Well here we go, just in time for Lyme disease awareness month. For just a moment lets forget all about Lyme disease and how it is proven to cause brain infection and damage.

   What this study suggests is the same old "if you don't see it, it's not the cause". ANY infection to the brain can cause Autism Symptoms. They campaigned hard and won over the scientific community when they "proved" no link between Autism and vaccines.

   Blows my mind, and I'm sure many others are also scratching their heads in this logic. "We don't know the cause of Autism, MS, ALS, FM etc etc but we do know it's not caused by vaccines or Lyme Disease"

   Pray tell how they are determining what doesn't cause Autism but can't say what it is causing it? These Infectious Disease researchers (whom, we could guess who they are) are hell bent on deny deny deny. If they deny Lyme disease could cause the damage that any other spirochete bacteria can do then just maybe it will go away?

   There's a problem with that thinking and that is the longer they deny the more people become infected and crippled. The more people in that boat the louder they will get. Why not just roll up the sleeves and work with the ILADS experts and drop that game of "me first".

Study Debunks Lyme Disease-Autism Link – WebMD

www.webmd.com

Children with autism no likelier than others to have signs of tick-borne infection

Wishes Hopes and Dreams

   Wishes Hopes and Dreams are all it seems I have these days.  Wishing for warmer days, hoping for a more peaceful future for humanity and dreaming of what I may still accomplish in the years ahead.
I'm more a dreamer than a doer these days, that's alright though because some of my dreams have become reality and I'm really proud of the work I did to make some small things happen.

  

  I have a lifetime of a "Bucket List" that keeps changing, somethings are added and some things are taken away.  My time in the amazon forest is off the list but replaced with creating a legacy, or at least great memories for my grand children.  

   Living with chronic illness is no cake walk that's for sure and living with this particular disease seems beyond unbelievable because of what we have to go through just to get doctors to listen to the laundry list of symptoms and come out of that visit with yet another list of antidepressants, anti-anxiety meds. and being told that there is nothing that can be done for those everyday aches and pains.

   

   I cannot tell you the number of times I've left the doctors office in tears and ready to commit myself to a psychiatric care facility.  I felt foolish, doubting myself and wondering if it's at all possible to be a hypochondriac and not know it.  Not a single doctor in 30 years ever asked or thought to ask what my life style was. Had they asked, just maybe one of them would have looked at the potential of vector borne illnesses. 

 I had been given Quinine for my severe muscle cramps and spasms. I had been given the maximum dose that could be taken of Viaox and when that was taken off the market it was then Celebrex for the horrible joint pains.  Tramadol for my constant headaches that turned into migraines regularly and the joint pains.  Got Maxalt added to the list. Prednizone for inflammation in my back and added flexeril for spasms. I was taking drugs to counteract the side effects of other drugs. Added to the symptom list was fatigue not sleepiness or just tired, I mean bone aching exhausted where by about 1 pm at work I just couldn't move anymore and had to find excuses to sit in the office to do paperwork.  Memory lapses and lost words and confusion became a huge problem.  My knees and elbows were giving out and I had surgery to repair tendons in my rt elbow, still not working well.  

 I've had gallbladder scans, chest x-rays,liver scans, thyroid scans, CT scan of the brain, EEG, EKG, Echo cardiogram, sinus x-rays, stress tests and ultra sounds from neck to ankles.  I've had blood work for everything under the sun (at least that's what my doctor said at the time). Chronic sinus infections led to more steroids.  

   When all of those drugs didn't work and all of those tests came back normal, with the exception of a faulty heart valve and growth on my thyroid (thyroid tests are still normal) and getting progressively  worse my doctor hit that proverbial wall and referred me to mental health.  I accepted my fate and went to see the psychologist to see what sort of mental illness I had that is causing me such misery.  I let loose in the visit, crying through the whole story of events that brought me there. She had me describe in detail my symptoms and events surrounding some of my worst flares.  By the end of that hour, she told me that for sure I had something physical going on and that the doctors need to keep trying to find the cause.  What a weird feeling at the end of that visit..........I'm not crazy Whoo hoo! BUT I'm still in pain and have no idea what's wrong with me.  My doctor was at the end of what he could look for and I just gave in to the idea that I better just live until I die.  I was at a point of being very fed up with being told I'm fine.

