Publication: Townsend Letter/ July 2017
Summary: Receiving hyperthermia treatment was a turning point in Michelle’s recovery from debilitating tick-borne illnesses.
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Authored by Michelle McKeon
Recovering from Lyme disease has been a huge part of my life for almost a decade now. When I first began this journey I had no idea how many pieces to this puzzle I would have to put together to solve my body’s health crisis. What I had learned is that the devil is in the detail. The devil for me was MOLD, and boy did it put me through hell and reek havoc on my already Lyme immunosuppressant body. As, being in an environment with mold, can make ones Lyme disease experience much more severe.
Mold can develop indoors and outdoors and while it can grow in any season or environment, it flourishes in warm, damp, and humid places. Mold implies many types of fungi that develop in filaments and breed by creating spores. Spores cannot be seen, though when the mold spores land on a moist surface, mold begins to grow. Also, mycotoxins, which are toxic chemicals, are found in mold spores. Molds that are usually seen inside are called Cladosporium, Penicillium, Alternaria, Aspergillus, Stachybotrys chartarum (green mold), and Stachybotrys altra (black mold). This black mold is what ended up greatly affecting my health and added to the cause of completely debilitating me in 2011.
At that time I was living in an apartment, which looked to be clean and mold free. However, I did not realize that there was mold in-between the walls. I had been living in that apartment for a little over two years, and my health had drastically declined during that timeframe. At that point my main focus was only to try to kill the pathogens brought on by Lyme disease to help my symptoms improve. I did not understand that while lowering the pathogenic load is crucial in the recovery process, there are also many other factors as well that may need to be addressed. I ended up contacting a physician, and during a consult he asked me about mold. I dismissed his question and stated that my problem was not mold and that it was in fact Lyme. At that point it had taken me so many years to get this Lyme diagnosis, so the thought of having a problem like mold that was adding to my devastating symptoms was inconceivable to me. I never looked at mold as being a big deal and I had no idea the magnitude that mold mycotoxins could play on one’s health. Like Lyme disease, it is very misunderstood and can completely debilitate people.
Toxin forming molds come about when moisture is joined with cellulose. The moisture is usually due to flooding, leaks, broken pipes, or inadequate ventilation. The cellulose source usually involves drywall, carpet padding, wood, paneling, and dust. Unfortunately, something that most people don’t realize is that if a substantial amount of water joins with cellulose and is not dealt with within 48 hours, mold will begin to grow. Molds with the capability of forming toxins will do so when their colonies come in contact with chemicals like adhesives, paint, and stains. Toxins are formed as a defense against these man-made chemicals, which can have serious health consequences on those genetically susceptible to this exposure.
About 25 % of the population is genetically susceptible in developing a chronic inflammatory illness brought on by inadequate removal of bio-toxins. Developing this illness is based on their immune response genes known as HLA-DR. When they are exposed to a water-damaged building, their body is faced with a foreign substance. People without this HLA gene are able to recognize that this substance is bad and develop antibodies to bind these substances, known as antigens. Next time when their bodies come in contact with a water-damaged building, the antibodies will know to target the antigen and dispose of it immediately. Unfortunately, people who have this specific HLA gene are unable to clear this antigen, allowing it to stay in their body. As these foreign antigens stay in the body, the immune system tries to continually fight back, creating chronic inflammation.
Some of the symptoms that can be experienced due to this exposure are fatigue, headaches, brain fog, confusion, aches, light sensitivity, sinus issues, abdominal pain, joint pain, concentration and processing issues, mood swings, night sweats, static shocks, vertigo, tremors, and temperature regulation problems. For me, while I already had many of those symptoms from Lyme disease, I noticed that my vertigo, brain fog, concentration, and anxiety became substantially worse after moving into the apartment with mold. It actually wasn’t until I moved out of that apartment that I noticed those symptoms improving at a much more significant rate.
After moving out and noticing such a drastic change in my symptoms over the next few months, I thought about the question my physician had asked me regarding mold. I began to look into mold a little more thoroughly and ended up having my old apartment and my new apartment tested. Soon enough I realized that my old apartment did in fact have a serious mold issue.
There are a few ways that you can test for mold. One way is taking petri dishes and labeling them in each room you leave them in. The dishes should be left open in the rooms for an hour. After that close the dishes and put them in a brown paper bag. Then, find a dark place (bottom of a draw) to hide this bag in for two weeks. If there is a mold problem, you will usually see mold in your petri dishes two weeks later. While this is a very inexpensive way to test for mold, it is not the most accurate.
Some more accurate tests would be to order an ERMI test, which stands for Environmental Relative Moldiness Index or a less expensive alternative is the HERTSMI-2. They are quick tests that can give you a sense of the spores that are around the area. The ERMI separates common molds from toxin producing molds, while the HERTSMI tests for the top five nasty toxin producers. It would be most beneficial to run this test in multiple locations in the house. Ideally in rooms where either you spend the most time in, like your bedroom or where you suspect water damage, like a basement.
Another way to test for mold would be hiring a mold inspector. They would be able to give you the most accurate results. A thorough inspection can find things that the ERMI misses. The inspector would be able to identify if there is mold on something in the HVAC system, behind a wall, or if there is dirt or mineral deposits that suggest there was a water intrusion. The inspection usually includes air samples, tape lift samples, and a remediation plan.
Once you have your environment tested, it would also be beneficial to run some labs for yourself. Your physician may monitor your MMP9, VEGF, C4a, and TGF beta-1 results when treating your mold illness. They may also have you preform a Visual Contrast Sensitive Test to determine your progress during treatments. Ordering tests from Real Time Labs is an additional test that is highly effective in identifying which types of mold toxins your body is dealing with and how much of it is in your system.
After I realized that mold was causing a roadblock in my recovery, I began looking into ways to treat mold mycotoxin illness. I was currently on the Patricia Kane Protocol, which is probably why my improvement was so significant after moving out of my old apartment. As this protocol is very effective in removing mold mycotoxins and repairing the cell membranes that were damaged in this process. I also added the toxin binder welchol to my treatment regiment, which I take before a sauna, enema, detox bath, or colonic treatment to aid in removing these toxins out of my system. Some other binders that are used to treat mold illness are cholestrymine, chlorella, bentonite clay, and activated charcoal. Though, it is important to remember to work with your physician in going very slowly with treatment if you body is in a sensitive state.
Since understanding that mold is a common recovery factory for many people that suffer from chronic Lyme disease, I have taken my treatment for mold mycotoxins very seriously and have greatly improved my health by doing so. I would not be where I am today if I had not addressed mold as a contributing component to my health issues. While, our society and medical community has a long ways to go in acknowledging the devastating effects that mold can have on our health, it is encouraging that there are some physicians who do take mold illness seriously. If mold illness is something that you suffer with, it is hopeful to know that with the proper treatment and guidance, you too will be able to overcome this major hurdle on your road to recovery!
