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» LymeNet Flash » Questions and Discussion » Medical Questions » sister's severe rheumatoid??

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Author Topic: sister's severe rheumatoid??
randibear
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again, still think it's lyme but hey, ain't nobody gonna listen to me.

but i called her yesterday (she's in dayton ohio) and she was practically in tears. she's single, 60 and has to support herself. in debt head over heels, works at a hospital.

she's been diagnosed with rheumatoid and is going to a doctor. she's on some heavy duty ra meds but she was in so much pain i could tell. used to be just her hands but now she says it's every joint in her body.

sounds familiar huh?

she wants me to send her some things. i have no idea what to send her or to even tell her.

but what treatments are good for ra cause frankly, those meds aren't working for her? and her doc won't give her pain meds cause she's asked.

she was saying she doesn't want to live this way and i'm starting to get a little concerned.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
baileypup
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randibear,

There is a long history of using low dose antibiotic protocol for Rheumatoid Arthritis. Have her look at the Roadback Foundation www.rbfbb.org.

If she has lyme, the protocol is very different, but if it is a mycoplasma infection or some other undiagnosed infection that is underlying the RA, then the recommendation is to start with 100mg to 200mg. minocin/minocycline a day.

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sammy
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Has your sister tried LDN (Low dose Naltrexone)? That would be the first thing that I would recommend for her. It may be difficult for her to find a doctor willing to prescribe it though.

Here is some information on LDN: http://www.lowdosenaltrexone.org/index.htm

I also agree that she should try Mino or Doxy. Again, she will need to find an open minded physician to help her here. Maybe she could ask for a referral on the LDN and Road Back forums.

She could also try Plaquenil. It is used for RA to help modulate the immune system and decrease symptoms. It would work well with the doxy/mino, and LDN. This combo, each individually used to treat RA would also treat for Lyme at the same time.

By the way, I'm glad to hear that your sister is talking with you now. Hopefully you will be able to gather enough information to help her or at least point her in the right direction.

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randibear
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only thing is when i mentioned lyme i get the ole "would you please just shut the ____up about lyme"...

why is it people think we don't know a bloody thing? i mean we've researched and learned more than any doctor and they consider us idiots.

sorry...but sometimes i just want to scream..

--------------------
do not look back when the only course is forward

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massman
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Google ACAM to find an alt doc in her area.

Also search in the Yellow Springs area. Perhaps you could find an LLMD in the area + talk to that doc first.

And if the doc is lyme literate, the doc can bring up that possible [Big Grin] [Big Grin] association to your sis.

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Carol in PA
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Fish Oil and Rheumatoid Arthritis
http://altmed.creighton.edu/FishOil/

Conclusions:
Dietary fish oil supplementation induces several biochemical changes and reduces symptoms in chronic RA.

....critically ill patients have seen striking therapeutic improvement; and therefore, fish oil supplementation seems worthwhile in inflammatory diseases such as RA.

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Lymetoo
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I thought the roadback site was www.roadback.org ?

Here's hoping she gets the help she needs. The Roadback uses abx in their therapy so it would be a good way for her to get the treatment you are thinking of!!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95729 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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