The word “Lyme” has come to represent more than Borrelia burgdorferi. Lyme disease is controversial. Some doctors do not even recognize it. Personally, I am not concerned with the politics or semantics. I am not affiliated with any of the sources referenced here and this website is not here to prove that you have Lyme. Rather, it is a reference for anyone who has an infection, in general, and cannot seem to get rid of it because his or her immune system and supportive therapies are not keeping up. It was formulated in the strong belief that there are more than two kinds of infections – acute infections that kill you and acute infections that go away. I try to use the specific names of infections in this blog, but sometimes when I use the word “Lyme,” I am referring to chronic infections in general. After all, Lyme is not the only chronic infection resistant to antibiotics and skilled at forming biofilms. Nor is it the most complicated infection.
Lyme disease is the infestation of spirochetal, spiral shaped bacteria 3 to 500 micrometers long, into the blood, bones and tissues. It manifests in the weakest points of the body, and so creates very personalized symptoms. According to CanLyme it is commonly misdiagnosed as CFS, Colitis, Alzheimer’s, encephalitis, IBS, arthritis, ALS, Lupus, MS, psychiatric disorders and thyroid disorders .
Lyme is just one of many co-infections that may need to be investigated. Actually, you may not have Lyme at all, but a different bacterial infection (chronic viral conditions can create false positive Lyme Antibody tests). Autoimmune conditions can create false positives, as well.
Bacterial infections thrive in people with already weakened constitutions due to things like autoimmune issues, genetic mutations, or being in the middle of your worst flu ever while coincidentally being bitten by an infected bug.
Other bacteria include but are not limited to:
- Babesia microti,
- Babesia duncani,
- Bacterial Meningitis,
- Bartonella (Cat Scratch Disease),
- Brucella,
- Chlamydia Pneumonia,
- Coxiella (Q fever),
- Giardia,
- Heartwater disease,
- Human Granulocytic Anaplasmosis,
- Human Monocytic Ehrlichiosis,
- Rocky Mountain Spotted Fever,
- Tularaemia Francisella tularensis (Rabbit Fever).
Let’s say you just have Lyme and no other co-infections. Lyme is a spiral shaped spirochete, which allows it to spiral out of the blood stream and into basically every crevice of the body if left untreated for weeks or months. This is why antibiotics alone don’t work for chronic cases.
It becomes complicated when you simultaneously have viral and bacterial infections because antibiotics, though they kill infections, are toxic and play havoc on your gut. In consequence, they weaken immunity thereby activating dormant viruses. If you had childhood viruses or sexually transmitted viruses from before, these may also become active if you are in an extremely weakened state.
Viruses transmitted through bites include but are not limited to:
- Phlebovirus,
- Malaria,
- Mountain Tick Fever,
- Various forms of tick borne encephalitis.
You (probably) don’t just have Lyme – you could have bacterial infections, viral infections, parasites, mental stresses and autoimmune problems. This list does not include the possibility that you feel crummy due to poor diet and air quality, stress, bad sleep, age, heavy metals, or any medications you take. We can’t just blame Lyme disease – we need to learn about ourselves down to our DNA and make lifestyle changes accordingly.
So… you find out that you’ve had a bacterial infection for years and that it’s too late for a simple round of antibiotics to save you. Now what?
The answer is it depends. You may or may not need an antimicrobial agent to reduce the infectious load. I personally feel better getting off of antimicrobials more often than not. Remember that if you decide to take antimicrobials/antibiotics, the goal is to one day be able to come off your meds and let your immune system take care of the rest. In order to due this, I recommend putting a large focus of your efforts on boosting your immune system. This does not simply imply that you take immune boosting supplements. Conversely, immunity health requires work in an umbrella of physiological core functions; namely, in digestion, metabolism, detoxification, cellular communication, stress levels, the endocrine system, the reproductive system, the adrenals, and of course, the immune system itself.
You may or may not need biofilm busters like enzymes. Biofilm is a sludge coating that forms over colonies of bacteria, impenetrable by antibiotics. Lab studies show that dousing bacterial colonies in bleach doesn’t break them down, and that biofilm is up to 1000 times harder to penetrate than bacteria. Thus using biofilm busters while on antibiotics is a good idea. Systemic enzymes are a common way people break down biofilm. Mind you, like Lyme and co, biofilm is difficult to clear.
