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