Home Forums Personal History and Progress Threads Another Scleroderma and Raynauds Story Starting AP Today

This topic contains 34 replies, has 1 voice, and was last updated by  enzed 2 years, 6 months ago.

Viewing 15 posts - 16 through 30 (of 35 total)
  • Author
    Posts
  • #365161
    enzed
    Participant

    I stopped taking Minocycline on 14th April after 6 months on it to deal with serious fluid retention in my knees and ankles that is now reducing. I decided mino wasn’t the right antibiotic for me so didn’t restart.

    I have spent the last few days reading and following up the just published spinal research by Albert HB et al, ‘Antibiotic treatment in patients with chronic low back pain and vertebral bone edema (MOdic type 1 changes): a double-blind randomized clinical controlled trial of efficacy’ published in the European Spine Journal this month. The research makes so much sense to me and the information fits my medical history closely.

    I have a long history of spinal disc pain and over 30 years and have been plagued with dental infections. Xrays show severe osteoarthritis throughout my spine that has continued to deteriorate and spread throughout my spine during that time.

    I am so tired of begging for the right kind of help from medical people so have taken matters into my own hands and ordered antibiotics from overseas. I intend to do the same 100 days of the same treatment that was applied in the research and see what happens. I’m going to be my own doctor. The publication of Albert’s research is timely for me.

    #365162
    enzed
    Participant

    I’ve taken a detour – made a sharp U turn – 🙄 and back to AP for CREST (scleroderma /raynauds etc), after consulting with an American doctor Maz kindly put me in touch with. After reviewing my medical history he advised I have had a rare negative reaction to the herx from Minocycline and suggested I try Doxycycline instead.

    Today I gave that correspondence to my family doctor who agreed to try me out on Doxy under fortnightly supervision. Great news. I now have to get rid of the last of the fluid retention caused by the Mino herx reaction so I can start taking the Doxy dose at 100mg twice daily.

    Should the other antibiotic I ordered from overseas to treat possible lumbar infection (described in my previous post) actually get past customs, I will store it for a rainy day to be used later if the Doxy doesn’t work for me.

    So, back on track. Just hoping the Doxycycline doesn’t cause horrible fluid retention like the Mino did.

    #365163
    enzed
    Participant

    @enzed wrote:

    I’ve taken a detour – made a sharp U turn – 🙄 and back to AP for CREST (scleroderma /raynauds etc), after consulting with an American doctor Maz kindly put me in touch with. After reviewing my medical history he advised I have had a rare negative reaction to the herx from Minocycline and suggested I try Doxycycline instead.

    Today I gave that correspondence to my family doctor who agreed to try me out on Doxy under fortnightly supervision. Great news. I now have to get rid of the last of the fluid retention caused by the Mino herx reaction so I can start taking the Doxy dose at 100mg twice daily.

    Should the other antibiotic I ordered from overseas to treat possible lumbar infection (described in my previous post) actually get past customs, I will store it for a rainy day to be used later if the Doxy doesn’t work for me.

    So, back on track. Just hoping the Doxycycline doesn’t cause horrible fluid retention like the Mino did.

    6.6.2013
    Today I started AP again, taking 100mg Doxycycline (twice daily). It took a month to get rid of the fluid retention caused by the Mino.

    The plan is, I take 200mg of Doxy daily and watch for fluid retention in my knees. If it returns, I stop the Doxy and go back to my family doctor who will email Dr ‘S’ and ask for advice on what to do next. My doctor wants to see me every 2 weeks and will renew the Doxy script for a further 2 weeks each time all going well.

    The Amoxicillan I ordered from overseas arrived after being opened and approved by Australian customs. I have stored it and may try it out later on if the Doxy is not suitable for me but I would get advice from Dr ‘S’ on that first.

    So here goes, fingers crossed for a positive outcome.

    #365164
    enzed
    Participant

    20.6.2013

    After completing 2 weeks of Doxycycline 200mg daily, I reported back to my doctor and he gave me another (subsidized) script for Doxy monohydrate for a further 2 weeks.

