BAL Happenings Series
Dr. Steven Harris, a physician specializing in Lyme at Pacific Frontier Medical, was guest speaker as part of our Distinguished Speaker Series. His presentation on the complexity of tick-borne diseases is transcribed below to share his invaluable insights into novel treatment options for those living with chronic/persistent Lyme and other intractable infections that severely curtail patients’ quality of life, bringing hope and restoring health to many. Note: This transcribed presentation has been edited for clarity.
What is “Precision Medicine”?
“The concept of precision medicine, which is a growing area, is where we look at an individual and try to create a tailored plan for that person. I think many doctors wish that we could have a ‘cookbook’ approach to medicine that would work for our patients. But unfortunately, that approach doesn’t work. Luckily, here in the San Francisco Bay Area, there are doctors offering precision medicine including Dr. Sunjya Schweig in Berkeley, Dr. Christine Green, with us at Pacific Frontier Medical, and Dr. Eric Gordon, at Gordon Medical Associates in Marin and others. And thankfully, we have Stanford and UCSF (our local medical centers) that we work peripherally with. In addition, the Open Medicine Foundation is making great strides in understanding illness and Dr. Mike Snyder’s group at Stanford who are working on multi omics for chronic fatigue that track an individual patient’s data.
“These doctors are working in their own fields, not necessarily just tick-borne diseases, but our work overlaps. For example, the Snyder Lab multi-omic study involves genomics, epigenomics, metabolomics, where they are looking at tons of data and assimilating a lot of this different data to try to create treatment plans that work for the individual, because of the fact that a ‘cookbook’ approach doesn’t work for this group of chronic complex patients. For example, we look at someone’s multi-ome and the parts that make them up, including their microbiome, epigenome among many others, which is becoming a bigger and more exciting field. One of the practical aspects we try to determine is how to address an individual’s level of inflammation, the diversity of their personal bacterial flora, and how to help compensate for any deficiencies—or over abundances—that help contribute to disease.
“Precision medicine doctors are looking at as much data as we can, but we are also learning to incorporate treatments that illustrate how our bodies interact with an ever more toxic world, such as with glyphosate and organophosphates, toxic metals, among hundreds of others harmful agents. Some may argue that electromagnetic sensitivity or electromagnetic stressors are also affecting people. This needs more research and is still a very young field, but what providers report is that electromagnetic sensitivity does affect many patients. In addition, if we look at some of the old stalwarts, such as mold, actinomyces, and other biotoxins, these can contribute significantly to a patient’s burden of illness. So, taking a very detailed approach to looking at what external stressors someone has is really important.
Human Energy and Mitochondrial Function
“Another nascent area that is probably going to become bigger is mitochondrial work, i.e., mitochondrial function—at least in the ME/CFS world—which translates too many other areas, including the Lyme and co-infection world, because illness and wellness is fundamentally all about energy. The concept is that if we have enough energy to mobilize our immune systems and get ourselves to detoxify, and to absorb nutrients, the body will be able to function effectively on its own. The goal of treatment is to ease the body to do what it needs to do by itself without so much external intervention. That is one of the subtle things that we’re learning as we do this. The approach in the past has been, ‘there’s an infection and we want to knock the infection out,’ but many times we have discovered that healing doesn’t work that way.
“Dr. Eric Gordon describes the healing exchange as being like a dance that the provider helps the patient do with various treatments. You try to tease out the way forward to get on the right path, like finding that yellow brick road. And if we are able to do that leg work early on to eliminate the stressors, evaluate and optimize the mitochondrial dysfunction, etc., then we can often take a much more direct path to wellness.
“What is exciting is that there are new tests in the research world that assess mitochondrial function. Seahorse testing, for example, currently in the research phase, looks at ATP production and free phosphate production. We’ve been using mitochondrial muscle biopsies primarily to evaluate mitochondria in the past, but there’s more to investigate regarding the way energy is made at a cellular level. In the near future more research is going to be examining the inner mitochondrial membrane to watch how the very basic pieces of electron chemistry are translating to a cell and then translating to the organism as a whole.
Telomeres and Cellular Aging
“Dr. Horvath and a group at Stanford recently wrote a paper focused on decreasing cellular aging using things like growth hormone and DHEA, and metformin (a diabetes drug), to try to decrease the age of cells. There’s also a lot of talk in medical fields about telomeres and their relationship with cellular senescence. The hard part is, how do we translate this when a patient comes into the office and put burgeoning research into actual practice? Much of this is not going to be FDA approved as treatments for perhaps the next 10 or 15 years. So, part of the approach to addressing some of these very complicated patients is working in a partnership with them, because we don’t have the answers. We can work towards the likely answers, but sometimes we have to do it with very short steps, and with a patient who is deeply engaged in the treatment process.
It’s like a dance that the provider helps the patient do with various treatments. You try to tease out the way forward to get on the right path, like finding that yellow brick road.
“This is a very different model than we’re used to. When I grew up, the doctor told you what treatments to take. You took the treatment. Then, you went back and reported your symptoms. This doesn’t seem to work for this very complicated group of patients. These patients also happen to be some of the most savvy, educated, well-researched, intelligent people, mostly because they’ve been through so much and have seen so many doctors. By the time they come to one of us, they may have seen 20 or 30 doctors. So, we have to offer them something fresh and new that also has a high likelihood of actually working.
