Do you feel like you’re doing everything right and still not getting better? It’s possible something hidden in your daily routine may be sabotaging your healing.
One potential culprit is manufactured citric acid (MCA), often added to food as a preservative and flavor enhancer.
It’s used in processed foods, carbonated beverages, energy drinks, fruit drinks, nutritional supplements, vitamins, pharmaceuticals, cosmetics and more.
And here’s the potential problem: this ingredient is mass produced using Aspergillus niger—a type of mold. People with chronic illness and weakened immune systems may react badly to it. In fact, many patients with persistent symptoms of Lyme disease experience more severe symptoms when exposed to mold.
To date, there have been no human trials investigating the safety of MCA. However, in 2018, two medical doctors at the University of Chicago did a deep literature review and found cause for concern.
In their published paper, they present a series of four case reports of patients who had significant worsening of symptoms after ingesting MCA. By eliminating MCA, each of the patients had a resolution of symptoms.
What exactly is this substance?
Citric acid is naturally derived from lemons, limes and other fruits and vegetables and was widely used in foods and beverages until the early 1900s. In 1917, James Currie, an American chemist, discovered he could mass produce citric acid from mold.
Today, 99% of citric acid in commercial use is manufactured from fermented corn syrup and Aspergillus niger.
In 2016 there were 2.3 million tons of MCA produced, predominantly in China. Approximately 70% of that MCA is used in foods and beverages, 20% in pharmaceutical ingredients and cosmetics, and 10% in cleaning and softening agents.
While the basic molecular formula for natural citric acid and MCA is the same (C-6,H-8,O-7), MCA contains the potential of contamination by impurities and fragments of Aspergillus niger.
When mold enters the body, the immune system recognizes it as a foreign invader and mounts a response to remove it. The specific immune response to mold depends on the type of mold, the individual’s immune system, and the duration and extent of exposure.
Aspergillus niger is commonly found in soil and decaying vegetation. It is extremely resilient, flourishing in both hot and cold climates.
While the FDA currently lists MCA as a safe ingredient, it was developed at a time before the agency monitored food additives. In 1958, the US adopted the Food Additives Amendment, making any ingredients added to food subject to FDA approval. However, Congress excluded from this requirement all food ingredients in use before 1958.
In rare cases, exposure to Aspergillus niger can lead to a life-threatening allergic reaction called anaphylaxis, which requires immediate medical attention.
If you suspect that you may have an allergy to Aspergillus niger or other molds, it’s important to speak with your healthcare provider. They may recommend allergy and mold testing to confirm the diagnosis.
It’s important for people with weakened immune symptoms to minimize their exposure to mold. If you live or work in an environment where you are likely to be exposed to mold, you may need to take steps to reduce your exposure and minimize your risk of developing an allergy.
Ways to minimize mold exposure include keeping your living spaces clean and dry, using air filters or dehumidifiers, and consuming clean food and beverages. In severe cases, more drastic remediation efforts must be taken.
If you have a known mold sensitivity, I recommend that you read the ingredient of your most frequently consumed foods, beverages, and supplements. Ingredients are listed from highest to lowest content. If you see citric acid high on the list and you notice an increase in symptoms shortly after consuming that product, you might try eliminating the item from your diet.
LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. She served two terms on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea Email her at: email@example.com.
Sweis IE, Cressey BC. Potential role of the common food additive manufactured citric acid in eliciting significant inflammatory reactions contributing to serious disease states: A series of four case reports. Toxicol Rep. 2018 Aug 9;5:808-812. doi: 10.1016/j.toxrep.2018.08.002. PMID: 30128297; PMCID: PMC6097542.
This potentially means: LYME/PATIENTS ARE RECEIVING A FUNGAL ENDOTOXIN THROUGH A TICK BITE. EVIDENTLY, THOSE WHO GET THE LYME VACCINE ALSO RECEIVE THE FUNGAL TOXIN. THIS IS A FRIGHTENING PROSPECT AND NEEDS TO BE THOROUGHLY AND UNBIASEDLY INVESTIGATED.
