Hello everyone,

[maz.aust]

What can I say, 2014 was full of hospital visits & surgeries, 2015 was recuperation year & the time it took to get my system back to what is my normal (having tried early last year for just a month the mtx path which failed miserably because I am allergic to mtx & arava – long story I won’t bother you with lol, suffice to say my rheumy told me to go back onto AP – WOW now that was a wow moment!)

Now semi retired and with boredom setting in am now volunteering at the RSPCA with the dog behavioural team (before anyone asks yep it’s just another one of my odd qualifications)

My AP is still alive but gratefully not well — I am back to being relatively symptom free

I hope everyone is ok & much better today than yesterday (1 day at a time, remember!)

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[lynnie_sydney]

Nice to see you maz! You’ve had a pretty rough trot over the last couple of years – so pleased that things are finally back on track health-wise for you 🙂

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)

[quilter]

Hi Maz,
I’m was just back to the roadback looking for some more information. I’m sorry to hear that you’ve been under the weather, to say the least, and for so long. I was looking thru some of my notes, and I came across some of your replies. I should have listened to you! I had my reasons for wanting to get off the mino, and I was in remission. So a couple of weeks ago I just happened to notice that my little finger nail had shrunk dramatically. Actually my fingernails are showing signs of the disease. My kind doctor who has seen me through all of this has retired. My primary sent me to a rheumy, needless to say I didn’t receive very good reception. I’m just naïve enough to think that maybe I can convert her. I’m living proof that AP works, my life expectancy from the Merck Manual is 10 years. I started out in 2007 and it’s now 2016. She said she will not need to monitor my RNP, which is what is used to monitor MCTD. I have about 8 months supply of mino, and I think my primary will continue to order it.
This was going to be a short Hello, but things keep popping up. I was looking up MCTD on the internet because the rheumy doesn’t agree with my definition of it. I ran into a site: MCTD and Life Expectancy – SteadyHealth.com. I found several people who have it and need information desperately. I’m not sure if they will allow my information to be posted. Have you ever seen it and have you had any experience with their website? After my experience with the roadback, their site just doesn’t even begin to compare. But I would like to get the word out.
I want to let you know that you have meant so much to all of us, I can’t fathom how you can stick to it, the way you do. Thank you, Thank you, thank you! Carol

Dancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD, July 2013 H.Pylori, Aug 2015 Vaginal Atrophy
Medications: Minocycline 100 mg MWF, Low Dose Naltrexone 4.5mg, Acidophilus 1-3 a day, Estradiol patch
Vitamins etc.: Vitamin A, Vitamin E, Vitamin D-3 1000 IU a day, Aspirin 325 mg, Magnesium, B6, B12, Beta-carotene, Cranberry, Garlic, Multi Vitamin, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, Grape Seed Complex, Meta

[Maz]

Hi Carol,

I’m the other Maz here in the US and hope you don’t mind me replying to your post to the other Maz in Australia. I remember you well and that you had the complication of helicobacter pylori. It can be such a tricky organism to eradicate, but I just thought to mention that it might be worth your while researching bovine colostrum, which has been studied for its bactericidal effects and helps to inhibit relapses or reinfection by this nuisance infection.

https://www.researchgate.net/publication/51327305_Inhibition_of_Helicobacter_pylori_and_Helicobacter_mustelae_Binding_to_Lipid_Receptors_by_Bovine_Colostrum

http://www.ncbi.nlm.nih.gov/pubmed/7615421

Re: your stock of mino…you might want to ensure that it’s not older than a year, because it can cause renal toxicity if older and has degraded. 😉 I think you’re a retired nurse, so no doubt this info is moot for you.

Yes, unfortunately, the older we get, the trickier it is to keep these darn diseases in remission, as we don’t have the same ability to regenerate as when we were younger. Most people just prefer to remain on a low maintenance dose to keep the disease in check, rotating their abx every 5 years or so for a spell. I think you’re wise to get back on track as soon as you can. Do you need an AP doc listing? Happy to PM you one if you can’t find a doc to help.