“On top of the physical issues, we must also consider the psychological burden that chronic illness has had on people. This may seem simple and obvious, but it is such an important piece: We have to address the trauma. And sometimes we can’t address trauma head on. We have to address it in a very circuitous but meaningful way. There are a lot of non-pharmacological, non-ingestible ways to do this: Through the Dynamic Neural Retraining SystemTM (DNRS), through vagus nerve training, through neurofeedback, neuro stimulation, and through various other methods. There is a new device called the PoNS device, which will hopefully become widely available very soon, which is a tongue neurostimulation device. It is FDA approved for head trauma, but it also works for post-traumatic stress disorder. It’s an amazing way to use electricity with neuro signaling to the amygdala and help to retrain the brain to get out of that stress response. A scientist in Wisconsin, Yuri Danilov, developed it and the company that owns it is called Helius Medical technologies. They’re trying to get FDA approval for it, and they are making it available to physical therapists. It’s mentioned in Dr. Norman Doidge’s book The Brain’s Way of Healing. I’ve seen it used with some patients, and it’s phenomenal.
Regenerative Therapies and Exosomes
“In addition to the cell aging and telomere lengthening concept, one area that does seem to be slightly farther ahead is the field of regenerative therapies. Regenerative therapies include exosomes, PRP, and alpha 2-macroglobulin, among others. Some of these chemicals are injected. Oftentimes, we use it mostly for tendon issues and for osteoarthritis and for different orthopedic situations. But exosomes, especially, have other uses. There are many doctors who are using exosomes in parallel to stem cell therapies and there are many types of stem cells from autologous cells that come from your own body—to umbilical, to fetal, all the way to human embryonic. There is a book by Amy Scher titled, This is How I Save My Life. She has become a notable author who wrote about her journey through India, where she received human embryonic stem cells, and went from a very severe neurologic case of Lyme to being quite well now.
When I grew up, the doctor told you what treatments to take. You took the treatment. Then, you went back and reported your symptoms. This doesn’t seem to work for this very complicated group of patients.
“These various therapies can be amazing if used properly, but we need more studies. Much of this is outside of the purview of many mainstream practitioners and health plans and the medical establishment at large. But many of these treatment approaches can be done safely and effectively, and definitely have their place for decreasing that overall illness burden. One of the thoughts about stem cells used to be that ‘Oh, the stem cells can change into whatever cell, and then the cells can regenerate this way or that way.’ But what we now think is that it’s probably more to do with the cell signaling chemicals, and the growth factors, that are really at play here. Exosomes don’t have any nucleic acid in them, it’s just those chemicals themselves. Many people are using those very successfully and it’s still early, obviously, but there are some very neat ways to do it, especially with some of the structural conditions such as CCI.
The Body’s Structure and Craniocervical Instability
“CCI is Craniocervical Instability, which is a fairly new conceptual understanding, but as a condition it’s been with us for a long time. It is where micro shear forces are happening in the neurovascularly structurally dense area where the skull meets the cervical spine, which can lead to lots of inflammatory responses. Mast cells, which are some of the allergy producing cells, are involved, among many other immune cells. A very big inflammatory response occurs when there is a combination of an infection, such as Borrelia, Babesia or Bartonella, mycoplasma, viruses, et cetera, usually plus head trauma, or a hypermobility syndrome such as Ehlers-Danlos; it’s one of the part of a triad for these people who are a setup for CCI. Dr. David Kaufman is an expert in the area who helped popularize the idea of CCI, and it’s been absolutely amazing for some of these patients who have especially severe chronic fatigue. The ME/CFS world are early adopters in considering it, but for many Lyme patients and practitioners, it is not yet on their radar. It should be because fatigue is one of the very significant presentations of chronic Lyme patients. I’ve seen four or five patients who have had this surgery with pretty astounding results. But what we’re trying to do is get away from a fusion surgery if at all possible. That’s where the exosomes can theoretically come in, especially properly placed injections of exosomes and PRP and these other regenerative therapies to stabilize an area in the cervical spine. The inflammation goes down with many of these injections but getting the benefits to continue when people move their heads frequently is another matter.
Much of this is outside of the purview of many mainstream practitioners and health plans and the medical establishment at large. But many of these treatment approaches can be done safely and effectively, and definitely have their place for decreasing that overall illness burden.
“Obviously, this is a complicated and very new field, and the challenge is that the neurosurgery boards in America don’t allow surgery for fatigue. You need something like a chiari malformation or an instance where a vital system is being compromised before the neurosurgeon can actually do surgery for this. So, sometimes by the time they do surgery, the patient can be significantly decompensated. The results aren’t quite as good as they would have been if we could have done it earlier. But in addition to the environment, genomics, and metabolomics, and microbiome, a way to approach some of these pathogens is by looking at a patient’s body structure—CCI being one of those aspects.
Jaw Misalignment, CCI and Spinal Issues
“Another important structural approach is to investigate jaw misalignment. We can see when people have a bite that’s ‘off.’ There’s been quite a bit of work on this, mostly with the craniosacral folks, but there’s some very good science that shows that every time we speak, and every time we bite that we’re moving our cerebral spinal fluid, and if it moves and flows in an aberrant way, then the whole nervous system becomes ‘off’ as it were. Sometimes just by repositioning the jaw we can make an incredible impact on patients. I’ve seen absolute magic. It’s not usually something we do first, but it is something that we now think about, especially with the chronic complex illness. We look at things like root canals, and of course, that’s old news, but it’s still important looking at some areas of surgery and surgical scars and things like titanium rods, etc.
One insult by itself isn’t probably going to do anything. Throw that insult in with the Lyme, with the environment, with the structural issues, and you start seeing how complicated some of these patients are.
