12/30/2025
I am just now getting around to posting my notes from watching the several hour Lyme Disease Roundtable session by the federal government on December 15. Read on if you are interested in what was said.
Notes:
The federal government admitted chronic Lyme disease exists. They are going to identify only labs that are accurate for Lyme testing...I know that IGenex, Galaxy, & Tlab are and others aren't.
Spending 107 billion on Lyme science, clinical trials, etc.
Said 20% of all Lyme cases in US cause chronic Lyme disease issues.
Mentioned Alpha-gal specifically.
Said that 33 years ago doctors told patients that 4 weeks of Doxy made Lyme go away. We still have the same treatment today which is ineffective.
Going to update Lyme disease guidelines to include tickborne coinfections which are often not looked for by providers.
They will put together a suggested tickborne panel to test all patients that have brain fog, fatigue, autoimmmune issues, etc. for Lyme, Bartonella, Babesia, RMSF, Ehrlichiosis, EBV, etc. Will work on mandating insurance to cover these lab panels.
Dr. Steven Phillips mentioned he got debilitating Bartonella disease from sustaining spider bites while in bed. He is currently doing research at Baylor University.
A student from Cedarville University spoke who has had chronic Lyme disease for 5 years. He mentioned Dr. Jordan Vahn (spelling) - long Covid doctor as well.
Olivia Goodreau saw 51 doctors over 18 months before she got diagnosed with Lyme. It took 3 more years and 4 more doctors to be diagnosed with 4 more tickborne coinfections.
Dr. Linden Hu is using research to test 100,000 medications to see how they treat Lyme disease. An AI model will be used to figure out the best way to utilize these.
The FDA is working on clinical trials for a Lyme disease vaccine.
Representative Morgan Griffith spoke about having Alpha-gal that caused him stomachaches. He also mentioned some dryer sheets are coated with beef tallow so cannot be used by those with Alpha-gal.
Dr. Oz mentioned that there is a general short circuiting of the system when you have Lyme disease so MOST who have Lyme are diagnosed with other things like CFS, fibromyalgia, etc. instead of Lyme and other tickborne coinfections because those are not tested for.
Memory loss, joint pain, debilitating pain, destruction of family is seen in chronic undiagnosed (and diagnosed) Lyme disease cases. Dr. Oz says he cannot "even keep track of the amount of family members who have Lyme disease, much less my friends." Medicare is paying for chronic Lyme disease! They updated their website to make it clear it is now covered. Chronic care management section for Medicare is updated. The condition has to have lasted at least 12 months to cover chronic Lyme.
A new diagnostic tool is being developed at UCLA that is a rapid test for Lyme and will be completed within 20 minutes. It will be able to be bought at local Walgreens stores. It has a 94% sensitivity rate.
Many patients with Lyme spend many years and all their savings only to find out the treatments they tried did not work.
Even 21 days after having contracted Lyme disease, current antibody tests even that are positive fail to be useful. We really need the right detection tests. Lyme bacteria have been extremely difficult to culture when the subject has had it for a long time. Even in a dog that gets bitten by a tick and becomes very sick, you cannot locate Lyme on a routine blood test 2 months later. Despite that, Lyme bacteria have been obtained live from those same animals even when blood tests showed they were negative for Lyme. Lyme has also been found in various human tissues (i.e. brain, teeth, etc.). We know the pathogen persists but we don't have a good way to locate it in the body. We can't even kill Lyme disease in a test tube with the antibiotics recommended by the Infectious Disease Society of America.
Bartonella is a beast. It is very antimicrobial resistant. There is only one class of antibiotics that actively kills Bartonella and that is aminoglycosides (per Dr. Steven Phillips, a medical researcher at Baylor University). Bartonella is an intracellular infection and passes the blood brain barrier. Normal antibiotics cannot get to Bartonella. Unfortunately aminoglycosides are horribly toxic after 2 weeks of use with urine and kidney toxicity so we have no good Bartonella treatment. In the next few years we will have AI designed drugs to help.
Lyme disease can mimic fibromyalgia, lupus, Rheumatoid arthritis, MS, ME/CFS (chronic fatigue syndrome). There are over a dozen studies alone on RA showing antibiotics work...because Lyme is the cause of many who have RA. Lyme is the cause of many people having diagnoses of
fibromyalgia, lupus, Rheumatoid arthritis, MS, ME/CFS (chronic fatigue syndrome), etc. There are also multiple studies showing antibiotics work for MS patients when standard MS drugs don't...because Lyme is the "cause" of the MS. Quite a number of these patients get better with antibiotic treatment.
The Infectious Disease Society of America lobbied heavily against the chronic Lyme disease bill. There needs to be something done to change infectious disease doctors to recognize chronic Lyme disease.
The state of Maine had a record number of diagnosed Lyme cases in 2024.
Dr. Robert Bransfield, psychiatrist in Middletown, NJ mentioned his work with Lyme induced autism. Has treated thousands of Lyme patients. There are 650 peer reviewed studies on the psychiatric effects and cognitive effects of Lyme disease. People with chronic Lyme have a twelvefold chance of substance abuse because of the severe pain they deal with. He has written 8 journal articles on 20 different infections (not just Lyme) associated with autism. "If you listen long enough, the patient will give you a diagnosis." He has developed a clinical diagnostic system and educational videos that anyone can use. People with chronic Lyme have a 12x chance of substance abuse. Clinical assessment is more accurate for diagnosis than current lab tests, as those are not very accurate. He did an autopsy on a guy that had chronic symptoms, went to many doctors and could not get help, got into substance abuse, then killed his friend and himself....autopsy revealed chronic Lyme disease in the brain. There is higher violence in areas of the country that have higher viral infection rates (so that statistic is not specific to Lyme only). We need to be more clear in broadening the definition of Lyme disease. He does a 2 hour diagnostic evaluation looking at 280 symptoms to assess for chronic Lyme disease.
Dr. Bruce Patterson says interleukin 8, interleukin 4, TNF Alpha are all inflammatory proteins linked to chronic Lyme. Many patients diagnosed with long-Covid actually ended up having chronic Lyme in a study. Retention of Lyme protein is showing up in monocytes that produce all the inflammatory proteins that cause brain fog, joint pain, etc. in chronic Lyme. In some of these cases there is not evidence of the Lyme bacteria itself replicating in the body leading to chronic Lyme, but instead the protein on the monocytes replicating and causing the chronic Lyme symptoms. These white blood cells can go through the blood brain barrier and cause neuroinflammation. We need to modulate the inflammatory white blood cells to have patients get better so we have to think of this differently and not just treat the Lyme bacteria but also treat the inflammation that results from chronic Lyme. Chronic Lyme is in the top 7 diseases impacting health worldwide.
You can't just think about the pathological agent that initiated the issue in the body. You have to also think of the patient's immune reaction...why do some people get chronic Lyme and others don't?
Prevention is also key, so lots of education of the public will be done on this. A tick the size of a speckle of pepper can sperad Lyme disease within a few hours of attachment (previously they thought the tick had to be attached for 48 hrs to transmit disease). It is a very smart bacteria that quickly gets out of the blood into the body's tissues. Clinicians need to understand that just because a patient does not live in the woods does not mean they cannot contract tickborne illness.
What works for one person to treat chronic Lyme disease may not be what works for another person. There is no consensus on treatments.
Mold and mycotoxins in the body exacerbate chronic inflammation and chronic Lyme disease.
