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Searching for answers

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Old 03-19-2013, 06:05 PM   #1
Join Date: Mar 2013
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Searching for answers

Hey everyone -

I am a twenty year old college student. Since I was 10 years old I have suffered from chronic daily migraines. Lots of medications and treatments later and still no relief. In November of 2011 I had an episode of numbness and tingling down the right side of my body. Went to the ER only for them to tell me that I may or may not have a pinched nerve.

In December 2011 I saw orthopedist for pinched nerve but she referred me to a neurologist because she thought it was a neurological problem not a orthopedic problem. She wanted me to have an MRI, but I didn’t have time before going back to school.

In March 2012 I was having severe joint pain so much that I couldn’t even walk very much. Went to local doctor where she ran some blood work and gave me steroid to enable me to finish out the semester. Blood work came back with a weakly positive ANA test. They referred me to a rheumatologist. I responded well to the steroids (2 shots and a 14 day pack) and was feeling much better at the end of my semester.

In May 2012 I saw a rheumatologist who tested 11 vials of blood, did x-rays, and even performed a muscle ultrasound. The only result was again a weakly positive ANA test. He chalked it up to stress. I didn’t buy that.
Also in May 2012 I saw a neurologist. He believed many of my problems could be neurological and related to my chronic migraines. He ran two MRIs – one of the brain and one of the spine, mostly looking for MS. It turned up nothing.

In June 2012 I saw a gynecologist because I had been bleeding for three months. Had an ultrasound and blood work and was placed of progesterone.

In January 2013 I saw another rheumatologist, for a second opinion. My joint pain and other symptoms had gotten worse and more symptoms were surfacing. I was not satisfied with the other rhuematologist’s non diagnosis. He ordered minimal blood work which came back showing nothing, even though he didn’t even test my ANA level again. He claimed there was nothing wrong with me and I should just “get on with my life and ignore it.”

On February 7, 2012 I went to the ER for heart palpitatations and breathing. Ran tests and all were normal, but my heart rate was high and they were not able to get it down before they discharged me; doctor believed there was an underlying condition. Told me I had the lupus rash - was content to let the Mayo Clinic deal with it.

Some of my other symptoms include night sweats, shortness of breath, hair loss, dry eyes/eye pain, dizziness, extreme fatigue, mouth sores.

Last month I headed to the Mayo Clinic for a week. After having lots of trouble with my insurance and an incredibly frustrating stay at Mayo, I walked away with only a diagnosis of fibromyalgia - and no treatment opportunities. Frustrated, I did not know where else to turn. I am a college student and struggling so much to get through my day to day life. As I type this I am laying flat on a heating pad due to horrid back/spine pain. I have an appointment with a LLMD in May.

In your opinions - do you think that I have Lymes?
If so, would you say that it is advanced?
Do you think the steroids I was on aggravated my condition?
If I do have lymes and have to be treated, how bad will the treatment make me feel? I'm headed to Indonesia for part of the summer and then next school year will be student teaching. I need to know how to deal with this all...

Any advice you all have would be most welcome.

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Old 03-19-2013, 10:03 PM   #2
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Re: Searching for answers

Have you had a full panel Lyme test done by IgeneX? I would think that is an appropriate step. As far as going half way around the world... If you are up to it - great, but it doesn't sound smart if you are in pain.
spend the money on a full panel Lyme test instead of going over-seas.

Treatment will make you feel horrible!

Old 03-20-2013, 01:07 PM   #3
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Re: Searching for answers

It is good to go to a Lyme Literate Medical Doctor. (LLMD). They go solely on clinincal evaluation, but being tested through Igenex is good too. Even though testing for Lyme and co-infections is not accurate, still a LLMD will want the results.

The airhunger and sweats sound like babesia. make sure to be tested for co-infections.

It isn't a easy battle, glad you are already set up for a appt with a LLMD.

You can also stock up on Epsom Salts and Hydrogen Peroxide. In your bath water put 2 cups salt and 64 ounces H.P. Good way to help pull things out of your skin and the peroxide helps put oxygen back in. "Might" help ease your pain.
You really need to detox detox detox your body as you go through treatment. And help raise the immune system.
Steroids are a NO NO when it comes to taking them and you have lyme. THey only lower the immune system and make things worse. I saw a doctor 15 years ago that put me on them. I was a nasty nasty person on them. I hadn't a clue about them.

Starting treatment can make you worse, beings you are killing the bacteria off. it is called a herx...if you start doing things now to help detox your body and supplements to raise your immune system it might not be as bad. Depending on each person how we all react. Your trip may need to be postponed. But you'll have to wait and see.

Wishing you a quick recovery!


Old 03-29-2013, 05:52 PM   #4
Join Date: Feb 2013
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Re: Searching for answers

Your story sounds alot like my daughter's. She also had the same symptoms as you starting with migraines, and then joint pain, muscle pain, foot pain and then later heart palpitations, She started getting symptoms at age 14 and the doctors would just refer her to a new and different specialist for more tests that all came out negative. We wasted 4 years doing that and in the meantime she just kept getting worse. She also got steroid injections from a Rheumetologist. Later we found out that steroids are the wost thing you can give someone with Lyme Disease because it weakens the immune system. The best thing you can do right now is run, don't walk to see an LLMD, who is specialized in testing for and treating Lyme. It took about a year of treatment, but now my daughter is much better.

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