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Old 04-02-2010, 06:28 PM   #1
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Smile New here...Polymyositis, Lymes, Parasite??

Prior to all symptoms I was a very active and healthy individual and collegiate athlete...For almost a year now I have been dealing with an un-diagnosed disease process. It all started with leg stiffness and pain in left leg which has spread throughout body and nearly debilitated me. I am a 21 year male who should not be experiencing these issues. I have no family history of any Cancer or auto-immune diseases and the like. However I have had an abnormal EMG, suggesting evidence of polymyositis due to elevated muscle enzyme. I also have Oligoclonal bands in CSF without lesions in Head, or Spinal Cord. My current symptoms include; severe leg pain, neck pain, back pain, stomach pain, dizziness spels, troubles rising from chair/walking up-stairs, gassy, belching, blurry vision, loose joints, severe muscle twitching, numbness, tingling. Neurologist has ruled out MS, Rheumatologist working up for Polymyositis ( biopsy this week). Could this simply be a stomach parasite or something a little more simpler to deal with? I am a new father as of St. Pattys day and need to be able to take care of my beautiful baby girl.


Any insight would be much appreciated! Thanks and God Bless

 
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Old 04-03-2010, 08:59 PM   #2
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Re: New here...Polymyositis, Lymes, Parasite??

The biopsy should determine if it is polymyositis. In my case, it took a couple of months for the medical team to confirm it was polymyositis; a complete biopsy can take a few weeks. I must say that I did not have most of the symptoms you mention. I had proximal muscle weakness (climbing stairs, getting up from a seated position, running were difficult if not impossible). The preliminary diagnosis was "myositis", ruling out dermatomyositis because I did not have the characteristic rash, but not IBM (inclusion body myositis). I am now feeling much better after six months of treatment. I would suggest that you get a neurologist (specialized in muscles) to evaluate your case. I know that rheumatologists are generally involved in the treatment (prescribing) of myositis, but I think that neurologists might be better at interpreting the testing (biopsy).
I wish you the best,
Rejean

 
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Old 04-04-2010, 04:31 PM   #3
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Re: New here...Polymyositis, Lymes, Parasite??

I have a Muscle Biopsy scheduled this wednesday on my right leg. I have also been to multiple neurologists and none of which thought it was neuro-related. Which is really surprising to me... is it possible that I have been overlooked? Even with all the MRIs of Head, Neck, Back etc...

 
Old 04-04-2010, 09:06 PM   #4
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Re: New here...Polymyositis, Lymes, Parasite??

Neurology deals with the diagnosis and treatment of all categories of disease involving the central, peripheral, and autonomic nervous systems, including their coverings, blood vessels, and all effector tissue, such as muscle and not only with problems that are brain-related. My neurologist reviewed the results of the biopsy with me. She performed a differential diagnosis by going through the list of possibilities that the results of the biopsy suggested. Through a process of elimination, she came to the conclusion that it was "polymyositis" (almost certainly - 100% is impossible in these types of diseases).
Good luck!

 
Old 05-30-2010, 05:10 PM   #5
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Re: New here...Polymyositis, Lymes, Parasite??

Hunter!
I am so sorry that you have to experience all of this! Especially with baby girl to play with. I'm old enough to be your grandma. I was diagnosed with polymyositis about 18 months ago. Here's the deal: muscle biopsy turned up nothing. The difficulty with that is: now, is liver CPK which had gone to 6,000 a result of statin drugs (off those for almost six months when CPK hit that number) or polymyositis. May never know. I did start big dose of prednisone and methotrexate (and sleeping pill because there is no sleeping on big mgs. of prednisone). At this point, I'm down to 7-1/2 mg prednisone, still take the methotrexate; believe it comes down to management until end of life. Here's the deal: muscle biopsy was in October 2008; February 2009 sent me to hospital with pulmonary embolism in each lung and one more at the site of biopsy (right calf). I didn't recognize in Jan. 2009 that swollen ankle, foot and pain in both were related to clot formation. I want you to make sure you do not have any clots . . . . ever and that docs will discover the culprit of symptoms and you will have a long, happy life. Please post back here to say health is improving.