[Maz]

Maz in Australia, so glad to hear you’re back on track after your challenging year. Sounds like you had a really rough go of things, but pleased all is well and you’re back to leading a productive, busy life again. So wonderful and great to see you here again (with such good news, of course!).

[maz.aust]

Lovely to hear from both of you

Just as an aside & something to think about:
I had duodenal ulcers for many years until I tested positive for – helicobacter pylori – long story short but suffice to say that after some seriously heavy duty antibiotics I got rid of the ulcers & have never had an issue with anything like that since (as you know I do take voltaren but even that isn’t a problem for me) I would seriously recommend anyone with ulcers to just take the meds & say bye bye to the ulcers.

We have enough to deal with without ulcers as well.

I had heard that you Maz were not well a while ago but wasn’t able to contact you, I hope everything is under control now???

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Maz]

maz.aust wrote:

We have enough to deal with without ulcers as well.

I had heard that you Maz were not well a while ago but wasn’t able to contact you, I hope everything is under control now???

Well said, Maz-Aust! H. Pylori is underestimated, in my humble opinion. It’s a spirochete, like Lyme, and in my researches I have found that it also reverts to cystic form. Blasts of combination antibiotics and bithmus may well push it into remission, but re-infection is also possible, as well as, I wonder, re-activation of dormant forms. Some folks do seem to get chronic forms of it – the immune-compromised, for example. A dear friend started with gall bladder issues, then heart disease was discovered, and then gastritis (all conditions correlated with H. Pylori)…all within a year or two. He had a past case of H. Pylori, was treated, but still takes masses doses of aspirin to control his stomach pain and now has double trouble with bleeding ulcers. The testing raises some questions, because blood testing will show IgG, but not necessarily IgM with chronic infection, yet patients are told it’s gone. Breath tests may work well for active infection, but perhaps stool tests, too, provide a more complete picture. It’s passed between partners, so this suggests that if one family member has it, then all should be treated to avoid reinfection.

The odd thing is that more than 50% of the world’s population has H. Pylori in their stomach and guts and it’s considered commensal and likely has some beneficial effects in normal situations, but it only becomes an issue in some individuals. Strangely, this seems to also be the case for chronic Lyme, with many people having had and treated it or walking around and not realizing they have it, yet only 10-20% suffer from chronic issues. Strain variation? Immune system variance? Genetics? Medications upsetting gut ecology? Who really knows?

Maybe weirder still is that I enjoy contemplating these things! LOL

Thanks for asking after me, Maz-Aust. So kind…yes, I got diagnosed with toxic multinodular goiter and it was playing havoc with me. The endo and surgeon both recommended thyroidectomy…not an easy choice, but was told I could head into a thyroid storm and the goiter would just continue to grow and cut off my wind-pipe. The surgery was not the difficult part, however. Getting the replacement hormones balanced has been an absolute nightmare. I’ll get there in the end, I’m sure, but understand it can take a year or more for the right levels to be achieved. Hypothyroidism mimics rheumatic disease, so this has been an interesting ride and made me realize, more than ever, just how critical thyroid balance is for we rheumatics.

Thanks again, Maz, and glad you’re back on track. These blips can and do occur along the way, but how great that it was your doc who suggested you go back to what worked and your AP! 🙂

[maz.aust]

(H. Pylori is underestimated, in my humble opinion. It’s a spirochete, like Lyme, and in my researches I have found that it also reverts to cystic form. Blasts of combination antibiotics and bithmus may well push it into remission, but re-infection is also possible, as well as, I wonder, re-activation of dormant forms. Some folks do seem to get chronic forms of it – the immune-compromised, for example.)

There is no doubt that H.P is responsible for many health issues and we need to get rid of it or put it into permanent remission if we can; in saying that I know how difficult that is to achieve. It took me 4 times over an 8 month period, taking combination courses of 4 & 5 antibiotics at a time to get mine there; AND I can’t stress enough how important it is to have it initially tested via a gastroscopy not just a breath test & then tested again via gastroscopy to ensure the AP worked.

So glad to hear you are ok now !!!!

yep I can’t tell you what a relief it was to have a rheumatologist tell me to go back onto AP with his blessing.

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Author]

Posts