This is an incredible opportunity to learn, see the expert’s views, and ask questions. The experts have the knowledge, and if the CDC listened to them, healthcare services for all Tick-Borne Diseases would be widely available, and proper testing would happen at your doctor’s office.
Notice how the Center for Disease Control is not part of this meeting. Why is that? MONEY
The CDC sets the standard of care based on paid experts who choose not to believe in Chronic Tick-Borne Diseases that happen within a short period due to inaccurate testing methods used by doctors, proper testing can cost over $1,000, and there are only a few proper testing facilities, they are not covered by insurance and the diseases themselves manifest in undetectable ways, such as not having the Bull’s Eye Rash.
Two infectious diseases are TBD and HIV/AIDS which are extremely complex to diagnose. Why do I mention HIV/AIDS? My Lyme Literate doctor was one of the key players in discovering AIDS, he later took his knowledge to care for people with TBD. He was persecuted by his peers and lost his license, his house, and his practice. A year later his license was approved and he set up another practice focusing on treating TBD. During my 18 months of treatment for Lyme Disease, it was still treated as voodoo but he gave all to save my life. I can never thank him enough.
It also came at a very high price on my health and our finances since none of the treatments was covered. The total cost was well over $150,000, we had to take out a second mortgage on our house but EVERY PENNY was worth it because I’m alive today.
The US Department of Health and Human Services will hold two “public engagement meetings” regarding tick-borne diseases.
The first will be Tuesday, June 11, in San Francisco. The second, in Portland, Maine, has not been scheduled yet.
You can attend the San Francisco meeting either in person or online. Here are details:
When: June 11
9:00 a.m.-3:00 p.m. Pacific Time
Where: University of California San Francisco
Millberry Union Conference Center
Golden Gate & City Lights Room
500 Parnassus Avenue
San Francisco, CA 94143
.
Virtual and in-person registration is available.
Agenda
Agenda times are tentative and subject to change.
| Time | Agenda Item |
|---|---|
| 8:30 am – 9:00 am | Registration and Check-in |
| Morning Session | |
| 9:00 am – 9:20 am | Introduction and Welcome RemarksJames Berger, MS, MT(ASCP), SBB Office of Infectious Disease and HIV/AIDS Policy (OIDP)B. Kaye Hayes, MPA Office of Infectious Disease and HIV/AIDS Policy (OIDP)ADM Rachel L. Levine, MD U.S. Department of Health and Human Services (HHS) |
| 9:20 am – 11:00 am(approx. 20 mins each) | U.S Federal Agency Report-OutsCDC Tick-Borne Disease Updates Ben Beard, PhD, Centers for Disease Control and Prevention (CDC)Update on DoD-Funded Research and Activities Focused on Tick-Borne Diseases Gabriela Zollner, PhD, and Angel Davey, PhD U.S. Department of Defense (DoD)Updates on NIAID-funded Research and Activities Focused on Lyme and Other Tickborne Diseases Nadine Bowden, PhD, National Institutes of Health (NIH)National Public Health Strategy to Prevent and Control Vector-Borne Diseases in People Leith J. States, MD MPH MBA FACPM, Office of the Assistant Secretary for Health (OASH)Surveillance and Integrated Tick Management of Ticks of Human Importance Robert Miller, PhD, U.S. Department of Agriculture (USDA) |
| Virtual Poll 1: What themes would you like to see covered in our upcoming community engagement sessions? | |
| 11:00 am – 11:20 am | BREAK |
| Virtual Poll 1 Results | |
| 11:20 am – 11:40 am | Epidemiology and Prevention of Tick-Borne Diseases in CaliforniaAnne Kjemtrup, DVM, MPVM, PhD, California Department of Public Health |
| 11:40 am – 12:00 pm | Great Arizona Tick CheckKathleen Walker, PhD, The University of Arizona |
| Virtual Poll 2: What do you think are the most pressing needs for people with tick-borne diseases and/or associated illnesses? | |
| 12:00 pm – 1:00 pm | Lunch |
| Virtual Poll 2 Results | |
| Afternoon Session | |
| 1:00 pm – 1:30 pm | Public Comments (10 pre-selected commentators; 3 minutes each) |
| 1:30 pm – 2:30 pm | Panel Discussion of Questions Pre-Submitted by the Public Moderator: B. Kaye Hayes, MPA (OIDP)Panelists:C. Ben Beard, PhD (CDC)COL Michelle Colacicco-Mayhugh, PhD, PMP (DoD)Samuel Perdue, PhD (NIH)Leith J. States, MD, MPH, MBA, FACPM (OASH) |
| 2:30 pm – 2:45 pm | Concluding Remarks and Adjournment B. Kaye Hayes, MPA (OIDP) James Berger, MS, MT(ASCP), SBB (OIDP)What did we hear today? What’s next? |
Melinda
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lookingforthelight.blog 
Ticks have been on my mind lately (and a couple on my body) as ticks are more common in the area we are moving to. I was told by a doctor that North Carolina is number 1 for Rocky Mountain Spotted Fever. I’m going to have to stay out of the weeds, wear light colored clothes, and check myself better. Maybe put some deterrent oil on my ankles. I’m curious about why your treatment was not covered by insurance.