Authored by Michelle McKeon
In 2010, when I was first diagnosed with Lyme disease, I remember sitting in my Lyme Literate Medical Doctor’s (LLMD) office. He asked to look inside my mouth. As I opened up real wide, I thought Now what is he going to find inside my mouth? Later I learned that he was checking to see how many dental amalgam or “silver fillings” I had. Well, I was hiding quite a few in there, and as my LLMD shook his head, I asked him if he had found any buried treasure? When he responded No gold just silver, I realized he was talking about my cavities.
For the past 200 years dentists have used mercury as the prime component of amalgam fillings. Amalgam fillings are comprised of 45-55% of metallic mercury. This is concerning as it has been proven repeatedly that mercury can cause many health risks. Some of the toxic side effects can result in damage to the kidneys and lungs and to the nervous, digestive, cardiovascular, endocrine, respiratory, and immune systems.
While dentists all around the world continue to use dental amalgam in their practice, it is clear that there is a disconnect among physicians, dentists, and patients on the truly harmful nature of this material. The American Dental Association (ADA) teaches dentists that mercury cannot be released once it is mixed into the filling material. Unfortunately, this is completely inaccurate. There are numerous scenarios where mercury can be emitted from dental amalgam. Some ways this can happen is with stimulation through brushing your teeth, chewing, or clenching your teeth, during dental procedures, and even through the consumption of hot liquids. Also, the side effects are intensified as the number of fillings increase.
Dental amalgam can harm anyone who has them in their mouth. Though, there are many conditions that can cause people to be even more sensitive to mercury toxicity, such as Alzheimer’s disease, ALS, Autism, Chronic Fatigue Syndrome, MS, Parkinson’s disease, and Lyme disease.
Having Lyme disease myself, that was a significant concern to me. I decided to look into ways to remove the dental amalgam from my mouth. I soon realized that this was not going to be an easy feat. My LLMD recommended that I get tested for heavy metals. When I received my test results, I was not surprised that they came back high in mercury. To treat this my doctor recommended chelation therapy. Chelation is the binding of mercury and other heavy metals in the body to aid with the detoxification process. However, it is important to keep in mind chelation therapy can be very aggressive in a Lyme sensitive body. Therefore, it is advised to wait until your body is strong enough to tolerate this treatment.
The next step for me was finding a biological dentist to remove my dental amalgam. A biological dentist recognizes that your dental health can play a major role in various health conditions and focuses on how your body functions as a whole. Their practice also understands the safest way to remove amalgam fillings without causing detrimental side effects to your health in the process.
My biological dentist took many precautions during this procedure. Prior to having my amalgams removed, I was required to take chlorella. I also took chlorella and a tincture that would help my body chelate heavy metals after the removal of my amalgams. Furthermore to help my body detoxify, I was given a vitamin C infusion directly following the procedure, and I went to an infrared sauna once a week for the next month. Dietary restrictions were also recommended during this process. I reduced my intake of fish and other foods that were high in mercury and tried to eliminate carbohydrates and sugars, as they feed oral and gut bacteria. I increased my fiber intake, which helped me eliminate waste and toxins more efficiently. Finally, increasing my water intake was key for my kidneys in flushing out toxins.
Extra safety measures were taken during the replacement of my amalgams as there is a risk of becoming exposed to mercury for the dentist, assistant, and patient. My biological dentist’s assistant constantly sprayed a stream of water in my mouth to minimize the mercury vapors. They also used a high-volume evacuator, which helped suck up the vapor and particles released during the removal process.
Throughout the procedure I was instructed to breathe through my nose and not my mouth. A dental dam was inserted in my mouth to prevent me from swallowing drilled out amalgam particles or inhaling mercury fumes. The office was also well-ventilated, and it was set up with air filters to help reduce the mercury levels. Once my amalgams were replaced, I immediately washed my mouth out, while listening to my dentist review the procedure. He explained that he uses ceramic (porcelain) to replace the amalgam fillings because it is not associated with any toxic side effects, and it does not produce any electrical currents, preventing corrosion of any other restorations in the mouth.
Research indicates that over 67 million Americans above the age of two exceed the intake of mercury vapor from the dental amalgams in their mouth that is deemed “safe” by the US EPA. That number is alarming, especially when many of those people are suffering from other chronic conditions that are only made worse by mercury exposure.
I waited a long time before going through this process, as I was very apprehensive that if my body was not strong enough to handle the procedure, I would backslide in my journey towards recovery and feel even worse. I cannot emphasize enough how important it is to wait until your body is ready and to make sure you are taking all of the appropriate safety measures when removing amalgams. Fortunately, since this procedure I have been able to reach the next step of wellness in my recovery with Lyme disease. Mercury exposure from dental amalgams is something everyone should look into, whether they currently suffer from a chronic illness or not.
Authored by Brendan Fillar
Chelation is the standard treatment for removing heavy metals from the body. A few of the heavy metals that are quite common in people include mercury, lead, nickel and arsenic. Lyme disease and many other chronic illnesses can impede the process by which the body filters heavy metals, resulting in heavy metal toxicity. Heavy metals are not excreted from the body effectively and tend to gather in the soft tissues. Dental fillings, cosmetics, antiperspirants, drinking water, air, food, and lead paint in our environment all attribute to heavy metal toxicity. Chelation therapy can involve intravenous injections, suppositories, and oral doses of chelating agents. A chelating agent is a compound that reversibly binds to another metal. In terms of heavy metal detoxification, a chelator pulls metals that have previously attached themselves to bodily tissues and mobilizes them so that the body can eliminate the heavy metals naturally. Chelation is considered a detoxification therapy, though it is more specific in its targeting of metal toxins.
Heavy metal toxicity can cause many health problems and varying symptoms such as fatigue, digestive distress, depression, reduced ability to properly assimilate and utilize fats, impaired blood sugar regulation, and an array of reproductive problems. Another major problem with heavy metal toxicity is that if you are deficient in essential metals, your body will use toxic metals as “stand-ins” instead of the needed metals. Also, Lyme and other pathogens are prone to hide and thrive in the presence of certain heavy metals. This can be a huge roadblock in the recovery process if you are not following a strong chelation program. Proper heavy metal testing and treatment is critical for recovery.
There are many different ways to measure the levels of metal toxicity in a person, such as hair analysis, blood tests, and urine tests. I have had all 3 tests done over the years. These tests revealed that my mercury was notably above the acceptable range and arsenic levels were a little above the acceptable range. The physician who ordered and reviewed the test did say a low does of oral chelation could be done. Though, the metals were not likely causing much of an issue related to my debilitating Lyme disease illness. Years later I learned that our medical system deems heavy metals that can cause significant health issues somewhat acceptable. Therefore, I wanted to have a more specialized test done, and get the metals removed.