You may be able to support the regrowth of good bacteria with probiotics and short chain fatty acids.
Killing the infection may result in having a lot of dead debris in your body that needs eliminating. We have a few elimination systems: the bowels, urinary tract, skin and lungs. Make sure your bowels are moving. Your skin is actually the major elimination system, so sweat! Exercise, do hot yoga, and/or take hot baths. Exercise boosts mitochondrial content as well. High heat is processed in your body as a fever, an added bonus that increases the activity of white blood cells, stimulates interferon production (anti-viral protein) and activates T lymphocytes. Supporting your liver and increasing glutathione production (without overdosing) can also be useful.
Further investigation:
- Mineral ratios which you check via urine or hair. You can also find out if you have heavy metals this way.
- Genetic factors which are tested through saliva. The MTHFR genetic mutation is associated with decreased enzyme activity in the liver, making it harder to remove synthetic forms of folic acid and B vitamins in your body. Taking the methylated form of folic acid (L-5-MTHF) makes all the difference if you know you have this mutation.
- Cortisol and hormones are tested through saliva and blood. Chronic infections exhaust the adrenals, which in turn make it harder for your body to create progesterone, estrogen and testosterone as adrenal cortex will focus its energies on creating more cortisol to avoided burnout. Aldosterone levels can become abnormal. The endocrine system can become abnormal. Metabolic disorder may emerge. All of the glandular systems rely on each other and if one is out of balance, its time to investigate them all.
- Nerve conduction is sometimes a problem before, or becomes a problem after being infected. Neurologists and even cardiologist can find out if nerve conduction is a problem for you. But you probably already know. A lot of Lyme patients are misdiagnosed with ALS and MS. Lyme gets into connective tissues and creates autonomic neuropathy. For me, this meant thermal regulation problems, non-reactive blood pressure to exercise and change in body position, chronic fevers without sweat and dizziness that made it hard to walk straight. Support mitochondrial function by keeping your insides clean and using meds to counteract the nerve damage when necessary.
- Sleep disturbances can make anyone sick. Good sleep is one of the most important things you can do for immunity, your adrenals, everything. Sleep apnea, hormones, itchiness (a symptom of Lyme), stress and even stomach problems are some causes of sleep disturbances. Before you go to a sleep clinic, you can try taking melatonin and sleep aids.
- Environmental sensitivities wreak havoc on some people. Genetics play a big role here. Some people can smoke cigarettes like chimneys and never get cancer, while others can smoke far less, but have the p53 genetic mutation, which 70% of people who get lung tumors carry. Allergies will also weaken you, causing inflammation on top of your already weakened constitution. Do food elimination diets, test air and water quality, stop smoking and stop eating burnt food.
- Medication side effects are different from herxes. With Lyme, your T1/T2 balance alters, making some herbs and foods that you think are good for you actually worsen your problems. Some meds also inhibit your Cytochrome P450 enzymes which make the toxins in your drugs get trapped in your body, burdening your body with more garbage and making it harder to eliminate any of it. Then there is the matter of the non-medical ingredients in your medications that you may not realize are there, like maltodextrin and trace metals.
- Self-defeating thoughts are holding you back. Meds and doctors can only be your raft. You hold the paddles. Feeling bad for yourself adds stress on top of stress. Thinking “I could never give up bread” will make it impossible for you to give up bread. Stress is more than emotional, there are physiological changes in your body that derive from stress.
Having Lyme disease is not easy, but you don’t have to stop living. It’s a good time to get to know your body, learn medical jargon, see doctors and experiment with treatments and foods to see what feels right.
Just found out about you. Very inspiring! Will definitely buy your book!
