spacehoppa

[hopefull]

Hi There,Maz recommended your youtube “series” to me as a person who's had RA for 9 yrs.I read one and I was hooked.I related to many of your issues,some of  which
I'd been living with for some time.The mouth sores and their weird patterns of coming
and going quickly…THAT one always baffled me.Another one…taking the useless
RA biologic meds and ALWAYS feeling sicker for days afterword…LOVE  that one.
Mostly what really hit home with your “stories”was the length of your disease and
failure with so many RA meds and actually watching your progress.Maz was right
when she said it will “give you hope”…I was incredibly moved by the recent tale
of being fired,so to speak ,by the primary Dr with the NHS,just plain unbelievable.
Lastly, THANK YOU for having the motivation and desire to share your story.Best,Kathy

RA 9yrs,presently on Cimzia sc bimthly,too much prednisone.
Lyme testing pending.

[spacehoppa]

Wow Kathy,

Thank you so much for writing this! This is exactly what I'd been hoping for, that it would all ring true for someone else. I know so many of our experiences are shared that I just knew it had to be worth going into all the grisly detail.

Hopefully we can learn from eachother. I just got a tip about taking zinc supplements for the mouth ulcers and geographic tongue problem and it does seem to be helping a bit. It has made my mouth less sore anyway. No doubt I will update on the videos if it continues to improve.

Again, thank you for taking the time to write this. It's actually brought a tear to my eye as I had just hoped and hoped all this would make sense to someone else, even if it's only one other person in the world. You've made my day!

I'll be eagerly awaiting your Lyme test results!

Best wishes, ruth

[jims]

Spacehoppa, sorry to be a tag along, but watching you on the you- tube videos has given me hope as well. Hope that making the right decision about the biologics, which I took for a year. Hope that my knee swelling will relent if I get on the right protocol. When you said your knees are much much better it shook me, I'm 6'3 and now down to a measly 215lbs, *(down from 312) shook me to tears. I got the cd-57 test first(cheaper) now I have seen a doc in Atlanta who sent my blood off to Ma** Clinic for further testing to include lyme, and co-infections.  She said the CD-57 HNK was a non-specific test. I am somewhat dissappointed that she's not using Igenex. However that is not off the table yet. The beginning protocol may be IV rocephin(picc line). Have you had that done? Anyway I really wanted to tag on and tell you that the videos mean allot to me and I applaud you for having the nerve and generosity to make them. You have affected my life, as have others on this board. Thanks and Happy mothers day! Or is it called mums day were you are? jim  🙂

[spacehoppa]

Hi Jim,

Thanks for the Mother's day wishes!

Yes, my knees are like night and day. And the interesting part is that my knees needed regular steroid injections to keep them down (which of course only lasted about 8-10 weeks) when I was on steroids, humira and methotrexate!

Now they are completely straight again and have no inflammation in without mtx, humira and with less than half the steroids.

It shocked me too. I had kind of got into thinking that they would never go down again. And the best part is that they don't seem to be too damaged either! I mean, I'm sure most people my age have far better knees, but apart from a slight click in the right one, they seem pretty okay.

I haven't had a picc line no, I've only taken oral abx. My LLMD started me out on the orals partly because they're much cheaper (and I pay for all this treatment myself), and partly because I'd have to travel too far to get them. Also, with two small children it wouldn't be practical. I'm pleased to say the oral abx worked very well anyway, despite the fact that I've had Lyme for over twenty years, so if that's a better option for you, you could always suggest it.

Plus, if your LLMD doesn't use Igenex labs then I'd be a little concerned. I'd say be prepared to keep looking for another doctor if you don't like her approach. But hopefully she'll be fine. It's amazing what the right treatment can do!

Take care, ruth

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