Eventually, through a different physician I received the “Glycine Protocol”. This protocol is a Heavy Metal Urinary Challenge, that involves taking the chelating agents EDTA in suppository form and DMPS, Glycine, and Acyclovir orally. The specifics of the protocol consist of taking Acyclovir for 3-days leading up to the challenge, taking Glycine the evening beginning the challenge and an EDTA suppository before bed. Upon waking the DMPS is taken orally on an empty stomach with plenty of water an hour before eating. Urine is collected during the night if needed, and for 6-hours after waking. To do this test you will need to have your physician order a Urine Toxic Metals collection kit from Doctors Data or a Toxic Elements Clearance Profile from Genova.
This protocol revealed how bad my heavy metal load truly was. The heavy metals that were above the acceptable range were lead, mercury, cadmium, cesium, gadolinium, nickel, rubidium, and thallium. In addition to these, I also had elevated levels of aluminum, arsenic, barium, gallium and tin that fell in the acceptable range. Again, there really should not be an acceptable range for any heavy metal, as they are toxic to the body.
The logic behind the Glycine Protocol challenge is two fold. One, by using two different types of chelating agents and the amino acid Glycine, you have a better chance of finding out the different types of Heavy Metals you may have and how heavy the load may be. Varying chelating agents can have a stronger affinity to different metals, so if you only use one agent there may be some metals in the body that are not being pulled from tissues and going undetected in a challenge. Two, it has been found that viruses in the body inhibit the release of heavy metals. Therefore, by turning the viruses off for 3-days leading up to the challenge, you are increasing your odds of getting a more accurate result. With this logic in mind during the chelation treatment, it is recommended that one consider taking an ongoing herbal antiviral protocol. You could choose to be on a pharmaceutical antiviral prescription or an herbal antiviral. Personally, I try to stay away from taking pharmaceutical drugs unless it is absolutely necessary.
One premise as to why it is believed viruses inhibit heavy metal release from the body was noted in a study of Autistic children. Many children with Autism were found to have viruses, and when they were put on antivirals they began to drop heavy metals in their urine. This was happening without chelating agents being given. Just by turning the viruses off the body began to work more effectively, and the release of heavy metals occurred.
As for the results of the Glycine Protocol, I was alarmed to see that Gadolinium was detected at well over a 1000 times higher than the acceptable range. This heavy metal had not even been tested for during previous tests. Gadolinium is a radioactive heavy metal, and is not readily found in our food supply or drinking water. Having been curios on how this occurred, my physician informed me that it was likely the result of contrast received during past MRI scans. I confirmed that I had received contrast during multiple MRI’s, though it had been over 7 years since my last MRI scan.
According to many articles, radiologists state the contrast should be excreted out of the body within 24-hours after injection. It ends up that while it may not show up in the blood stream after 24-hours, it may still be in the tissue. One reason this may happen is that when Gadolinium is given as a contrast during a scan it is bound with the chelating agent DPTA. If the bond separates, then Gadolinium is left behind in the tissue. In theory that bond should keep Gadolinium from being deposited in the body and excreted via the urine in a reasonable time. Unfortunately, if a person has preexisting heavy metal issues, and the DPTA has a stronger affinity to one or more of those metals over Gadolinium, it will drop the bond with Gadolinium leaving it in the body. It will then bond with the other heavy metal, which is eventually excreted. As a result Gadolinium, a radioactive metal, is left in the organs and tissues for years to come, or maybe a lifetime if it is not chelated out. Who knows what health effects this is having on so many individuals
The good news is that after my first 5-months of chelation, I did another “Glycine Protocol” challenge, and my levels of Gadolinium had dropped 40%. I also had a reduction in all of the other metals noted above, with Mercury, Aluminum and Gallium showing none detected. The interesting part is that I had some new Heavy metals show up that were not detected in the pre-chelation challenge. Platinum and Tungsten both came up and were beyond the acceptable range. My physician explained to me that the chelating agents EDTA and DMPS that were used first pull the metals that they have the strongest affinity to. After these metals are gone, or notably lessened (they may still be in the bone), they will begin to bond with other metals that were not previously being pulled.
The chelation protocol I was first recommended consisted of taking one of the chelating agents every other day in the form of suppositories before bed. The dosage was determined by my physician, and based on body weight. I would take EDTA and then have a day off without taking an agent. The next day I would take DMPS, and then have a day off before going back to EDTA. The day off gives the body time to re-mineralize, as chelating agents will also pull beneficial minerals from your body in addition to heavy metals. I did this for approximately 5-months straight before doing the follow up challenge.
Since doing my initial 5-month chelation cycle, I have learned that it is best to take breaks in chelation. The reason for this is that metals are stored in the bone too, and it takes bone cell regeneration for the metals to be released from the bone and deposited in tissue so that the chelating agents can bond with them and be excreted. If you do not take breaks from chelation, results from this challenge may show you have eliminated the heavy metals. Though, levels may still be high in the bones, which will eventually be released into the tissue. Currently I am on a 3 weeks on and 3 weeks off chelation schedule to prevent this issue from occurring.
Some practitioners recommend taking the agents daily during the on chelation schedule, as during the off weeks of rotation the body may be re-mineralized sufficiently. I have decided to take a more conservative approach. Years ago when I was taking loads of antibiotics for Lyme treatment, I had dealt with some metabolic issues as a result of having deficiency in certain minerals. Fortunately homeostasis and healing has occurred in that area, and my mineral levels seem to be in balance now whenever checked.
Through this process of recovering from heavy metal toxicity, I had experienced some symptoms along the way. These symptoms included elevated fatigue, headache, vision changes, and sleep disturbances. They were by far worse when I began the initial round of chelation, and even so bad that I had to stop for a couple weeks. The problem was that I was not doing detox support at the time and my liver was getting over worked. Once I began working with an herbalist to aid in detoxification, the chelation process became much more tolerable. I found that as time went on, it was usually only the first week back on chelation after a break that the symptoms were the worst. Fatigue and sleep issues being the most notable. I now rotate between taking herbs and coffee enemas for detoxing, and this has made the chelation process much more tolerable to go through.
In the next month I am scheduled to do another challenge. As, I am finishing up my second round of chelation that is designed to take approximately 6-months in length. Though, this time for me it was done over a 12-month period and included numerous long-term breaks. I am very interested to see how much lower my numbers have become, and if anything new has shown up. My practitioner says that for some individuals it can take up to 1-year of chelation for every decade a person has been alive. So this can be a long process for some, though well worth the effort in achieving better health.
Authored by Michelle Mckeon
Hyperthermia treatment has been around for centuries as a safe and successful treatment option for various illnesses. However, recently it has become a therapy that is gaining more popularity with patients suffering from cancer, Lyme disease, and co-infections. While hyperthermia treatment is offered in the states, it is only available for patients with cancer. This is due to the hyperthermia machines not reaching temperatures that are high enough to kill the spirochetes causing Lyme disease. Therefore, many people travel overseas to clinics in Germany where extreme whole-body machines are available.