There is no one treatment that will address all the complex factors that affect the onset and progression of osteoarthritis (OA) and rheumatoid arthritis (RA). Certain supplements can be very helpful for reducing arthritis pain and improving function . Some of the most powerful are turmeric, fish oil, ginger, SAM-e, chondroitin sulfate, glucosamine and CBD.These supplements have anti-inflammatory and/or joint rebuilding effects.
Although OA was once considered primarily a degenerative and non-inﬂammatory condition, it is now recognized as having inﬂammatory aspects, including elevated cytokine levels, as well as potentially being connected with systemic inﬂammation.
Turmeric (active ingredient curcumin) reduces pain, inflammation and stiffness related to rheumatoid arthritis and osteoarthritis (OA). This herb is traditionally used in Chinese and Indian Ayurvedic medicine to treat arthritis. It also blocks inflammatory cytokines and enzymes, including cyclooxygenase-2 (COX-2), the target of the anti-inflammatory prescription drug celecoxib (Celebrex).
In a small 2012 pilot study, curcumin reduced joint pain and swelling in patients with active RA better than diclofenac (Voltaren), a nonsteroidal anti-inflammatory drug (NSAID). Unlike NSAIDs, curcumin was not found to be associated with any adverse events.
A 2016 systematic review and meta-analysis provided scientific evidence that 8–12 weeks of standardized turmeric extracts (typically 1000 mg/day of curcumin) treatment can reduce arthritis symptoms (mainly pain and inflammation-related symptoms) and result in similar improvements of the symptoms as ibuprofen and diclofenac sodium without the gastrointestinal and cardiac risks of NSAIDs
A 2018 study lasting 12 weeks found that both turmeric and turmeric combined with boswellic acid improved function and reduced joint pain, though the combination worked better to improve performance than curcumin alone.
So turmeric could be part of the answer to the question, “What is the best supplement for arthritis?”
Arthritis Foundation recommended dosage: Capsules, extract (more likely to be free of contaminants) or spice. For OA: Capsule, typically 400 mg to 600 mg, three times per day; or 0.5 g to 1 g of powdered root up to 3 g per day. For RA: 500 mg twice daily. Curcumin is a key chemical in turmeric
Fish oil reduces inflammation and morning stiffness in rheumatoid arthritis and preliminary studies indicate it may have a similar effect on osteoarthritis. Fish oil is an excellent source of omega-3 fatty acids (including EPA and DHA), which block inflammatory cytokines and prostaglandins. The body converts them into powerful anti-inflammatory chemicals called resolvins. Resolvins are molecules that promote resolution of cellular inflammation, allowing inflamed tissues to return to a healthier state.EPA and DHA have been extensively studied for RA as well as many other inflammatory conditions.
A 2010 meta-analysis found that fish oil significantly decreased joint tenderness and stiffness in RA patients and reduced or eliminated NSAID use.
A 2005 study of people with RA showed enhanced positive effects when fish oil supplements were used in combination with olive oil.
A 2018 review of the evidence of the benefits of fish oil for RA found that consumption of Omega 3 fatty acids significantly improved eight disease-activity-related markers.
Fish oil is also important for brain, eye and heart health. It also helps with anxiety and depression. It is safe, with no significant adverse effects. So it just may be another answer to “What is the best supplement for arthritis?”
Arthritis Foundation recommended dosage: Fish, capsules, softgels, chewable tablets or liquid. For general health, two 3-ounce servings of fish a week are recommended. However, it’s difficult to get a therapeutic dose of fish oil from food alone. To treat arthritis-related conditions, use fish oil capsules with at least 30 percent EPA/ DHA, the active ingredients. For RA and OA, up to 2.6 g, twice a day
Ginger decreases joint pain and reduces inflammation both in people with osteoarthritis (OA) and rheumatoid arthritis (RA) Ginger has been shown to have anti-inflammatory properties similar to ibuprofen and COX-2 inhibitors such as celecoxib (Celebrex). Ginger also suppresses inflammatory molecule called leukotrienes and switches off certain inflammatory genes, potentially making it more effective than conventional pain relievers. Side effects are limited to mild gastrointestinal upset in some patients.
A 2010 study of 247 patients with knee OA found that ginger reduced knee pain when standing and walking and improved quality of life.