 
Old 05-30-2010, 05:26 PM   #6
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Re: New here...Polymyositis, Lymes, Parasite??

I am not so sure this will provide support in your case but it might. In 2008 neurologist told me: MS we can not cure, polymyositis we can manage, inflamed muscles we can cure. Liver CPK (close to 7,000 18 months ago) settled at 100 for almost 12 months and then back to just under 300 in April so that called for increase of prednisone from 5 mg to 7-1/2 mg. I'm not wild about taking the med but it sure beats the alternative. I moved to Colorado from California four years ago. I seldom heard of "autoimmune" disease so still find it hard to accept. I did not have the symptoms you expressed but I did have the liver CPK that was way out of norm. What I'm wanting to say: diagnosis is difficult. Today I work out three times a week (since October 2009) with a personal trainer; I have more stamina, walk straighter and have better balance. At my age (71), those are real good achievements.

 
Old 06-03-2010, 05:28 AM   #7
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Re: New here...Polymyositis, Lymes, Parasite??

I hate to say it, but these symptoms are all too familiar to me, and I've been diagnosed with Lyme Disease. Where do you live? Have you been tested for Lyme? Even if you have and its come back negative, doesn't mean you don't have it. I have experienced every one of the symptoms you describe, and then some, with my Lyme. You need to see a Lyme Literate Doctor, so let me know where you live, and I can perhaps help you locate one. I'm not saying for sure that what you have is Lyme, but the symptoms do point towards that. If you have any questions, don't hesitate to ask.
I hope you get some answers soon!!

 
Old 06-04-2010, 11:46 AM   #8
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Re: New here...Polymyositis, Lymes, Parasite??

Well they have officially ruled out Polymyositis, MS, and anything suggesting a chronic inflammatory process. I continue to suffer from weight loss (30lbs now), numbness, tingling, muslce weakness, fasciculations, stiffness, vibration in legs, creaking noise in neck, costochondritis, stomach pain, heart palpitations, racing heart beat, blurry vision, joint pain, itchy eyes. Clinically I have no diagnosis, I have tried many therapys none of which seem to help. I have had an abnormal CSF, abnormal EGM, abnormal Muscle Biopsy all of which gave no definitive answers for doctors and the like. I am currently being tested for lymes disease through Envita Medical Center in Scottsdale arizona, they are running the Western Blot on me through Iggenix, as well as Cronic Viral Panels, Co-Infection, and CD 57 blood tests. I should get results within the next few weeks.
Its to my understanding that a raw fruits and vegetables diet helps with all ailments because it gives the body the best nutrition its striving for, so for the last few months I have attempted this while documenting my symptoms to see if any were erradicated. The brain fog seems to be better as well as the mood swings and overall attitude, however those are the only symptoms diminishing.
I have been doing my own personal research in regards to curing ailments that are "Un-Curable" and I stumbled accross and interesting machine im seriously considering. It is called a Rife machine, and I will be purchasing one soon to do my own clinical trials.

I appreciate any responses in accordance with the following post. Anyone else tried a rife machine or have experienced good results treating lyme?

Thanks

 
Old 06-04-2010, 12:00 PM   #9
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Re: New here...Polymyositis, Lymes, Parasite??

If you have Lyme Disease, I wouldn't rush out and buy a rife machine, there really is no evidence that it helps with Lyme, tho' some say it does!? As far as your diet of veggies and fruit, if it is Lyme, you have to be aware of sugar consumption...its one of the no-no's for Lyme....not that you can't have any sugar, but keep it to the bare minimum. If you are finally diagnosed with LD and have any questions, ask away (I've had Lyme for 3 years, so I know a fair bit about what you can expect, etc, although everyone is different, a lot of us have a lot of the same issues). I truly hope you don't, as it is a horrible disease, and tho' you may be relieved at finally getting a diagnosis, its a long, tough road to travel. I'm not trying to scare you, just being realistic. Take care, and let me know what the tests show.

 
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