I am someone who battled with a severe case of Lyme disease complicated by multiple co-infections. The disease had left me completed debilitated before I decided to make the journey to Germany for hyperthermia treatment. Unfortunately, my body was not responding to the many treatments that I had tried prior to this decision. Due to my health’s rapid decline, I needed to make a decision as quickly as possible.
When it comes to my health, I am meticulous about making sure I do all treatment protocols the right way. Accepting being sick for the rest of my life was never an option for me. Whenever my doctor presented me with a new protocol, I would research, make sure that my list of questions was answered, cross every t, and dot every i.
This next treatment option I figured would be no different. Though let me tell you, I couldn’t have been more wrong. If you have ever tried to research hyperthermia treatment, there really isn’t a lot of information out there. Therefore, when my doctor suggested a treatment where I would need to travel overseas to heat my body up to above 105 degrees, my anxiety went through the roof. I actually had a panic attack at the doctor’s office.
I was really terrified, but I felt that I had exhausted all of the treatments available to me in the US and that receiving hyperthermia treatment was my best option. I knew that moving forward I had to make all of the right decisions, as there wasn’t any room for error in my current state. During the prior years of receiving treatment I would go one step forward and then two steps back. At this point my health was so far gone that I feared I wouldn’t survive or be able to get back to feeling like myself again if my body negatively reacted to any treatment.
That being said, I know that I am not unique in feeling this way and that many chronic Lyme sufferers are currently in the same distress that I was in. Since receiving hyperthermia treatment, I have tried to advocate for this disease and hyperthermia as an effective therapy for people suffering from Lyme disease, co-infections, and cancer. While I believe that this treatment truly saved my life, it was in no way a silver bullet treatment for me. I was in the late disseminated stage of Lyme disease, and when people get to that point, I don’t believe that there is one treatment that is going to completely heal you.
For me, hyperthermia treatment was very successful in killing many pathogens in my system. It also allowed my immune system to become immensely stronger. When I came back from the clinic my body was able to handle much more than what it could have in the past years, which helped keep me moving forward. However, Lyme and co-infection suffers need to not only kill the bugs in their system to recover, but at the chronic stages it may also be necessary for them to look into factors like methylation, detoxification, Candida, heavy metal, gut, and mold issues for a full recovery. I write this not to discourage you, but to clarify that pre- and post-hyperthermia treatment is crucial for many people’s recovery if they are looking into hyperthermia treatment.
Lyme is the number one worldwide vector borne spreading epidemic. Due to the complexity of this multisystem illness, hyperthermia treatment is becoming a more recognized therapy even though there is very little information readily available. Recently I had been in touch with Dr. Saad Sheer, who is a physician at the Fach Klinik in Germany. The Fach Klinik specializes in treating patients with cancer and tick-borne illnesses with hyperthermia treatment. Dr. Sheer was willing to answer a few general questions that will be helpful for anyone considering hyperthermia treatment:
Michelle McKeon (MM): How successful have you found the results to be on symptom improvement for patients with Lyme disease receiving hyperthermia treatment?
Dr. Sheer (DS): Around 80% of our patients report improvement of their symptoms after the treatments.
MM: Why is hyperthermia treatment so beneficial for patients with cancer?
DS: The hyperthermia increases the perfusion of the cancer tissue, which in turn increases the efficacy of the chemotherapy. Also, the hyperthermia destroys parts of the cancer cells with different mechanisms.
MM: Why does the clinic use antibiotics like Rocephin and Flagyl during Whole Body Hyperthermia (EWBHT) for patients with Lyme disease?
DS: We use antibiotic treatments during the whole body hyperthermia for the Lyme disease because the perfusion of the blood to the tissues is better during the whole body hyperthermia.
MM: How does hyperthermia treatment work in conjunction with chemotherapy and radiation for patients with cancer?
DS: The hyperthermia increases the efficacy of the chemotherapy and radiation and also increases the sensitivity of the cancer cells to the radiation and chemotherapy.
MM: What are the different types of hyperthermia treatments that you use for patients who have cancer?
DS: We use three types of hyperthermia treatments for cancer patients in our clinic:
a) Superficial hyperthermia (skin involvement, lymphangiosis cutis)
b) Local hyperthermia (to the tumor or metastatic sites)
c) Whole body hyperthermia (EWBHT; in combination with chemotherapy and stimulation of the immune system)
MM: What are the most common types of cancers you treat at the Fach clinic?
DS: While we treat all cancers at our hospital, the most common types are:
a) Breast cancer
b) Ovarian and cervix cancer
c) Lung cancer
d) Colon cancer
e) Pancreatic cancer
MM: Is there a certain type of cancer that you have the most success with treating?
DS: We have good results in the treatment of breast cancer, ovarian cancer, cervix cancer, colon cancer, pancreatic cancer, lung cancer, sarcoma and melanoma.
MM: Why is it so important to detox before and after hyperthermia treatment?
DS: The detox before and after the hyperthermia is important to reduce the side effects of the chemotherapy and antibiotic therapies and also to stimulate the immune system.
MM: Why does EWBHT last about six hours long?
DS: The whole body hyperthermia includes preparation of the patient, heating phase, plateau phase and recovery phase of the patient. This all lasts about 5-6 hours.
MM: During EWBHT how long is the body held at or above 40.55°C (105°F) when treating Lyme and/or confections? How long is the body held at the patient’s peak temperature of 41.11 – 41.67°C (106 – 107°F)?
DS: The body temperature above 40.5°C remains for about 90 minutes and the body temperature above 41.1 – 41.6°C lasts for 1 hour.
MM: Would the temperature and duration of time held during EWBHT be similar in treating patients with cancer?
DS: Yes, the whole body hyperthermia for the patients with Lyme disease and cancer are the same, but we are trying to achieve the highest possible temperature with the Lyme disease.
While the Fach Klinik started out as a healing place for patients with cancer, over the years they have opened up their doors to patients with Lyme disease, providing them with hyperthermia and detoxification therapies. From my personal struggle with this disease and from the many people that I have come in contact with over the years who are on their healing journey with Lyme disease, it is important to understand that there are treatments out there that have proven to significantly improve many sufferer’s quality of life, and hyperthermia therapy is what helped me get my life back.
Authored by Michelle Mckeon
What is Lyme disease
Signs and Symptoms of Lyme Disease
Lyme Disease Rash
Where is Lyme disease
Lyme disease treatment:
Authored by Michelle Mckeon
Lyme disease occurs in three stages. The stages of lyme disease are known as Early Localized, Early Disseminated, and Late Disseminated. The severity of the symptoms can depend upon where the infection has spread in your body, genetic susceptibility, the strength of your immune system, if the tick that bit you carried any co-infections, and the length of time the infection has been in your body.