“Therefore, jaw misalignment along with CCI and other spinal issues, such as scoliosis and different ways the spine presents in space can have very profound implications for a chronic illness. Let’s not forget, these patients are coming to me, and they typically also have infections. So, the infections are probably one of those rate-limiting steps. There are a lot of people who have scoliosis and who have jaw misalignment and CCI, who aren’t actually sick. But when you throw in what these infections are doing to people, and you combine that with the structural issues, then you start seeing the picture come together about the infections. And it’s not just about Lyme and babesia species and Bartonella and ehrlichia and anaplasma, relapsing fever, borrelia, etc. There are a lot of other organisms that come into play: there are a lot of GI parasites, brain parasites, worms, and amoebas of all kinds that compromise the human system. Not that they’re necessarily making people sick by themselves, but they change the conditions in the body. One insult by itself isn’t probably going to do anything. Throw that insult in with the Lyme, with the environment, with the structural issues, and you start seeing how complicated some of these patients are. And so, then it becomes a question of, ‘Okay, let’s evaluate all these different things that could be happening.’ I look at it as being like an onion. What’s the top layer of the onion? How do you pull that top layer off and then go to the next one and then finally get to the core? It’s a model that often works. It’s just sometimes slow, but it’s better to be slow and complete than trying to race to the finish and then having to do it over again.
Viruses and Body Decompensation
“And then of course viruses are another piece of the puzzle, that are becoming bigger and bigger. We just happen to be right in the midst of a very large viral thing right now. Viruses have their own problems, and they can cause the body to decompensate on its own. But in the case of things like Epstein Barr and human herpesvirus 6, enteroviruses and varicella, they can be very opportunistic. We know about opportunistic viruses through the HIV world. The immune system is typically able to surveil these opportunistic infections really well. However, if the body becomes weakened, whether through the immune system already being weak or there’re being too many stressors on it, those viruses can take on a life of their own. Dr. Jose Montoya earlier and now the current folks at Stanford in the chronic fatigue center are looking closely at human herpesvirus 6. The late, great Paul Cheney, who was so important in putting chronic fatigue on the map, was looking at human herpesvirus 6 primarily, while John Chia has been very involved with enteroviruses. These different viruses definitely can contribute to fatigue and contribute to various related symptoms. But, in my view, they are often purely opportunistic and come up because the body is decompensated. So just treating those, in my experience, hasn’t been fully effective, but it is very important to look at them in the overall scheme of what we’re doing for patients.
mTOR Agents and Autophagy
“At an ILADS conference a few years back, Dr. Steven Phillips did an amazing talk on the use of mTOR agents, (mammalian target of Rapamycin). This process has to do with how our cells can clean the body by degrading older and dead cells. People who can clean their body of debris have a much higher chance to heal and recover. People who have high levels of autophagy can heal, because there’s cellular turnover and new healthy cells taking the place of old or unruly cells. There are many agents that we’re starting to look at for people who have been sluggish, who have been sick for many years, and have been through many different treatments and have been stagnant. Trying to increase one’s autophagy through the use of things like Rapamycin is starting to get attention nationwide. At the 2022 ILADS conference in Orlando, I met with many people who are starting to use this cancer drug in low doses to try to increase the body’s ability to rid itself of debris. Other things include Honokiol, which is a magnolia leaf, and doxycycline, and many other agents increase autophagy including methylene blue. This is one of those areas that we’re exploring as a group, and one of the ways that we approach these complicated patients. Vitamin D is another example of an mTOR agent.
If the body becomes weakened, whether through the immune system already being weak or there’re being too many stressors on it, those viruses can take on a life of their own.
Toxic Load, Nutrient Status and Environmental Stressors
“One way to approach patients is to look at what’s happening with their ability to absorb nutrients and then get rid of waste i.e., absorption and detox. And it always comes back to that for many of us in the day-to-day working with these patients: how do we increase their absorption and nutrients? Their ability to tolerate nutrients? Their ability to get rid of the stuff that they don’t need? One way to do that is through membrane chemistry and using different kinds of fats to flush out some of the debris, on the so-called classic lipid bilayer on the surface of cells. There were common, simple methods used in the past to just detox patients and assist them in draining and elimination that we used to employ, but simple strategies no longer work in the most complex subset of patients. Oftentimes there is too much happening in their metabolism. There’s too much junk that is causing their bodies to react. Sometimes the reactivity is so profound that nothing happens if we can’t fix that reactivity.
Sometimes, this over reactivity is related to infection. Sometimes it’s because there’s too many bad chemicals in the body. With all of these environmental exposures that people have, a way for the body to respond to these stressors is by overreacting. While it could be driven by just the infections, it’s usually a complicated causation as to why people have ‘mast cell activation.’ We learned about it through a tumor of mast cells called mastocytosis. This is a little bit different because people don’t have these tumors, but they elicit an infection-related, allergy-producing response. It’s the body trying to help itself, but it does so ineffectively and in a way that increases a person’s suffering. David Kaufman and some other folks have found a triad of Ehlers-Danlos or hypermobility syndrome with what’s called POTS or orthostatic tachycardia with mast cell activation. We’re finding groups of these people where this hypersensitivity syndrome is actually the first thing that we have to assess. Unless that is successful the rest of the treatment process can’t really ensue. Again, we used to just do some detox, get patients prepared, and then work from the top down, working on the biggest thing like worms, then go to parasites, then go to metals, then go to babesia, then go to Lyme, etc. Now that initial dance to diminish the reactivity can become the bulk of the treatment regime. On the positive side, once we get past that part, the rest of the treatments can often be done faster, with very positive results, where patients develop momentum in approaching wellness.
