Faces of Lyme - The Mayday Project

Change happens this year, be a part of that change. Come and join us May 22nd and 23rd as we swarm and protest the IDSA. Don't be on the fence, come out and fight for your life. We need you and your help!

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  Busy streamlining our YouTube Channel and getting new video to upload. I've been battling my neuro symptoms for a very long time and it takes me quite a while to get my projects done. I'm getting there though and with everyones help we are making our channel shine :-)

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Join us at "The Many Sides of Lyme Disease"
https://www.youtube.com/user/CherylLyme1

 

  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

Controversy of antibiotic use. Only in Lyme Disease.

Lyme disease treatment sparks controversy - York, Pennsylvania: "Hartenstine, 58, of Fairview Township, is going through a controversial treatment involving prolonged use of antibiotics. The medical establishment doesn't consider it valid, saying extended use of antibiotics could do more harm than good."

'via Blog this'

   Why do the words 'Controversial treatment' only get used when speaking of Lyme disease treatments? There are worse and what I would consider more controversial treatments for other ailments, such as Chemo therapy.  

   Long term antibiotics are used for other conditions such as Whipple's Disease or Pulmonary tuberculosis even acne gets treatment with low dose long term antibiotics.  
Repeated courses of antibiotics are also used to battle the syphilis bacterium which is in the same spirochete family as the Lyme disease bacterium.

   The medical establishment they refer to in the article is whom?  My doctor believes in treating until you are cured or recovered from the infection.  That used to be standard practice years ago with those very same "established" medical community saying that the reason we are seeing an increase of antibiotic resistant bacteria is due to the patient not taking a full course of antibiotics or not effectively killing off all the bacteria.  As the surviving bacteria reproduce in the patient it changes to become resistant.  

   I remember TB had a huge problem with patients stopping the antibiotics short of the 6 months then recommended and the result was a new strain stronger than before.  STD's have also evolved resistant strains that were then explained by the patient not taking the full course of antibiotics.  This makes total sense really, if ALL the bacteria is killed then new strains could not evolve.  

   Some where along the research line it became a standard to give patients a 10 day course of antibiotics for pretty much all types of infections.   In my observation it seems to go hand in hand with the increase of "super bugs", the only way to achieve that "super" status is that the bacteria was not completely killed off in just 10 days of antibiotics.  

Better health and Happier Days ahead to you all,

                                                             Cheryl

Nightmare Diagnosis

 “Oh, thank goodness they found what was wrong with you. Now you’ll be getting better. We’re so happy the doctors were able to find it.”  

   Here you are, brand new diagnosis after years of doctors not knowing what you had. Leading you to think you were maybe stressed or depressed like they said.  Yep, happy day that was eh?  You called your family and friends to tell them too because they were so worried and you have noticed they were getting tired of hearing you’re still sick.  To destroy that last vestige of doubt you kept copies of your test results handy to show people too.                                                               

   You started down your road to getting better with a simple bottle of antibiotics, the doctor gave you 30 days’ worth because you've been sick for a while and he wanted to make sure those bad bugs are all killed.  That excitement was short lived wasn't it.  

   On about the second day you felt worse than ever, like the worst flu you've ever had.  Your head was spinning; you had stomach pains, horrible muscle spasms and cramping.  No time for a visit to the doctor at his office so off you went to the emergency room.  After signing in and getting your bracelet you’re taken in to an exam room.  

   This was during mid-summer and the weather had been unusually hot.  After your description of your symptoms they decided to start you on IV fluids just in case you were dehydrated. The nurse then takes your history and vitals and asks why you’re on the antibiotics. After hearing your diagnosis the mood shifts, it seems that all of a sudden they aren't in such a hurry any more.  

   In what seemed like forever the doctor finally comes in. The first question he asked was “How do you know you have this infection?”  You told him that your doctor ran some tests and told you what you have.  You notice a scowl come over his face, and he continues to frown as you explain what was tested for and what your regular doctor is doing for it. 


   The ER Doctor then asks, “What lab did your doctor use, because there’s a few that are in the business of coming up with false positives. I’m going to run a couple of tests, a CBC and a Panel for that bacterium, our hospitals lab is pretty accurate.  Have you been on antibiotics lately?”  You say, yes for a sinus infection. “Well” he says, “It can’t be that infection, but we’ll wait and see what the tests say.”

