Reversing Weight Loss

[finsfan]

I was diagnosed with Scleroderma in 12/05, and was recently taking Kaiser generic minocycline for a year.  Trying to get financially squared away to see Dr. F in Riverside, CA, to look deeper into AP therapy.  Stopped taking the minocycline for a couple months as I understand it's necessary to stop for doing baseline testing.  Kaiser insurance doesn't cover Dr. F.  Anyone know of grants or financial assistance by chance to help pay for his treatment?

Secondly, I lost 40 lbs during the first several months of the disease.  I'm now eating more than ever, but seems to just pass on through.  I'm eating high calorie foods like oatmeal from steel cut oats, lots of brown rice with dinner, protein shakes, but nothing seems to stick.  Any suggestions for maybe a digestion enzyme, or maybe other suggestions?

Thanks.

[Davit]

You know that high fibre diets are a good way to lose weight because they speed the food through.

Maybe you could try one meal with less fibre and more calories.
Some where I read that protein converted to fat is harder to convert back to energy than fat itself. Any one know about this.

Are you losing muscle mass?

Just some things to think about. I could be out to lunch, no pun intended.

Davit.

[mschmidt]

Finsfan,

Hi there!  I'm sorry to hear about your weight loss, and I went through the exact same thing for about a year.  Severe muscle wastage accompanied the weightloss, which made it even more dramatic.  Granted, this was at my sickest point.  My normal weight was 120lbs, and I got down to just a little over 100lbs, and stayed there until my 3rd month into IV clindamycin treatments, right about the same time my thyroid crashed. (not sure if thyroid or clindy put the weight back on)  I was eating tons of food, and nothing I did helped me gain weight.  I know that many on the board have done the flax oil/yogurt combo, and had great results with that–it just didn't work for me.  I truely believe my body was so busy trying to deal with all the die-off that it was a furnace, burning up and using everything to fight the disease.  Then, I put on 30 lbs in about 12 weeks, and have maintained this pretty consistently.  When my thyroid crashed, I actually got up to 137lbs–the heaviest I've ever been.  Now, my thyroid seems to be making a comeback, and I'd say I'm only 8 lbs over my normal.  Have you been checked for malabsorption or celiac?  A large majority of celiacs lose weight rapidly because of malabsorption so, I'd rule that out as a cause for sure.  Since the majority of your immune system is in your gut, it's definitely worth looking into. 

As far as grants or financial assistance for treatments, I'm only aware of what my insurance company will do for patients who cannot afford their medications.  I would check with your insurance company–most have advocate nurses on staff, who will let you know of any reimbursement programs that are available to you.  Of course, you have to qualify for it but, it's worth checking into.  I go to Dr. F in California, and he told me I didn't have to stop the minocin prior to coming to him.  Diffuse Scleroderma is one of those diseases that can get out of control so quickly that I just wasn't willing to take a chance of declining.  He did all my baseline testing, and from my understanding, the only washout I should have done was prior to my Lyme disease testing because it can affect the results.  After talking with some people at Igenex, they said it really didn't make that much of a difference either because the type of testing they do is sensitive enough to pick up on reactivity.  Of course, us lyme patients know that you can have clinical symptoms without testing positive.  The same is true for RA and SD.  It's important to have a great AP doctor who can give you the correct treatment, not based on bloodwork but, a combination of bloodwork and clinical manifestations.  My bloodwork has been perfect but, I had skin involvement, and that's what my diagnosis was based off of. 

Please let me know if you have any other questions–I'm more than happy to help in any way I can.

Maria 

[Author]

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