In conclusion, these are a few different ways to address this most complicated, most difficult group of patients. I truly believe that everybody can get better, and I think that sharing that hope with the patient is a way for them to be able to hold on during what is a marathon for many of them. Not everybody needs to take every step, but the steps are there, and it can be done.
– Dr. Steven Harris
This blog is part of our BAL Happenings series. Bay Area Lyme Foundation provides reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. For more information about Bay Area Lyme, including our research and prevention programs, go to www.bayarealyme.org.
April 2018 I found a tick stuck to the back of my leg, 10 days latter I could not get out of bed one morning due to the pain. After much head scratching, the doctors agreed on rheumatoid arthritis. Today after 2 negative tests, 4 different immunologists (a 5th one I could not afford $800.00 per visit), I have insomnia, memory loss, hip pain, floating joint pain and being treated with Methotrexate. Can not find a logical doctor that sees a connection with tick bite and all these problems. Remember me, I am the one who told you doctors my story, – went to engineering school 10 years at night, all my colleagues who could not hack the math or the physics went on to study medicine, True story.
Jose, I’m sorry you are experiencing this & I, too can unfortunately relate. Please go to;https://www.ilads.org/patient-care/provider-search/ You will need to register but this is a well known, highly respected organization. There are doctors who do understand how to evaluate your symptoms. This certainly does appear to be a tick related situation now complicated by delayed treatment.
That’s right the majority of them are close minded idiots. I’ve seen plenty. 10 yrs of struggling. Even the very top lyme docs seem out for the money not the cure. Here’s a tip. Most of us are very infested with parasites. Get on the parasite protocol. Do that for month and follow up with some colon washing. Look up FIRM protocol. Fenben, iodine, magnesium, reishi.
Stay on it, for life. Also sulfazine very essential. Breaks down fungal walls.
Thank you Stephanie.
Seek out a reputable LLMD (Lyme Literate MD)
I’ve been dealing with autoimmune diseases since I was 16, probably earlier. Throughout childhood I just thought all the pain, confusion, … was a normal way everyone felt. I didn’t know how to identify what I was even experiencing. I’m going to be 60 this year. More and more diseases added to my vitae over the years, being older makes it easy for doctors to say it’s just a part of aging, it’s in your head, your a hypochondriac, blah, blah, blah. I can relate to just about everyone’s stories here because I’ve lived it. It’s scary, lonely, sad. But I try to be hopeful for the future for others as things are getting better for these diseases, thanks to so many brave, intelligent, compassionate people fighting for answers and change. My heart breaks for everyone who suffers, including those who have to watch their loved ones suffer. I believe that all our suffering and those working to alleviate suffering will bring about relief for future patients. It’s helps me to focus in the fact that progress is happening, that today is better than 20 years ago, 10 years ago, last year, and in small ways – even better than yesterday. As time passes, progress will come faster and faster. Every day, someone, somewhere is getting closer to healing and being able to be healed. Today I’m feeling hopeful, tomorrow may be a downer day for me. I’ll take today to feel some joy and pray we can all remember those days do happen and learn how to dwell on that more than the sad.
Grateful Today,
Jan
we would love to find a competent Lyme Literate dr. There are none where I live. My son has Lyme and mold. He has been ill for 8 years-been to every regular dr. and the last one told him he was nuts. Oh, of course. If they don’t know why you’re sick they say you’re crazy. How about just “I know you’re sick, but I don’t know how to help you.”
My husband and I have shelled out thousands for doctors, hyperbaric treatment, supplements, and none have helped him at all. We are at our wit’s end. He’s 24 and just wants a life. We don’t know what to do anymore.
I see a doc in western PA who treats with Low dose Immunotherapy. It’s also been called low dose allergen/antigen therapy. It’s treats the bodies sensitivity the the bacteria by using antigens and resetting the immune systems tolerance. It has me in remission.
Dr Ross has a great book he also does live webnars..i learned a lot from him in my Lyme journey and coinfections .hes located in Seattle Washington. He also sells alot of quality products
A lot of good information on he’s w ebnars you can look him up online Dr marry ross
I’m not sure where you live but I am in Ct and have been diagnosed with Lyme 3 times now. I have seen several drs also including Naturopathic docs.
I was finally referred to an Infectious Disease Doc in Manchester Ct; Dr. Kenneth Abriola. I think Eastern US medicine is at the forefront of Lyme as it originated here.
I was treated with two 4 week rounds of doxycycline and am finally feeling better. But if I did not see improvement then the next step was to be a 4 week round of an IV drug. I am good for now but the disease was recognized, and treated with a kind and compassionate approach. I’ve had my share of Docs tell me I was crazy and that I didn’t have Lyme too.
Hope this helps!
Theresa if he has tried antibiotics already and gotten owhere, I urge you too look on youtube for Dr. Ty Vincent who does LDI, low dose immunotherapy.. It can be all done online and he ships the treatments to you. He has many videos online and you should start with video 1. He will say Mycotoxins need addressed with binders, there is no LDI for that. I am heading down this road myself. Wasted years on abx and herbals, homeopathic. Bestof luck!
Sorry for your son health issues and like him I went to so many Doctors. Finally read all I could find on Herbal Medicines and now take them. I added a peptide suggested by Dr. marty Ross, called BPC-157, and also take Low Dose Naltrexone, 4.5mg. This has to be compounded by a compounding pharmace because it only comes in a 50 mg tablet. It really helps with the pain. I am not perfect, but I am better than when I went to quack doctors.
