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  • #313539
    maz.aust
    Participant

    11/03/2009

    Got the results last night — CRP is 18 (was 53) RF is 62 (was 260) so that is great news for me … 2 things are for sure, one I am still PRA and it hasn't progressed and two the jumps were as I suspected related to a big herx I was having on the day the blood was drawn.

    I am stoked with the results …. !!

    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

    #313540
    maz.aust
    Participant

    Mar 09,

    Not much about the PRA right now, but

    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

    #313541
    maz.aust
    Participant

    2nd Apr

    OK – Had my joint appt with Dr D & Lynn (the naturopath Dr D works with) yesterday and Lynn found a bacteria in my system that wasn't there before and is more than capable of loving the kidneys & pancreas …. can't remember the name of it though.

    The result is that yet another change to the abx is called for so now I will take off the Doxy and add Ceclor CD instead.

    Need a check consult in a month.

     

    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

    #313542
    maz.aust
    Participant

    Ok 22nd April 09

    Went for the MRI to check the pancreatic duct on Mon but due to my claustrophobia I just couldn't do it;  call me chicken, call me a coward, yes I am – but, I can have a CTscan instead.  I am not really concerned as the MRI was only a quadruple check to satisfy the doctors that it was in fact idiopathic.   

    Anyway on to the more pressing stuff —
    I am scheduled to have a hyster on 13th May and my surgeon wants me off the abx for at least 3 wks prior – so off as of 20th.  Don't know if I will go backwards being off for more than a month, but if I do I can start again.  With the recent change from Doxy to Ceclor CD to get rid of the new bacteria found in my system there hasn't been time to trial it and now having to come off the abx in preparation for the op will have to put things on hold for the time being.

    Not that I had any doubts my PR GP would put me on the right meds just for curiousity sake I looked up Ceclor CD v/s mycoplasma bacteria and found it does do the job as an alternative abx so am glad about that.  Don't know if she wants me on it permanently or whether she just wants to get rid of the bacteria found, must ask her next time I see her – which will be mid May.

    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

    #313543
    maz.aust
    Participant

    June 3, 2009

    Still off my abx home recouperating from the hyster — going stir crazy, you can only read so many books, but back to work next week.  Other than oozing blood post op which required 600 units of blood and resting the op went really well and the blood loss was due to my platelets not doing what they were supposed to do — both my specialist surgeon & Dr D think it could be due to either my disease or the AP ?? don't know, all I know is that I am glad they had the 600 units of blood in the fridge. 

    Looking forward to resuming my abx next week – expect to herx (yet again) but hey what's a few pains for a short while when my quest is to get this thing into remission.

    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

    #313544
    maz.aust
    Participant

    17th June 2009
    Back at work and feeling great & started back on my abx regime on Monday.  Spoke to Dr D who said she wanted me to continue with the abx as is then have more tests in a month and probably go back onto the Doxy then.   No herxing as yet, so I am grateful for that at least.

    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

    #313545
    maz.aust
    Participant

    14th Jul 2009

    Had my first appt with Dr D since I came out of hospital yesterday.  She is very pleased with where I am, even though I still had the remnants of a herx yesterday when I saw her.  The thing that impressed her the most was that I hadn't had any signs of an actual flare, and being that I was off my abx for that length of time as well as having a major operation & being under an anaesthetic, which in itself plays havoc with your system, she believed that this is a great result.

    The thickening at the back of my right heel has been confirmed as a 'nodule of sorts' but Dr D is convinced it happened because I had to come off my abx for such a long time, she also said it isn't your normal garden variety of nodule and should go down with a tweak in medication. 

    It was interesting to note that Dr D made a point of saying that in reality what I had was 'connective tissue disease' that manifests itself as PRA plus Fibromyalgia and a little bit of that, but no clear cut symptoms of anything; but the majority of symptoms always point to 'connective tissue disease' – in other words I am a medical 
    conundrum!  Personally I don't really care what you call it as long as it can be treated with AP. 

    As I thought I am now off the Ceclor CD and back onto the Doxy, blood work was ordered and taken and my next appt is late Sep with new bloods to be done just prior to seeing her. 

    I can only imagine what physical state I would be in by now if I hadn't been pointed in the direction of AP & I will always be enternally grateful to everyone that has helped me over the past year.  I am truly thrilled with this result and am still on track to achieve my goal – ie to get into remission within 3-5 yrs.  