    Since starting on Doxy I have had no severe reactions like I had on Minocycline, just a feeling of fatigue that necessitates an afternoon sleep every second day, plus achy feet and knees.

    My dry eye problem was improved on Mino but after I had to stop Mino the dry eyes returned. It was the same with sinus issues. However, after 2 weeks on Doxy the sinus is beginning to clear again and my eyes have more natural liquid again. Before taking Mino my natural tears were toxic and burnt my eyelids as well as my eyes. So I have been able to reduce the eye drops again, thank goodness. My eyes feel much better.

    There is a sign of fluid retention returning but the Doctor gave me a script to treat that so I can continue the Doxy. He is concerned that 200mg a day of Doxy is a very high dose and suggested I halve it but is leaving it up to me to decide that at this point.

    My doctor is going away for 4 months but says his locum should help me by continuing to prescribe Doxy, based on the notes he has prepared. In case the locum is not willing to prescribe Doxy he also gave me a further scrip for 100 Doxy 100mg tabs that I will have to pay full price for, so he recommended I first ask his locum to continue the subsidized Doxy treatment before I consider paying full price. It will save me a huge amount of money.

    So far Doxy is going much better than I expected without the extreme effects I experienced on the Mino.

    UPDATE
    23 June 2013
    I will keep up the dose of 200mg of Doxy for as long as I can, which is until I have intolerable ‘die off’ reactions and hope for the best. My skin has just started to itch though – if it breaks out in sores again as it did on Mino, I will stop the Doxy. (I had to use antibiotic cream and wash in Phisohex to heal up sores when taking Mino).

    #365165
    enzed
    Participant

    1 July 2013 UPDATE

    Yesterday I saw the locum (from New Zealand) who is looking after my Australian doctor’s patients while he is overseas for several months.

    She is very receptive to the theory of SD being caused by bacteria and readily prescribed a Doxy script for another 2 weeks which allows me to get it on subsidy. She is willing to continue the Doxy treatment as per the plan and asked me to take some printouts of research when I see her again in another two weeks and stated she has a big interest in immune system malfunction and is quite ready to believe SD is caused by bacteria!

    So far I’ve had no major herxing on doxy, just a feeling of fatigue that comes and goes, requiring a day time sleep. (I had the same tiredness on Mino). My skin itched at the start of Doxy treatment but no eruptions and the itch has stopped.

    Going well on Doxy 200mg daily.

    #365166
    enzed
    Participant

    UPDATE 6.7.13

    After 3 weeks on Doxy I have experienced a major improvement in skin thickening.

    When I smiled one side of my face had deep lines while the other side did not. It looked weird. The deep lines suddenly disappeared 2 days ago so there was a change in the collagen. The skin on that side of my face has softened too so my face looks and feels normal again with both sides having matching ‘smiling’ wrinkles now.

    The backs of my hands changed too – the skin thickening there is definitely less and the skin has softened considerably.

    This is a major improvement as a result of taking Doxy 200mg daily. It has happened very suddenly. Amazing!!

    UPDATE 16/07/13

    Four days ago I noticed the pain in both my knees was much less, and 2 days ago it was completely gone. I hope this improvement is permanent and not temporary. I attribute this improvement to Doxy. My feet still hurt from loss of soft tissue. I put 2 layers of gel inserts inside adjustable sandals in order to walk without pain.

    UPDATE 1 August 2013

    Wow, I can wear real shoes again, the kind that lace up – sneakers – for the first time in several years. I found some with soft inserts and they’ve been in the cupboard for months, waiting for my knees to improve enough to be able to walk in them. A few days ago the pain went from my knees completely – and I can wear real shoes again! Three cheers for Doxycycline!

    #365167
    enzed
    Participant

    UPDATE 6 AUGUST 13

    I had some pain in my knees again so began juicing up a detox recipe and taking a small glass daily. Pain went from my knees after only 2 days so I will continue that detox recipe daily from now on. I am mindful that getting rid of the die off promptly is essential.

