Hi all…just a little update

[mj47]

Hey everyone!  Haven't been on the board for a while.  Nice to “see” you all & get caught up.
Just wanted to drop in & give you all an update & provide some info for people with psoriatic arthritis who are thinking about &/or using mino for it.
My husband's been on mino for approx 8 months now.  He's taking 50mg 2xs a day.  When he started he was on crutches because his ankles were so swollen, he had flares in his jaw, neck, back, right knee, hands…seemed like everywhere!!:crying:
He went on prednisone for the inflammation which worked well while he got up to speed on his mino.  but when he weaned off of the pred he had a horrible flare of psoriasis.  He started steroid treatments.  He started using Clobex steroid shampoo for his scalp psoriasis.  Within a week we noticed that his hair was falling out at an alarming rate.  We figured it was the shampoo & he quit using it.  Then we found out that mino has a similar side effect.  He got worried that it may be from that so he lowered his dosage to see if his hair fell out less.  Well, that caused a bad flare up of his arthritis for a while.  He decided he had to up his dosage again because he didn't want to go back to where he'd been.

Well, I'm happy to report that the arthritis flare subsided & he's doing pretty well now.  😎  I asked him today if someone who was suffering from PsA asked him about mino, what would he say.  His response:  I would say that it seems like it's working or it's a huge coincidence – and I don't really believe in coincidences. 
He's clearly better than he was.  He feels he needs more time though to make sure that it's really the mino that's helping.  But, I'll tell you all…this weekend we moved lots of heavy stuff around the yard, he mowed the lawn, transplanted large hosta plants.  Yes, he hurt afterward, but he's making sure to only push himself as far as he feels he can go & doesn't overdo it.  But, HE'S DOING IT!!  🙂  He's come so far from where he was.

As an added bonus, the psoriasis has almost completely cleared up & he hasn't been using the steroids.  He does eat coconut oil every day.  And he makes his own lotion concoction from aloe gel & pure jojoba oil.  AND, it seems like his hair is filling back in – slowly, but it seems thicker than a month ago.
It seems like his body is finally getting to a state of balance.

I just wanted to check in with you all & give you an update because I KNOW that we wouldn't be here if it weren't for all of your support & advice.  Thanks so much for listening…& sooo much for just being there. 
Hope you all get to relax on Memorial Day.
Love to you all!!!
mj

[heatherbell]

This is great news.  Sometimes what I think is missing on a website (not specifically this one!!) is the positive feed back from people who are benefitting from AP therapy.  When someone feels “crappy” they have to vent and get support and feeback from others, which is undeniably important.  But when someone starts to feel “on top of the world” .. well that's self explanatory.  Even if it's for one day or for one month – that feeling of well being well is so exhilarating that you go off and live life to the fullest – like yours truly mowing the lawn.  The simplest of chores is such a buzz – I love it.  Keep us posted every now and then.  Wishing you all the best …

[lynnie_sydney]

Heather – that has long been a problem. There is almost no one now (with a few notable exceptions) who was around when I first contributed to the Board in 2003. In general, once people get their lives back, they want to go off and live them. And so they should!! The Forum is mostly comprised of people starting or still on their particular road back seeking the wisdom and experience of others. That's why we encourage people who've achieved remission or greater wellness to document their journey in a testimonial on the main site so that a record can be kept of their journeys as inspiration for the people who follow them down the road.

Perhaps we need to start something like a 'Good News' thread on the Forum where people who are doing well can post as an interim measure? 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)

[vinny]

MJ

I have posted my story several times and try to give a brief update occassionally.  My Psoriatic Arthritis attack started very suddenly in Dec 2007. I went from being very active to barely able to function or sleep from the pain. It spread very quickly to most of my joints. I used various levels of Prednisone, but even mthotrexate did not allow me to stay off Prednisone. I did not have skin psoriasis prior to the use of Prednisone, which causes skin flares when it is withdrawn. In June 2008 I statrted 100mg twice daily generic Minocycline and 50mg Diclofenac. I stopped the Methotrexate the week I started Mino and weaned off Prednisone in 30 days and have not had to use Prednisone again. I got a very quick response from the AP treatment and did not have any herx pain. I was able to play golf again and do most of my normal physical activity. I tried to go to 100mg M,W,F pulse scheme several times, but pain was unacceptable. In Feb 2009 I added Low Dose Naltrexone(LDN), which allowed me to drop the nsaid Diclofenac and go to the 100mg Minocycline M,W,F pulse scheme.

Currently: Minocycline 100mg M,W,F

                 Low Dose Naltrexone 3.5mg 9pm nightly

                Diclofenac 50mg Sat&Sun

vinnylid

 

 

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[Eva Holloway]

Yes I think it is good to tell how well we do because this will give the newbies an understanding thst the antibiotic protocoll works, I have talked to many people that are better now then they were two years ago when I joined the board. I know we also need to go on with our lives but maybe being here for someone that really needs the encouragement from others is good too. I never be able to find all the things the volunteers have put up on the board, but I am always willing to encourage.

