Don’t forget our meeting this Saturday: https://madisonarealymesupportgroup.com/2019/12/17/january-2020-support-group-meeting/
January Support Group Meeting Reminder
WE VOTE AND WE CARE!
THIS IS A CALL TO ACTION:
For years, as Legislative Counsel to the National Capital Lyme Disease Association, I have been contacted by individuals and organizations around the country, to assist in legislative pursuits. I have drafted legislation, educated and spread awareness to State and Federal Representatives, as well as advocates, testified and supported others. Today, I am pleased to introduce to you a tool that has assisted us in all of our campaigns.
This site allows you to contact your State and Federal Representatives by simply filling out your name and address. It’s easy! Simply select from the issue(s) on which you wish to comment, click on the link and the letter will appear. After carefully reading it, if you feel that it accurately represents your position, fill out your name and address and when you hit send, the e-mail will be forwarded to all of your State and Federal Representatives. There is a dialogue box in each letter for you to add your own personal story, should you choose to do so.
Advocacy groups can draft a message with their specific bill’s title and number to appear in the dialogue box. It is the intention of this site to gift to you, the ability to use your voice with impact. Please treat it with respect as we value our relationships with all our Representatives.
You can contact your representatives on the following issues:
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Lyme Disease Testing
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Access to Lyme Care
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Insurance Coverage for Lyme Treatment
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Patient Election Bill
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Education Bill
Susan R Green, Esq.
This site is operated by Susan R Green. For additional subjects, please contact her at SGreen@hardball-law.com
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To send a note to your representatives and senators, just click on the top link. You can send notes regarding the 5 topics above or as many as you like. This really makes it easy to share your story with those who can change things. I did it and it took less than 5 min. They give you space to share your story and they also have a blurb on how Lyme disease is a huge problem. Fantastic tool for patients to use.
Please spread the word and get this tool into the hands of more patients.
https://www.scotsman.com/health/doctors-attacked-for-belittling-tick-borne-illness-
Doctors attacked for belittling tick-borne illness

A man who tested positive for a potentially deadly tick-borne parasite has criticised infectious disease specialists who, he says, belittle and dismiss private test results.
David Francey has endured four years of hell which he says has left him feeling like he’s been poisoned since first collapsing on a trip to China where he taught local children English.
Francey was eventually diagnosed with Lyme Disease, active Babesia microti and several other tick-borne diseases, having paid to be privately tested through Armin Labs in Germany who specialise in diagnosing rare types of infection.
This followed numerous visits to his GP, hospitals and him testing negative for Lyme Disease after taking the standard NHS test.
The former teacher, who is in his late 30s and lives in Glasgow, has not been able to work in the last four years and has suffered from an array of debilitating symptoms including chronic migraine, joint pain, visual disturbances and fibromyalgia.
He told Scotland on Sunday that people with his illnesses are “trapped in limbo, we are the undead”, and said that an alarming number are having their private test results rejected by Scottish doctors.
Francey added: “My issue here is that I’ve tested positive – fair enough, not through NHS tests, but test results coming from accredited laboratories that should be merit further testing in my opinion, especially when a patient is suffering severely and symptomatic.
“There is an alarming number of patients experiencing a similar situation – private test results rejected without NHS tests being offered. Some patients are so desperate that they’re self-treating with antibiotics.
Last month it was reported a malaria-like infection called Babesia venatorum which can be passed to humans has been found in Scotland for the first time.
The University of Glasgow’s School of Veterinary Medicine published a paper saying the parasite had been recorded extensively in the Far East including China.
Several co-infections, including Babesia, have been documented in Scotland while European, French and Turkish studies found many other pathogens in ticks.
Francey said: “Lyme Disease is known as ‘the great imitator’ due to the diverse nature of symptomatology. “Testing is needed – vets know more about these infections than doctors.
“The infections exist but doctors are not looking for them.