J have had Lyme for 22 years and feel somewhat ok on a Buehner protocol. I’m writing because you mention cleaning Lyme debris from the body and left out one very problematic modality: the eyes. Buehner notes that Lyme spirochetes are in the eyes within 30 minutes after they enter the body. There they attack critical collagen structures, including the optic nerve. The eye is filled with fluid that becomes cloudy with debris from dead bacteria and cells. The eye eliminates contaminated fluid through a microscopic mesh that becomes clogged with all of the Lyme-related debris overload. This in turn elevates the fluid pressure which damages the optic nerve. We are talking about Lyme-induced glaucoma, with an overlay of faux cataracts (cloudy fluid). Opthalmologists do not understand any of this. I was told a few days ago that I was going blind by an opthalmologist who had never heard of Lyme. I tried to explain it to him but he was not interested.
Things that I do:
1. Make tea every morning with fresh turmeric and ginger. I have now moved to the tropics to grow my own fresh supply of these roots. The combination reduces inflammation.
2. My skin pathogen elimination process takes the form of scalp lesions. I found that a poultice of crushed garlic mixed with aloe vera gel clears these lesions. There is some good science indicating that topically applied garlic enhances communication between the skin and the rest of the immune system.
3. I drink 3 tablespoons of coconut oil every day, primarily to fight Candida and other fungal parasites. Instinct tells me that fungal overgrowth in the digestive tract (leaky gut) is actually teaming up with the bacterial biofilms. No science on that, just a “gut feeling” (sorry!).
Keep up the great work. Pura vida!
Nyle, I’ll have to do some research on Lyme’s effects on the optic nerve. Do you have any link or book recommendations on this topic? Also, do you think eye drops (herbal, antimicrobial, enzymatic, other?) would help this condition?
From the general medicine side, it’s called ocular lyme:
http://www.nejm.org/doi/full/10.1056/NEJM200111013451816
within opthalmology, it’s part of a radical rethinking of optic nerve degeneration (read down the frightening list of possible causes, lyme is there):
http://glaucomatoday.com/2013/12/glaucoma-associated-with-systemic-disease/
Buhner has an extended protocol for glaucoma (without specifically agreeing that Lyme might cause the condition):
http://buhnerhealinglyme.com/symptoms/glaucoma/
These drops, made from a root extract of Indian Coleus, seem to help mitigate one “risk factor” for glaucoma:
http://www.ncbi.nlm.nih.gov/pubmed/23023353
The extract is commercially avaialble from several sources, none easy to access from Central America. But I can grow the plant.
Deficiencies lumped together under the name glaucoma manifest in many ways. Glaucoma is not a specific pathogen and there is no established cause. It is often associated with elevated fluid pressure in the eye, but that is a correlation only, and a weak one at that (less than 50% co-occurrence between elevated eye pressure and optic nerve degeneration, based on my tally). Herbal/pharmaceutical/surgical remedies are all concentrated on reducing the pressure in the eye. Admittedly, this is treatment of a symptom, not a cause, and most treatments have serious side effects. Remarkably, the medical community has no treatment program for optic nerve issues and considers lost nerve function to be irrecoverable. Some specialists sell herbal/nutrition preparations to support the optic nerve. Energy medicine has interesting ideas, with few proven results.
Your blog raises many questions about systemic disorders — what are root issues and what is collateral damage. It’s incredibly exciting to look at things in this new way. I may be going blind but through your visionary research and generosity, my world is filling with light. Many thanks!
I will write an article about occular Lyme in the Spring. It’t the best way for me to learn 🙂
Thanks for the links
Hey Nyle
I probably live not far from you.I have used Gordon Medical on and off for years,but they aren’t my first go to team.
I am going to mention a guy named Fred Pitt who does Lyme coaching and he had serious eye issues detached retinas due to Babesia.He is very very knowledgable.I am a patient of Dr Klinghardts and I found him through their office.He got him self well and his vision is fine.I haven’t talked with him for about two years but he’s in Arizona and you might google him for contact info and check him out. Also many have mixed feelings about DR Klinghardt, but he has been very helpful as one of my team members.Hes kind of a savant by way of resources for all the weirdest issues and who the specialists globally are. Its money, a hat,l and a waitlist but Dr.Schaffner comes to Marin county every 2 months Marin Naturopathic office in San Rafael.She runs Dr Ks clinic near Seattle so she is close, cheaper and could access who’s dealing with thisLyme/ ocular stuff in their referral system if that angle appealed.