Eva:D

Eva Holloway

[Maz]

MJ, so kind of you to come back and give us an update on your DH!!! 😀 It's usually the way that when folk begin to get well, they post less and less here and we always wonder how they are doing. Thanks so much for this wonderful news and please send best regards to your hubby from us. Very happy to hear he is doing so well and you deserve huge kudos for being the amazing advocate you've been to him all the way. It's always great to hear that someone is getting their life back on AP.

Vinny…sorry to be a nag…do we have your testimonial for the main site? 😉 If not, could you do one for us and send it to me? We need more PsA stories for other newcomers and would love to have yours to add. Just send it to me at maz@roadback.org and I'll be sure to have the webmaster post it, so we have your name in lights!!!

Peace, Maz

[mschmidt]

MJ,

That is fantastic news about your husband's progress on AP!  There's a good reason you haven't been on the board in a while, and I'm happy that the reason is your husband feels better.  Sounds like he's getting his life back, and everyone here is thrilled when that happens.  Thanks for checking in, and giving us an update, and I hope you enjoyed the long weekend.

Maria

[mj47]

So nice to hear from you all!  😀  I will always make sure to come back here & say hello & give updates.  I feel like several of you are sort of extended family members who provided so much support in the darkest of days.

Heatherbell…yes…never thought mowing the lawn would be so exciting!  :roll-laugh:  love it!

Lynnie…I think a 'Good News' thread would be a fabulous addition to the forum.  I think a lot of people would use it like a lifeline.  I know that I often perused the testimonials for encouragement, but found I spent more time on the other section.  I think a thread where people could post & respond regarding improvements would be invaluable.

Vinny…I have closely monitored your progress.  Your story is pretty similar to my husband's.  So thrilled that you're doing so well.  When you added in the LDN, we were thinking about it too.  It's not off the table & it's good to hear that it's helping you so much.  Did you notice anything with the skin involvement lessening with LDN?  I remember Jims saying that it eventually got rid of some spots on his hands that wouldn't go away.  Nice to hear from you.

Eva – Hello!  Glad to hear you're doing well!  🙂

Maz – I've felt a bit of guilt at not having come back sooner to update!  I think about you all here quite often.  I am doing my best to spread the word about this site & the wonderful people here.  I have informed one woman with scleroderma & a man with RA to come here for info.  If I can get my husband to sit down & write a testimonial, I will post it in the testimonial section.  As of right now, I think that he's still in that mode where he doesn't want to fully acknowledge in words how much better he's doing for fear of jinxing it.  But, it's really undeniable lately & he's been openly commenting on it more & more.  So, a little more time, then I can push for a lil testimonial!!  :roll-laugh:

Just curious…anyone out there drinking kombucha tea?  (Maria??  Are you still drinking it?)  I've been making my own now for about 2 mos.  It's a fascinating project.  I know there's no studies on it & lots of anecdotal info…but we drink it every day & love it!  Who knows if it has contributed to his sense of well being??  If anyone wants info on how to make their own, I'm happy to tell you how!

Like I said, love to you all!!!!!!  Here's to progress & good health.
~mj

[mschmidt]

Yes!! I'm still drinking Kombucha tea…and it's so funny you mentioned making it yourself because of a friend of mine just gave me a piece of their “mushroom” to start making my own.  I'm new to it all, and it doesn't taste as good as the stuff in the store so, any tips would be great.  I think I'm going to try using some hibiscus tea for the next batch.  All I can say is that I don't see how it can hurt me, and I know of a lot of people from different countries that have made their own, and have drank it for years.  Specifically, my husband's friend is a Russian doctor, who learned how to make it from his parents, and truely believes in its' anti-viral properties. 

Maria

[mj47]

Hey Maria!
I made my own mushroom/mother/SCOBY…whatever you want to call it, from a bottle of GT's Kombucha and the results I've been getting are pretty much like the plain bottled version.  It was really easy to make. 
Did your friend give you some of the liquid along with the culture?  You need that liquid to get the mix really going. 
This is how I started & what I do for my tea batches…
First, whenever you're dealing with the culture, make sure your work area is clean!  Wash hands & remove all metal rings.
To make a starter culture:
Boil a cup of water (I used distilled water cuz the city water here has so much stuff in it).  Make sure to boil your water in a stainless steel pot to avoid contamination.  Add in one TBS refined sugar.  This kind of sugar dissolves quickly & easily.  Steep a black tea bag in it for 5 minutes.  Let cool to room temp.  Transfer to a glass container.  I used an old pickle jar.  Add one bottle of the Plain organic Kombucha tea.  Cover it with a piece of cloth & then let it sit.  It took about 3 weeks for me to get a good mushroom…it wasn't very warm then, maybe that's why it took so long.  Don't disturb it, don't put in direct sunlight.  A mushroom will grow on the top of it.  Don't get rid of the extra tea, you use that to inoculate your next batch.
That's your starter.

