Confused re Ap for scleroderma

[mlouise]

Dear Debbie,
I know how you feel! 😥 My fingers were curled under and they resembled claws. I could not reach, grab, open anything. My fingers could not curl around a lid to begin to try to open it and I did not have the strength either. I began to have some releif after my first IV of Clindymicin. I had this after being on the AP for 7 months. I had a second round of IV at about 10 months. Then the humps on the backs of my hands began to disappear and I had more movement. I know it can be very painful and uncomfortable. Have you had any IV Clindy yet? I never took any other drugs except the mino and clindy. I do take quite a few fibro-enyzmes, serracor, being the main one. I also took benedryl to help me sleep because of the pain in my hands, feets and eventually all my bones and tendons. I hope you will get some relief soon. Louise

[Debbie star]

Hi Louise, thanks for your reply,
I am only taking the doxycycline pm only m,w,f 100mg..
I haven’t had any iv.
I am still trying to find a dr who will look at the AP… I think i have found one.. I have an appointment in May

My Gp doesnt know anything about it, but would only prescribe me the doxy, so i am taking that (so at least im doing something in the meantime)

So are you able to use your hands again now?? without having to do any physio??

I may need to look at the iv too

Debbie

[kater]

Hi Friends
Louise, I am glad you are finding some relief with the Iv therapy. I don’t think I have written to you specifically, but I have made a heart connection to you through your posts and think of you often and fondly.
I have searched and searched for Iv help but no luck in finding it close to home and for many thousand dollars a session. In any event I think I am holding my own with the orals for now.
Debbie, when I saw the LLND a few weeks ago he told me the feeling of walking on sharp stones was a symptom of Bartonella. That is a co-infection of Lyme that he thinks I have also. Just seems to me all these infections have triggered the SD. Have you been tested for Lyme yet?
I know, so much to do, so little time. Even less $ but we will prevail!
hugs from Canada
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Debbie star]

Hi Kate, Thank you kindly for your pm.. that was so inspirational…and really helped me to stay motivated.. i will get back to you soon…You are such a treasure!

I have been in hospital having an op and recovering for the last 2 weeks, so a little on the internet and then sleep!! lol

Thanks re the lymmes.. do you have that feeling with the feet?? like walking on stones??

I had the lymme test here, but got the GP (dr eye roll) 🙄
he said you know it isnt in Australia…
Of course it came back negative!!

Apparantly there have been a lot more tv shows here about it

I wrote to Igenex I think it is and they said it was between $200 ~ $2,000 for the test
so i thought i would concentrate on the AP 1st..
The dr i am hoping to see here, knows a lot of stuff so im hoping he will know a bit more too

The orals seem to be working well for you ~ i am so happy for you

I need to ask re the clindamyacin too

talk soon,
Debbie

[mlouise]

Kate,
Thanks so much for your comments. It is nice to know that others care.

Debbie, I have almost full use of my hands again. I can not make a VERY tight fist, but I can do everything else. I also cannot stretch to an octave yet on the piano, but I keep trying. 🙂 My AP doctor in Philadelphia will send folks the IV treatments and then let you find someone to administer it. Maybe that might work for you. I really think you will see some improvement with the IVs. Louise

[Debbie star]

Louise, thankyou so much for your support,
I will keep that in mind re the iv,
I did mention something to my gp and he said he wasnt set up for it..
But I think the dr i am seeing may have mentioned it on his profile… so i am hoping

I am so glad you have your hands back.. 🙂 that gives me hope… I have been scared as i need them too.. I am creative and hope i am able to do the guitar, sew, garden etc again.. keep going for the OCTAVE.. I know you will make it.. my thoughts and good wishes are with you

Debbie

[Debbie star]

Does anyone know about dental procedures and scleroderma..

I have a tooth ache (lower bottom).. The dentist said it is an important tooth.
I have had the last 2 teeth pulled and got the ‘dry socket”.. I just dont know if i can cope with the pain of that again.

They have suggested the “root canal”.. but I read the article that came through awhile ago about the dry socket and root anals and problems and maybe even what could have set off the scleroderma in the past??

Also does the ldn (if you are taking it need to be stopped before any dental work)??

The dentist told me i needed 7 fillings! I cant believe it (i went last year and had all my amalgams out plus other work)..

I am now wondering if this is a problem with scleroderma and how to look after the teeth better??
Thanks
Debbie

[Debbie star]

Hi Does anyone know if it would be better to have a tooth out (risk dry socket) or have root canal therapy if you have scleroderma,
thanks
Debbie

[torontogirl]

Debbie, do you have Sjogren’s Syndrome? It often goes along with scleroderma and it’s a common cause of tooth decay and problems like you describe. Most people with Sjogren’s have a dry mouth and eyes, but not all do. It can cause other problems like nerve damage, fatigue, and some stomach problems. A lot of people with SjS end up losing teeth because reduced saliva makes it easier for bacteria to live in the mouth and I think there can also be a change in the pH balance in the mouth (not sure about that part). If you have a dry mouth and poor circulation (from scleroderma) then you won’t heal well after dental surgery.

There are some medications that increase saliva production like Pilocarpine. There are also special mouthwashes and rinses like Biotene. If you do have Sjogren’s secondary to SSc, then these should help. There’s a blood test for Sjogren’s.

[Author]

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