   At this point are you feeling upset, awkward or really doubting your diagnosis?  Yep, I’d pretty sure bet on it.  And I can only imagine how you’ll be feeling when those tests they ran say you are perfectly fine. 

   As it turned out all labs looked normal and the Eliza test for antibodies was negative as well.  Didn't that make you happy?  You left the ER still feeling like you were dying with a prescription for Xanax and pain relievers and instructions to follow up with your doctor.       The diagnosis on the discharge papers say dehydration and possible anxiety attack or depression.  What?  Did you say you were sad or depressed or anxious about anything?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

   The above scenario does and has happened many times over. Is it right? Is it proper?
Most would say of course not but that doctor didn't come by his information on accident.  Information on this infection is widely distributed through journal articles, news stories and other medical publications.  

   Countless numbers of patients report that their doctor had scoffed at them or appeared to become angry at the mention of their disease. Articles are written in medical journals that state that these patients are ‘anti-science’ or have a somatic disorder or are depressed. This has got to be the only disease out there to have so much conflicting information. 
    What is this infection we’re talking about?  Lyme disease and other diseases that can be transmitted to anyone during a tick bite.  This is happening to patients who've been bitten by a tick or flea or mosquito or other vector Borne source.  Lyme disease is the one that is drawing the most attention and not always in a good way for countless patients.  There are many other diseases we are exposed to through vectors such as lice, fleas and ticks.  
   For some information on the various vectors and their diseases, CDC or North Carolina State University (Doesn't include ticks) or NIH 

There are two sides taken by the medical community. 

  
 The Infectious Diseases Society of America (IDSA) says that 20 to 30 days of antibiotics completely destroys all the bacteria in your system. Any lingering symptoms are from everyday living or damage from the infection that will improve over time.  Conflicts can be found within the studies conducted by their own group.  One example can be seen here in a 2008 study done by UC Davis. 

   To further their argument they are publishing articles that state the patients that have lingering symptoms are victims of their doctors trying to make money on their suffering.  Also, it’s stated by that group of doctors that those patients are fishing for a reason why they are always tired and have aches in their joints. 

   Read this journal article that's full of non-scientific information and opinion.  The conversation at the end of the article sums up the opinion of the authors towards patients and their doctors.

Auwaerter, Baltimore: Well, I think you've hit it spot on. Logic and science will not persuade this group because they've decided not to use that equation to get to the diagnosis of chronic Lyme disease. They are, in fact, fighting the notion of evidence-based medicine. I agree that certainly these patients should be studied. The Centers for Disease Control has conducted studies for a number of years, and there are infections that clearly seem to propagate a post-infectious, chronic fatigue–like syndrome—for example, infectious mononucleosis and Ross River virus infection. In my view, Lyme disease offers a good model for this, although only a small number of people are afflicted with chronic and severe symptoms after treated infection. The trouble is the funding for this in the sense that this is probably such a heterogeneous disorder, I think has stymied many from devoting lots of resources, but it is something which I think the other side has tapped. This anger and angst from these patients are seeking definitive answers and treatments, and these LLMDs are providing that.
M. Gershon, New York: There is a parallel organization out there representing parents of children with autism, and they are having an effect on the distribution of vaccines and the effect is extremely negative. It's not just in the United States, although it's particularly malignant in parts of this country. It seems to me that in your last slide that you put up, should that be an offense? It seems to me that these people are spreading disease. There has to be an offense. Money is drying up to provide medical care for many groups in our society and money is short. There just isn't time to put up with this kind of nonsense. It's like saying, “We have to let typhoid fever spread.” That's what these people are; they are spreaders of disease. I know it's very traumatic to deal with them. I've testified at Congress on the issue whether measles, mumps, and rubella vaccination causes autism. At one point during my testimony when the chairman of the committee raised his gavel, I thought he was going to throw it at me. It becomes extremely passionate, as you said, but we have got to find a way about it. It seems to me that not every politician is infected by the chronic Lyme or autism nonsense. It is the vaccine advocates' approach to educate widely receptive people who have not yet been contaminated. I mean, you can't talk to Richard Blumenthal, but there are other attorney generals, although he is now a senator. He's only one of 99.
Auwaerter, Baltimore: Well, I think you're right. It is something, though, that has taken on really a non-evidence or solely faith-based attribute, so you have like minded people or politicians. It is they who really facilitate this. I testified in front of the Virginia Governor's Lyme disease task force, and it seemed to me that the majority of the group was chronic Lyme disease proponents. The panel was, at times, hostile, and did not appear to me to be conducting itself in an impartial manner. So, I think the politics of this will continue until there is an alternative, catchier explanation.  Read the entire article HERE

   Continued infection "acute" or “chronic” has to be the reason even though it can’t be true according to that sides (the IDSA) study.  According to the IDSA guidelines a "simple" course of antibiotics eradicates the Lyme bacteria (Borrelia burgdorferi (Bb).  Symptoms that remain must have another cause. 

