Lyme Disease...Are You Kidding Me?

I shared in my last post that autonomic response testing ended up being helpful to me in other ways than what I had originally anticipated. I did the autonomic response testing to determine food sensitivities, guide my food choices and narrow down the list of supplements I was taking.

I ended up finding out I had lyme disease.

During the autonomic response testing, I asked the doctor to test me for parasites or other viruses as it is common for people that have been through chemotherapy to pick up things like this when their immune system is compromised. In addition, he decided to include babesia and bartonella which are the most common co-infections with lyme disease. To both of our surprises, I had them. He tested again just to be sure...same result as the first time.

My immediate reaction was "how is this possible, I have no symptoms!"

I do not recall being bit by a tick, I have no joint pain or stiffness, no neurologic issues. Out of this entire list of symptoms, I have a few but they could apply to anyone. Who doesn't feel like they are loosing their mind every once in a while, especially after everything I have been through? That is actually listed as a symptom. 

At first, because I am less inclined to trust anything that is not definitive (for example, a blood test), I did not believe it. I debated whether I wanted to investigate this any further. On one hand, I felt the need to confirm the diagnosis and treat it, after all, what was the point in spending time and money on  this testing if I was not going to do anything about it? On the other hand, I had just finished 8 rounds of chemotherapy, 2 surgeries, radiation, immunotherapies in Germany and I didn't want to deal with it. It would have been easier to ignore the test or discount the doctor as some "quack" but if I did that and developed symptoms later on or my cancer recurred, I would never forgive myself. 

Instead of taking the easy way out, I called Igenex, a lab based in California that is a leader in lyme disease testing. I asked them to send me a test kit so I could take it to my doctor, get a blood sample, send it in and figure out what the hell was going on in my body. 

Autonomic Response Testing

Autonomic response testing, also known as "muscle testing" was something I had heard of as an alternative to the typical allergy tests that family doctors offer. As many people know, when you go to a doctor complaining about itchy watery eyes, a runny nose and sneezing, they usually tell you it is caused by allergies, recommend you take Claritin or another antihistamine and away you go.

If you want to get an idea of what is causing the allergic reaction, a test can be done where they prick the skin on your arm, and place a drop of the possible allergen to see if there is a reaction. This test can determine if you are allergic to molds, pollen, ragweed, hair from certain animals etc. but it cannot determine whether you have any food allergies or sensitivities - this is where the Naturopath can help.

I was interested in doing autonomic response testing to help guide my food choices. During the muscle testing, I held whatever food it was I wanted to test in one hand and using the other hand, the Naturopath tried to pull my fingers apart. The idea behind this is that if it is something you are sensitive to, your muscle response is weaker and you are not able to resist (ex. your fingers are pulled apart easily). If it is something you do not react to, your muscle response is strong and you are able to resist. This test can be done using the fingers or outstretched arm. A better explanation of how exactly autonomic response testing works can be found here: http://www.drweil.com/health-wellness/balanced-living/wellness-therapies/applied-kinesiology/

Now I know what you're thinking...this is a bunch of bologna! That is what I originally thought as well but it's funny how a major life event like cancer can make you so much more open to different ways of thinking. This has been true for me with regards to alternative medicine - acupuncture, herbal teas and autonomic response testing can be front line treatments in other countries but in North America we are so closed minded and convinced that Western medicine is the only answer.

I would not trust autonomic response testing alone to diagnose any serious conditions but it is a relatively inexpensive, non invasive way to get information about foods or allergens that you are sensitive to and could be causing inflammation in the body. If there is one thing I have learned from all my research, it is that inflammation is the devil and can lead to a host of diseases including cancer.

Autonomic response testing may not be for everyone but it was just another piece of the puzzle that provided me with some very important answers. More to come on that in a later post.

