Mom has Scleroderma

[Anonymous]

Hiya all you wonderful people!!!

About 5 years ago my Brother found this Message Board and consequently saved my Mom's life from Scleroderma.  We took her to Dr. F in Riverside, CA and within 6 months she was on the road to recovery and has been basically living in a state of remission ever since.  We have been extremely grateful and she has been fairly healthy, pain free and enjoying her 3 grandkids..

Well, right before Christmas last year we started seeing a change in her but she is not one to give the WHOLE story without “pulling teeth”.  Long story short…she finally admitted that she had elected to change her medication protocols. 

She has RELAPSED.  We are trying to get her back on track, things aren't great right now but we remain hopeful nonetheless.

She is now on the IV and we have been trying to get her back on the proper dosage of oral anitbiotics – minocin. 

Here are some issues I would greatly appreciate your assistance with:

~For some reason her minocin is no longer approved by her insurance.  Does anyone have any suggestions on a way to purchase without paying a fortune? 

~Have any of you noticed a significant difference in taking the “pelletized” version of the oral antibiotics vs. the non pelletized in terms of stomach problems and nausea?

~My mom is on the following 3 supplements:

         DHEA / Saccharomyces / Ultra Flora IB

Anyone else use these?  They are quite expensive too – any tips to locate them at a discounted price?

I thank you in advance for your time and continued support!  I do not know where our Family would be without this Board.

Holly and the Morrell Family

http://www.heartfeltcardiacprojects.org

 

 

[Cheryl F]

Holly:

First, welcome to the RBF Bulletin Board.  I believe that the folks here will share their experiences with you to give you support in helping your mom.

First, regarding the Brand minocin, is your mom currently a patient of Dr. F's?  If so, I know that they can write a justification to attempt to get the insurance company to cover the Minocin. 

If not, many of the people that participate on this Board have reported satisfaction with purchasing Brand Minocin at a Canadian Online Pharmacy, http://www.buylowdrugs.com,  I have purchased the brand Minocin from this company and was happy with their service and the product that I received.  You must have a prescription and you have to give your identification and speak to a pharmacist.

I don't have any ideas about the supplements that your mom is on or where to get them at a better price.  I do know that many people take different brands of the probiotics.  Is this the brand that is recommended by Dr. F? 

Cheryl Ferguson

[Karen R]

Hi Holly,

I too have Scleroderma and I buy my DHEA from Walmart. It is very cheap. Your mother might try zithromax instead of the Minocin, as it also works well and it may be covered. She should discuss this option with her doctor.

All the best,

 

Karen R:roll-laugh:

 

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