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.  

Getting Your Body Ready to Fight

    First of all, I must remind everyone reading this that I am not a doctor and I don’t promote any particular protocol or treatment. All I’m relaying to you here is what has worked for me and what I trust for my body. Always, always discuss your treatments and decisions you make with your doctor or health care professional.

    I want everybody to make educated and informed decisions regarding their health. Mainstream medical will always dispute the use of supplements, herbs or holistic types of medical care. Western medicine is pretty much always in conflict with other practices. I’m striving to find a balance between both and the decisions I make regarding my care is a very personal one. At the end of the day, I decide what’s working for me based on how I’m feeling.

     I found out that I needed long term antibiotic treatment for a chronic bacterial infection. This infection went undiagnosed for so long that it had invaded my central nervous system, my brain, my joints and possibly other areas of my body. I had contracted 3 different diseases from the bite of fleas and ticks, Lyme disease, Ehrlichiosis and Epstein Barr Virus. Found out later that I also had Babesiosis.
Debate rages on about treatments, causes and durations of vector borne illnesses which I will not dwell on here. This is about healing and caring for your body while fighting infection.

     So, your doctor has told you that you may need to take antibiotics for a minimum of a month to maybe several months. It's very important to know that antibiotics will kill all bacteria, good and bad. Your intestines and skin are your first line of defense in keeping infections away.
 It’s a jungle out there with products that make claims to protect you and it can be very expensive during your learning curve. I made it a rule of thumb long ago that “expensive” is not necessarily the best.

      First line of defense would be to find a good quality “probiotic”. I’m the type that even with a baby dose of antibiotics I get a yeast infection within just a few days. Yeast can not only be a genital infection or and oral infection (Thrush) but also a systemic infection, meaning in your blood. Read more Here about yeast infections and treatments.
     After trial and error I look for the highest number of ‘Live’ cells in capsule form or powder form (don’t worry about taste, it’s rather pleasant really and easily hid in food if you want to take it that way). The better ones can be found in the refrigerated section of you area health food store. You can’t over dose on it, though when I took too much it resulted in loose stools.

      Foods to avoid while taking antibiotics (this applies to any dose, not just high dose antibiotics) .
Grains that contain Gluten.
Sugar.
Dairy products, except Keefer, yogurt, hard aged cheeses.
I have found that following the recommended diet for sufferers of celiac disease worked really well for me. Check out this site for some excellent information on diet and recipes http:/www.celiac.com/ .

     Now that we've covered protecting ourselves from that nasty yeast infection we need to arm our selves with the right supplements for liver support. Your liver and kidneys filter the toxins produced from the die off of the bacteria you are killing with the antibiotics. See more Here for how your liver works.  And click Here to read more about your kidneys

    The only supplements I use for detoxing and liver support are Milk Thistle, Burbur extract and parsley extract and drink plenty of pure filtered water. I also do "detoxing baths", the basic one is 1-2 cups of Epsom salts and 1-2 cups baking soda in a tub of very warm water. I soak for about 30min. This has helped quite a bit with deep muscle ache and nerve pain.  I have heard of peroxide being added too but haven't tried it yet.

    During the time you take antibiotics you may experience the 'Herxheimer' Reaction and these soakings do help ease those symptoms.  Read more about the Herxheimer Reaction Here.
There is also a popular belief that you have to "Herx" to recover and that it's normal to have repeated Herxheimer reactions during the course of treatment.  I personally have serious doubts about that and my doctor has me reduce the amount of antibiotics and increase my detox when it seems that I am "Herxing" more than I can tolerate.

    A necessary reminder here that I can’t overstate, when using supplements start with the minimum dosage and increase if necessary BUT never exceed what the manufacturer recommends. Too much of a good thing can be dangerous and toxic to your system so listen to your body carefully and if in doubt talk with your doctor.

     Also remember that everybody out there with advice has a different body than you do. You are unique and what others may swear by may not work for you. There is a certain amount of trial and error during your journey to better health so don’t get discouraged or overwhelmed by all the information out there. It’s best to start your new diet and get into the habit of drinking more fluids before you start taking your antibiotics.

 This will help prepare you for the work of healing that is ahead. Read and learn everyday and share with others what’s working for you, keeping in mind our differences.





 Wishing everyone out there a rapid journey to healing and a happy life.

