Anyone been diagnosed with polymyositis from Lyme?

Hello everyone.

I am new to posting on this forum, but have been getting info here for months.  I feel like I know you all.  Thank you everyone.  You got me through a lot of bad days and nights, terrible herxing and major depression.  Good to know your not alone.  Thank you

I have read all the New info many times, so I have no questions about that.  My main concern for the past probably seven months, is increasing stinging and burning pain in my abdomen.  It has spread to my pelvis, back and sometimes my arms and legs.  Lately it is accompanied by major pins and needles, numbing in my feet and legs up to my knees, my hands and arms up to my elbows and my face.  The pain is now also in my chest.  I was used to pins and needles and numbing, but this is very intense.

I have had a colonoscopy, a gastroscopy (I may have spelled that wrong) CT scans, xrays of my back and recently an ultrasound of my abdomen and pelvis.  All come back negative. (What's new!)  I have no problems with my bowels (hate talking about the nasty stuff, but, what can you do!) no reflux or heartburn, just the stinging burning pain.   Recently it is so bad I have been to the ER a couple of times and some days, can't cope at all.  In seeing my LLND this week, he suggested that it may very well be Polymyositis, inflamation on the muscles.  This made sense to me as I have often wondered if it could be my muscles.  I was having accupuncture on my abdomen and my ND said my muscles were so tight he couldn't get the needles in as deep as he wanted.  I now have to go to my MD to see if I can get testing for that.  I read that the treatment for polymyositis is steriods.  I'm sure I read that people with Lyme should not take steriods.

I also have lost 44 pounds sincd the middle of February, when I started abx treatment.  I started with Biaxin and Flagyl, and am now on Biaxin and Plaquinel.  At first I thought the weight loss was from cutting the carbs and sugar, but it didn't want to quit.  I have added some carbs to try and get some weight back on, but so far it isn't working.  I am 5' 7" and was 169 pounds, now 126.  Very scarey to me.

Anyway, I'm sorry that I am all over the place here.  I would appreciate anyones comments on these symptoms, polymyositis or what to eat to get some weight back on these bones.

Again, thank you all for all you have done for me.

Maxine 

Hi there Maxine,

So glad to hear from you. It is good to know that the forum has been a help to you.

I am so sorry you have had to endure this awful pain with no answers. Good for you for continuing to look for those answers!

You are right, steroids won't do a bit of good for your Lyme; I hope there is another treatment.

When I was initially treated a few years ago, I went into a tail spin of weight loss. It is worrisome as you feel your strength drain away. I felt very aware that it was muscle mass I was losing.

I was able to stop the spiraling down by adding whole grains back into my diet. I also found ways to increase the calories of whatever it was I was eating. I also employed a little trick when I used when I lost weight at the end of pregnancy. I made a protein shake with added peanut butter and molasses, and yes, some ice cream and drank it last thing before going to bed. It really helped.

Hope you can adapt some of that to boost your calories.

Again, nice to hear from you!

The sugar aspect of the milkshake I suggested isn't ideal, but you can't fight off the infection if you are losing strength. You can counteract the sugar by taking a few more probiotics and anti-yeast herbals as prevention. Once you've stopped losing weight you can stop the shakes and go back to protein and veggie smoothies -- that is, if you can bring yourself to give them up!

Miss Cranberry,

This is not such a basic question; it is another complicated thing that needs to be weighed up as you go forward in your treatment.

Yes, sugar promotes yeast growth and some people are just so prone to yeast overgrowth that taking sugar out of their diet is the only way to keep it under control. Others don't find it a problem.

The Borellia bacteria does feed on sugar, but as all food is metabolizes into sugar it seems impossible to remove it from your body without starving yourself altogether. Perhaps an extreme move, don't you think?!

The first time I was in full treatment for Lyme, I got a yeast overgrowth. I removed as much sugar and carbs from my diet as possible. It worked and I got my balance back. However, the weight loss spiral was out of control, so I added back in whole grain.

I do allow myself treats these days. It's been a long haul for me (I got re-infected after my two year treatment and now have been another year at it). I know my body well enough to see the signs of a yeast problem and can tell if my treatment is slowing down because I've been lax with my diet.

Being strict with my diet helped me get a handle on my health, but having a treat and eating what everyone else is eating is good for me too, I think.

In short, the ice-cream is not going to kill you, enjoy!!!

Thank you Traveler. I appreciate your advice and links!!