Tuesday, May 14, 2013

Moving

Yep, Moving..............that wonderful time of everyone's life.  NOT!!

I'm pretty happy to be moving back to Kansas and see my other 3 Children and 5 grandbabies.  I will be one busy camper when I get there with all the fixing up my fixer upper house needs. The sale of my bracelets are going super slow in it's start up so I will be trying to get a job of some sort when I get there. First priority will be gutting the basement, then rain guttering for the roof (praying roof doesn't need replaced), the main water line to the house replaced and about a thousand other things including tearing down the garage before it falls over.  I may or may not get internet for quite a while, depends on income of course.  Everyone will be hearing less and less from me over the next couple of weeks but be assured I will be back somehow.  I'm so going to miss the east coast, well not the hurricanes or the damp gloomy wet cold winters, but I really love the people in this area.

When my house becomes livable again I'll be back to my lyme disease awareness projects and hopefully my hobby of making beads will finally take off.

Love peace and much happiness to all,
                                                             
                                                                             Cheryl 

Wednesday, May 1, 2013

 

  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".

Gotta Love Beads by Cheryl

Beads by Cheryl:

'via Blog this'



   Starting this little business to help me raise funds for further treatment of Lyme disease and the co-infections that came with it.  Each and every bead is lovingly hand colored, cut, rolled and glazed.
   With each bracelet purchased comes light and love as I only think happy thoughts while making them.  I want to share my happy past time with you and I hope you love my work.

Click the Link at the Top of this page and check them out.  Every order helps me get closer to my goal.

Love, Light and Happiness to all my friends out there,

                                                                              Cheryl   


Friday, April 26, 2013

Adding to your diet instead of taking away.

Most lyme disease patients are told No to many foods. 

No Sugar, No Dairy, No Gluten, No Caffeine, and no carbs. I think our focus should be the yes foods and the foods that will help us heal faster. I can't promote going 100% without dairy or healthy sugars or carbs. 

Yes, while taking antibiotics you want to maintain the balance in your gut so that systemic yeast doesn't take over but our bodies still require good and balanced nutrition regardless what bacteria, worms or other critters are living in us. 

We are naturally host to billions of bacteria that play a healthy role and very little is really understood about what our bodies rely on. We strive to be sanitary but that is not possible. I suspect that those that end up worse after treatments have destroyed too much of that healthy balance.

Anyways, to stay positive look for the can do things. Instead all those no no's let's focus on the yes yes. :D



We can add healthy items to our diet and make sure they are eaten before any thing else or we can just substitute items in our favorite meals.

Here's one example I discovered. I love chilli, all kinds and loaded with cheese, some with hamburger and some with steak. I found that kidney beans for me is not the musical food like pinto beans.

Also, I actually like ground beef in my chilli over shredded meats. Substitute regular for the lowest amount of fat content or have butcher grind some for you with what meat you choose without the fat added.

I found that if I make brown rice (organic of course) and put about a cup full of cooked brown rice in the bottom of my bowl before dishing out the chilli into the bowl I get quite a meal that keeps me full longer. I'm actually cutting in half the amount of chilli I used to eat in one sitting.

That was only one example of how to continue to eat the foods you love so that they love you back.

Good 'ol Romaine lettuce is a fantastic bread substitute. What ever you put in your sandwich can be wrapped with a leaf of lettuce instead. Mustard though didn't strike my tasty buds very well.

One thing that I can not handle is fake food, imitation mayo, cheese, fat free, etc. some how in their messing with products to make it seem like the real thing that stuff tastes awful. I'm still learning what real foods can make good substitutes.

Here's a great site with some healthy add in foods for natural detox foods.  Top 15 Cleansing Foods

Hoping everyone has a healthy and delicious day,  Cheryl

Friday, April 12, 2013

NYC Forum on Silent Epidemic of Lyme and Tick-Borne Diseases


NYC Forum on Silent Epidemic of Lyme and Tick-Borne Diseases:

'via Blog this'

This is one of the best examples of what we as patients need to see more of.  The Tick Borne Diseases Alliance is promoting conversation and that conversation will lead to more answers for us.

The Infectious Diseases Society of America representative did an excellent job of stating his opinion with out belittling patients and the doctors we use for treatment.  All I can really say here is BRAVO and ask that when we descend on Washington DC on May 25th this year that we also remember to keep the conversation going.

This is an excellent video to watch and share and I'd like to say a big THANK YOU to the TBDA for all their work in bringing awareness and keeping the doors of progress open.


Wishing everyone a bright and beautiful day,
                                                           

Sunday, March 31, 2013

Watch the Documentary 'Under Our Skin'

Thank you Hulu for making this possible.





Check out This Youtube Channel. Please subscribe and share with others so we can continue to spread the word about Tick and Vector Borne illnesses.


Thursday, March 28, 2013


   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.

Tuesday, March 19, 2013

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

Saturday, March 9, 2013

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. 



                          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."