Call the Zhang Clinic. Their Chinese herbs seem to be really helping my daughter. She’s 21 & been sick a couple of years
Lyme literate doctors are usually caring but still
Stuck on antibiotic therapy
I was left undiagnosed for over a decade and passed it to my children whom I’ve spent the last 15 years treating. It is imperative that your son live in a home that is mold free to heal. Mycometrics.com is the laboratory you would want to work with to find out what mold is in your house. Tick borne patients do not heal until they have been treated for mold as well. See survivingmold.com for only effective chronic inflammatory response syndrome meaning mold treatment.
Visit truerife.com. For tick borne infections ( research rife treatment ). Healed children after 6 years of treating with top pediatric Lyme specialist who helped but children would always relapse until rife treatment.
Was instituted . The combination of a clean mold free environment , seeing a CIRS specialist through surviving mold.com( only scientificly backed treatments), and using rife treatments to completely kill all hidden pathogens that can hide from antibiotics will help your son. And none of these resources will tell you you’re crazy ( yes we know what that feels like) God Bless
Seek out a reputable LLMD (Lyme Literate MD) One option is Dr. Rawl’s book, “Cellular Wellness”. There are many tinctures, mushrooms (Cordyceps Extract), Cat’s Claw, Neem, etc. Exosomes and H2O2 and ozone therapy. Antibiotics don’t work unless the bacteria is in the blood. They hide in the nervous system, form biofilms, etc. There are 12 different Lyme bacteria. Have your doctor order labs from a specialty lab like Fry Labs, MD Labs in NJ to find out which lyme bacteria you have. Also, check for co-infections.
Go here
https://www.ilads.org/patient-care/provider-search/
Yo mejore tomando Cápsulas de Uña de gato,cúrcuma o turmeric,magnesio,vitD3,vitaminas y otros minerales,coQ10,aceite de krill y más plantas medicinales. Un abrazo.
Translation:
I improved by taking Cat’s Claw Capsules, turmeric, magnesium, vitD3, vitamins and other minerals, coQ10, krill oil and more medicinal plants. A hug.
boy is this depressing…..
יוי
Yeah, it sure is depressing. I wonder if lyme really was a created illness? If it was, whoever did this should rot in hell.
Right??? That’s the problem I have with coming on places trying to get help. There are so many different things being told to do but everyone’s body is different. You very rarely hear positive stories. It’s very depressing!!
It’s hard having complex issues. It’s hard to be dealing with it for so long. It’s hard to be accused of being crazy or hypochondriac. I can’t afford treatment any longer. Getting older with this disease and it’s co-infections and add on top of those diagnoses: fibromyalgia, chronic fatigue, M.S. lupus, TBI, severe osteoarthritis, early onset dementia, (I could go on and on, you all know the gig). Now that I’m older, doctors tell me I’m getting older and things just start hurt more, things are more easy to forget, blah, blah, blah. I’ve lost everything I love. I keep my health issues minimized so I don’t alienate family and friends more than I have. However, I’m happy so many good people are working to get these issues on the forefront of medicine. I pray the future for those who have these types of unfortunate health crises will benefit from the changes and new discoveries so many are working to bring about in medicine all over the world.
I’m right there with you. I / we can’t afford many of these we are trying to help our once high functioning autistic daughter who got bit her senior year in Central Texas. Try finding a research hospital to help in Texas. She has Lyme bart anaplasma
Your words really resonate with me as it’s a shared experience. It’s the most difficult thing I’ve ever gone through. The only other people I know who have the same issues as me are Lyme people. My doctor doesn’t get it and at times I feel I’ve kicked a hornets nest to treat symptoms. ❤️
I mimic everything you said. I’m only 51 and have had 10 joint surgeries and need more. None of my doctors know why I’m not healing and they won’t acknowledge my Lyme and co- infections. I’m a long hauler and am running out of time before I’m in a wheelchair. I was an athlete my whole life and Lyme has destroyed me. Still searching for anything that can help me.
Me too!!
You sum up the situation so well . I am a recent victim of Lyme and now face a medical system here in Canada that is hostile to anything that is not mandated by the government. I think I will have to go South as there are no LLMDs here in Nova Scotia. I wish you more than good luck. Thaanks for your inspiration.
Pieter
I have found the medical community useless. LLMD’s are out for the money in most cases. Exosomes cost $750/cc wholesale and they charge $5,0000 per cc. I have had to do my own research, learn how to make my own tinctures, and tell the doctors what tests I want, even though I have to pay for it. People have paid $50k plus and still have issues. Look at Dr. Rawls’s book Cellular Wellness and read it. I take about 30 pills a day and 10 tinctures. it seems to be working but is a long-term issue. It boils down to the internet and blogs and reading and research.
I was diagnosed by Dr. Harris more than a decade ago. After reaching a plateau of responding to any modalities of treatment, and tens of thousands of dollars, Dr. Harris ordered a simple blood test of my immune system. It showed my immune system was practically non-existent. Although probably challenged prior to Lyme, my system was completely trashed, I believe, by Lyme. After six years of weekly immunoglobulin infusions, I still have significant Lyme symptoms. Not as life-altering, but still greatly affecting my brain, gut, energy and arthritis. Medicare requires a signed declaration that no claims relating to Lyme will ever be submitted to them. I am retired, and will never again have the funds required for treatment. Hopefully my kids or grandkids will benefit from all of the amazing research being done. Hopefully the insurance industry will be forced into coverage. Hopefully brilliant doctors and researchers will continue to search for effective treatments. Thank you, Dr Harris and all of the other practitioners, for taking on patients with complex, chronic diseases. Researchers–thank you for being a beacon of hope.