During Early Localized Lyme disease, the infection has not yet spread throughout the body. Therefore, the earlier it is diagnosed, the easier it is to treat. During the first few weeks of infection, some people develop a “bullseye” rash. The technical name of this rash is erythema migrans, and it occurs at the site of the tick bite. This rash is a sign that the bacteria is multiplying in the bloodstream. It looks like a central red spot surrounded by a clear spot with a red circle at the edge. While this rash is said to be characteristic of Lyme disease, many people instead develop a plain red rash and others don’t develop a rash at all. I, for one, never developed a rash when I became infected.
My initial symptoms were full blown encephalitis. I was completely fine one day, and the next day my entire world had changed. In a matter of moments, it felt like my body was shutting down; I began to feel this immense pressure in my brain; I had trouble performing basic functions like swallowing; my vision and balance became disturbed; as well as my ability to form thoughts. Before I knew it, my co-workers were having me lie down on the cold floor because they thought that I was having a heat stroke. I remember looking up at my boss as the rest of my body became numb and thinking, “This is it. I am dying.”
It wasn’t until years later, I learned that my initial reaction was the result of a tick bite, and that the tick that bit me not only infected me with Lyme disease but the co-infections Powassan virus, Bartonella, and Protomyxzoa Rhuematica as well. We believe that Powassan virus may have been the cause of the initial encephalitis. Last summer in 2013, there were many cases of people being infected by Powassan virus on the east coast. It was stated that it is fatal in 30% of people infected by this disease. They were calling it the new tick borne infection. However, Powassan virus is by no means a new disease. It is just highly unrecognized. Unfortunately for me, because of the lack of understanding about tick borne illnesses, my symptoms were not being taken seriously. This began my progression into Early and Late Disseminated Lyme disease/tick borne infections.
There are some cases where a person is only infected by Lyme disease and not other co-infections. For these people the symptoms are a lot less severe. Also, depending upon the person’s immune system, their body may be able to tolerate the infection better than others. In these cases, the initial common symptoms are flu-like symptoms, fatigue, muscle aches, and headaches.
Stage Two is known as Early Disseminated Lyme disease. It occurs several weeks after the tick bite, as the bacteria is beginning to spread throughout the body. At this point, more serious symptoms may trigger a need for treatment because the infection can affect the skin, joints, nervous system, and heart. Rashes may appear in other parts of your body; there may be pain or numbness in the arms or legs as the joints begin to swell; and your headaches may become more severe and frequent, escalating into bells palsy. It is also very common to have a reduced ability to concentrate, heart palpitations, fainting spells, balance issues, and the inability to tolerate heat, noise, smells, and lights. Meningitis and cardiac disturbances may occur at this time too, as the infection will attack whatever is genetically weak in your system.
During my experience in this stage, the head pressure from the inflammation of my brain increased. The pressure would migrate to different areas of my brain, and at times the pressure felt so heavy that I wouldn’t be able to lift my head off my pillow. When I did have to get up, I would have to hold my head with my hand on my chin to relieve some of the pressure. I began to develop intense noise, heat, and light sensitivities; I lost control over my balance and experienced constant vertigo; and my fatigue was like nothing I had experienced before, as I felt like I was a walking zombie. My ears also began to feel very full and were in continual excruciating pain. I remember not even being able to touch the fabric of my shirt to my ears when I put on clothing because it was so sensitive. My ear was constantly bright red and felt like it was burning to the touch. Later, I was diagnosed with 70% nerve damage to my left inner ear, which the doctors told me was due to Labyrinthitis. My neck began to feel increasingly stiff until I lost all control over it. At this time, the doctors told me I had cervical dystonia. Cervical dystonia is a painful movement disorder in which your neck muscles contract involuntarily or can cause your head to uncontrollably tilt forward or backward. To this day, I receive injections every three months to paralyze the muscles from contracting so that I can have more control over my neck.
Throughout each of these stages, as my body continued to shut down, my family and I repeatedly asked if Lyme could be the cause of all of these symptoms. Our answer was always, “No Chronic Lyme does not exist. That is not what you have.” One doctor even smashed his fist on the table and told me that I was not allowed to ask this question again in his office. While this reaction seems absurd, this is a common occurrence for many Lyme suffers searching for answers in a medical community that does not recognize Chronic Lyme disease.
Stage Three is known as Late Disseminated Lyme disease and can occur weeks, months, or even years after the tick bite. It is the last and most serious stage. It consists of people with an active infection of a prolonged duration that have a higher spirochete load, weaker defense mechanisms, greater virulent or resistant strains, are most likely heavily co-infected, and are dealing with a significant amount of neurotoxins.
At this point there can be considerable damage to the joints, nerves, and the brain causing symptoms of muscle paralysis, arthritis, severe cognitive and psychiatric issues, heart problems (such as inflammation of the structures surrounding the heart), disabling fatigue, thyroid issues, neuropathy, and many more issues. Lyme disease can affect any part of your body, which is why it is known as, “The Great Imitator”.
Not only are the symptoms a lot more serious, but patients require a full evaluation for all of these symptoms and each irregularity must be addressed in order to recover. Treatment related problems become a lot more complicated as well. Many people begin to develop antibiotic resistance, colitis, Candida (yeast overgrowth), intravenous catheter complications, and abnormalities in the blood counts, just to name a few. Treatment modalities also become more extensive. At this late stage, the goal is not only to reduce the pathogenic load in one’s system, but also to treat food sensitivities, heavy metal issues, and mycotoxin accumulation. Individuals should also seek help with cell membrane repair therapies, rehabilitation exercises and programs, nutritional supplements, enforcing rest, and avoiding stress. At this stage, people suffering with Lyme disease, will have a very difficult time fully recovering and may have to maintain an open-ended, or an on-going therapy plan.
When I reached this stage, the disease had completely invaded my brain and I was becoming increasingly more debilitated. Even with over a year of antibiotic treatment for Lyme disease, I was still not seeing any improvements and the infections within me were winning. I was becoming entirely controlled by this disease, and I didn’t know how I would ever get out of this nightmare. Even though I didn’t feel like myself, I knew that I was still in there somewhere. I was in dire straits and decided to look into an alternative treatment. Shortly after, I underwent Whole-Body Hyperthermia treatment and a very extensive detoxification and cell membrane repair post-treatment protocol. I began to feel more and more like myself, as I continued with treatment. For the first time I was improving and the disease was no longer winning.
Before becoming ill, I could have never imagined people suffering the way that I had. Many of my symptoms felt as though they weren’t even humanly possible. Until you go through it yourself, no one can really imagine the pain that Lyme sufferers endure. Even while I write this, I feel as if it doesn’t come close to giving justice to how truly painful and debilitating this disease can be. My main goal with this blog is to spread the message that you are not alone and that there is hope in moving forward to a path of getting your life back. In the words of Winston Churchill, “Never, ever, ever give up!”
