I've Been Busy

[mschmidt]

I have to 2nd what Parisa said about Uggs.  My brother is a foot/ankle surgeon, and he said Uggs, flip flops, and flat ballet sandals keep him busy with surgeries.   He'd rather have me wear a wedge heel, or a heel instead of flats of any kind.  Uggs are bad because they have disproportionate distribution of weight, mostly to the heel and ball of the foot.

Kim,

Let me know how nice and toned your legs get from your shape ups;)  I'm intrigued by them, especially since they claim to tone your lower body.  (anything that could help me not have to do squats or lunges again would make me very happy!)

Maria

[Conniel7777]

Kim,

 

 You know.. i will be absoloutely shocked if i DONT have it.. not that I want it, of course, but.. I have such a long laundry list of symptoms…

I was on another message board last year, ( not a lyme board, it was a nutrition board, actually ) before I was even dx w/ SD, and one of the members there ( who has Babesia ) read my posts and said “I bet you have lyme”.

Next thing I knew, I was dx w/ SD and he said “One of the members in my lyme support group was dx w/ SD.. he ended up also being dx w/ lyme.. he treated the lyme, and the SD is now gone…”

I will never forget that guy.. I still know how to reach him.. he has emailed me many times w/ lyme info, message board links, support groups, lists of LLMD's, etc…

Not to be a downer, but i will also tell a quick story here.. I really dont want to even type this, but I will…

My 1st cousin has diffuse SD. hes not in good shape. needless to say, hes not on AP. he was tested for lyme way back when, using the standard test.. ( everyone suspected lyme ) and the standard test came back negative, and the issue was dropped. next thing you know, hes dx w/ SD. he is on the standard SD treatments, which are doing him no good. ( obviously )

he can no longer walk, his skin.. you can imagine.. I could go on, but…  I just got an email this week that he fell and broke a hip….

I want to scream out to him about AP, but they wont listen to me. I am just the younger  cousin ( MUCH younger– hes old enough to be my dad ) what could I possibly know? he has been seen by all of the “best docs”, even goes to a local hospital where they have a team of “specialists” who treat nothing but SD ( who my AP doc told me to stay away from ) etc…

I bet that he HAS had lyme all of these years…..  🙁

I MUST and I WILL order the test kit and have a doc sign off on it, etc……

Its time to get on with this and start getting treated.

 

Connie    >^..^<   PS.. thanks, as always, for your thought provoking posts…..   

[Wayne]

Hi Randy,

So good to hear that you are at the point where you can start to work again 😀 Just Awesome. I hope it all works really well for you as you start a new adventure. I'm just at the beginning, sorting out income insurance and realising that I will have to do it this way while I can't work (already sorting out insurance stuff is a pain). Then one day in the future, like you, I will hope to start work again, doing something different to the Paramedic work that I was doing when I got sick.

All the best to you.

Regards Wayne

PS Have you heard from Brendan G at all, as I was wondering how he is going?

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[Randy]

No, I have not heard from Brendan.

Best regards,

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Kim]

Connie,

I'm very sorry to hear about your cousin with SD.  I bet he has Lyme too.

Your story is so similar to mine.  My sister also has SD, and after pushing her to be tested for Lyme, she too tested positive.  Just like your cousin, she's treating the way she feels is best for her (nothing that even resembles what I've done) and she's doing very poorly.  Since what she's doing is not working, I've tried to reason with her and it falls on deaf ears and puts a strain on our relationship, so I've quit trying.  Honestly, I don't think we're all cut out for AP.  I mean it goes against everything we've been taught to question our doctors, or say “no” to our doctors, or travel out of state for a treatment that our local docs that we've trusted say is quackery.  I'm very comfortable that I made the right decision for me. 😕

None of this is easy and certainly no guarantees so we just do what makes sense to us.

Take care……kim

p.s.  So sorry you have such a challenge with pills, that really complicates things. :doh:

[Conniel7777]

Kim,

 Wow.. thats really something about your sister. if what I was doing wasnt working and I saw someone else having success, I would want to do exactly what they were doing, but.. I guess thats a simplistic view of things.

If I thought for one minute I could even attempt to tell my cousin about AP and have it do some good, I would, but… hes really, really entrenched with a group of “traditional” SD “experts”…

Thanks for sympathising with my pill issues… it is what it is. 

 

Connie   >^..^<

 

[maz.aust]

Hi Randy,

Lovely to hear you are still 'blastin' the bastards' & doing well.  Hope the surgery goes down without any hiccups, although how could it not when you have such a positive attitude!   😉

Cheers,
Maz – Aust

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]

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