In a 2012 in vitro study, a ginger extract called Eurovita Extract 77 reduced inflammatory reactions in RA synovial cells as effectively as steroids.
For OA, In one trial of more than 200 patients, Eurovita Extract 77 improved OA pain after standing and walking.
A 2015 study found that using ginger extract nanoparticals in a cream 3x a day for 12 weeks improved knee joint pain, daily activities, sports activities and quality of life. There were no adverse effects.
A 2017 study of twice a week self-knee massage with ginger oil in patients with OA found patients had reduced pain and improved function after one and five weeks.
A 2019 study found that ginger can alter gene expression in people with RA to improve disease manifestation.
Arthritis Foundation recommendeddosage: Powder, extract, tincture, capsules and oils, up to 2 g in three divided doses per day or up to 4 cups of tea daily. In studies, 255 mg of Eurovita Extract 77 (equivalent to 3,000 mg dried ginger) twice daily.
S-adenosyl-methionine (SAM-e) is a compound found naturally in the body that has anti-inflammatory, cartilage-protecting and pain-relieving effects. In studies, supplementing with SAM-e was as effective at relieving OA pain as NSAIDs like ibuprofen and celecoxib, without their side effects. A systematic review published in 2011 of complementary and alternative medicines in the management of osteoarthritis found consistent evidence that SAM-e was effective in the management of osteoarthritis. No adverse effects were found in any of the studies.
SAM-e also has a mild to moderate antidepressant effect, and is frequently used as a natural alternative to anti-depressant medication..
The typical SAM-e dose is 1,200 mg daily. It will take a few weeks to see the effects..
Glucosamine is a major component of joint cartilage and levels drop as people age. It also helps keep the cartilage in joints healthy and may have an anti-inflammatory effect. Glucosamine produced in the body provides natural building blocks for growth, repair and maintenance of cartilage and may lubricate joints, helping cartilage retain water and prevent its breakdown. It is often combined with chondroitin (see below).
Supplements are derived from the shells of shellfish (such as shrimp, lobster and crab) or from animal bones or fungi.
The largest study to date, the 2006 Glucosamine/chondroitin Arthritis Intervention Trial (GAIT) looked at 1,600 people with knee OA. The first phase found that patients with moderate-to-severe arthritis experienced significant pain relief from combined glucosamine and chondroitin. The 2008 phase found that glucosamine and chondroitin, together or alone, did not slow joint damage. In the two-year-long 2010 phase, glucosamine and chondroitin were found as effective for knee OA as celecoxib (Celebrex).
Other research has suggested that glucosamine does slow joint damage. A 2008 retrospective study of nearly 275 patients found those using glucosamine for at least 12 months underwent half as many joint replacement surgeries as those on placebo.
In a small 2012 study, an improvement in symptoms after 12 weeks was seen with combined glucosamine and NSAIDs, and a smaller but still significant improvement with glucosamine alone. Study authors speculate that long-term treatment with glucosamine may reduce dependence on NSAIDs and delay disease progression.
Glucosamine may cause mild gastrointestinal symptoms, as well as increased blood glucose, cholesterol, triglyceride and blood pressure. This supplement can increase eye pressure in people with glaucoma.
A 2018 review and metanalysis published in JAMAof all of the therapeutic agents used for knee arthritis long term, including analgesics, antioxidants, bone-acting agents, nonsteroidal anti-inflammatory drugs (NSAIDs), intra-articular injection medications such as hyaluronic acid and corticosteroids, symptomatic slow-acting drugs in osteoarthritis and putative disease modifying agents, found that only glucosamine sulfate was associated with pain improvement. This also may be another answer to “What is the best supplement for arthritis?”
Arthritis Foundation recommended dosage: Capsules, tablets, liquid or powder (to be mixed into a drink); 1,500 mg once daily or in three divided doses to prevent stomach upset. Often combined with chondroitin. May take up to one month to notice effect.
Chondroitin is a component of human connective tissues found in cartilage and bone. In supplements, chondroitin sulfate usually comes from animal cartilage. Reduces pain and inflammation, improves joint function and slows progression of osteoarthritis (OA). Chondroiton is believed to enhance the shock-absorbing properties of collagen and block enzymes that break down cartilage. Helps cartilage retain water and may reverse cartilage loss when used with glucosamine.