Ok well hope that maybe those leads could be of help .
Best,
Catherine
Wonderful that you will write about ocular Lyme — I can’t wait to see it! Some thoughts:
Vision is both mechanical and jnformational. Images are synthesised in the brain, in a way that includes input from the balance organs. Several years ago I had damage to my balance organs that resulted in extreme vertigo. I had to relearn how to walk, and it has remained difficult since.
In Chinese medicine the eyes are closely associated with the liver. Liver damage or dysfunction are thought to be suspect in many eye disorders. I had a near fatal industrial poisoning a few years before contracting Lyme. The pathogenic pathway and expression may have been somehow related.
Eye specialists tend not to think much about the condition of the optical fluid, since they have few tools for assessing its condition. My fluid is cloudy, which may be from Lyme blebs. No way to know.
Researchers at UCSF Med Center are starting to think of cataracts as “misfolded proteins”, perhaps a prionic disorder. This is a DNA problem. Could Babesia be involved?
In a sense, eyes are specialized organs of the brain. A Canadian researcher recently discovered a previously unknown lymphatic system for the brain, draining through ducts buried in nerve sheaths, exiting into the sinus cavities. I think the sinuses are implicated in carrying oral disease upward and inward, perhaps connecting to eye issues. A retired dentist theorized that chronic Lyme was hiding in the capillaries below the teeth. The eyes are very close to the roots of the upper teeth. I wonder.
Nyle, sounds like you’re a research pioneer yourself – too bad you’re not a doctor! Question – if eye doctors tend to be quite ignorant about occular Lyme, who/what specialist is it that helps you with your condition?
At this point I’m winging it. I was examined last week by a good eye surgeon — who wanted to drill holes in my eyes for drainage to lower intra ocular pressure. Of course this procedure causes inflammation and scarring, and has a poor record for stabilizing pressure in the optima range. He prescribed eye drops that I bought, but there are serious negative side effects, and they are addictive (the bottle is unopened). So I blew off that whole experience and went online, which is how I found you. You’re the smartest person in the Lyme room so you are my guru now!
I’ll be back in the US in two weeks, where I’ll be buying things, especially a microcurrent generator. There is a Lyme practice about two hours away — Gordon Medical Group — that uses microcurrent in Lyme treatment, and they might be able to help. They are active in ILADS but I talked with them in the past and one of us seemed arrogant — hope it wasn’t me! There is also a practice in Florida that might be able to help and one in upstate New York. I’m going to comb through the ILADS proceedings from past years to see what they might have to offer.
As with most Lyme, the testing is really inadequate for eye diseases. And the actual clinical practices fall very short. For example, diagnosis of optical nerve damage is done by the doctor shining a bright light in your eye and looking at the back. The eminent opthalmologist that I jest went to didn’t even take pictures of my eyes. Many years ago I had a house mate who ran the photo lab for UCSF Med Center Vision Clinic. He was an artist and lined part of his room with pictures of eyes (San Francisco has always been odd).
Intra ocular pressure is one risk factor for optic nerve damage, and it is measured with simple equipment that you can use yourself. I will do that. I have a plan to lower IOP and will measure the results as I go.
Optic nerve damage is tricky. Standard visual acuity tests really don’t make it because the eyes are out of focus, essentially. Color blindness and peripheral vision tests are flawed when the subject has blurry vision because they rely on recognition of shapes. I can’t do that because my optical fluid is cloudy, not because I have color blindness or loss of visual field.
My goal is to fully restore optic nerve function, and I will be starting with an aggressive microcurrent program in about three weeks, supplemented by hebs and of course following your recommendations for increase of muscle mass and metabolic throughput. There is a clinic in Germany that has a good track record with optic nerve restoration and I may go there.
Clearing the optical fluid I believe is a Lyme issue and I think the only hope is to empower the immune system to cleanse the natural drainage for eye fluids (Trabecular mesh), which I think is blocked by blebls. My theory is that natural enzymes within normal immune function will do that and I want to stimulate production of those with herbs. I’m patient zero with nothing to lose!
Thanks, as always for your inspiration. Will keep you posted!