   Later in time I ended up in New Jersey to help my daughter and her husband with the kids until they got out of the military.  My daughter had been sick for awhile with a fever and fatigue and headaches among some other symptoms.  Most of which sounded very much like what I had been going through.  She had what the doctors thought was an infected bug bite on her toe months earlier.  In her research to figure out what the cause could be (her doctors had no idea what was causing her symptoms) she stumbled upon tick borne illnesses. This made lots of sense in her case because the military base she worked on was drowning in ticks (figure of speech) almost daily there were people pulling ticks off of them selves or finding them crawling up their legs.  She asked to be tested and sure enough she had lyme disease and Bartonella.
Long story short here because her fight was incredibly long eventually involving a congress woman from California trying to help her get treated. She lost that 3 year battle and someday I'll attempt to tell you the whole story.

 I found an internal medicine doctor that would test me.  There was no hesitation at all by the doctor because lyme disease is commonly found in this area of NJ.  My results came back and sure enough Lyme disease and Ehrlichosis and majorly high numbers on the EBV test (explains some of the fatigue).

   I was able to get treatments for about 6 months and had some improvements but with the loss of medical insurance I wasn't able to continue.  It's been nearly 3 years with only using some herbal remedies once in a while to keep symptoms at bay but I've slid back to where I was to begin with. 

   So here I am doing what I can sitting here at the computer with a new or evolving set of wishes, hopes and dreams.  My story and my daughters story is being repeated thousands of times. Victims with the exact or nearly the same experiences and stories to tell. So many of them house bound unable to get out of bed or confined to wheel chairs. I thank god for the advent of social networking and the internet as this enables people to be able to reach out to others.  

   My wishes hopes and dreams for the moment. I wish the attacks on these patients, that have suffered for so long, comes to an end.  I hope that the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) find a way to get together for the one goal of eradicating this disease or at the very least come to a middle ground some where that better treatment options or more options are allowed to the patients.  

I dream of what it would be like to have my life back and see all those that are so very ill able to take a walk outside in the sunshine or go for a ride on horseback or grab that board one more time and surf that wave.

   Egos in the IDSA need to be set aside.   These patients you scoff at are real human beings with real pain and NO answers.  None of us need to read your garbage in the medical journals stating such opinions of us being 'anti-science' or gullible to the opinion of our doctors.  

  We deserve the right to dictate what treatments we will accept.  Informed consent laws are in place in some states, that should be uniform across the board.  We deserve to be treated as individuals, recognizing the different diseases and different immune systems we all have.  The IDSA's "cookie cutter" treatment guidelines do not take into account the varying degrees of illness we have.

   I wish, hope, dream and pray that this May 2013 IS when we finally get heard and that they realize this is NOT mass hysteria, a contagious somatic disorder or us being conned by our doctors.  To all my friends and patients out there, hang in there and be strong and don't let the opinion of some of those egos get you down.

Wishing you all Happiness and good health, 

                                                       

Cheryl

Regarding "Playing Doctor Again In Richmond"

Playing doctor again in Richmond - Roanoke.com:

'via Blog this'

Want a laugh? Read this crazy article above.

   The author apparently had a chat with some IDSA doctor or one of their friends. No source of information, even the writer didn't sign it. The Author asks what next? 

   Apparently the writer didn't study up before writing this. Laws and regulations have been passed in regards to Breast Cancer, HIV/AIDS and countless other diseases to mandate certain treatments be allowed and public awareness be conducted.

   If, as they claim, Lyme disease and the other vector borne diseases are easy to diagnose and easy to treat, then why the fight to keep more information from getting out there. 

   If the information was being given to the patients and their doctors in the first place these laws wouldn't be required. This is also going out to all those doctors that have misinformation that they are telling their patients.