To make a batch of tea:
You repeat the above idea only with a gallon of water.  Boil it, steep 4-5 tea bags for 10 min.  I've still only used Lipton's black tea.    Add a 1 cup to 1.5 cups sugar and dissolve.  Cool to room temp.  Transfer to a sun tea jar that has a spigot on the bottom.  Pour in 6-8 oz of the tea that came with your mushroom  (if you didn't get any tea, you can use a store bought bottle of plain kombucha) and then place your mushroom on top.  Place the fabric (I use a clean tshirt with a rubber band around the neck of the jar)  This keeps pests out, but allows the air needed for the yeasts & bacteria to do their thang.  Again, place it in an undisturbed place.  I keep mine in my kitchen pantry.  It's warm in there too.  An ideal temp is around 70-75 degrees I've heard.  If it's warmer, the tea will “cook” faster.  My first real batch took nearly 2 weeks to taste good.  It was still winter & the starter mushroom was small, only the diameter of the pickle jar I started in…the sun tea jar grows much larger cultures (they'll grow to whatever size your container is).  Now that it's warmer & my culture is bigger, I get a good taste to the batch within 7-8 days.
Each batch you make creates another mother on top of the liquid.  I have 3 of them right now waiting to go into a new batch…I imagine that that might make the solution kick much quicker too.  We'll see.
The nice thing about the sun tea jar is that you can taste your “booch” without disturbing the new growing SCOBY on top.  (SCOBY stands for symbiotic culture of bacteria & yeast – sounds delish, no?:roll-laugh:) 
When you like the flavor, just take out the culture(s) and transfer to a glass container with 6-8 oz of tea so that you can make another batch with it.  If you're not going to do that immediately, keep the culture & tea in the fridge, I've heard that kinda puts it in a dormant state.
We keep the sun tea jar in the pantry & every night fill up a wine glass & treat it like a cocktail.  I love the sort of hard cider taste. 
I don't know if that all made sense, or if it gave you any insights, but feel free to ask questions if I didn't explain something. 
I am looking forward to trying to fruit infuse some of the tea this summer.  I've heard putting chunks of mango in with some finished tea & then bottling it for a bit produces a really tasty treat.

Well, that's it….hope you're enjoying these storms!  I love the thunderstorms….
xo~
mj

[PhilC]

[user=1670]mj47[/user] wrote:

Just curious…anyone out there drinking kombucha tea?  (Maria??  Are you still drinking it?)  I've been making my own now for about 2 mos.  It's a fascinating project.  I know there's no studies on it & lots of anecdotal info…but we drink it every day & love it!

I heard about kombucha tea about ten years and briefly looked into it. I decided against it after reading about a lady who died after drinking a bad batch. She gave a friend of hers a “mushroom” to get started and her friend almost died as well. Fortunately, her friend had the sense to cut back on the tea, and then to completely stop taking it, after she began to feel unwell. She still had to be hospitalized, though.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[mschmidt]

Phil,

I've read a lot about brewing your own kombucha, and there definitely are risks with it.  But, I also know a lot of people who've been brewing it for 10+ years, and have had no issues.  (3 of them have autoimmune issues, thus compromised immune systems) The benefits of it to me outweigh the risks, and I've been drinking it for a while.  I think the most important thing is to keep a very sterile environment, and lucky for me, I'm severly OCD when it comes to this.  Hopefully I haven't just jinxed myself. 😯

Maria

[mj47]

Hey Phil,

Yes, I agree with Maria.  I too have read the report about the lady who died & her friend who got sick, supposedly from kombucha.  From what I understand, there was no definitive decision that it was the kombucha that did it to them…
I remember reading that the “mushroom” source they had was given around their whole community, as often happens with kombucha cultures, and yet they were the only ones to be affected.  This leads me to think that there was some issue in their process…perhaps unsanitary conditions, or they brewed their mix in a questionable container.  You're never supposed to use ceramic jugs because they can have & leach lead or other contaminants into your tea.
As far as I'm concerned, something that's been around for 100's of years & passed down through the ages that's only got one documented death is a fairly safe bet.
I put a lot of weight on first hand accounts (considered anecdotal by most of the medical community)…if I didn't, I don't think I would've ever encouraged my husband to try AP.  I've met & talked to so many people who brew their own kombucha & so many tout it's health benefits.  I'm just sure to keep a clean workspace & only brew my tea in glass containers.

~mj

[mj47]

Oh yeah, HAPPY Belated BIRTHDAY Maria!!!!! 
You look fantastic!
Someday we'll have to meet up somewhere around here in the city & have a celebratory drink!
xo~
mj

[Eva Holloway]

I noticed, when I looked up Kombucha tea)  that it comes in containers like soy milk, since I m not good on making things like this is it okay to buy the ready-made stuff?

Eva:?

Eva Holloway

[Author]

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