Through all of these articles I see nothing mentioned about who started this Lyme Terrorizing! Incredible as it seems, this country has been allowed to “shut people up” over the fact that the military gave ticks an illness that has wiped out many lives. Remember agent orange.? Remember the very well researched book “Bitten”, Kris Newby.
I was raised in the woods in Idaho until I was of school age. Living on State Fish and Game properties while my Father ran fish hatcheries. Ticks were common and not dangerous except to scare one because “it stuck”!
After being bitten in Prince William Forest in 1985 my health went down the drain in the next six months. Even tho’ I was trying to work full time for an international carrier. About ten months after having discovered the tiny tick and not being able to lift myself from my bed I found an amazing doctor in California.
He was and is the only doctor who understood how to make the immune system get well enough to fight.
For the next almost 40 years the treatment for a Lyme had gone downhill. Shhhhhh, don’t talk, don’t tell. Don’t cover it Insurance companies, don’t admit the secret of doctors disrespect of the “made up illness”.
And mostly, act like ticks just decided to become toxic overnight , suddenly for no reason.
I am not the only person to be full of rage at being eliminated from the “caring Medical establishment”!
We are in a rage.
I believe that a disease descriptor may include physiology. Chronic Lyme has additional physiology that is not considered in its definition. That physiology is created in the patient by the bacteria in the form of protective biological films. As such Chronic Lyme is then physically different from acute Lyme disease. Logically, it seems, then the IDSA guidelines no longer apply and medical professional insurance based on IDSA guidelines then also do not apply.
Well said!!! Because there are variants of the Borrelia bacteria, it may not be picked up by tests offered by Quest and Labcorp. I have spoken to the CDC about this and last time I looked they did make note of this.
I discovered that one of my co-infections was actually a parasite so the antibiotics that I took for months may not have knocked out this parasite, which then weakened my immune system, and allowed the Lyme bacteria to return even smarter than they were before.
You need to research biofilm disrupters. There are several herbs that will handle biofilm. Try SAMSARA, “Tic Immune Suport”. It contains Japanese Knotweed, Dokudami, Houttuynia, Cats Claw, Andrographis, Sida Acuta, Cryptolepis, Stevia, Sarsaparilla, and Bpalck peery. I take 4 a day. I also take these as tinctures or capsules The above have been proven to work against Lyme and several co-infections and breaking down bio film.
All great news but for a lot of us, that are broke due to the illness, we can’t afford those studies or those doctors, our insurances( many of us on medical) will decline such treatments and tests.
Lyme treatments are for the rich ! Until the federal Gov. FDA. CDC. Etc. Don’t accept Lyme as a chronic illness, we the poor are in the dark with Lyme killing us slowly.
amen to that
Amen to that, too!
Thank you for offering a look to the lyme community at treatments that seem more near to the root of addressing this complicated disease in chronic form. I agree with most of the comments here that although it is nice to read about, it is a far fetched reality for those of us with the very disease you are addressing (to be able to afford these treatments). I heard someone says once that only the rich can afford to be sick, and unfortunately I think this is true. I have a Doctor that calls my lyme “fibromalgia”, even though she agrees that my test results show I have lyme. She says to me, “the FDA does not recommend treatment for cases like yours (positive lyme results 40 years after initial contraction).” So, we pretend together that it is “just fibro”, even though I am disabled from a TBI AND have positive lyme tests! She sends me to physical therapy for chronic pain and gives me medication as needed for symptoms, but come to find out the $30 per visit three times a week is not even affordable; so how would I EVER hope to be able to do any of these therapies? No, it would be just like before when I spent all of my money (and got into debt) on Doctors. Those days are over. I am in the new creation by God through the gospel that reached beyond this world. The Lord has healed me spiritually because I have believed in HIM. He has taken away what has caused this illness and that is death for sin! HE HAS paid the wages for me on the cross (death for sin) and HE will appear soon to grant salvation to those that wait on His return (making NEW the NEW, and bringing a new heaven and earth, and giving us NEW bodies). Today I wait in great HOPE in Christ because GOD DOES NOT LIE (like men do)! I thank God for providing for me and my family and we can afford to eat and have a roof over our head as so many do not even have this! I live in peace with God in this very lot I am in. My spirit has been restored to (eternal) life in Christ, and I await a day when God will make ALL things new for those who have believed HIM and put their faith in HIM through His Son. GOD LOVES US ALL and does not want anybody to perish in lack of knowledge of the His grace of His salvation. Because I have been saved by the Lord, this body, that is subject to death because of sin (not lyme), will very soon be done away with when mortality puts on immortality. I pray the Lord shine HIS LIGHT into the hearts of all lyme sufferers and those who try so diligently to help them, and by the God’s grace many more find true healing. If God has granted a way for many to find physical relief through these and other modalities then PRAISE HIM! I think that is wonderful! God bless you. John 3:16-17, Romans 10:8-10. Be restored forever not just temporarily!
It will be great to meet you in our fathers kingdom. Your story sounds if I had written it myself. The LORD is our salvation. I’ve been fighting the lies with Lyme for about 25 years.
Amen, the Lord God is our strength!
Thank you for sharing the Word of God. I am a 20 year Lyme Warrior and international Pastor. This disease is totally demonic which many of you know the origin of it. I have battled this a very long time it stopped our ministry for many many years where I could no longer travel. Probably have seen close to 50 doctors and different practitioners and tried all kinds of things. Spent all of our first savings. I also have serious injuries because I was a former professional dancer in New York so this adds to it. Currently have gotten worse and have no doctor. I am so gut sensitive I cannot handle antibiotics and many other meds, tried herbal treatments for a long time also. I hear all of you and my heart goes out to you. I pray that Your faith will see you through. It is a daily battle I thank God that I still have my husband and my daughter. 🙏
Loved this article. I have persistent lymes…neurological…fatigue. etc. Looking at the “big picture” is what is needed in the medical field…down to the core of molecular structure. I also feel the mind is at the top on the pyramid. What we think…creates emotions…creates manifestation. Dissecting this..individually…is the challenge. Your on your way !
