Back after a horrendous year

[maz.aust]

Cant find where I can send an email to anyone, so sorry to those who don’t know me

Hi Maz & Lynne

Been off air for a long time, PRA is still the same as previous but currently hard to control owing to personal issues since Sep 2017

As you know we moved to our holiday home on the Murray River to retire in May last year, however my husband was airlifted to Melb in Aug with a 10cm aneurysm, & had a AAA on 1st Sept, took a few weeks to figure out how to tackle it because they said they hadn’t seen anyone with one that big still living & no symptoms – however it was a great success & all went back to normal within 5 wks & he continued to assist the builder with the house renovations,
Then on 5th Jan whilst visiting in Melb this year he had a minor car accident – & they rang an ambulance & admitted him to hospital with a high fever – the bad news was that the graft was infected – after a month with no result they decided to do a complete aortic bypass – he survived and was progressing until he wasn’t, the end result was more complications now inoperable & he passed away in my arms on Feb 18 in ICU
I had been in Melb visiting him all day every day since end Jan – he didn’t want me to come down before then because he was actually well (apart from the infection & pic line) just in hospital waiting for them to figure out what to do

So my arthritis has been sore with all the stress, but with the help of knowing how to adjust my AP meds I have managed to contain things without any actual flare occurring, thank heavens for Dr D

In March this year I retired & finished the renovations a month ago

As I have more time on my hands than things to do I am intending to return to RB

Again I apologise for such putting up a post that has little to do with AP but I want to stress that if it wasn’t for AP my arthritis would have been out of control

Regards to all
Marilyn

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

[Lynne G.SD]

Hi Marilyn;
I am so sorry for your loss and all the trouble that preceded it.You strike me as a pretty tough cookie and am sure you will be back on track once your nerves calm down enough to not think about the situation every day.
How do you like your new abode? I hope it’s filled with light and summer breezes.Add my address to your list in case you need it
lynneandsantos@citenet.net
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX on each cheek….the French way

[maddie]

Hi Marilyn

I’m new here but just wanted to say that I’m very sorry for your loss.

Best wishes

Maddie

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[lemons]

Hello Marilyn,
You have had a rough time and I’m also sorry for your loss. I think your post has everything to do with AP. Stress can play havoc with these diseases. Losing a loved one is a major traumatic event. I too have had some pretty bad things going on recently and have also experienced a return of a few symptoms, nothing as bad as before, but I know it’s coincided with what’s been happening in my life.
Enjoy your new home and the summer, it’s cold, wet and miserable here in the UK !
Best Wishes,
Nancy xx

[lynnie_sydney]

Hi Maz

So very sorry for your loss and to read of your horrendous 2017. I’ve sent you an email. xx

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)

[Maz]

Marilyn, I’m also very sorry to hear of your profound loss and please accept my sincere condolences. So very sad to hear this and, despite knowing you are a woman of strength and fortitude, it is a miracle you have managed to keep the flames of your PRA at bay. Thank you for stopping by and know you have old (and new) friends here who care. Best of wishes to you.

[Suzanne]

Maz,

I’m so sorry for your loss. It is good to see you back and to know AP is still working for you.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[maz.aust]

My sincere thanks for your kind words & support
I have had the support of all here for such a long time

I found RB whilst searching for something other than the normal meds offerred, as I refused to take them (many years later finding I was severely allergic to both mtx & arava)
RB & the people here gave me the courage to go against my specialists advice & I am here to tell you that some 10+ yrs down the track I found the right balance for me & am normally 95% pain free every day (it took me about 8 mths to find the right balance)

To those of you just starting on AP I can only tell you that you have nothing to lose and maybe everything to gain .. for me it wasnt an easy road in the beginning I had to resort to using the old lemon drink trick & even sometimes MSM to calm the unbearable flares

During my own journey I even found a specialist who told me to go back onto AP because it worked for me & he had nothing else to offer & I know even though he doesnt use AP himself he refers some of his patients to DR D because of his experience with me .. so thats got to be good right!

In a new climate I found that the extreme heat here was affecting me which is puzzling but hey I know how to fix me & glad to report I have me back under control

Be good, stay safe & know everyone here will support you in whatever you choose

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

[Pinkmoth]

Very glad to hear you’re back on track! It’s great news.
Thanks for updating us!

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Jan Lucinda1]

Hi Maz-

Sorry for your loss. I’ve had a horrendous year too. Glad you are back.

Jsn

[whaleharbor]

I am very sorry for your loss. I’m glad you are holding tight with the AP. Hang in there. Better days are up ahead for you.

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Author]

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