"The objectives of these practice guidelines are to provide clinicians and other health care practitioners with recommendations for treatment of patients in the United States with suspected or established Lyme disease, HGA (formerly known as human granulocytic ehrlichiosis), or babesiosis. In addition, recommendations are provided for prevention of these infections, all of which may be transmitted by certain species of Ixodesticks."

Here's another tidbit from the above guidelines:

 "One cost-effectiveness analysis concluded that a 2-week course of doxycycline is indicated when the probability of infection with B. burgdorferi after a tick bite is ⩾3.6% and should be considered when the theoretical probability ranges from 1% to 3.5% [38]. Some experts disagree with key assumptions in the model (many of which tended to favor the use of antimicrobial prophylaxis) and consider the duration of treatment to be excessive. However, the findings do argue against routine prophylaxis of all I. scapularis tick bites, because the frequency of Lyme disease was <3.6% among placebo recipients in each of the 4 reported chemoprophylaxis trials"

  What regular family practitioner is going to read the complete guidelines to find any loop holes in treatment options that might be there?  The above quote from the guidelines just confuses doctors more, where in there is anything referring to a patient who had been infected for years with Lyme disease and the co-infections?  There is none, yet they spend quite a lot of time dwelling on the "post treatment syndrome" which is what those of us that are still suffering after years of none or improper treatment call "Chronic infection".

   The International Lyme and Associated Diseases Society (ILADS) bases their treatment guidelines on the studies that show bacteria is surviving after the recommended single course of antibiotics. The lingering symptoms are from the bacteria that hid in the joints and other tissues in the body from the antibiotics as well as the damage that was caused by misdiagnosis over a long period of time.  Because of the results of those studies and speaking to other doctors that specialize in treating vector borne diseases it’s recommended the patient should be treated with a longer term of antibiotics either through IV (intravenous) or oral methods. 

   Studies that show persistent infection:
"Lyme disease bacteria take cover in lymph nodes, study finds"
"Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection"

   The month of May is "Lyme Disease Awareness Month".  This year there will be different events around the country and other countries as well.  Please read all the links provided and learn all you can to protect yourself and your family from becoming a victim of this horrendous disease that also comes with it a stigma the likes of which has never been seen to this level.  
  

Wishing good health to all,  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

The Fight Against Legislation by the IDSA

Three Bills Seek More Guidelines, Study Of Lyme Disease Testing - Courant.com:

'via Blog this'

Glad to see the press getting more of these stories out there. 

The following is the typical whine when something isn't left as is in their "good ol boys" club.

"Eugene Shapiro, a professor of pediatrics and epidemiology at the Yale School of Medicine, is skeptical that a government-created task force would significantly advance Lyme disease research.

"My opinion is that creating political task forces through the legislature to determine medical practices is not a good idea for anything," said Shapiro, a member of the panel that wrote treatment guidelines for the Infectious Diseases Society of America in 2006. "Why would you single out Lyme disease?"

Shapiro said such task forces are likely to be heavily influenced by politics.

"Questions are best answered by scientific studies, not politically created task forces," he said."

My Thoughts:

Task forces have been involved in the medical field since medicine was organized into groups. Breast Cancer required lots of government action to get testing and treatments and information out to the public.

Same for AIDS, advocates had to go to capitol hill to get funding for studies and treatments for the patients. Rabies control is very much working hand in hand with the state and federal agencies.

Why is it that these few doctors working within the IDSA are so protective of their "Turf"?  Why too do I see these type of "poor us" statements in these articles, trying to claim that everyone looking for real answers are "anti-science"?

ID doctors are NOT the target or the focus.  It's not about who studied what, what crimes were committed decades ago, not about egos and most certainly not about grant and research money they might lose.  Lyme disease patients that are no longer leading productive lives and are now crippled because of lack of diagnosis and lack of proper treatment ARE and should remain the focus.

I so wish Shapiro, Wormser et al would get off their high horse and start acting like Doctors not whiny defensive children.

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.)