Thursday, March 7, 2013

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



Wednesday, March 6, 2013

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
 

Monday, February 25, 2013

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

Sunday, February 24, 2013

True Shortage of Critical Drugs or A Price Hike Coming?

Read article here:
Medication shortage woes persist - Pittsburgh Post-Gazette:

'via Blog this'

"What is happening -- and not just with doxycylcine -- is a continuing problem of shortages among formerly common medications. The U.S. Food and Drug Administration website, www.fda.gov/Drugs/DrugSafety/DrugShortages/ucm050792.htm, currently lists more than 100 medications in short supply".










This is one of those chin scratching moments.  When something like this happens most people would be asking why.  Why is there a shortage and when will the medications be available again?

We should expect to see such a shortage due to a pandemic or epidemic but we've had neither.  We do know that the US military has stock piles of medications and that Tetracycline and Doxy are stored in mass quantities.  We are left to assume then that maybe it's time for those supplies to be replenished.  But since that is common knowledge why are we not being told of the cause of the shortage?

A huge percentage of our medications are manufactured in Brazil, India and other areas around the world.  So, is this shortage due to a dispute with those companies?  Or better yet is this a price hike?  A tactic that if pulled in this country could be illegal. Perhaps it's not illegal elsewhere, then this shortage could be a manufactured shortage to raise the price of prescription drugs.  


The United States has one of the highest costs for medication in the world. We (the patients) can't afford any more increases in the cost of our medications.

We need to seriously make a bigger effort to bring manufacturing back to our shores again. Not just medication but all the other items that are now made over seas that we rely on. Clothing, toothpaste, dog and cat food, medications, weapons for our military and many many other items.

Something about this shortage smells really putrid, lets bring it back home again where we do have some control over the amounts and quality of the pharmaceutical industry. 

Saturday, February 16, 2013

Cat Scratch Fever and Mental Illness

The Bartonella Epidemic: Your Cat Can Give You Mental Illness:

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   Cats are not the only carriers of Bartonella, it's also transmitted via body and head lice and seen in most part in the homeless population. More information on Louse Borne diseases Here


   The above article states that just over 26% of our population has some sort of mental illness.  Could it be that this Bartonella Epidemic be caused in part by all the abuse our immune systems have suffered?

   I honestly believe those numbers are inflated due to all the antidepressants handed out for pain management and increased diagnosis of mental illness causing unknown illness.  All those "syndromes" that are being treated as a somatic disorder.  Even with bacterial causes there has to be something going on in the gathering of statistics that say that 26 out of 100 people suffer mental illness. That in itself is mind boggling.

   Vaccines, Plastics, Food additives, polluted soil air and water. Are all things that were not part of our everyday exposure a few generations ago.  In our goal to save every life and cure all illnesses and our goal of making lots and lots of money we have actually done the opposite.  Our immune systems are, well were, fine tuned machines. We'd be exposed to something and if we lived that immunity would be passed on to the next generation.

   Polio was tragic for sure but there were survivors. I can't help but wonder that if left alone our bodies would have been able to defend against it in a few generations.  The common cold was deadly for the islanders in Hawaii. Their bodies hadn't fought it off yet.
Even during the black plague there were some that didn't die and just recently there's been a genetic link showing that those survivors passed on the immunity and today those that carry that particular gene are also immune to HIV/AIDS. More Here

I feel we have over done the artificial stimulating of our immune systems and now we have a record high amount of autoimmune disorders, mental illness and Autism to name a few.

Monday, February 11, 2013

Would you have this guy as your doctor?

Infectious Diseases ch 07 12 Lyme Disease - YouTube:

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Update Number 3!!! 3-7-2013:  And he's gone again!  This would be really funny if this wasn't such a serious topic. Doctor Conrad, if you're reading this, It's WAY too late to keep hiding.  Countless numbers of people already have seen your video. You might as well stay public.

Update number 2:  He's back? Apparently he's proud of his work and the college he works for see's nothing wrong with his teaching style.  If you haven't watched this video you really should.


Update:  Video was removed due to whomever put it out there didn't have permission from Dr. Conrad. This post however will remain as a reminder that what goes on in private eventually ends up VERY public.


Ok, this is supposed to be what, an audition? Can this be real? If so this "Doctor" needs to go back to school.  

Lyme disease patients have complained about this sort of behavior from their primary care doctors and even some ID doctors.  

Is having a long term chronic bacterial infection that funny?  I have to wonder about his state of mind maybe?  I've sat in many classes and never saw this from anyone who took their job seriously.  

All I can say is maybe it's time for a new way of teaching that doesn't include poking fun at a very serious disease.

Friday, February 8, 2013

The Fight Against Legislation by the IDSA

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

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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.

Thursday, February 7, 2013

What would Einstein say to the IDSA?

The IDSA, Looking for answers in all the wrong places

Scientific arguments in the past:

The world is flat.
Man cannot withstand speeds over 35mph.
Travel in space is impossible.
Only gays need to worry about AIDS.
Blood letting was the cure.

I think the IDSA needs a reminder of what their jobs are. Throughout human history Science and Medicine have evolved from just a passing thought to questions to probable answers. Those answers that were fact from the first moment have now become replaced with new facts.