Authored by Michelle Mckeon
A little over two years ago, I remember looking at myself in the mirror and trying to figure out who the person was that was staring back at me. Growing up I felt that while I had my insecurities at times, my sense of self had always been strong. What was happening to me? I wondered. Not only did I feel completely disconnected from my body, but my friends and family did not look familiar either.
I was suffering from late stage Neurological Lyme disease. My particular strain of Lyme disease was called Lyme Encephalopathy. After having Lyme disease for five and a half years and trying numerous treatments that my body didn’t respond to, I began to decline rapidly enabling the virulent disease to completely invade my brain. The symptoms that I experienced at this time were severe head pressure, fatigue, brain fog, muscle paralysis, light, heat, and noise sensitivity, anxiety, depression, the inability to process information or focus, and vertigo that literally turned my world upside down.
At that point my doctors informed me that my best chance of getting my life back, would be to undergo whole-body hyperthermia treatment at a clinic in Germany. Lyme disease is a bacterial illness caused by a bacterium known as a spirochete. Spirochetes cannot tolerate heat and therefore die at high temperatures. Essentially, hyperthermia involves overheating the body to kill spirochetes. I can remember it was right before Thanksgiving and I was sitting in the doctor’s office with the image of my body being cooked like a turkey in the oven. Only, I was the turkey. Naturally, I was terrified! However, fortunately hyperthermia treatment is far different than the image that I conjured up in my head.Hyperthermia is actually a safe procedure with a high success rate in treating patients with Lyme disease and with cancer.
The night before I left for Germany, my friends and family came over to spend time with me. I remember studying them and trying to form a connection with who they were in my life. It was as if the Lyme had clouded over my brain and while I knew that the memories were still somewhere in there, as hard as I tried, I was unable to recall why they were some of the closest people in my life. That right there told me how far gone I really was in this disease and how badly I needed this treatment to work.
The next day my mom and I flew to an airport in Munich, where a shuttle came to drive us to the St. Georg Klinik in Bad Aibling, Germany. Shortly after our arrival, we met with a team of physicians. The physicians assigned to me inquired about my history with Lyme disease and my general state of health. They additionally collected any medical records that I brought and then spoke about the treatment schedule that I would be receiving over the next twelve days. Jetlagged, dizzy, and exhausted from the flight, I laid down and felt a glimpse of hope as they left the room.
During my stay, the clinic kept me very busy. The first few days they prepped my body for whole-body hyperthermia treatment (WBHT) with various tests and detoxification therapies. The tests included an abdominal ultrasound to check for any possible masses that may or may not have been realized, CD 56/57 test, urine test, lung function test, EKG, echocardiogram, darkfield testing, and a Lyme symptom questionnaire. I also began detoxification treatments consisting of IVs of Vitamin C, Glutathione, and EDTA. Other treatments that received were ozonization of blood, green and red laser light therapy, and a colonic the day before each WBHT. In addition to these, I had infusions of Rocephin given daily, and mineral infusions of magnesium, calcium, and selenium. Adjunct therapies are also a big part of the schedule, so during this time I received magnetic field treatments with singulet oxygen and ionizing footbaths.
It was a very full schedule from the time I woke up until the time I ate dinner. However, it was really nice being an inpatient where the complete focus for those two weeks was all about getting better. I also became close with many of the other patients at the clinic, as we saw each other everyday and ate most all of our meals together. There was a lot of comfort in speaking with others who were going through a similar experience that I was. As many of you know, Lyme is a very misunderstood and lonely disease. So, being around people that I could relate to, encouraged me to feel more supported during this process.
After a few days of detoxification and adjunct therapies, I received my first WBHT. The clinic has a special unit that is well equipped and staffed and operates similar to an intensive care unit. The WBHT lasted approximately six hours and I was put in a twilight sleep so that I wouldn’t be awake during the procedure. A rectal thermometer and catheter was applied to monitor my body temperature and kidney function. My body’s core temperature was increased carefully through the use of whole body infra-red-A-irradiation and held at progressive temperatures until approximately 107°F (41.67°C) was reached. This peak temperature was held for 60-90 minutes and then the temperature slowly decreases. The goal was to bring my body above at least 105 degrees (the temperature at which it is believed most strains of Borreliosis are affected). However, up to 107°F + (41.6°C +) is preferable, if the patient can handle it. This higher temperature is more desirable as it has a better chance of eradicating more strains of Borreliosis and other pathogens that are likely causing illness.
During this time, I was given insulin potentiated Rocephin. Insulin starved the cells of sugar, particularly the cells that were infected with pathogens. This is done so that when the antibiotic enters your system along with a bit of glucose, the antibiotic is targeted to the cells that need glucose the most. These are the Lyme and other anaerobic co-infected cells. This process allows Rocephin, being primarily an extracellular antibiotic, to become effective in the cells too. In addition to Rocephin, patients are now also given Flagyl during the WBHT to attack the cyst form of Lyme.
The WBHT started at about 8:30 in the morning and continued until around 3:00 in the afternoon. When the treatment was finished, I was taken to a private recovery room, which was close to the nurses’ station. Here, the doctors would continually come in to check up and monitor me. They also made sure that I was receiving electrolytes intravenously to aid my body in the recovery process.
For centuries, fever therapy has been known to have a significant healing effect. Many clinics that use hyperthermia treatment on patients with Lyme also use this therapy to treat patients with cancer. As you heat up cancer tissues, heat shock proteins are created, in which direct immunological mechanisms of defense against cancer cells occur. This procedure is done with irradiation or chemotherapy for patients and the technique allows much smaller amounts of chemo (one tenth of a normal dose) to be used with an even greater effect in targeting cancer cells. Using a lower dose of chemotherapy is very beneficial because it allows the patient to become less toxic. Also, after chemotherapy or irradiation, repair mechanisms in the cancer tissue become impaired by hyperthermia. Additionally, hyperthermia treatment aids in boosting one’s immune system.
Local surface hyperthermia and local hyperthermia treatments are also offered to patients with cancer. The local surface hyperthermia is used specifically for superficial tumors such as skin cancers, superficial lymph nodes and metastases of the skin, and the muscles of different primary tumors. In this therapy method, the heat is generated with a water-filtered infrared radiation source (infrared A), which enables penetration into the tissue to a depth of around 1 inch. In local hyperthermia, short wave irradiation is used to heat up cancer tissue or metastases and penetration depth is about 7 inches. In the tumor tissue, temperatures are able to reach higher than 107.6°F (42°C). While cells that are healthy can withstand this treatment, malignant cells become damaged. Also, there are no significant side effects and during local hyperthermia a patient can rest on a warm waterbed.