“Infectious disease doctors belittle these private tests whilst offering no tests of their own. Important research is being overlooked. The field is labyrinthine. Research is needed, urgently.”
Misdiagnosis of Lyme Disease is common because its symptoms are so varied – even from patient to patient – -and can be similar to other illnesses such as fibromyalgia, chronic fatigue syndrome, multiple sclerosis and also things like depression and flu.
Professor John Lambert, of the Lyme Resource Centre and UCD School of Medicine in Dublin, said that “various species” of Babesia have been found in abundance in deer and sheep in Scotland.
He added:
“Patients in Scotland are having great difficulty getting tested for tick-borne infections other than Lyme Disease. Tests from private laboratories are often not accepted. Because of chronic underfunding, the Scottish Lyme Disease and Tick-borne Infections Reference Laboratory has no accredited tests for tick-borne infections other than Lyme Disease.”
The belittling of CLIA-certified labs is an age-old tactic by the CDC:
I actually heard a Madison pediatrician use this very label when he spoke at the state Capital. He was just about booed out of the room by patients.
- Larger labs ONLY look for B31 strain of borrelia, whereas CLIA-certified labs look for numerous strains and genospecies of Borrelia, lowering the risk of false negatives
- Larger labs read the results by visual inspection, which can be affected by technical operator variability, whereas CLIA-certified labs utilize densitometry software which allows for higher precision and better reproducibility.
https://rawlsmd.com/health-articles/how-to-work-with-a-doctor-whos-not-lyme-literate?
How to Work with a Doctor Who’s Not Lyme Literate
by Dr. Bill Rawls
Posted 12/24/19
Though the prevalence of Lyme disease is rapidly growing, it remains a lesser known and widely misunderstood disease compared to more commonly seen conditions like cancer and heart disease. So it makes sense that it might take certain circumstances to pave the way for a medical professional to take an interest in treating Lyme disease, especially when symptoms move from being an acute infection to a chronic illness.
In many such cases, doctors who have expertise in Lyme — known as Lyme-literate medical doctors (LLMDS) — have a personal history with the illness, have seen family members or friends try to navigate the complexities of tick-borne infections, or have a medical practice in endemic areas. Typically, you can find an LLMD through online support groups, websites like the International Lyme and Associated Diseases Society (ILADS), or via word-of-mouth referrals.
Take, for example, Dr. Bill Rawls, Medical Director of RawlsMD. He had a busy practice in obstetrics and gynecology, and his hectic schedule wreaked havoc on his sleep, eating habits, and stress levels. In his late 40s, he began experiencing persistent flu-like symptoms, and for a long time, neither he nor other physicians were able to pinpoint a cause.

Eventually, Dr. Rawls was diagnosed with Lyme disease, but successful treatment remained elusive. He reached a point where he had to take healing into his own hands if he was going to experience lasting relief from symptoms like insomnia, fatigue, brain fog, and joint pain. Out of his personal recovery journey, his passion for herbal therapyand affordable treatment options for patients was birthed, and now, he seeks to help others understand this complex illness.
Maybe not so surprising, then, is the fact that the average healthcare provider (family practice or internal medicine) at your local clinic probably doesn’t have the same personal Lyme experience, knowledge base, or time to dive into the complicated world of tick-borne diseases. With that said, there are certainly times when you might need a primary care provider (PCP) or a specialist to address issues that aren’t necessarily caused by Lyme.
If you find yourself in that situation, first keep in mind that most standard doctor’s appointments are only 15 minutes long, and optimizing your time together can be challenging — but not impossible! Below, we’ve highlighted some helpful and time-saving tips for you. Plus, you’ll find a handy printer-friendly one-sheet on Lyme basics that you can give to your doctor so that they can learn more about the disease.
After all, with incidences of Lyme on the rise, your doctor is likely to come in contact with more people who’ve contracted the illness, so working with you as a patient could benefit others like you in the future.