  A negative test two years ago does NOT mean the patient is negative for life. A negative test right after a bite does NOT mean the patient isn't infected. A negative test and a rash does NOT mean the patient is not infected. It goes on and on. The numbers of patients NOT getting that diagnosis until major damage is done is staggering.

   It is more than apparent lately that the IDSA and those that condone such disrespect towards patients have not actually spoken to any of them to know their suffering. The tag line in their campaign this year is that we, the patients and our doctors and the advocates that stand up for those who can't speak for themselves, are Anti-Science. 

   What have we done?  Well, for starters we had been bitten by a tick or flea or mosquito that carried a bacteria that is destroying out bodies and our lives. We asked some hard questions, like "Why am I still sick?".  We want to try different treatment ideas to see if we can get some relief, for that we need 'Informed consent' between us and our doctors. We need the insurance companies to cover prescribed treatment. Sounds like some pretty anti-science stuff eh?

   We give them such a difficult and time consuming pain in the rear for asking for better tests and better treatment choices. This is the worst disease to try to play "cookie cutter" or "one size fits all" medicine.

A few of the "Political" laws in medicine:

"Fact Sheet for Vaccination Information Statements"
http://www.cdc.gov/vaccines/pubs/vis/vis-facts.htm

AIDS Legislation:
http://aids.gov/hiv-aids-basics/just-diagnosed-with-hiv-aids/your-legal-rights/civil-rights/

Womens Health and Cancer Rights Act:
http://www.cancer.org/treatment/findingandpayingfortreatment/managinginsuranceissues/womens-health-and-cancer-rights-act

IDSA Conference Boston October 22, 2011

October 22, 2011 marks probably one of the most exciting and empowering days I've ever experienced.  

     Myself, my Daughter and grand kids made the trek from NJ to Boston Mass. where the Infectious Diseases Society of America (IDSA) were having their 49th annual conference.  We arrived in Boston on Friday and met up with other Lyme patients from other states.  I cannot describe fully what it means to finally see people you've been friends with online.  Easily 70% of Lyme patients are housebound or too broke to travel so our lives revolve around our support network on the internet, so we don't get to do this often.  


Lots of hugs and conversations and laughter was to be had in the hotel lobby where we gathered to work on the protest signs. 

                                             Why are we going there you ask? 

      The IDSA writes the guidelines that doctors refer to when diagnosing an infectious disease such as Lyme disease or the many other Vector borne (transmitted by biting flies, fleas, mosquitoes and ticks) diseases.  In the case of Tick borne diseases, Lyme disease is the most common disease transmitted by the little blood sucker.  
Several other diseases can also be transmitted when bitten by a tick and they are referred to as co-infections  (read more on co-infections here).  


     The problem we are having as patients is that the IDSA guidelines make some very bold statements that are turning out to be not true in the life of a patient. One such statement is that Lyme disease is difficult to catch but easy to cure, if caught early.  Nothing could be further from the truth.  Patient after patient report that they were bitten by a tick and couldn't get a diagnosis of what they were sick with for a couple of years or more.  Tests, by the admission of the IDSA, are not reliable and not very accurate.  


     Doctors look at the criteria the IDSA put out for a diagnosis of Lyme disease and if the patient tests negative, even with confirmed rash and other symptoms. The doctor does not treat the patient with antibiotics, instead he/she orders more tests to rule out other things.  
My own personal experience with the testing went on for at least 2 years. Blood tests, scans, x-rays, and so many different doctor referrals I can't even remember now.  


     Lyme disease is a gram negative spirochete bacteria, Very closely related to Syphilis.  Those types of bacteria are known to burrow into cartilage, muscle tissue, the brain and hides very well in the central nervous system.(more here).  


    So, the IDSA says Lyme can be cured with 14 to 30 days of antibiotics "if caught early",  What of the hundreds and possibly thousands of patients that did not get a correct diagnosis "early"?  Nothing in those guidelines tell our doctors what to do then. 


