Beatie's tale

[Beatie]

Hello,

I've had inflammatory symptoms since I was seventeen (1982), when it began with a very painful swollen knee; a spontaneous effusion.  It wouldn't respond to any treatment for two years when my rheumatologist drained the knee and gave me a cortisone injection.  Since then it's flared up at various times and in the last two years has become unresponsive to cortisone.  My x-rays show I have advanced osteoarthritis in my right knee.  It's been a while since i've had anything else x-rayed but I also have pain in my left knee, hips, neck and both feet.  Flares of my disease include joint pain, fatigue, brain fog and – I'm never sure if this is a symptom or a perfectly reasonable response to circumstances – depression.  I currently take Mobic daily which controls my pain and morning stiffness.

I started on the AP in March this year and have only just started on clindomycin.  I tried the MP last year and after only a week on mino and Olmetec I had a massive cardiac herx and ended up in emergency.  I fainted four times and my friends couldn't find my pulse.  When they did find it, it was very weak and extremely slow.  It was clear that the MP just wasn't going to work for me as it was too dangerous.  I'm not very sick with my disease and work full time in a fairly stressful job.  The choice between having aching joints and being a bit miserable or being dead was a very easy one to make.

Through March and April of this year I worked up to taking 100mg of mino without Olmetec and wasn't herxing much, dry eyes and a slightly upset stomach was the worst of it.  For the last two weeks I've been taking Clindomycin and 50mg of mino.  I'm now experiencing a lot of bloating. I don't seem to be able to eat even a sandwich without feeling very over full.  The first night on Clindomycin I had very bad pains in my right leg calf muscle.  I'd had similar pain before several years ago that I thought was related to varicose veins and had treated it with Paroven, but the vascular specialist didn't think veins were much of an issue, but as the Paroven worked before I tried it the next night – last week – and the pain was significantly less.  I haven't continued taking it as the pain in my leg moved around and ended up in my hips.

I haven't increased the mino again yet as I'm still getting quite a lot of pain in my hips which seems to be a herx.  Once the pain decreases I'll think about increasing the mino.

That's it really. I look forward to learning more about your experiences with the AP.

Thank you,
Beatie 😀

[Parisa]

Beatie,

Are you taking probiotics?  That can make a big difference in stomach symptoms.

 

 

[Beatie]

Thank you, Parisa.  I wasn't.  After I posted I did some more reading and read that would probably be the answer.  I've now stocked up on Yakult and hopefully that will make a big difference.

Thank you very much for you response,
Beatie 😀

[superperroRA]

Oral Clindamycin is known to give the colic. That is why Dr. Brown gave it in the form of IVs. If you want to take an antibiotic other than oral Minocycline, some people take oral Azithromycin
*have you been tested for Lyme?
*Have you been tested or RA? (antibiotics do not work for osteoarthritis)
*Have you read Henry Scammell's book, The New Arthritis Breakthrough?
*A good idea would be to put at the bottom of your post the medicines and doses you are currently taking

---

Voltaren 50mg bid,
Minocin 100mg bid on MWF
Probiotics

[lynnie_sydney]

*A good idea would be to put at the bottom of your post the medicines and doses you are currently taking

Beatie – to do what superperro suggested. Click on My Account above right. Then click on the middle tab that comes up to the left 'Profile'. Go to the signature box  on the bottom of the Edit Profile screen that comes up – this is where you can put in your diagnosis, how long, current meds etc. It will then come up at the bottom of every post you make. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Beatie]

[user=26]superperro(RA)[/user] wrote:

*have you been tested for Lyme?
*Have you been tested or RA? (antibiotics do not work for osteoarthritis)
*Have you read Henry Scammell's book, The New Arthritis Breakthrough?
*A good idea would be to put at the bottom of your post the medicines and doses you are currently taking

Hello superperro,

My symptoms began before I ever left Australia.  My understanding was that Lyme disease came from ticks in America or some parts of Europe.  Though I now see there is a debate about its presence in Australia.  I've never been tested for it, no.

I have a positive rheumatoid factor. My rheumatologist said the osteoarthritis could easily have been caused by the years of inflammation.

I will endeavour to get the book and read it, thank you.

My signature has now been edited – thank you for the directions Lynnie.

Thank you very much for your help and suggestions,
Beatie 😀

[lynnie_sydney]

Beatie – link here to the main site which describes book and how to buy from Amazon. Lynnie

https://www.roadback.org/index.cfm?fuseaction=education.sub&subgroup_id=14

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Beatie]

I began the Bactrim DS on Monday.  I was sun flaring a bit at the time with the main symptoms being soreness, fatigue and some heaviness I noticed in my arms during the day on Monday before my dose.  I now have major limb heaviness, arms and legs and the fatigue is worse.  Of course it's a bit hard to tell what is causing the symptoms as my thyroid is also failing, and that could also be causing the fatigue.

The newest thing that I find most disturbing is that my face has puffed up, mostly around my cheeks, eyes and above my upper lip.  Again I have a swelling inside my mouth that's been there for a few months now which I guess may have something to do with it, but my face has only puffed up since my dose on Monday night.

I'd appreciate any thought you may have regarding all these various symptoms.

Thank you,
😀

[Kim]

Hi Beatie,

The symptoms you describe (facial puffiness) sure could be thyroid related.  I also had the swelling inside my mouth along with mouth sores which turned out to be a reaction to gluten.  I've been gluten-free since January and honestly don't feel any different, but the mouth sores have gone away.

Just something to consider because so many of us have real gut problems ~ don't know if it's the chicken or the egg. 😕

Take care…..kim

[Beatie]

Thanks, Kim!  There's a connection I hadn't made at all.  They've been watching my thyroid do weird things for years now.  I guess now it's finally tanking everything gets way clearer.

Thank you for that.  Congratulations on your remission.  Hope it all continues to improve for you.

😀

[Beatie]

I've had an interesting time with my medication since the beginning of December.  It being Summer in Sydney I'd been experiencing a bit of a sun flare since September and that was manifesting in my feet and making walking on them not much fun at all.  Early December I went away for a conference and decided not to take my meds in order to stay a bit better than normal as I was going to be away and busy socialising.  Big mistake.  I discovered that there's definitely a palliative effect with my anitbiotics.  I was off them for a week and a half and that was when my feet got really bad.  I went back on them as soon as I got home and there was an improvement by the time I took my second dose.

As Im getting the palliative effect and my herxing has been very mild my doctor suggested I experiment with the timing and Lactoferring to try and bring out more herxing.  Last Wednesday I began 200mg of Lactoferrin with my antibiotics.  By Thursday afternoon I noticed the beginnings of a rash on my right foot and just thought it was a bite of some sort despite the fact it wasn't itchy.  I was also feeling very sick on Thursday but I was attributing it to work stress rather than herxing because of my current circumstances.  I took my second dose of Lactoferrin last night with my antibiotics and today I have a rash over the tops of both my feet and my feet are extremely swollen.  They aren't extremely sore, just all blown up.  I haven't felt sick today though.  Could this be the effect of Lactoferrin so quickly, or am I having an allergic reaction to something unknown?  Any thoughts on the subject would be most appreciated.

Thank you,
Beatie 😀

[Author]

Posts