    Edited to add :
    11 mths in, the proof of the pudding is in the eating and the results show that AP is working, albeit a touch slowly.   
    So I didn't get to 12 mths without a flare, (almost though) it doesn't matter, what AP has achieved is nothing short of amazing.  

    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

    #313546
    maz.aust
    Participant

    27th Jul 09

    OK, back on the Doxy &

    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

    #313547
    maz.aust
    Participant

    09/09/09
    Here I am again, writing about another hiccup in my journey.

    2 Friday's ago I had what I call 'the flare from hell' – it had been so long since I had pain like that I was out of pain relief tablets & didn't even have a spare script to go and get some; all I had in the house was Tramadol (packets & packets of it all unopened because it never worked for me) & panadol.   That flare took its usual migratory course and eventually petered out. 

    Since then, every couple of days, I have what I call 'mini flares'; not bad enough to warrant trying morphine (and yes I now have another prescription just in case).  The one thing I do know is that what I am experiencing is not a herx.  These mini flares are still migratory, moving quite quickly at times, and on a pain level sit about a 4-5 on the pain scale.  When these mini flares started I thought I may be having a reaction to the Doxy (for some reason I do too well on doxy) & swapped it for  Ceclor CD.   Now I realise it didn't really matter what abx I was on, something else is going on and I need to find out how to control it or fix it — that means I needed to bring all my Sept appointments forward, first cab off the rank was to make an appt with the Naturopath (because she is so difficult to get in) then get the blood tests done & make an appt with Dr D, well it sounded like a good plan to me, but it went out the window last weekend when I was feeling so unwell.  I phoned Dr D's  surgery yesteday morning & the result of that consult was that she agrees with me, something else is going on.  I haven't actually settled down since going back onto my abx & she feels I may need an actual change of abx rather than a tweak; I have the appt with Lynn this afternoon to try to track what I have in my system and then straight down the highway for a 2nd consult with Dr D. . must admit I will have to watch out for speed cameras and unmarked cars …lol 

    I haven't felt this unwell since all this started back in Mar 07 . . . I am not in the extreme pain as I was back then but I really don't feel well either and need to get on top of it.

    ps – it is interesting to note that Dr D herself had a couple of bad flares recently (it has been some years since she flared like that) and said a few of her other patients have been flaring recently as well;  it is all very strange!

    I have to say though, that even though all this is going on I haven't changed my mind about AP therapy — in my opinion it is the safest way of controlling the symptoms (ie not taking heavy meds) and my goal is still in place.

    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

    #313548
    maz.aust
    Participant

    Ok, I have had my consults & it’s

    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

    #313549
    maz.aust
    Participant

    Jan 2010

    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

    #313550
    maz.aust
    Participant

    22/03/10

    Had my appt with Dr D yesterday – it seems my labs are continuing to slowly drop, she apologised for taking so long to find the right abx mix for me but my reply was that the important thing is that we did find it !!  Dr D asked me how I felt & I replied that as far as I am concerned I believe I am asymptomatic & have been since Xmas 09 ,,, She is extremely pleased with my progress, again apologised for the length of time to get me there but also said I had made her day !!! 

    I mentioned that I had been herxing a little because I had been on flagyl for 7 days (with a female problem) & she replied that it wouldn't have been the drug but the sulphur (I am allergic to sulphur).   

    Seems there is a lot of people flaring owing to our rotten weather lately, but I am pleased to report I am not one of them.

    My next appt is 6 mths from now, after winter, when we will start to reduce the abx, now this is a first for me — I have seen Dr D every 5-6 wks since I started AP, this is a good day for me … :roll-laugh:

    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

    #313551
    maz.aust
    Participant

    Just thought I would note my family's reaction to this journey of mine:

    From the beginning I had the total support of both my adult daughter & son who were always interested in what I had found out about the disease & hopeful that the treatment path I had chosen would work for me.  

    HB was another story, he is a very caring man who has trouble accepting the fact that he is unable to stop the agony I was in & felt helpless.  When diagnosed of course he asked what the treatment was, naturally I told him what had been suggested but also said I needed time to think & time to research if there was any alternatives to taking plaq mtx & the rest.  When I found AP & made the decision to find a doctor he was really upset & angry that I was going against the advice of specialists. 

    After about 2 months into my journey we had a chat about how he felt (instigated by him), he said he thought I was an idiot & believed that using AP was like using voodoo to combat cancer; but went on to say he knew he couldn't change my mind.