Before for Your Appointment
The night before an appointment with a new doctor can be a bit nerve-wracking, especially when chronic Lyme disease or other misunderstood illnesses like POTS, chronic fatigue syndrome (ME/CFS), or mast cell activation syndrome (MCAS) are part of your medical history. But by doing a little prep work beforehand, you can help things move more efficiently in a healthcare system that’s not designed to allow physicians to spend a lot of time with patients.
Obtain a Copy of Your Medical Records.
A new doctor may want to see a copy of your previous medical records either ahead of your scheduled visit or during it. You can expedite the time it takes to gather your medical information by obtaining a copy of your most recent tests, lab results, and treatment plans. In most cases, records from the last 12 to 15 months will be the most useful to a new doctor.
Bear in mind that a non-Lyme doctor probably won’t be familiar with routine Lyme tests like IGenex or mold markers. However, they will be able to see what other tests you’ve had done, and what the members of your healthcare team are doing to treat you.
Prepare Your List of Questions.
Do you ever feel like your mind goes blank during your doctor’s appointment, or you’re unable to recall all of your primary concerns were? It happens to the best of us, and then once you leave the provider’s office, it can be difficult to know how to directly reach the doctor again should the questions resurface (or new ones arise).
Rather than test your memory, take a few minutes the night before your appointment to think about the most pressing issues you have with your health. For instance, do you need a referral to a pain management specialist, neurologist, or cardiologist?
Whatever the case may be, grab a notepad or your phone and record questions or concerns that come to mind. This way, you won’t have to try to remember the important details you would like to discuss with a doctor while you’re under a time crunch.
Line Up a Friend or Family Member to Come with You.
Most of us are no stranger to the debilitating symptoms of chronic illness, and we know that many of the symptoms we endure are invisible. Things like pain, fatigue, or food intolerances can go unnoticed by a new physician on your medical team, which can leave you feeling disbelieved or unheard.

In those circumstances, where your pain and discomfort remain unseen, it can help to bring a trusted friend or family member with you to your appointment. That way, you have someone both on and by your side who can confirm and validate your experiences, and fill in the timeline of events in areas where you may have forgotten. Additionally, your friend or family member can assist by taking notes during the appointment to help you recall what the doctor said — a process that could be impaired if you have a high degree of pain, sleep disturbances, brain fog, or other symptoms that impact cognitive function.
During Your Appointment
If you walk into an appointment expecting more than your doctor is capable of doing, you’ll undoubtedly walk out feeling discouraged.
“One of the primary reasons a patient leaves an office visit frustrated is because they have an unrealistic view of the type of care the modern medical system is designed to provide,” says Dr. Rawls. It’s structured in such a way to facilitate acute medical care, he explains, which typically involves prescription medications or surgical interventions.

As such, when it comes to addressing chronic health conditions, the options most healthcare providers have to offer you are (no surprise) drugs and surgery — which likely won’t resolve the underlying cause of the illness, but it might help you find some symptom relief in the interim. So don’t discount their recommendations outright, and keep the following in mind to make your appointment as productive as possible.
Be Pleasant.
There’s a good chance you’ll know more about your chronic illness than your doctor does, especially when it comes to nuanced conditions like Lyme disease and coinfections like Babesia and Bartonella. But Dr. Rawls advises against trying to best your healthcare provider with your knowledge, as that rarely leads to a productive outcome.
Instead, provide your doctor with a basic overview of what you’ve been going through, and offer to give them additional information or websites if they would like to do further research. You might discover that your doctor is willing to listen and support you on your road to recovery, even if they don’t fully understand Lyme disease.
Be Specific About Your Concerns.
Because the average amount of time you’ll have with your healthcare provider is 15 minutes, you won’t be able to address every issue that’s bothering you during one appointment. Rather than trying to touch on several things superficially, pick the top one or two concerns to address in more detail. Even then, understand that the best tools your doctor has to offer you include medication or a procedure.