    I have just had a raft of blood tests to search for any underlying causes of CREST. The tests included all the STD’s (including HIV) ME, all the Heps, and Helicobacter Pylori. All the tests were negative. The test for Helicobacter Pylori also showed I have never had it in my entire life so there’s nothing wrong with my stomach and never has been. Vit D test showed I am at the low end of the normal range so I will take a walk in the sun each day and keep supplementing weekly with Vit D as I usually do.

    I have been doing so well on the Doxy – the skin thickening on my face had already reduced on Doxy, and now the skin thickening on the backs of my hands has gone completely just in the past week so the collagen is obviously starting to break up now. If it’s breaking up on the outside of my body, then it may also be breaking up inside as well. This is particularly exciting progress for SD.

    The Raynauds fingers are warmer and pinker which means increased blood flow and my feet are warm for the first time in years.

    I asked the doctor how we could speed up my recovery and after doing some independent research the doctor agreed I could try combination AP. So for the past week I have been taking Doxycycline 200mg as well as Roxithromycin 300mg every day.

    The pain from herxing seems to be confined to my knees, my upper spine and right shoulder. Acid reflux is sporadic now but I take prescription medication to keep that under control.

    I made progress while on MIno but couldn’t deal with the extreme die off reaction. Now doing very well on AP ever since I switched from Mino to Doxy. 😀 Making rapid progress. Very happy.

    #365168
    enzed
    Participant

    UPDATE 11 AUGUST 2013

    In my previous post I wrote:
    “So for the past week I have been taking Doxycycline 200mg as well as Roxithromycin 300mg every day.”

    I saw my doctor again today. She has been doing a lot of research on my behalf. After all the negative test results I’ve had for other things, we seem to have narrowed down the possible causes of my CREST to Lyme and/or Lupus.

    As a result, my medication changed again today. The Roxy has been stopped. I continue with the same Doxycycline daily dose of 200mg, now combined with 200mg of Plaquenil (hydroxychloroquine sulfate) every second day, to be increased to 200mg daily if I can tolerate it. I start the Plaquenil tomorrow.

    We agreed there’s not much point in going to the expense of sending blood to the US for Lyme testing at this stage because the test results are not definitive and still need to be considered along with other factors, so it’s a clinical diagnosis anyway. Plus the doctor is now very confident Lyme is the likely culprit causing the CREST, having also taken my medical history into account. In addition she says that although tests do not identify RA, I do have significant inflamed body tissue and muscles as well as joint pain. (I’ve had those symptoms for 30 years).

    Herxing again, knees painful one day, not painful the next. A bit swollen too. The doctor is seeing me every week and watching closely to evaluate the drug actions and reactions.

    I feel like I’m traveling the road forward in order to meet the road back 🙂 Somewhere there must be a junction.

    #365169
    enzed
    Participant

    After only two doses of Plaquenil taken 2 days apart, added to my usual Doxy dose of 200mg, I experienced some of the side effects considered to be serious (including vision problems and mouth ulcers) so Plaquenil has now gone in the bin. No more Plaquenil ever.

    Have discussed a different AP combination with my Dr.

    I will stay on Doxy 200mg daily because it’s working well, and add a pulsed dose of either Azithromycin or Roxy to boost the successful Doxy effect. I’m hoping the combination will speed up the improvement I have already had from Doxy.

    I am thinking, get both azithromycin and roxy, and alternate them on a monthly rotation (pulsed) to boost the Doxy. Will discuss that with the Dr.

    Right now it’s just Doxy at 200mg a day.

    #365170
    enzed
    Participant

    This week I attended my 6 monthly appointment with the rheumy. I got the results of blood tests taken last week.

    For the first time since the CREST diagnosis in 2009, my immune system has tested as functioning NORMALLY[y/b]. Fantastic news.