Even Einstein was ridiculed by the scientific community when he proposed a different view on a subject.

The Infectious Diseases Society of America has taken up the same arguments as those before them when change of thought is on the horizon. Patients are crazy, the doctors that treat them are lying about their qualifications and the advocates are plotting against the scientific community.

This would be funny if so many patients weren't being thrown unto the roadside and handed anti-depressants for their pain and suffering.

Sunday, February 3, 2013

Here's a story that gets repeated over and over again.


"Over the years, as the various false diagnoses piled up and Lopresto’s symptoms worsened, doctors struggled to find an actual cause, highlighted by the January 2011 episode that could have killed her."
Read Story Here:
Hillsdale resident battles Lyme disease for more than a decade  - Hillsdale, MI - Hillsdale.net - Hillsdale, MI:

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   Campaign like articles are written by the ID doctors stating that after treating for Lyme disease, doctors should be looking at other possibilities for the continued symptoms.

   Quite the opposite is more often the story of many lyme disease patients. So many doctors across the country miss the symptoms that would say the patient is suffering from a vector borne illness and that patient won't even be tested.

   I first became infected in Southern  California. No doctor tested for anything except mono and strep, I was treated symptomatically. Doctors there are under the belief that Lyme is only an east coast problem.
   Arizona up in the mountains living among the deer, deer mice and elk are ticks a plenty, I was told after removing several ticks to just watch for a rash and clean the area well. He stated that since we aren't in Colorado or back east I had nothing to worry about. I got even sicker as time went.
   Kansas is also an area where Tick borne disease doesn't exist  I became very ill while working at a hog farm in a Cattle feed lot.  Many of those cattle came from all over the country and surely the hitch hiking ticks came along. Still, never tested while living there either. Ended up not able to work due to what my doctor at the time said was wear and tear arthritis and an anxiety disorder.  LOL! who wouldn't have anxiety living in pain and exhaustion 24/7 for years on end with no diagnosis.
   Now, I'm in NJ, went to an internal medicine doctor who said my symptoms fit me having a severe case of some sort of vector borne disease. Lyme disease is common in this area so he ran tests for that. Oh My! my tests came back positive for lyme disease and a couple of other infections. I was treated for awhile but I still have pretty much the same symptoms and it's been almost 3 years since I had the IDSA's "Excellent Antibiotic treatment".

   I have read their claims that if caught early there is a good chance you will be cured with their recommended protocol.  Not a single mention of what to do if, like thousands of other people out there, what you have is missed for months to decades, as in my case.  Doctors only know what they read up on and apparently there's an ID doctor at the Bethesda Medical center who strongly believes that you can only get lyme during certain times of the year. Some of these doctors are stating things as fact when there is no such thing in the guidelines.

   I feel, instead of an anti-patient and advocate campaign, the IDSA should just answer our questions and send the word out to more doctors that it's wise to test for vector borne illnesses even if the belief is that it doesn't exist in that particular area.  We know that birds fly, deer migrate and mice travel on airplanes therefore so do the ticks that feed on them.

Early treatment is the Key, but diagnosis is lacking.

Saturday, February 2, 2013

Not Science Being Attacked! Just the "opinions" over writing Scientific research.

Bullying Borrelia: When the Culture of Science is Under Attack:

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This mentality STILL blows me away!! The proverbial "Pot calling the Kettle Black". 

In what era was the medical field allowed to act with such vile contempt towards a group of patients when their only crime is asking for answers? The more we ask the louder and more insulting they become. 


What's being argued about? The term 'Chronic' that's it the whole issue in their mind, oh and long term treatment with antibiotics, which by the way is used to treat TB, Whipple's Disease, syphilis and don't forget acne.

For some unexplained reason it has become a personal attack on them in their view that Lyme disease and other vector borne diseases only require a short amount of antibiotics. They preach the dangers of long term antibiotics but fall short on real answers so, like Auwaerter, become angry and behave like school yard bullies. Accusing the patients and advocates of some sort of conspiracy and calling them "Anti-Science".

Personally, science has been my favorite subject since I was a child. This group of ID doctors that put these defensive attacks out there in such journals as the American Journal of Medicine and the Lancet, is NOT science.

Science has some fundamental rules but as time goes by it is also fluid and ever changing. Many scientific "facts" have become myth later when answers become clearer and the reverse is also true, myth becomes fact.


Our Crimes: 

Asking why we continue to be sick after their recommended dosage and duration of antibiotics.

Asking for us, the patients, to make an informed decision about our course of treatments, whether or not it's more antibiotics or holistic treatments.


Asking for better and more precise testing, doctors ARE relying on the test and NOT diagnosing clinically which is leading to months and in many cases years of being infected with tick borne bacteria doing it's damage.

I am beyond shock when I see these articles written by so-called "experts" saying that myself and others are anti-science and that we are for some unexplained reason trying  damage the medical community.  

Find a Sign in this Picture that is "Anti-Science"