    Here's where it gets even more insane.  If a doctor does feel that the patient has Lyme disease based on bite history and symptoms and proceeds to treat the patient with antibiotics until he/she sees improvement (which most often takes much longer than 30days in late infection) in those symptoms, the doctor is at risk of losing his license or faces disciplinary hearings of a med board for not following the IDSA guidelines. Read here for more on the conflict between the IDSA guidelines and the Treatment Guidelines of the International Lyme and Associated Diseases Society (ILADS).  


We want and need treatment options. (each person is attacked differently by the bacteria and we are not carbon copies of each other)


We want informed consent between patients and their medical care providers.  (the same informed consent cancer patients are allowed for chemo)


We want the insurance companies to cover the recommended treatments our doctors prescribe.


We want the IDSA to listen to US! the Patient! not some failed, half completed studies that say antibiotics won't work.


We want better testing for Lyme disease and co-infections.

     
 I can't possibly cover the whole subject of the failings of the guidelines in this small post, but this gives you a general overview. 
    
     We arrived at the Boston Convention Center at around 11:30am on Saturday.  What a pretty day it was with the sun shining brightly.  

More hugs and encouragement among everyone as we lined up facing the building.  

     As our chants rang out you could hear it echo under the giant over hang of the building. It amplified our voices ten times over. How could they miss hearing what we had to say now?  Almost immediately we got the attention of people coming and going from the convention center.  

Them, Watching us, Watching Them

I swear, it looked as if everyone of them pulled out their cell phones to snap off our pictures and we could see people looking out the second floor windows taking pictures.  

(The Final plea at the end of the protest, a Die-in.)

I want to say a great big THANK YOU to all of you that went to this protest and a great BIG Thank you to those of you that couldn't go but were our cheerleaders and helped us to maintain the strength needed to be there.

    All of you are Heroes! and by golly we will finally get listened to one day soon.  

Hello Doctor! I have something to say!

I copied the entire statement here so that I could comment to certain points.  Highlighted in  Yellow are points I'm speaking to. My comments are in Blue.

Pennsylvania Medical Society Statement to House Human Services Committee regarding HB 272 

Read Full Text Here:

http://www.pamedsoc.org/MainMenuCategories/Government/NewsfromHarrisburg/Statements/Testimony-on-House-Bill-272.html

Testimony on House Bill 272

Chairman DiGirolamo and members of the House Human Services Committee, I am John Goldman, MD, an Infectious Disease Specialist practicing here in Harrisburg, Pennsylvania. In addition, I also oversee the internal medical residency program at Harrisburg’s Pinnacle Hospital.

I wish to thank you for the opportunity to testify before you today on a topic that I believe merits your careful consideration. To begin, I should tell you that the Pennsylvania Medical Society opposes House Bill 272.

In a nutshell, House Bill 272 attempts to come to the aid of those with Lyme disease. If passed, this bill would create the Lyme and Related Tick-Borne Disease Education, Prevention, and Treatment Act. While the desire to help these patients is laudable, the bill as written may actually be harmful to those with the disease.  

(Throw in a little Fear Mongering for added effect.)

(Laudable..That word was thrown in to help belittle the situation and belittle the people involved in the passing of this Bill.)

As a result, the Pennsylvania Medical Society opposes it.

Within the bill is language that would statutorily endorse the use of long-term antibiotic therapy for the treatment of Lyme disease by mandating that health insurance policies cover that treatment.

(Laws do currently exist that mandate insurance coverage for the treatment of many other diseases including cancer and aids and TB.  This is not a new practice and not just regarding Tick borne diseases.)

Unfortunately, research on this type of treatment is not proven and the overwhelming consensus of the medical community does not agree with it. Ironically, more and more physicians are significantly curbing the unnecessary use of antibiotics given the serious and growing problem of antimicrobial resistance.

(What happened to the recognized problem of incomplete treatment of a bacterial infection being the cause of resistance?  Syphilis, TB and other infections were proven to survive past the usual 10-14 days of antibiotics.  It was proven then that the surviving bacteria became resistant, therefore it was recommended to use antibiotics until infection was completely clear.  That begs another problem doesn’t it?  How to prove or disprove current infection?  This doctor is basically saying if it can’t be proven; even if the patient is still obviously sick, do nothing.)