    However, my sodium level is depleted so I am now using electrolyte drinks to boost the level and have another blood test in 10 days time to check the result. I also have to use more table salt on my food to increase the sodium level.

    The blood tests also showed too little iron in my blood so I am increasing my daily intake of red meat to bring that level up.

    AP treatment to date:

    From October 2012 to April 2013 I was on Minocycline but unable to tolerate the die off effect, even after reducing the dose, detoxing and having several ‘washout’ periods.

    After a month without Minocycline it was replaced with Doxycycline at 200mg a day and I have continued on that dose of Doxy ever since. Die off is tolerable.

    Recently my family doctor gave me 3 tablets of Azithromycin 500mg that I pulsed over a 14 day period, in addition to and combining with the Doxy.

    A week after finishing the Azithromycin I started a 10 day course of Roxithromycin 300mg, one each day, combining with the Doxy.

    As a result of the combination AP the skin thickening that was on one side of my face softened and reduced and now is not detected. Following that change the skin thickening on the backs of both my hands has completely and rapidly disappeared. My feet and hands are warmer than they have been in years, and my Raynauds fingers are definitely pinker on the undersides. The tops of my fingers are still blotchy but are showing more pink and less white than previously.

    While the rheumy remains in denial that CREST is caused by bacteria (I advised him of my 6 months on Minocycline but don’t bother arguing with him about AP) my family doctor has now provided me with a script for 42 tablets of Metronide 400mg.

    Metronide: The plan is to break the tablets in half and pulse 200mg in addition to the Doxy that continues at 200mg every day. I am to control the pulsed dose of Metronide myself as a major herx can be expected with this combination.

    I am continuing the daily detox program. If Metronide causes intolerable herxing (as Minocycline did) I will space out the pulsed dose even further or stop taking it. At the first sign of mouth ulcers I will stop taking the Metronide. Having had serious jaw infections in the past I can’t risk getting any more.

    EDIT: 29 August
    Began taking 400mg Metronide from today.

    EDIT: 6 SEPTEMBER 2013
    Took Metronide 400mg for 5 days, then Dr phoned and advised me to stop taking it, come into surgery and discuss. She has another treatment plan worked out for me. Blood tests showed lack of sodium so I drink electrolyte mixture daily to bring sodium levels up. Low protein in blood too, have to eat more red meat.

    Bought Kalso Earth shoes (negative heel technology) that throw weight off knees and onto back leg muscles – marvelous for my knees and also my CREST feet, walking much better now in these great shoes. Also found Brooks ‘Pure Cadence’ sneakers, very soft and don’t hurt my feet. Nice to be wearing real shoes again.

    #365171
    enzed
    Participant

    From 8 to 13 September (total of 5 doses) I added 1x Roxy300mg once a day to my regular Doxy200mg. Dr advises to wait 3 weeks or a month and then repeat this same combination AP or reduce the Roxy to 3 days depending on herxing. I did herx after adding the Roxy but detoxed daily with ‘green’ juiced drink and managed to stay on top of the herxing. My knees are improving, swelling going down. Dr has been seeing me weekly to monitor my progress and is very happy with results so far.

    Juiced green drink is comprised of:
    Celery, cucumber, kale leaves, granny smith (green) apple, half a lemon, fresh ginger.

    Edit: I can also use Metronide in combination with Doxy instead of the Roxy.

    #365172
    enzed
    Participant

    It’s exactly one year ago today I began AP.

    There have been lots of ups and downs but still making progress with some measurable gains. 😀

    I am continuing with combination antibiotics and am hopeful of yet more gains.

    EDIT; 7 OCTOBER 2013

    My current combination AP is Doxy 200mg, which is ongoing, combined with a course of 2 tablets of Azithromycin 500mg spaced 5 days apart.

    When this Azithromycin course is finished I will start pulsing with Roxy 300mg twice a week to be ongoing, added to the Doxy.

    The plan to pulse with Roxy in addition to the Doxy is on the advice of Dr ‘S’ in Iowa.