Love, Companionship and Chronic Illness

     This can be a touchy or at least a very sensitive subject for many people.  In light of my own circumstances I've been doing lots of reading up on this subject.  


     Many of us that are in 24/7 pain, fatigue and much more happening to our bodies on a daily basis, can't find it in ourselves to even think of having a partner in life.  Heck, I look in the mirror and wouldn't want to date myself, so how do I expect someone else to find me attractive?  


So, I then tell myself, "I'm tough" "I don't need someone else to worry about" and many many more mantras.     


     The truth of the matter is do I really want to be alone?  No absolutely not. Oh, I do have my children, my internet friends and neighbors I talk to.  That is not quite filling the spot that remains empty.  I know many of us here online can relate to having those days that you just curl up in bed and say "I don't want to be strong today".  I wouldn't say it falls into a case of depression though, just loneliness.  My back is killing me, who do I ask to rub it?  I need a hug and someone to hold me so I can have a good cry, ask the neighbor?  Hehehe....that would go over really well.  


     Do we fib to ourselves because we feel so sick, and tell ourselves we don't deserve someone?  How about we don't feel we have anything to offer?   Having Lyme Disease or another chronic illness pretty much makes us housebound so going on a date is a nearly comical prospect. 


     A very wonderful article to read is Transcending Illness.  The author makes some very good suggestions in the paragraph "Coping Strategies for Transcending Illness".  This article and many others I looked at were very informative about having a chronic illness and the impact on the patients friends and family and the day to day grind of living with these illnesses.  I could not however find any posts that resemble a "how to" guide for relationships.  


Here's a site that at least gives us hope of finding a companion or the love of our lives. Chronic Babe . com .   


     I haven't come up with any for sure answers to this dilemma but I do believe we need to keep this conversation going and maybe find a way we all can find someone to share our physical lives with.  The internet is a valuable tool in that it keeps us out of isolation but it will never replace the comfort of holding someones hand.  


Cyber hugs to all my beautiful and loving friends and supporters on this journey.    

The Gifts Within

     The word "Gifted" when used in context of describing someone, brings to mind someone who is mega talented. They could have the Gift of gab, the ability to put words together to bring people to the same understanding and the speaker. The Gift of sight could mean someone is very artistic and draws or paints spectacular pictures. The Gift of Touch, a comforter or healer like a doctor.

      I believe we all are Gifted in some way or another. It’s just a matter of finding what our gift is and nurturing it. If a child is ahead of the other children in the learning curve and can retain information much easier than others, they are able to be in the Gifted program at their school. As children we have little control over our path in life, so those that are gifted are given a boost to move forward, and the others carry on at the pace dictated to them. Pretty much until adulthood we are following the speed and path of our development, intellectually and emotionally that is dictated to us by others.

    Now, here we are… adults. Now, able to take charge and guide our own destiny. We indeed do find out that we are gifted, some in small ways and others in large ways. I’m 53 years old and still seeking my own gift or gifts. It has taken me a long time to come to this point because I was busy working at what jobs I could get to raise my family and keep them fed and sheltered. My sense of self, my gifts I thought I had, were merely actions of survival and not actions of living. Well, maybe not everything I did but my thoughts were not on doing these things as a way of sharing my talents. I never really even thought much about gifts or talents until recently.

     Just how do we define our talent or gift? Do we really need to define it? I see someone who volunteers their time at a nursing home as having the gift of compassion. In fact, that gift is one I see most often in others. Is a gift something that makes us feel good about ourselves? Lots of people have jobs based on the gifts they have, photographers, writers, actors, doctors and more.

     I think my gift is still rattling around in my head somewhere. I’m super passionate about writing but I loose something between my brain and my pen. My guess is that I need to keep it up and practice and eventually the flow will happen. For some reason it’s also so much easier for me to recognize someone else’s gifts than my own too. That’s alright with me really. I joke about being a cheerleader quite often but cheering people on and maybe somehow helping them achieve their goals makes me feel super great inside. 

     So as I wrap up my mundane blabbering I have one request. Share your gifts with anyone who will accept it. That grouchy store employee at the super market, give him/her a smile and tell them what a great job they are doing. You never know their story and you just may make someone’s life much more livable. Pay forward your gifts, each and everyday.

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.)