The Reality of Lyme Disease, Not Just Two Camps Anymore

http://whatislyme.com/the-reality-of-lyme-disease-not-just-two-camps-anymore/    Written:  5/4/2017 by Lisa Hilton, Wisconsin Lyme Advocate and patient

Lyme Disease

Camp A, B, C & D

I remember when I first finally got diagnosed with Lyme disease. I literally started screaming out of excitement to know what was wrong with me. For about fifteen long years I had been getting sicker and sicker and no one could figure out my ever changing symptoms. I went from panic attacks to joint pain to neurological symptoms throughout the years. Who would of known they were all connected? It sure didn’t seem like doctors thought they were since they were sending me from specialist to specialist depending on what symptoms I had and what part of my body that symptoms happened to be in.

Anyways, fifteen years into it, I finally had a positive Lyme test. I knew nothing about Lyme. I came to be tested after calling my doctor saying, “Now my hands and feet are going numb.” After a long line of symptoms such as fevers, low blood pressure, random pain that moved around, anxiety, gastro issues, cardiac issues… for some reason, when I told her this she responded quickly with, “Have you ever gotten tested for Lupus or Lyme disease.”

Honestly, I had no idea. I had no idea which tests all these doctors had performed. I just knew they had ruled out MS and Lupus through blood tests and MRIs. So she repeated the Lupus test and added in a Lyme test. The next day, a nurse from her office called and said, “Congratulations, we finally figured it out, you have Lyme disease. Go pick up three weeks of Doxy at the pharmacy and you will be ok.”

This started a long journey. When I was not ok in three weeks, and the doctor and their office seemed weary of my calls as I grew sicker on the Doxy, (none explained to me what a Herxheimer Reaction was) I was dismissed as a patient and told to go elsewhere for help. They referred me to an infectious disease doctor, which seemed upset I was “wasting his time” and asked me outright, “What do you want from me? You do not have Lyme disease.”

I was so confused. I said but you are the one that told my doctor I did. He responded by telling me that my Elisa was positive but  my western blot was equivocal and he told her just to be safe to put me on Doxy, and if I got better it meant I had Lyme and if I didn’t I should go see a psychiatrist.

After many horrible doctor experiences like this, I eventually found an online support group called, “LymeNet.” It was a life saver for me! I could not believe the stories I read on there. I was not the only one going through this. I was not crazy. This was a real disease and tests were inaccurate and doctors seemed clueless around the world about Lyme disease. I was in shock that this could be happening in this day and age. I could not believe patients could be turned away and denied and ridiculed.

One of the blog posts that struck me the most on LymeNet was called, “CAMP A and CAMP B, The Lyme Disease Controversy,” written by a user going by the pseudonym, “Tin Cup.” It explained the controversy of Lyme disease. It spelled out the different “sides” of the Lyme battle. There were two camps, Camp A and Camp B, one being IDSA doctors with their set of treatment guidelines and one being ILADS doctors and their set of treatment guidelines.

Camp A

Camp A consisted of the rules for treating Lyme disease put forth by the Infectious Disease Society of America (IDSA.) The Centers for Disease Control (CDC) uses these guidelines to tell doctors how they recommend you treat an illness. The problem is, insurance companies also use these guidelines to decide what medicines they will approve or not.

The IDSA recommends short course of antibiotics for Lyme disease. They give the impression that Lyme disease is easy to diagnose and treat. They do go into longer treatments for severe cases but go on to say that those cases are very rare and long term antibiotic treatment is usually not necessary. They seem to insinuate that Lyme disease is not a persistent infection and when patients still have symptoms after treatment they coin it, “Post Lyme Syndrome.” This gives the idea that it is just left over damage instead of a continuing infection.

Because of the CDC using the IDSA guidelines, insurance companies deny patient long term treatment even when symptoms persist. Another travesty of this set up is that doctors that are willing to try to treat their patients long term with antibiotics or any alternative treatments beyond the scope of the IDSA treatment guidelines get turned in by insurance companies, investigated and many have lost their licenses over this.

Camp B

Camp B is pertaining to doctors that believe that Lyme patients need to be treated with long term treatments, usually antibiotics. Although, as time goes by these “Lyme Literate” doctors are starting to add in more and more alternative treatments. But for the most part, over the years, “Lyme doctors” or Lyme Literate MDS, or LLMDs as Lyme patients call them have mostly used long term antibiotics usually via route of oral, picc lines or ports. You can find more information on the antibiotic use, picc lines and ports here. 