As a personal example, I recently went to my PCP with the understanding that she doesn’t know much about Lyme disease, though she admits it can be complicated to treat. I already had a doctor who managed my Lyme protocol, so I didn’t need her to have a high degree of knowledge regarding tick-borne diseases — I simply needed her not to dismiss them.
Also, my complaint wasn’t necessary Lyme-related; I was having some pain in the area of my gallbladder, and I wanted to see if I had developed an acute condition such as gallstones. She listened to my concerns and ordered a kidney ultrasound for the next day. My tests came back normal, and the pain more or less resolved on its own after a few months. Still, I was grateful for the peace of mind the procedure gave me to ensure there was nothing wrong with my gallbladder.
If you have several areas or symptoms to discuss, be mindful of the fact that you may need to make a few follow-up appointments with your doctor to have adequate time to address your concerns.
Wrap Up the Appointment with Your Final Questions.
As your appointment comes to a close, take one last glance at your notes to see if your top areas of concern have been addressed, and whether your questions have been answered. If not, take a few moments to inquire about the remaining problems. If you have several more areas or symptoms to discuss, make a few follow-up appointments with your doctor to adequately address your concerns.
You can also ask the doctor or nursing staff how best to communicate once you leave the appointment. Nowadays, many hospitals and clinics have an email system where patients and physicians can more easily correspond with each other.
After Your Appointment
Once you leave the doctor’s appointment, feel free to take some time to research the medication, referrals, or procedure they’ve prescribed to you before you move forward with filling a prescription or scheduling the next steps. You can also ask questions regarding medication interactions with your pharmacist.
Ultimately, the decision to add a new member to your healthcare team is yours. Although many doctors and specialists might not have expertise when it comes to Lyme disease, you need one who listens to you and doesn’t cast aside the idea of Lyme disease. If a healthcare provider is unable to establish this type of rapport with you, maybe it’s time to fire your doctor and find a new one.
1. Health Trends Lyme Disease. Quest Diagnostics website. https://questdiagnostics.com/home/physicians/health-trends/trends/Lyme-Disease-Health-Trends
2. Lyme and Other Tickborne Diseases Increasing. Centers for Disease Control and Prevention website. https://www.cdc.gov/media/dpk/diseases-and-conditions/lyme-disease/index.html
3. What is Lyme Disease? Global Lyme Alliance website. https://globallymealliance.org/about-lyme/
4. How many of those with Lyme disease have the rash? Lymedisease.org website. https://www.lymedisease.org/lymepolicywonk-how-many-of-those-with-lyme-disease-have-the-rash-estimates-range-from-27-80-2/
5. Lyme disease testing. Global Lyme Alliance website. https://globallymealliance.org/about-lyme/diagnosis/testing
6. Melia MT, Auwaerter PG. Time for a Different Approach to Lyme Disease and Long-Term Symptoms. The New England Journal of Medicine. 2016 Mar 31; 374(13): 1277-8. doi: 10.1056/NEJMe1502350
7. Rudenko N, Golovchenko M, Kybicova K, Vancova M. Metamorphoses of Lyme disease spirochetes: phenomenon of Borrelia persisters. Parasites & Vectors. 12, 237 (2019). doi:10.1186/s13071-019-3495-7
8. Strle F, Nelson JA, Ruzic-Sabljic E, et al. European Lyme borreliosis: 231 culture-confirmed cases involving patients with erythema migrans. Clinical Infectious Diseases. 1996 Nov; 23(5): 1202. doi: 10.1093/clinids/23.1.61
9. Bransfield RC. Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist’s Clinical Practice. Healthcare. 2018; 6(3):104. doi: 10.3390/healthcare6030104
https://products.mercola.com/liver-supplement/?
“This Workhorse of an Organ Can’t Signal for Help – Until It’s Often Too Late”
Your liver endures a tremendous amount of stress and toil, 24 hours a day. Hidden from sight, it doesn’t provide many clues as to its well-being. Yet it depends on you to give it the care it needs. Are you doing all you can?
By Dr. Mercola