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Wear a hat that falls down the back of you your collar, white soaks with your pants tucked in, Spay the area your work most often, wash your clothes right away when your done. A SPF lightweight shirt with long sleeves, and cover you need. If deep is not an option, there is another option I can’t remember the name of. Use that only, not homemade protection. Be sure to check you hair and every creases of your body with a mirror. A shower is best after checking, and washing your hair. Once you spray your yard including the boarders of around your yard. White clothing is best so you can easily spot the smallest ticks. You don’t want Rocky Mountain Spotted Fever. It’s a lot but your health is more important. Just as I mentioned in the post, the CDC sets the policies and all insurance companies follow there guidelines. The only thing covered were my medications, which a couple had to be compounded which required a special pharmacy way across town and it was not covered fully. None of the supplements recommended were covered and quite frankly your to sick to keep 40 or so down. Yes, some have benefits but the only thing that saved my life was IV Antibiotic Infusions, close to 18 months worth. The cost of the port and hospital were covered and the removal was covered. People die searching for answers because our system isn’t set up to test properly, even the testing doctor’s do, they don’t do all the test available to them. And the Western Block test are not failsafe. You need detrimental spray over your entire exposed body, your socks, your clothing in areas they can fall into because many fall out of low hanging branches. All Tick Borne Dieases are Infectious Dieases and need a highly qualified Infectious doctor to diagnosis and treat. Most TBD also accompany other infectious Dieases. They are very unique, the parasites have a Biofilm on them that can avoid detection. They do for major organs and they set up house, eating away and damaging the area they live in. they also cause other illness along the way, like Adrenal Failure, organ failure and brain damage which is why I have. Until the CDC listens to the experts in our own government, nothing will change. It’s all about money, if they change to what the experts know they would set real policies and insurance would have to pay. All insurance, companies including Medicare, and Medicaid only pay what the CDC sets its policy on. Now they use a handful of so called experts who are paid, and they tell the CDC what it wants to hear. Take good care but you can still enjoy the outdoors if enough precautions are taken. Long winded but true. Very little research will show that the CDC doesn’t want to change its policies. :)
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I knew you’d have a wealth of information on this topic, Melinda. Thank you very much for telling it like it is. I am going to work on these precautions. Two of the ticks I found on me were so tiny, it was hard to tell they were ticks. I’m going to be washing my hair a lot.
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If you wear a hat, spray it, and the neck of with repellent you’ll have a bigger safety net. Spray your socks, after you’ve already sprayed your body, it’s double protection around your ankles and feet. The tiny ones are the scariest to me, they are the ones that are hard to find and settle in to infect you quickly. They don’t have to be long, I don’t recall the exact amount of time but it’s short. A magnifying glass comes in real handy and it truly takes two people to find all the tiniest ones. They can make their way to your pubic area quickly and if not very trimmed, shaved, or totally grey they are so difficult to find. And they don’t just land on the hair area. Check your butt crack thoroughly each time too, they look for a warm area to set up shop. You can go to ILADS sites and see what resources they have on there, that’s the association that Lyme Literate Doctors and Experts belong to. The real experts, not paid ones for their knowledge or lack of. I haven’t visited in years so they may have a ton of resources. The association wants to educate and help people understand TBD, how to prevent and how to treat it. Many of the doctors were persecuted by their peers like my doctor but they have the knowledge, and they continue learning every year at symposiums and additional courses. There is so much much much information, that I acquired over the years even beyond my treatment. TBD doesn’t have a cure, only excellent treatment from an Infectious Disease doctor. Every precaution is worth it because you don’t want any. Remember your local doctor uses tests, not even the full Western Block test and they are very inaccurate. If you ever start having unexplained symptoms and they pile up, run the most experienced Infectious Disease doctor to diagnose and treat. If caught in the first 4-8 weeks a short run of heavy antibiotics usually treats and it doesn’t become chronic. I have an extensive archive of posts on Lyme which may closely align with Rocky Mountain Spotted Fever. The only area I’m unclear on is how the symptoms manifest themselves, it is worth reading about. Each TBD is different and can wreak your mind and body and kill if untreated. People from die what may seem like natural causes like organ failure, dementia, and a heart attack,….the list goes on. I don’t wish that on anybody! Chronic TBD causes many other illnesses and they can be discovered years later. It’s the nasty gift that keeps on giving. I’m here anytime to share what you’ve learned and answer any questions I can. I think ILADS is a good place to start. There is an online magazine called Lyme Times but not all the info is a fail-safe. I just keep up with what is happening with TBD, read people’s stories, and learn about public meetings. Marty Horwitz is well known but his protocol is only supplements for which he sells. I look past the marketing and read the facts. Supplements didn’t save my life, antibiotics, and a multi-layer protocol that could change monthly and closely monitored with monthly visits and blood work. I know you believe in putting less in your body, but TBD doesn’t respond to that approach. It’s marketing and playing with people’s lives. :)
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Tick borne diseases are important to know because of the problems they cause, ones that typically are undetected. I have had tests for Lyme disease that were negative but a recent test ordered by the functional medicine doctor shows two positives for tick related diseases. I don’t meet with the doctor until the end of next month, but it will be interesting to hear what she says.
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Seek aggressive attention if you are suffering with many undiagnosed symptoms. I appreciate Functional Medicine but an Infectious Dieases doctor is what you need if you have active Lyme or other TBD. Take god care, take careful notes of any symptoms you may be having, they can run the gamut. :)
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You’ve sure had your fair share of illnesses Melinda. I see though that they don’t hold you back much.
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Not my style!
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