Interesting series of articles on detoxification which I have been doing for years thru eating organically, drinking lots of water, but same AMA info of treating symptoms but NO actual cure to Kill bacterium or virus. I am thriving on Chinese medicine and accupuncture to stimulate blood flow from stagnated flow in feet, (originally blue/ purple). Still have not regained weight loss of 160# down to 125# in 30-day loss period-average weight now at 130# from 2-years ago.
Hi
I am so thankful to you all for working to find solutions!
But as a chronic/ptsd (or whatever they’re calling it these days) Lyme Disease diagnosed Mom that is losing hope for my family. I read these articles and see so many similarities in our symptoms…fatigue, brain fog, tremors, depression, shortness of breath, joint pain, scoliosis, jaw alignment issues, anxiety, ADD, low spectrum autism. I keep getting cysts that cause issues (I’ve had 5 surgeries) with no hope of ever seeing or affording a doctor that can really help us. I have read a lot over the last 5 years and believe that I may have additional issues that are the root cause for not getting well. We live in an area that does not recognize Chronic Lyme as a possible issue, I was misdiagnosed for 2 years. I’ve seen multiple doctors and even after a two tiered positive test result, have been told “it’s all in my head” or “it’s just old age. I was 49, had always been healthy with diet exercise and yoga. I’m looking for ‘solution finders’ that care, that can look at the whole body for answers. Our family would greatly appreciate any help you can provide.
Sincerely
Emily Shafer
It’s all very interesting and I am very happy that there’s doctors working day in and day out for us. I am very thankful for my personal doctor that thinks outside the box and tries to make life as comfortable as possible.
However, I can’t help but feel that it’s still the wild wild west for the patients, trying out all kinds of expensive treatments for years on end, using results of studies that are much too small. How to pick any treatment that is strictly spoken still experimental after battling this for 15 years and having lost my entire savings and youth? I don’t know if I should pick one of these suggestions and give it another try with funding of my family or to wait a lifetime for the silver bullet(s)…
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6963529/
I am working with:
Lyme Dr. Catherine Harbor – Lexington, VA
Working with Essential Oils for my Chronic Lyme Disease.. Using Thieves or blend that is recommended.. Hard read but very interesting results.. Seeing improved neuropathy and aches/tightness in muscles… A good approach, holistic and inexpensive..
Let me know if you can’t open file..
Best….. Jeff Rinker
Coorsx30@gmail
Virginia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6963529/
I am working with:
Lyme Dr. Catherine Harbor – Lexington, VA
Working with Essential Oils for my Chronic Lyme Disease.. Using Thieves or blend that is recommended.. Hard read but very interesting results.. Seeing improved neuropathy and aches/tightness in muscles… A good approach, holistic and inexpensive..
Let me know if you can’t open file..
Best….. In Virginia
Dear the author,
I contracted Lyme disease April, 2022, after treatment with antibiotic twice, once twice daily for 10 days and then twice a day for 21 days, in July 2022. Until now, almost 8 months later, I still feel extremely fatigue, which usually last for 15 days then come back repeatedly again and again the past 8 months. I have a feeling the bacteria has compromised my immune system, which is sensitive to a little exertion, like normal walking or moving hands a little fast. I have seen four doctors including an infectious diseases specialist and a cardiologist. So far none of them has suggested a method to treat my extreme fatigue/tiredness/very low energy. I was very energetic before contracting the Lyme disease. Now I cannot do anything including just walking a few hundred yards. My quality of life is substantially decreased. I continue to work with my doctor. Please give me your advice of treatment or course of treatment. I am 74 years old. Your response is greatly appreciated.
Tinh Nguyen.
Better find a Lyme literate MD (LLMD) near you, they treat in a holistic way- as described in the article, maybe you need a better detox in combination to dealing with deficiencies and addressing the infections in a proper way.
My husband has been under treatment for seven years. He got treated by Envita in AZ , got well got stem cells from dr Riordan in Panama, had 2 good years, then 3 years by dr Sponaugle in Florida for 6.5 months got better, now in status quo, .. we have a rife machine from Canada, infrared sauna for 6 years, foot detox, coffee enema etc,, for detox. Now we have red light therapy , mitoredlight.com which is great for energy, healing etc…
He is now starting treatment with dr Ken Mitchell in Scottsdale AZ, I
Ike his protocol, the least expensive a brilliant naturopath who is passionate about his work. I personally would like him to get another treatment of stem cells from dr riordan. Good luck. My husband is about your age.
This article is very good but does little to help a person like me 86 with chronic Lyme and cannot find a physician in my area to treat it that will be covered with my health insurance. So, the outlook of my limited years is not good. Plus, my primary care physician does not believe in chronic Lyme and has no recommendation for anyone in my area of Connecticut. Very sad to live in the state with probably the most ticks…
I am italian and have severe late stage MICDS,with a very big problem of CCI.I know Dana Parish and I have no doc that wants to treat me here.I referred to a german one and a German clinic,but I need more infos about stems and prp.
This is a great aricle , because I have also developed a severe connective tissue disorder similar to EDS.I wish to understand if it is which pathogen doing so,before undergoing surgery.Need a contact and help.I am in pain and frivhtened a lot.
