good plan, so I started my first 5mls amoxicillin this morning.

    I have absolutely no problem with the whole 'you have to get worse before you get better' theory as long as the goal is still there…………

    Plus now looking seriously at Lymes even though I keep testing zero for Lyme.

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313534
    maz.aust
    Participant

    06/11/08

    Since starting the 3 x abx in combination (pulse dosing) and upping the amoxicillin itself to 5mg Mon Thu Sat I have really started to herx, ie get pain where I never had it before, and it seems to be hovering around my right wrist area (where I have a prosthesis)  – the pain now is really something else, constantly sitting on around 5-7 on the painometer.  I am trying to control it by taking 50mg Diclohexal morning & night combined with 2 panadiene forte.  It is starting to wake me up at night, but I have only taken another diclohexal around 3-4.00am and gone back to sleep…….. this herxing has lasted around 4-1/2 wks now ? some days really sore and others just a permanent ache.  This is different for me I usually flare for 3 days if I get a flare and then am totally pain free or since starting the AP I herx for 2-3 days then am totally pain free – being in pain all the time is a new symptom for me …..  I tried the 'whole lemon drink' thing whilst I was away last weekend and there is no doubt it did help.

    About a week ago I started to get ?uticaria? or ?hives? and must admit am a little worried because that is a reaction to the abx and I have no doubt that it is the amoxicillin that is doing it ? so off to confirm that it is what I am allergic to next Thursday – hoping that Dr D has an alternative abx planned. 

    I had hoped by now that my meds would be stable and Dr D would have handed me back to my own GP for monitoring and continuing treatment ? but obviously not to be – In itself I don't have a problem with that but hope however that we can get this under control before Xmas because I am going on hol?s for 3 wks over the Xmas break 'til around 15th Jan.

    This morning I am actually pain free again so I am presuming that the herxing has stopped ? I thought it would as I haven?t had any amoxicillin since last Mon …….. if I am right my next herx should be Mon when I take my Rhulide & Klacid ….. I have decided not to continue the amoxil for now.

    Even though I am going through what I would call a bad patch – I still have my eyes firmly planted on the goal – and whatever I have to do or go through to get there it's OK……. the alternative is a far worse option for me because that would mean I would just give in and accept whatever comes – and that thought is definitely not acceptable…… it has always been my intention to be pro-active and the herxing actually gives me hope that there is a light at the end of the tunnel and that light leads to remission.

    Will keep you updated….. 

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313535
    maz.aust
    Participant

    Had a joint consultation with Dr D & L (naturopath)

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313536
    maz.aust
    Participant

    5th Dec

    It's now been a couple of weeks on the new abx regime — and I must say apart from a couple of hiccups the herxing is finally easing up.  So steaming ahead to my goal and mentally in a place where I can handle whatever is thrown at me in the process …. might not be quite so blas

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313537
    maz.aust
    Participant

    20th Jan 09

    Update:
    Spoke too soon, by Xmas day the herxes were quite bad and even though I understood what was going on I was really looking for some pain relief.   In anticipation of this happening I had all my pain meds & scripts with me, although I was loathe to go down that track again.  I had spoken many times to Annie about MSM, and researched as much as I could about it, and wondered if it would help with the pain from herxing.  In anticipation of some real herx pain I had a case of my own lemons and a kilo of MSM with me.  On Xmas morning the aches and pains were gaining momentum so I decided to give the MSM a go.  I already knew that the 'whole lemon drink' would ease the herxing but wasn't sure about the MSM.  Anyway, I started on 5 grams morning and night increasing it every 2 days to 20 grams — by the 6th day I was amazed when I knew I was herxing and realised I was relatively pain free; it only got better from there'  it is now 20th Jan and I am still relatively pain free.  I have to say a big thank you to Annie (Cairns) for putting up with all my questions just before Xmas and giving me the inspiration to just try MSM. 

    I couldn't get in to see my doctor before Xmas so my next appt is 2nd Feb, I am hoping that she will be as pleased as I am with my progress.

     

      

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

    #313538
    maz.aust
    Participant

    06/03/2009

    Its been a couple of weeks since I saw Dr D – she ordered more blood tests and rang me worried – my numbers have climbed to RF-260 & CRP-53 …  I just don't get it, I know I was herxing big time when I had the blood tests done so that can account for some of it but since then the pain and aches all went away spontaneously an I feel great … how can I get such high readings ??  Anyway – she send me a referral and & had more blood taken yesterday – so will wait with baited breath to see what it is this time. 

    Dr D said if my readings go down dramatically that's OK, but if they are the same or about the same I need to have a joint consult with her and the Naturopath to see if there is anything else lurking in the background that needs to be addressed.

    Will update next week when I get the results.

    I am still thinking Lyme may be the culprit — need to see if there are any labs around that will test for it.

    Dec07: Diagnosed PRA, (Fibromyalgia & suspected Lyme):

    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2016: ABX Mon/Wed/Fri (stared AP 2008)
    1 x 150mg Roxithromycin(Biasig), 1/2 x 375mg Cefaclor (Ceclor CD),
    1/2 x 150mg Clarithromycin (Klacid), 1/2 x Fungilin, 1/2 x Ciproxin
    All off days Probiotics

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