HER2 Status

HER2 is a gene that can influence how a breast cancer behaves and how it might respond to a specific treatment. My biopsy was tested at my local hospital using the IHC test (ImmunoHistoChemistry) and they found that it was HER2 equivocal meaning that a positive or negative result could not be determined. According to Breastcancer.org, the results of this test can be classified as follows:

0 (negative)
1+ (also negative)
2+ (borderline)
3+ (positive — HER2 protein overexpression)

I was 1+ so for confirmation, the sample was then sent out to another hospital for the FISH test (Fluorescence In Situ Hybridization) to be performed as it is a more definitive test where the results can only be positive or negative. The results were negative so it was determined that I would not need Herceptin which is an antibody that targets the HER2 receptor.

The problem with this approach is that if a patient's results are 1+ or 2+, it means their cancer did have some form of HER2 overexpression but the hospital's guidelines say that is not enough to warrant getting Herceptin. My concern like many others is that if there are even just a few cells that could respond to Herceptin, why wouldn't you treat them? It is also possible that depending on where cells are located, the tissue from one area of a breast cancer can test HER2-negative and tissue from a different area can test HER2-positive.

This article goes along the same line of thinking and clearly states that "breast cancer tumors that are human epidermal growth factor receptor 2 (HER2)-negative can spontaneously flip, with populations of circulating HER2-positive cells, according to a new study." It goes on to say that "the ability of these two populations of tumor cells to convert back and forth highlights the importance of treating tumors with drugs that would simultaneously target both populations."

The good thing is that even though I did not qualify for Herceptin at home, the Hallwang clinic was able to target any HER2 positive cells with the use of a peptide vaccine. It is a subcutaneous injection that is given in the abdomen for 5 days then requires a boost every few months. For anyone that is reading this and had a result of 1+ or 2+ on the IHC test, it might be something worth looking into or asking your doctor about. There is no harm in questioning the "standard of care"!

Anti PD-1 Immunotherapy

PD-1 seems to be in the news a lot lately as a target for immunotherapy. Anti PD-1 therapies known as Pembrolizumab or Keytruda are able to block the programmed cell death protein that keeps the immune system from going after cancer cells. Before visiting the Hallwang clinic, they sent my tumor tissue to a lab and it was tested for EpCAM, MUC-1, PD-1 and several other tumor associated antigens that can be targeted with different therapies that are not available in Canada right now. Eventually, I believe these tests will be done at diagnosis the same way ER, PR and HER2 are tested today but it will take time.

Right now Keytruda is approved by the FDA (Food and Drug Administration) for malignant melanoma and non-small-cell lung cancer but is just starting to be used in clinical trials for breast cancer. Luckily those like me that don't qualify for the clinical trials or have 10 years to wait around for it to be approved as a first line therapy for breast cancer, have other options. At the Hallwang clinic they are able to use Keytruda to treat women that are PD-1 positive. Unfortunately it is costly but worth it in my opinion given that breast cancers positive for PD-1 carry a worse prognosis.

In many cancers, PD-1 is over expressed on tumor cells and tumor-infiltrating immune cells. When these join together, they form a biochemical "shield" protecting tumor cells from being destroyed by the immune system. Tumors can co-opt PD-1 to their own advantage to fly below the radar of the immune system. By using a blocking agent against PD-1, we can interrupt that shield protecting the tumor from immune destruction.

If you have been recently diagnosed, you may want to ask your doctor about whether they can test for PD-1. It has been suggested that anti PD-1 immunotherapies can be especially effective in triple negative breast cancer because ER-negative breast cancers typically have a higher density of tumor infiltrating lymphocytes than their ER-positive counterparts. TNBCs also have a higher mutational load compared with their ER-positive counterparts, and have been proposed as a mechanism for increased immunogenicity.

Hyperthermia

While in Germany, I tried whole body hyperthermia. Hyperthermia is a cancer treatment where the whole body is heated to a high enough temperature that it can damage or kill cancer cells. The maximum temperature used is dependent on the clinic - at Hallwang it was 40 degrees celsius or 104 degrees fahrenheit. From what I understand, other clinics might go to 43 degrees celsius but a sedative is used so the patient is more or less asleep for the procedure. At Hallwang, you are wide awake for the whole thing which scared the crap out of me at first.