The largest study to date, the 2006 Glucosamine/chondroitin Arthritis Intervention Trial (GAIT) looked at 1,600 people with knee OA. (See above under glucosamine for results.)
A separate 2011 study showed a significant improvement in pain and function in patients with hand OA using chondroitin alone.
A 2013 review of the evidence on use of chondroitin for OA concluded that chondroitin has a beneficial effect on different kinds of cells involved in osteoarthritis and that it is an effective and safe treatment option for patients with OA.
Chondroitin and glucosamine supplements appear to be safe and constitute another good answer to the question, “What is the best supplement for arthritis?”
Chondroitin taken with blood-thinning medication like NSAIDs may increase the risk of bleeding. If you are allergic to sulfonamides, start with a low dose of chondroitin sulfate and watch for any side effects. Other side effects include diarrhea, constipation and abdominal pain.
Arthritis Foundation Recommended Dosage: Capsules, tablets and powder; 800 mg to 1,200 mg daily in two to four divided doses. Often combined with glucosamine. Allow up to one month to notice effect.
Research has shown that CBD interacts with the body’s endocannabinoid system, which plays a role in regulating pain and inflammation. CBD may also help reduce the production of inflammatory cytokines, which are molecules that contribute to inflammation in the body.
Though research to date has been somewhat limited, both animal and human studies have shown positive effects.
In a 2019 study published in the journal European Journal of Pain, researchers found that CBD gel applied to the skin significantly reduced joint swelling and pain in rats with arthritis. The study suggested that topical CBD may be a safe and effective treatment for arthritis-related pain and inflammation in humans.
In a 2020 study published in the journal Pain Medicine, researchers found that CBD treatment improved pain and sleep in patients with rheumatoid arthritis. The study suggested that CBD may be a promising therapeutic option for management of pain and other symptoms in patients with rheumatoid arthritis.
A 2020 study published in the journal Cell Death and Disease concluded that “CBD possesses anti-arthritic activity and might ameliorate arthritis via targeting synocial fibroblasts under inflammatory conditions.”
A 2022 study published in the Journal of Cannabis Research found that CBD se was associated with improvements in pain, physical function,and sleep quality. The majority of respondentsreported a reduction or cessation of use of other medications after CBD use.
Other supplements that have evidence of effectiveness for arthritis include: Borage oil, Boswellia, Bromelain, Cat’s Claw, Devil’s claw, DMSO, Ginkgo, GLA, MSM, Pycnogenol, St. John’s Wort and Stinging Nettle.
There are many supplements that can reduce arthritis pain and functional limitations. All of them are less risky than using pharmaceuticals for pain relief. The supplements not only reduce pain, they appear to have a beneficial overall biological effect on the disease process.
My last experiment for treating residual Lyme/MSIDS arthritis pain has been an elimination diet to determine what is causing the inflammation/pain. This is quite a process but certainly an entirely new education on food and the body. Again, what works for one doesn’t work for another but in my case food is a huge player.
So far I’ve discovered I can not tolerate gluten or nightshades. I’ve already limited sugar, grains, and alcohol. Still trying to figure out if there is any dairy I can partake of as well as nuts/seeds and other grains or beans.
One thing is for sure: if you suffer with enough pain you can give up almost anything!
We have long known of the cytokine and bradykinin storms associated with the severity and mortality of COVID-19. However, as my research began to reveal, I believe these are secondary to the main culprit in COVID-19 and Spike Protein pathology: The Reactive Oxygen Species (ROS) Storm.
Previous studies highlighted the significance of a cytokine storm to the severity of SARS-CoV-2 infection, and more recently, the possibility of another storm, the bradykinin one, also contributing to the widespread tissue damage observed in some COVID-19 patients, involving those with hypertension comorbidity. Under these unprecedented conditions, there is yet, another equally relevant, still overlooked, storm on the forecast for hypertension: the reactive oxygen species (ROS) storm.
This is where NACenters the picture.
It acts directly as a scavenger of free radicals, especially oxygen radicals. NAC is a powerful antioxidant. It is also recommended as a potential treatment option for different disorders resulted from generation of free oxygen radicals.
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.