    Well it's now been about year since that conversation & just recently overheard him telling a male friend that he used to think what I was using as treatment was an absolute waste of time & wouldn't work, but over time said he had changed his mind.  When asked what brought that about?  He said it was because he can't remember the last time he found me pacing the floor in agony & couldn't remember when we stopped having a chemist shop full of pain meds & anti-inflams in the house & now believes I made the right choice.  

    All this time I knew he didn't agree with my choice of treatment but stood by my right to make the decision.  I know how lucky I am.

    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

    #313552
    maz.aust
    Participant

    18th Aug 2010

    I haven't posted for a little while now, just busy & still asymptomatic until about 4-5 wks ago. 

    I actually stopped smoking & found my system didn't like my decision.  How did I know that you ask….lol, because I was swelling up & achey to the point of being really sore.  Both My Dr & naturopath were both away on hol's so I decided to test the theory myself; I had been off the ciggies for about 5-6 days & couldn't think of anything else I had done to upset my system this badly, remember I had been asymptomatic since last Dec.  I asked my HB to buy me a pack on Friday night & gladly started puffing away, by 1.00pm Sat all the pain & swelling was gone, I continued to smoke on Sunday, still no pain, then stopped again Monday, by lunch time I had to take my wedding rings off & I was getting sore again .. I decided to repeat the previous weekends theory & once again by Sat lunch time was pain free.  That was when I knew it was the ciggies, or lack of them anyway. 

    On Monday 16th Aug I had a joint consult with Dr D & Lynn (naturopath Dr D works with) & after much testing it was obvious & confirmed that all my problems were due to me giving up the cigarettes !!!  Apparently my system had changed & the combination of abx prescribed wasn't working for me any more.  After what seemed to be an eternity they finally came to a point where we all knew what combination would work.  Lynn actually write down 'if I was still smoking I should take this' 'if not smoking I should take that'.  The main problem for me was needing to replace the Dalacin C.  I guess there you know when you are beaten when both the main players of your medical team are telling you to just trust them !!  I wasn't too keen on saying goodbye to the abx that got me to that wonderful asymptomatic state in the first place, but knew I had to let it go. 

    I started the new regime the next morning & one day later at 8.15pm (because the affect of the new meds was so profound I looked at my watch when I realised what had changed) I the swelling had disappeared & I was again pain free.  I didn't even have a little ache.

    Lynn tells me that according to the testing I should get back to where I was in 2 weeks.  I can tell you if that happens I will be enternally grateful.

    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

    #313553
    maz.aust
    Participant

    It's now Oct 13th 2010

    Just updating what happened over the past couple of months.

    It did take a little longer than a couple of weeks to finally put the flare to bed but that was mainly due to the fact my meds needed tweaked, I needed scripts & Dr D was on holiday for 3 wks.  Doing what was suggested by the naturopath started working straight away & yes it did only take 2 wks to feel much better;  the pain receeded into an ache, became intermittent & migratory again;  I had gone from being in pain 24/7 to within 2 wks being able to sleep & once again saw the light at the end of the tunnel I was waiting for Dr D to return. 

    10 days ago my Dr changed the meds & doses yet again, she wanted to hit what was left of the flare hard so 5 days of these meds, doubling the dose of cilicaine to twice a day, changing the anti-inflammatories to suppositories (yes I know it's not a nice thing to talk about) for better absorbtion & yes I knew I would herx yet again.  It's quite a strange feeling when you know you are going to herx but being mentally prepared for it is my key to dealing with it.  Within 4 days the aches disappeared, the inflammation of my wrist disappeared & all I am left with is a slight swelling on the back of both hands.  I am crossing my fingers that these meds can stay awhile & that I will become asymptomatic again soon. 

    I am now friends with a few people who have one or more of these AI diseases & it seems to me that those who are on the traditional meds are not doing as well as those I know who are on AP; & yes that includes my closest friend who has severe RA & on traditional meds however anyone I come across who has an AI disease has my support no matter what treatment path they choose.  It is not for me to tell anyone what to do, I can only tell someone my own journey so far & encourage them to make up their own mind as to what path they want to take. 

    For me, 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 just not acceptable.  It has always been my intention to be pro-active in my own journey and the herxing actually gives me hope that there is a light at the end of the tunnel and that light just might lead to remission.

    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

Viewing 15 posts - 16 through 30 (of 31 total)

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