ILADS became the super hero for Lyme patients. They believed us, they understood we were truly sick and wanted to help us, despite pressure to conform to the IDSA and CDC views. They were the first organization to truly come out and say, Lyme disease is a chronic infection. It can persist even after short courses of antibiotic and it is not just damage, it is a persistent infection. See the ILADS Lyme Disease Guidelines Here.

ILADS also believes you cannot rely on the current faulty testing we have for Lyme disease. They believe your need specialty labs, such as Igenex or others listed here. http://whatislyme.com/different-lyme-tests-available-which-ones-are-worth-paying-for/ There are many reasons for this.  First, the Elisa is notoriously inaccurate http://whatislyme.com/why-lyme-tests-arent-always-accurate/ leaving over half the people who have Lyme disease with an incorrect negative test. Laws have even been passed, such as HB 962 in Virginia, in some states now insisting that doctors tell their patients that a negative Lyme test does not mean you do not have Lyme disease.

Secondly, the current tests have removed Lyme specific bands that are important when testing for Lyme disease such as bands 31 and 34 due to complications with the Lyme vaccine causing everyone to test positive for Lyme disease who had received the LYMErix vaccine. http://whatislyme.com/why-was-the-lyme-vaccine-pulled-from-the-market/  So instead of just asking people if they got the Lyme vaccine before having a Lyme test, they just removed these important bands from all current Lyme tests. Specialty labs still use those bands giving more accurate results.

Since this original post came out, I believe more camps have been added. Long term antibiotics have helped some. Others it’s hurt or not had any affect on. So, new camps of people trying to get better with new treatment options were born. 

Camp C

Camp C is a new camp emerging from a group of Lyme patients who are just not getting better with Camp A or Camp B Lyme treatment protocols. This camp is the “alternative” camp. This group of patients has done the IDSA short term antibiotic route. They have also usually done the long term ILADS antibiotic route. They are still not better.

This group of patients is turning to what mainstream medicine considers alternative, even through ironically, much of it was the “original” medicine used for years. In some cases it’s like, “back to the basics.” People are changing their diets to cleaner, organic, raw, grass fed, natural foods. Other alternative treatments are more extreme or “New Age,” such as turning to Rife machines, energy testing, biofeedback machines. And then there is going back to traditional old fashioned Chinese medicine, acupuncture, chiropractor, homeopathic, herbs and supplements.

Of course some patients will combine Camp B and Camp C. Many Lyme doctors are now doing the same. Most of these patients have become scholars in their own right on anything from supplements to pharmaceuticals to any illness that comes along with Lyme disease such as co infections, adrenal and thyroid conditions. We know about organ systems, body chemistry, dietary influences, side affects from anything from medicine to histamine producing foods. We remind our pharmacists of interactions, we tell our doctors about the latest research, we know when  a doctor is lying to us or being condescending. We are educated.

This was not to sound cocky. This is just what we have had to do to survive.

Camp D

Camp D is the “self-treaters.”  The lost ones in the Lyme community. Most are either self treating, or not treating at all. Insurance companies won’t pay for many of the alternative treatments. Most LLMDs cannot take insurance at all for risk of the insurance companies turning them in for treating outside the IDSA and CDC guidelines. So this group of patients is left to self treat if they can even afford to do that.

This camp of patients tends to research and learn about all sorts of treatments, supplements, protocols online. They are forced to. They are sick, usually have lost everything, many are homeless or living with family or friends. They have lost friends, jobs, houses, marriages, even their children to the court systems. They have no way to get to doctor appointments or to pay for them if they do make it there. If they make it to a Lyme doctor or specialist once, it’s hard to get back a second time to follow up.

Many times meds, and almost always supplements are totally out of pocket costs. It is nearly impossible for Lyme patients to get on disability as it is not recognized as a chronic or disabling disease. Treatments like chiropractic, acupuncture and energy testing can really benefit a Lyme patients but will usually not be covered by insurance,

We lose many to suicide in this group. 

This article is sad, might make one feel hopeless. This is not the intent of this article. It is really the opposite. I am writing this article to plea with “the powers to be” whoever hold the power to change things, to please do so. We are desperate. We are sick. We are losing people in our community. We are asking for someone to notice, for the IDSA, CDC or whoever has the control or power to stop the ignorance and denial and make change happen. 

Until then, we will continue to raise our voices, rally, protest, educate ourselves, educate the public, turn to the media, write songs, write poems, take pictures, make videos, do blog posts and Facebook statutes for Lyme awareness.

We will not give up until things have changed. 

For more information please see Lisa’s website:  Whatislyme.com