    This combination made the skin thickening vanish from my hands and caused my Raynauds fingers to become quite pink again so is well worth continuing for now.

    The Doxy has had a far bigger positive impact on the Raynauds than the Minocycline that I started AP on.

    #365173
    enzed
    Participant

    I am going very well on Doxy 200mg a day combined with Roxy 300mg twice a week.
    This dose was advised by Dr ‘S’ of Iowa after I sent him an update of my progress with all the medications I have tried.
    I still have a few azithromycin stored in the fridge that I will use in the event of a stall in improvements.

    More gains – I have noticed my hearing has greatly improved lately and I no longer have to lipread or wear hearing aids.
    My hearing deteriorated suddenly in 2008, a year before I was diagnosed with SD and I needed hearing aids. I can now hear people talking in another room and make out what they are saying without hearing aids.

    Knees My swollen and painful knees are finally improving. On doctor’s advice I went to a swimming pool daily for 3 weeks to exercise my knees and that reduced the swelling and loosened them up a bit by shifting the fluid retention. But the best improvement came when I received a new supply of Emu Oil from Talyala Farm. I have been applying it 3 times a day and after a month the difference is amazing. One knee is now completely flexible without any pain and the other is still improving. It’s not as flexible as the other one and still a bit sore but so much better than it was.

    Recently I halved my BP medication too – my BP that was high since the diagnoses of SD suddenly went lower so the Dr halved my medication and BP is now stable on 120 over 80, another welcome outcome of the dramatic improvements since I began AP.

    Sometimes my stomach reacts to the AP medication so I might still need an occasional washout. Eating plain Greek yogurt helps my stomach though. I still have a ‘mean green’ detox juice most days and I think it helps a lot to deal with the die off.

    I’m now in my second year of AP and still having measurable improvements in the SD.

    #365174
    enzed
    Participant

    Time for an update:

    10/05/214

    Since my last post I continued the Doxy at 200mg daily combined with Roxy twice a week, but the fluid returned to my knees. I have found occasional washouts necessary in helping my knees return to normal. Right now I am taking 100mg Doxy a day and no Roxy at all. I found the combination AP made me very tired so dropped the Roxy and reduced the Doxy dose to 100mg.
    My most recent blood tests were all normal but my BP has gone up.
    The Raynauds is still there and reacts to cold weather as previously but my hands are now quite warm most of the time. My body temperature is much higher than it was before AP so I no longer feel cold when everyone else is feeling hot.

    I bought an electric massage chair and find daily massages have helped my knees by dispersing the fluid build up that I am certain is caused by the AP. (die off or flare?)The massages also relieve muscle spasms in my shoulders that have been there constantly for 30 years. It gives me a lot of relief.

    When I asked the rheumy for my blood test results he wanted to know why I wanted to know actual results apart from just being told they were ‘all OK’. Gee whiz, I said I like to know what’s going on inside my body. He made it clear I am just a nosy patient who can’t mind her own business. 😮 No, just kidding; I wasn’t surprised by that at all. And I did insist on writing down the blood results before I left. I checked them on the internet when I got home. They were all normal.

    Summary: Still going on the AP but for now, at a lessor dose than before, just 100mg Doxy once a day to manage fatigue caused by higher doses and to avoid fluid build up in both knees. But still going forward, got lots more energy as time goes on, so feeling pretty good and a huge improvement on life before AP.

    #365175
    enzed
    Participant

    Annual cardio-echo and lung tests for SD.

    In the past week I have had my annual cardio echo test for SD – result is, my heart and arterial blood flow are normal.

    Also had the respiratory lung test – result is the same as for the past 2 annual checks – good result with no deterioration at 95% capacity. The technician said at my age (68) an annual deterioration is expected and was surprised to find none.

Viewing 15 posts - 16 through 30 (of 35 total)

The forum ‘Personal History and Progress Threads’ is closed to new topics and replies.