To start, you sit in a hot bath to gradually bring up your temperature. Then, once it is high enough, you move into a tent with heat lamps that reminded me of an incubator. Thank god your head pops out the top so it is not affected by the heat. The nurse stayed in the room the whole time, monitoring my heat rate and blood pressure every 15 minutes or so. They also give you fluids to replace the massive amounts that you are losing by sweating profusely.

After spending 45 minutes to an hour in the incubator, the sides are folded on top of you to make a sort of body bag which you stay wrapped in for another hour. Now that I am typing this, the whole process sounds like some sort of cruel and unusual torture but really the worst part of it was my anxiety over needing to pee after all of these fluids had been pumped into me. Luckily I was able to hold it but the nurse did offer to put a diaper on me if needed, haha.

Unfortunately whole body hyperthermia is not available in Canada. Some Naturopaths or alternative medicine clinics might offer local hyperthermia which is done with a machine that treats a specific area. This can be effective on a tumor but if you are trying to treat circulating tumor cells like I am, whole body hyperthermia is the only option. I found that a lot of people at the clinic had not tried it but it is something I would definitely recommend. Call me weird but I actually enjoyed it...maybe not the treatment itself but the feeling you have after is unreal, like you have just sweat out every single toxin in your body.

Many people go to clinics in Germany for this treatment alone or it can be even more effective when combined with other therapies. This video gives a good overview if you are interested: https://www.youtube.com/watch?v=qGzXCS-UbVo

Hallwang

The time I spent at Hallwang tested me both physically and mentally. First of all, it is not an easy place to get to from Canada. A direct flight will take you into Frankfurt or a stop-over will get you to Stuttgart which is a bit closer. The location of Hallwang is beautiful...in the black forest, surrounded by big trees, nature and a tiny town. A 10 minute walk will take you to to a 2.5 km barefoot trail through forest and meadow which is truly spectacular. Unfortunately there wasn't much time for hiking or day trips a) because some of the treatments made me feel very ill and b) you are at the clinic every day for at least 3-4 hours.

We stayed in a town called Freudenstadt which is about 12 minutes away by car. It seemed as though most patients stayed at the clinic, however, that is much more expensive. Although the food is very good at Hallwang, I also liked the option of going out to different restaurants for dinner every night. This meant we had to rent a car but it was relatively cheap and allowed some flexibility.

The first day consisted of a quick tour, physical exam with one of the Oncologists, a blood draw that included 20 vials, and some infusions for liver and kidney support, antioxidents and vitamin C. It doesn't take long to settle into the regular routine which for me included showing up around 9am, having blood drawn, getting a concoction of infusions to support my immune system and then either an immunotherapy, hyperthermia or ozone therapy in the afternoon.

They are very flexible about what time you start and what treatments you have. On the first day I expected to receive a schedule showing what I would be doing for the duration of my stay but I came to learn that there are no set schedules at Hallwang. I like a plan so I ended up making my own little calendar to keep track of everything.  This also ensured that I was able to fit everything in as some treatments like hyperthermia are only available on certain days.

One thing I quickly noticed is that the staff at Hallwang are some of the most caring people I have met. There was no rushing you out of the room because they have other patients to see, all of my questions were welcome and the Oncologists provided thoughtful answers, when I called with a problem I was not re-routed to a call centre but rather a nurse answered right away. It also does not have a hospital-like feel. To be honest, I expected to see a lot of really sick people who have run out of options in their home country walking around in hospital gowns. It was not like that at all! All of the patients were so open and willing to share their stories about how thankful they were to have found such an amazing place that gives hope to so many people. I am certainly thankful I found it!

Harnessing the Immune System to Fight Cancer

An interesting read!

http://www.nytimes.com/2016/07/31/health/harnessing-the-immune-system-to-fight-cancer.html