After the WBHT you may experience discomfort. Personally, I felt like I had just run a marathon and was extremely exhausted. The clinic offered me both homeopathic and pharmaceutical options if needed. However, I don’t remember taking anything, as all I wanted to do was sleep. When I woke up the next morning, the nurses removed my catheter and I resumed my regular eating routine as well as my IV and adjunct treatment schedule. About six days later, I received my second WBHT. I ended up having to push my second WBHT back a day because I was experiencing flu like symptoms from a herxheimer reaction. I cannot emphasize enough how important detoxification is in the recovery process. After my second WBHT, I had a few more days of follow up IVs and adjunct treatments before being discharged.
When I arrived home from the clinic, I only felt a little bit better. I was still experiencing the majority of my symptoms and I was still completely debilitated. It was devastating to not have a functioning brain at the age of 24. Your early twenties are supposed to be all about finding out who you are and discovering your independence. While all of my friends were moving on with their lives with exciting careers, relationships, and travel experiences, I felt like I was stymied. I could not accept that this might be my reality for the rest of my life.
I did not understand why I had come back only feeling minimal symptom relief, while others who I had connected with that had gone through WBHT for Lyme had noticed more significant improvements upon their return. The one thing that did happen when I got home was that every day I started noticing little improvements. This was something that I held on to and that continually gave me hope. One of my biggest concerns was that the disease had gone too far and that I was too sick to come back from this. These little improvements that I noticed everyday told me that my body was responding to the treatment and that maybe this was not all permanent.
Around this time, I was put in touch with another person who had gone to the clinic for the treatment of Lyme disease. His name is Brendan Fillar, and he directed me in a post-treatment protocol that he had done when he returned from Germany. He explained that he did a pre-treatment protocol to assist his body in better tolerating the treatment while in Germany. He helped me understand that the toxic load in every individual can differ greatly, which is why peoples’ levels of improvement vary considerably upon initially returning from Germany. When your body is heated up, it releases many toxins both from the organisms that die during the treatment and from environmental pollutants/heavy metals. However, when these toxins are lessoned, the body can fight pathogens more effectively and aid in the reduction or elimination of negative symptoms.
Brendan went over that while WBHT kills a lot of pathogens, it is not believed that it kills everything. Therefore, it is equally important to attempt to eradicate both known and unknown pathogens that are left after WBHT with a few herbal anti-microbials. These herbs were apart of the post-treatment protocol. Additionally, various supplements to provide nutritional and detoxification support were suggested. Also, even after a very effective anti-Lyme therapy, there may be other factors in the recovery process.
Another key component of this protocol was getting Candida (yeast overgrowth) under control. Almost everyone that has Lyme disease and/or co-infections, whether they realize it or not, is dealing with a Candida issue. A specific herb was recommended for this along with a special diet. This diet consisted of low sugar, low carbs, and mainly gluten and dairy free foods. When dealing with Candida one needs to both starve the organisms with a low sugar diet and reduce the numbers with antifungal herbs. This diet also encourages the consumption of good fats and omegas to help the brain and other cells in the body to work properly. Unfortunately, at this time I realized that hyperthermia treatment was not going to be a silver bullet like I had hoped and that it was going to take time and a lot of detox therapies to see the benefits of the treatment. After mulling over this, I was adamant about getting my life back and had made sure that I did some type of detoxification therapy everyday.
Twice a week I went to an infusion center to get specific IVs. There is a strong correlation between neurotoxins resulting in an accumulation of very long chain fatty acids (VLCFAs). This leads to the destabilization of the cell membrane phospholipid structure. Toxins affect the long chain fatty acids by making them become even longer. This disrupts the signals being sent to the cell membranes, which results in the brain receiving mixed signals and creating various neurological issues. Detoxification and cell membrane repair occurs through these infusions. In turn, neuroinflammation decreases and membrane function begins to stabilize and as the fog begins to clear, you can start to regain control of your thoughts.
Slowly I felt like I was coming back to life and coming into my body. Basic things like sarcasm or social skills were becoming more natural. I noticed that reading and writing became easier as my focus and processing progressed. My vision, brain fog, head pressure, anxiety, depression, and light, heat, and noise sensitivity symptoms were all slowly improving as well. For the first time, my body was responding to treatment and my hope for my future grew. I continued with the post-treatment, which now included more detox therapies. I would go to an infrared sauna twice a week, sweat off toxins twice a week in a detox bath, and also did coffee enemas every week. Every single time I did a detox therapy I felt better.
This I found especially interesting. I realized that before I went to Germany for WBHT, I did not notice improvements when I detoxed. Therefore, I didn’t really understand how significant it was in the recovery process. Sometimes I actually felt worse from detoxing. However, when I came back from Germany my body started tolerating and responding well to the detox therapies. This told me that with less of a pathogenic load in my system, my body was probably able to better tolerate these therapies to move me in the right direction.
Later on that year, I ordered two tests from Fry laboratories, a highly reputable laboratory for tick born infections. I requested a Bartonella test and Protozoa Rheumatica test, which both came back negative. This was very telling because before I received WBHT, both tests showed that I had a substantial amount of each co-infection in my blood. This was very exciting news! Though, it was also a little confusing. While I knew that I had come a long way, I was still dealing with symptoms and felt that I had to be missing something.
It wasn’t until I finally moved out of my apartment that my improvement started going at faster pace. At that time I was having various tests done for mold and methylation issues.Apparently, many people with Chronic Lyme disease have a gene known as the HLA gene that is unable to process mytotoxins from mold. As a result of a predisposition to poor detoxification, an environment was created in my body that enabled microbial overgrowth. This I want to mention can be, and was for me, a huge barrier in the recovery process that many people overlook. After doing some testing it was apparent that my old apartment had a mold issue that I wasn’t aware of. I kept my apartment very clean and there wasn’t any mold that I could see, but now I know that many times that doesn’t matter. Many of the infusions and supplements on the post-treatment regiment actually treat mold. Therefore, the biggest change was getting out of my living environment and moving into a new place. Adding some supplements for methylation support was also very helpful.
I have come a very long way since receiving WBHT and I honestly contribute it to saving my life. Unfortunately, the disease had completely invaded my brain before I left for Germany. For this reason, I had a more difficult road and a longer post-treatment than many Lyme suffers who undergo WBHT. Looking back and remembering how I was at my worst, I had lost all of my confidence and my life was completely controlled by this disease. Through hyperthermia treatment and the various post-treatment therapies, I am able to experience a much happier life. While I still deal with some symptoms, they are a lot more manageable. I have yet to see a plateau and I continue improving. There is hope in getting better and today when I look in the mirror my sense of self is becoming permanent.
On a summer day in July 2006, Michelle McKeon was shopping in a grocery store in Fire Island when she felt her body shutting down. As she lost feeling in her extremities, she was unable to think or speak.
“Ever since that day, I never felt well again,” said McKeon, now 24.
She left her summer plans to work in an ice cream parlor with college friends behind and came home to Ridgewood, where she was diagnosed with a case of heat stroke.
