There is no one better equipped to spread the word about Lyme Disease than you – a sufferer. There’s something authentic about relating to people your personal story.
Highlights of what’s important to share:
1. Lyme Disease is usually a complicated illness for most people as we are infected with far more than borrelia, the causative agent of LD. All of these pathogens work together to evade the immune system. Symptoms vary from person to person and can be anything. If someone is concerned, they should start by filling out some checklists which can be found here:
2. Most general practitioners have been educated that LD is hard to get and easy to treat with 21 days of Doxycycline. This is far from the truth unless you are lucky enough to see the tick on your arm and have the classic bullseye rash, and even then it’s Russian Roulette.
3. Testing in a word, sucks. The two-tiered blood testing the CDC supports (ELISA and Western Blot) is no better than a coin toss, and borrelia don’t like to hang out in the blood but rather in immunopriviledged sites like your brain and the synovial fluid in your joints. Going to a regular practitioner and taking the standard tests, if you test negatively, will give you a false sense of security while you may very well be infected. On the other hand, if you test positively, they will treat you with 21 days of Doxy. If symptoms remain they are more likely to give you an anti-depressant than further treatment – while hideous infections are allowed to fester and worsen. While Doxy is a wonderful first-line drug it does not work against Babesia and some other pathogens.
4. The earlier you jump on this the better. Research shows that those who get treatment right away are far more likely to kick this than those who wait. Since many symptoms mimic the aches and pains of age, many chalk up their symptoms to the aging process rather than a disease which can worsen over time and kill – with the ability to enter every organ in the body.
5. After filling out the checklists above, if you have a preponderance of symptoms, get to a Lyme Literate Doctor (LLMD). They are specially trained by ILADS (The International Lyme and Associated Diseases Society) and understand the complexity of MSIDS (multi systemic infectious Disease Syndrome – or Lyme with friends). They typically use a far more sensitive test – that while still a blood test – shows many more elements. They also will diagnose you clinically – not just on what a test shows.
6. One of the best ways to inform folks is to have them watch the documentary, “Under Our Skin,” which does a superb job of showing the schism in the medical community as well as real people who are suffering due to the politically incorrect position of MSIDS in the medical community. Nothing quite replaces seeing 30-40 people all saying, “I was diagnosed with MS, Lupus, Chronic Fatigue, and the whole time I had Lyme Disease.” It is a sad but effective movie that most accurately expresses what MSIDS patients face. For me it nailed my diagnosis before I had seen one doctor – it’s that good. I bought 4 copies and dole them out to people. It’s the best investment in people you could make – besides your time.
7. Bring people to your local support group. Being in a room full of people fighting the same battle is something to behold. Often, this disease isolates folks, even from their own family and friends – as it’s almost impossible to believe unless you are walking the path and have experienced it personally. The sufferers that bring their spouses and family feel much more supported – but for those that don’t have support – the support group is a great place to feel understood and believed, as well as to learn as we educate each other. Many have been marginalized for so long from supposed “professionals” that they are quite beaten down and low. Come up along side them and listen – supporting them in any way you are able. Those actions will do far more than you could ever know.
8. Feel free to copy these things to keep them in your purse or car. That way you have some information at your fingertips. Also, https://www.lymedisease.org/lyme-basics/resources/books-articles-videos-links/ here are some great resources to check out.
9. Never give up hope.
10. Next Madison Lyme Support Group meeting: May 14 from 2:30-4:30 and May 28 same time with Dr. David Baewer from Coppe Labs in Waukesha. Bio forthcoming.