Watch the Documentary 'Under Our Skin'

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   I've been taking a brief intermission from the blog to work on my beads for bracelets and necklaces.


   I hope to get my little business, Cheryl's Beads and Bangles, off the ground in the next couple of months.



   Money I raise will help with rebuilding my basement and also help pay for my medical expenses which will increase when I move back to Kansas.

Hope this week has been a comfortable and good
week for everyone.

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

Discussion of Lyme History and Basics

   This is a very informative video you should share with your Doctor or health care provider. For more information about Lyme Disease and other diseases a Tick may transmit here are two very valuable sites.

Lymedisease.org formerly known as the California Lyme Disease Association. 

The International Lyme and Associated Diseases Society.

                          Joseph J. Burrascano, Jr., MD - Lyme Disease History and Basics.

The following is from:  http://www.youtube.com/watch?v=s_ZFF5Lh9iw

"Joseph J. Burrascano, Jr., MD is a well recognized specialist in the diagnosis and treatment of Lyme and associated complex infectious diseases, and the chronic illnesses that accompany them. With over two decades of experience and research in this field, he has appeared in and on virtually every form of media, has advised the CDC and NIH, testified before the U.S. Senate, an armed services joint subcommittee, and at various governor's councils. A founding member of ILADS, he currently is an active Board Member of the International Lyme and Associated Diseases Educational Foundation.

His current areas of interest include his ongoing project, The Lyme and Associated Diseases Registry™ which follows each selected patient from the beginning to the end of their illness, to try to divine out what the various symptoms mean, which tests are worthwhile, to identify the medications and treatments that have the highest likelihood of curing the illness, and to uncover any possible drawbacks to treatment. In addition, he is actively involved in study of the newly discovered retrovirus, HGV, thought to be associated with chronic neuroimmune diseases, including chronic Lyme. Finally, his lifelong interest in nutrition has come to bear with his present consultative work with various nutritional supplement suppliers.

No longer in clinical practice, Dr. Burrascano works full time in the biotech arena to further medical research in tick-borne and other chronic illnesses."

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

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