LYME DISEASE HELP

LYME DISEASE HELP

Lyme disease is rumored to be "hard to diagnose, easy to treat." That couldn't be further from the truth.

Originally, I went into the Hospital with what is coined, "late on-set lyme disease." Essentially this means, the disease had gone undiagnosed to the point where it had been reacting with my joints, creating baker's cysts which busted and were painful -- not to mention my extreme fatigue, flu-like symptoms, and mounding other problems. After my month of treatment that my doctor prescribed, i felt great- for about a week. I thought my next sore throat was strictly coincidence. I thought that i was cured... Little did i know-- I was wrong.

About a month later, I got the dreaded sore throat and extreme flu symptoms that I had previously with lyme. I thought this was a coincidence, but I went in for testing. They tested my blood, I did show elevated levels of swelling and immune response, but not significant enough to generate a "positive" second test. (I had asked what a normal person without EVER having had lyme would be, it would be 0... why they set a cut-off for diagnosis, I'll never know.)

So, they sent me home, without antibiotic. Like clockwork, once a month, I would get a fever, sore throat, and soon it manifested into my joints. I went back in to my dr give or take, 13 different times over the course of 9 months. They turned me away, saying they had already tested me and it was NOT lyme disease. They tested me for mono, strep, thyroid issues, cancer, etc, I showed an elevated white blood cell count from a “massive infection that was not Lyme Disease.”

I was sent home, to rot in my bed. I lived for a couple of months like this. My condition was getting worse. I started twitching, having uncontrollable muscle movements, depression, numbness and tingling of my limbs, heart palpitations, memory loss, word block, joint pain, body swelling, residual flu-like symptoms. NONE of these I had prior to my Lyme Disease Diagnosis.

After researching online, I found many "late lyme disease" cases are incorrectly treated because dr's are putting them under the 1 month of treatment “CDC Guidelines” blanket. Instead of treating a serious illness on a case-by-case basis, these doctors are treating Lyme Disease, regardless of the stage, the SAME. If you had cancer stage three--- damn right you’re getting chemotherapy longer than the person with stage one. A person with a local tick bite infection is getting treated the exact same as someone with late on-set lyme that is in his or her brain stem.

Does this make logical sense to you?

After coming to the logical conclusion, I immediately called a Lyme Disease advocate. She told me I needed to see the best specialist-- Dr. John Greg Hoffmann. I immediately called and they got me right in.

Luckily, I had come just in time. Upon arrival, he apologized for the lack of support in the medical field-- and explained the "politics" of the Board of Medicine... (see Under Our Skin, a documentary about lyme).

After my consult and reviewing my symptoms, he ran a series of tests. He retested me for Lyme Disease, and as it turns out I have full blown lyme disease and thus for lack of treatment by one of the best hospitals in the nation (UW), I now had the latest form of lyme disease and it’s in my brain and every organ in my body.

After 3 months of treatment, as my symptoms decrease, my stomach couldn’t handle the antibiotic treatment, thus making the switch to IV therapy. After 2 collapsed lungs from a failed port procedure, I now have a PICC line in my arm and receive IV treatments daily.

Overall, my twitching has stopped, uncontrollable muscle movements have stopped, my joint pain has significantly decreased, and i have NO reoccurring sore throats/flu, my memory is back, and word block is gone.

Because the infection has infiltrated my immune system, my gastrointestinal system, and my brain, it's everywhere and my treatment is going to be long. IV treatments will only be for 6 months, and oral for a couple more. I am a 23 year old collegiately educated woman who was completely symptom free prior to my tick bite and positive tests. I'm in absolute tears right now, fearing for my life.

I can't even begin to tell you how much he has saved my life.
Without Dr. John Greg Hoffman, I'd be on bed rest, in a hospital- or dead.
I went to Dr. Hoffman with late lyme disease-- and at my wits-end.

I just wanted my life back from this stupid disease, and Dr. Hoffman has given it to me. He listened to me when everyone turned away. He called me every week outside of office hours to check on me. If you take away Dr Hoffman, you take away my only chance at a normal life.
I'm begging you, please don't do this. He is a great man who has changed my life for the better.

My fear is that there are many people in my same situation as me. 
I would say that overall, I am appalled at the medical field for letting me, and presumably, millions of people down with their lack of heart, and ability to treat people with this illness. Someone has to do something to treat these patients on a case- by - case basis and to protect the rights of the Doctors who choose to do so despite the CDC guidelines. "Chronic" Lyme Disease is CURABLE.

Dr. John Greg Hoffmann, MY ILADS doctor, is under attack for treating Lyme disease. He treats patients based on their specific condition with the best course of action based upon his professional research and experience. On November 16, 2011, there will be a State of Wisconsin Medical Board hearing, and Dr. Hoffman could potentially lose his license.

Dr. Hoffmann has a proven record of getting Lyme patients out of wheelchairs, and back to life. He has sacrificed everything for many years to take care of his Lyme patients. Please send an e-mail regarding your backing of Dr. Hoffmann. If you are a patient of Dr. Hoffmann's, please write about your positive experience with this great doctor (mail to: lymeinfo@lduc.org).

If you are not a patient, please send an e-mail to lymeinfo@lduc.org in support of Dr. Hoffmann.

Time is of the essence here.

Please circulate to everyone in the Lyme Disease Community and anyone you feel can make a difference.

Also--- sign my petition: http://www.change.org/petitions/save-dr-hoffmanns-license

Or- you can find me on Twitter @trishbaden