Cranial Cervical Instability • The Brain To Spine Telephone Line • its a FB private group for cci-aai related injuries.I had lyme ,severe neuro with brain lesion and eventually got alot better.I was on 3 antibiotics-one was IV rocephin and get this-about a littre a day of raw fresh MMJ leaves (does) not get you high-got better in 3 weeks, after 7 years.Then got in a terrible car accident after returning to teachers college-The ligaments were loose at c1-c2.I will never know if having had chronic lyme contributed to tissue damage before the accident but it saved my life.Had to pay out of pocket and travel from Canada to see Dr Henderson in USA.I still got a spinal cord injury from the delay in getting the cervical surgery but I am alive.I am a moderator on the above group-please get in contact with me or the group for some help. cheers,Kimberley xxxooo
Saludos Dominique Pinto, su patología es normal en casos de Lyme, debe tratar de hacer limpieza hepática, desintoxicación con sueros de quelación, recibir el sol mañana y tarde, aterramiento, desconexión de la contaminación electromagnética, cambio de alimentación, leer la pagina web del Dr. Marty Ross MD, leer los libros: Hacking Lyme Disease: An Action Guide to Wellness de Marty Ross y Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma de Stephen Harrod Buhner, hacer cambio internos, leer los libros de Joe Dispenza. Algo muy importante es la odontología biológica, revise su boca con un odontólogo biológico. Saludos y mucha suerte.
Translation:
Dominique Pinto, his pathology is normal in cases of Lyme, he should try to do liver cleansing, detoxification with chelation serums, get the sun morning and afternoon, intimidation, disconnection from electromagnetic pollution, change of diet, read Dr’s website Marty Ross MD, read the books: Hacking Lyme Disease: An Action Guide to Wellness by Marty Ross and Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma by Stephen Harrod Buhner, make internal changes, read the books by Joe Dispenza . Something very important is biological dentistry, check your mouth with a biological dentist. Greetings and good luck.
Hi my name is Whitney Tilley and I have lived most of my life being ignored or told I was crazy due to having Lyme and no one believing me. In 2022 I was rushed to the hospital where my family was told I wasn’t going to make it. I was Septic and had Lyme meningitis. This happened again in March then again in July. I’m
Now in stage 4 renal failure and suffer daily. I have begged cried and pleaded for financial help to get treatments and most programs only help children. Well I was that sick child who was abused and told she was crazy. Now I’m an adult who was just told there’s nothing that can be done get your affairs in order. I’ve applied for every type of assistance out there and never get approved. Right now this is a fight for my life. I don’t know where to turn.
https://www.columbia-lyme.org/cohen-center-health-and-recovery-lyme-and-tick-borne-diseases
you could try calling this. they have a waiting list
Better find a Lyme literate MD (LLMD) or LLND near you, they treat in a holistic way- as described in the article, maybe you need a better detox in combination to dealing with deficiencies and addressing the infections in a proper way.
please read my comment -Kimberley -xxoo
Saludos Whitney Tilley, su patología es normal en casos de Lyme, debe tratar de hacer limpieza hepática, desintoxicación con sueros de quelación, recibir el sol mañana y tarde, aterramiento, desconexión de la contaminación electromagnética, cambio de alimentación, leer la pagina web del Dr. Marty Ross MD, leer los libros: Hacking Lyme Disease: An Action Guide to Wellness de Marty Ross y Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma de Stephen Harrod Buhner, hacer cambio internos, leer los libros de Joe Dispensa. Algo muy importante es la odontología biológica, revise su boca con un odontólogo. Saludos y mucha suerte.
The single best treatment is Low Dose Infection (LDI) therapy. I’ve had a 100% response rate so far. The best treatment to add to this is Hyperbaric Oxygen Therapy (HBOT), as it can repair damage.
My drs have suggestwd HBOT but too expensive and insurance wont pay, like most of my lymes treatments,Im 65 and have been dealing with now chronic lymes due to drs not believing in lymes. actively being treated since 2012 when my seizures started. its a tough gig.
Dr. Cole: My 20yr old son has been fighting Lyme along with Autoimmune Encephalitis for 3+ years. Is there a timeframe of when LDI is effective? We are actively treating Lyme at the moment and hope to have infections minimized within 6months. Curious about LDI and if it would be beneficial in desensitizing the immune system to the autoimmune encephalitis.
Remarkable! Some of us long hauler Lymies figured this out decades ago but could t receive the help that was needed. Too many specialists and too much $$. Thanks for putting this article out there, those after me may get the benefit.
The medical system has to change.
My 39yo son has been suffering from neuro Lyme (and mold, PTSD, residual concussion of 20yrs ago, depression) severely the past 9yrs, and has been since he was about 12 when began showing mysterious health issues. He lives alone…It is so encouraging to read this excellent article, thank you!! Very hopeful. Although such a costly disease journey, and my son is unable to work due to feeling so sick.
I really appreciate all the effort by various doctors and scientists to find ways to help such complicated, chronic cases like myself.
However mainstream medicine will never embrace such multi faceted treatments, neither will Medicare and insurance companies.
Many of us are too sick to work (and have already spent every penny they owned to get better). For most such comprehensive treatments are and will be out of reach.
I apologise for the pessimism. Lyme & co has sent me broke and a disability pension doesn’t pay for treatment.
I also live in a country where Borreliosis, Bartonellosis etc is not even recognised at all and the few doctors who treat are called quacks and charlatans. Quite a few lost their licence to practice over the years or are now forbidden to see “Lyme” patients.
It is nice to know though that there are people out there who really care. So thank you again!
Kind regards
Monika from Australia