But the symptoms never went away. Each day she felt like the room was spinning, and there was a constant pressure in her ears. Any temperature hotter than 75 degrees made her feel overwhelmed, and any bright light or loud noise gave her an instant migraine.
“These aren’t symptoms people are used to hearing,” said McKeon, who went to 54 physicians over the next fours years, searching for the right diagnosis. Doctors told her she had everything ranging from chronic migraines to depression. Unable to function, she took the spring semester of her sophomore year at Marist College off, hoping to find an accurate diagnosis.
“I just figured that if you go to the best of the best doctors they’re going to figure out what’s wrong with your body…but there really was no answer,” she said.
What McKeon didn’t know was there might be an answer, but not an accurate test to find it. She and her doctors believe she suffers from Chronic Lyme Disease, a condition that is unrecognized by many doctors, as well as the Center for Disease Control (CDC) and the Infection Diseases Society of America (IDSA).
According to the CDC, patients who experience “lingering symptoms of fatigue, pain, or joint and muscle aches” after undergoing a two to four week course of antibiotics for Lyme are experiencing Post-treatment Lyme disease Syndrome (PTLDS).
“The exact cause of PTLDS is not yet known,” notes the CDC on its website, “There is no credible scientific evidence that PTLDS is caused by persistent infection.”
But the commonly used Elisa Screening test misses 35 percent of culture-proven Lyme disease, according to advocacy group the International Lyme and Associated Diseases Society (ILADS). ILADS contends it is indeed an active infection.
The two groups are engaged in a heated debate over the existence of Chronic Lyme Disease, which is made more complicated by the varied nature of the symptoms and inconsistent success of treatments.
In McKeon’s case, she tested negative and underwent a month of antibiotics anyway. They were ineffective, and she went on to other remedies.
Symptoms remain, but answers are nowhere to be found
Without a diagnosis, she returned to school, commuting to doctor appointments in between classes.
“I loved being at college, and I didn’t want to be home because I wasn’t getting any answers,” she said. She learned to never walk outside without sunglasses, not to drink alcohol, and to be wary of any potential bump from a friend that might send her depth perception reeling.
“When you say you have Lyme disease people don’t really take it seriously, so I kind of have to act like I’m okay, and I’m not. I’m really sick…and it’s really serious,” said McKeon.
Despite missing a semester, McKeon graduated in four years with a degree in Psychology/Special Education, and began teaching fifth grade at Highland Elementary School in Midland Park. But every day was a challenge, she said, and her symptoms worsened enough that she was forced to take a leave of absence.
McKeon devoted herself to researching her condition on her own time. She had already ruled Lyme out, but when she found accounts of stumped doctors and matching symptoms online, she was convinced.
Friends advocate for McKeon
“I just remember she called us one day and said ‘I know what I have,’” said Margaret Buttery, one of McKeon’s closest friends. McKeon sent samples off to IGeneX, a lab specializing in Lyme diagnosis in Palo Alto, California. When the results came back, she and other close friend Taylor LaForge threw McKeon a “Lyme party”.
“We had lime popsicles, we got her lima beans, lime colored everything,” said Buttery. “All of which turned out to be really bad for her,” finished LaForge. McKeon now has a restricted diet that eliminates foods that trigger a flair in her symptoms, including carbs, sugar and caffeine.
In the past year and a half since her diagnosis, McKeon has had blood clots from her IVs, picc lines (a type of IV that is threaded through the veins, straight into the heart) in her arm for months at a time, constant injections, extreme diet control, acupuncture, chelation therapy, and detoxification baths.
Her case is extremely unique. “Most people don’t have these many complications from Lyme,” she said. “I’m just extremely unlucky.”
Her mother, Cheryl McKeon, keeps folders for each year so she can record what their insurance does and does not pay for. Since Chronic Lyme is not officially recognized by the CDC or IDSA, it’s difficult to establish that every treatment is medically necessary to insurers, and Michelle does not qualify for disability.
“We’ve gone to the pharmacy and spent three, four, five thousand in a day. If it was two thousand then it was inexpensive,” said Cheryl McKeon.
Lyme, a family story
In 2010, her brother Joey McKeon was also diagnosed with Chronic Lyme Disease after being bedridden for a month.
Before getting sick, he describes himself as “arrogant and selfish,” unable to comprehend what was wrong with his sister. “I’d be like ‘She’ll get better, this isn’t my problem, the doctors will fix her,’” he said. “With Lyme, you need support from everyone, I didn’t understand that, now I appreciate it a lot more.”
“People look at you and think you’re totally fine…but inside you’re suffocating,” he said. “I don’t think I would’ve been able to get through this without my sister, I really just look up to her, because everything that she’s gone though has been so much worse than everything I’ve gone through.’
Michelle McKeon began seeing Lyme specialist Dr. Richard Horowitz in Hyde Park, New York. In December, McKeon learned that she has biofilms—an organized structure around the microbes which prevents antibiotics from working effectively. She also has a co-infection called Bartonella, which further complicates her condition.
“We’re kind of at a crossroads of how much more can her body take of the antibiotics,” said her mother, Cheryl.
Treatment ‘of last resort’
Just over a month ago, McKeon learned about a clinic in Germany that performs special hyperthermia procedures which cannot be found in the U.S.
“This is what people do as their last resort,” she said. The cost of transportation, treatment, and post-treatment adds up to roughly $25,000.
Buttery and LaForge decided to create a website, sharing Michelle’s account of her symptoms in the hopes of raising funds as well as awareness.
“It’s been an outpouring,” said Cheryl McKeon. “With the battles and insurance companies, they have paid for things, you try not to be bitter…This kind of restores your faith.”
Global support network emerges
Donations have ranged from $10 to $5,000, with one unexpected payment coming from Lindawaty Halim, a woman LaForge met during a trip to Peru several years ago.
Halim’s father died at a time when her family did not have the funds for treatment. “She had the opportunity to help at this point,” said Laforge. “She said that this is really what money should be for.”
With about $20,000 raised, McKeon left on Feb. 18 for the Klinik St. George in Bad Aibling. Over ten days, she prepared her body for two hyperthermia sessions, in which her body was heated to 107 degrees while her head is kept cool. The hope is that the toxins will not survive the high temperatures.
McKeon, now back in the states after the hyperthermia treatments, said she’s feeling a bit better. Major changes in symptoms aren’t likely to be felt for about two months, she added.
The upcoming six months include a regimented post-treatment schedule of herbal medicines taken orally or injected. Other Lyme patients claim to have felt up to 70 percent better after four months of post-treatment and she remains optimistic she’ll make progress. McKeon’s brother too hopes to go to Germany one day as well, once he can afford the cost.
“I don’t really know how I’m going to be feeling or what I’m going to be able to do. I just want to move on with my life,” said McKeon.
[Correction: Dr. Richard Horowitz was mistakenly identified as Dr. Robert Horowitz in an earlier version of this article.]