Annegret is a 64-year old married mother of two children. She has raised two children with Lyme disease and became symptomatic herself a few years ago. Her family lived a very active life, enjoying the mountains kayaking, skiing and hiking. Her daughter and son both were diagnosed in their teens. Both were very athletic. Her daughter was a scholarship level volleyball player while her son strived to be a professional skier. Both of their careers were cut short by the diagnoses of late stage Lyme disease. Annegret speaks to the lack of reliable blood testing for Lyme and how she and her husband traveled to Germany to try alternative photon, biophoton and vitamin C IV treatments. She also talks at length about the importance of understanding the detoxification process and how without that antibiotic treatments can be excessively difficult on the patient. Like many caregivers, Annegret, talks about how hard it is to find common ground among some friends that have a preconceived notion about what it is like living with two children suffering from late stage Lyme disease.
My name's Annegret. I... grew up in Germany, moved to the US, and I married, I have two young adult children, uh, there are three people in our family who deal with Lyme disease and I've been a caretaker of the children when they were sick for about 10 years. It started about 12 to 14 years ago, and when I was about 50 I became symptomatic too. Life before Lyme was exciting, we were able to take advantage of the mountains, the ocean, we were kayaking, we were skiing, we were hiking, we were camping, white water rafting. Our teenagers were athletes, one was a ski racer, the other one was a volleyball player. It's heartbreaking to watch when your kids cannot fulfill their dreams. No more ski racing, no more volleyball, that changed very rapidly when the kids got symptomatic. They basically got tired. They couldn't make it through a day without a nap. That was the first diagnosis, chronic fatigue, our children, they struggled with different symptoms, some of them c-came and they went again, so it wasn't just the-the fatigue, there was aches and pains in every joint, in every finger, uh, there was aches and pain in-in your jaw, headaches, nausea, there was noise sensitivity, there was anxiety, and [CUTS OFF]. So a fluctuation of different symptoms and you constantly had to adjust to it and there was one time when my daughter came home from a sleepover and she couldn't make it up the stairs to her bedroom anymore and she just sat there and said, mom, there is something really wrong with me. And that was the moment where we realized we need to dig deeper.
We were aware of Lyme disease coming from Germany, there is a lot more awareness in Europe about ticks. We didn't know that it existed here, in our backyard and open space. So we were clueless, we went to about three or four doctors and they were all clueless. All the lab results were normal, and... they didn't know where to go with it. They said we are helpless, we don't know what this could be, why don't you see a therapist? And I'm a psychologist so there's nothing wrong with seeing a therapist, great, so we scheduled family therapy and before we actually entered that we realized there is a really huge physical component and we decided to focus more on that. So we spent about five years, almost every night, reading research. So we had access to the best healthcare in the world, not only here in the US but also in Europe and we took the kids there too, finally actually, a clinician pointed us into the direction of Lyme disease. We found a Lyme literate doctor, an MD, who is also working with naturopathic doctors and their success rate was very high in dealing with patients, especially young patients, who have Lyme disease and have the symptoms of chronic fatigue. We did oral antibiotics to start out with, we were more than willing to go to IV antibiotics. Our daughter ended up in a wheelchair. Uh, the antibiotics made her Herx that badly that she couldn't even walk anymore. Our son's symptoms increased severely also and we said stop. Uh, let's reassess what's going on here, so what we learned on the way is that there is actually a component where if you cannot detox, you cannot get rid of toxins. So if you start killing with antibiotics you increase your toxic load and then your symptoms will increase. Your Herx will get worse and it's like a bathtub flowing over. Uh, you need to stop and you need to find a plug so you can drain.
Detoxification is-is complex, there are different levels. One of the levels is that you need a binder, something that binds the toxins. And that could be something simple as charcoal. Once you figure out the binding you need to support your or-organs. Your liver, your gallbladder, your spine, your colon, all of that is part of the detoxification process so you can get rid of biotoxins that build up, in-in your body. It was a lot of trial and error but we worked with people who had been successful doing that so slowly but surely the kids got better. The [CUTS OFF]
One of our goals was to have some quality of life, some fun in this, my daughter used to say we are falling off the face of the earth. It took me a while to really understand what she meant, falling off the face of the earth, it meant that her presence on the earth was shrinking. That's what it felt like. S-watching the kids disappear from the world, I think that was the most difficult for us to see. For our daughter, we took her out of the public high school which we really liked and put her in a private high school where the teachers were more flexible, but at that point the short term memory effects for our daughter were that critical that she... couldn't remember what she had for breakfast in the morning. Our son is-is older than our daughter and he had weird symptoms off and on. Stomach aches, every Fall he got a flu that lasted for about three weeks and then he went back to school and-and struggled in school a little bit because he had lost three weeks and felt crummy and then he felt fine again, and next fall, same pattern again, so he went to a-a high school in-in the mountains and became a-a professional ski racer, and he also finished high school. With the help of the physical activity he could manage his symptoms, he had a focus, he was thriving and we thought he was doing well. Once he had finished high school and went to college... he went downhill a bit and due to a knee injury during a ski race he had to have surgery and after the surgery the Lyme symptoms flared up like crazy. We got a test done from a major clinic in... Minnesota and that was not CDC positive. There are different layers of-of testing, there were some positive strains but we didn't get the full picture, a clear, positive result.
Again we went with a clinical diagnosis so he came home and he had to be treated for two years until he could go back to school. We started out with a antibiotic approach and observed the same downfall that our daughter had so we stopped that very quickly and focused on the binding and detoxing of-of biotoxins and then we added the... the antibiotics for a while and then we got rid of the antibiotics because his, that, couldn't tolerate it, and went to an herbal program. Our daughter got better on that herbal program and in the meantime while the kids were getting their treatments and getting slowly better, we were still doing research, trying to figure out, is there a better approach anywhere in the world, we also found out that there was a clinic in Germany that had very good success with alternative photon, biophoton treatment that included some ozone treatment, vitamin C, IV treatment, my husband always insisted on this do no harm approach. And the biophotons were a do no harm approach. It's different frequencies of hertz, frequencies of LED lights, there is actually a lot of research in Russia and that clinic took that LED photon approach and combined it with barelia and then later bartonella and babesia, the other coinfections, and you get the, the light on certain [medians?] of your body or acupressure, acupuncture points.
After that photon treatment you do IV ozone and IV vitamin C, ozone is O3, so you try to oxygenize your blood. So bacteria and viruses can get killed. It's one of the-the, from my perspective, one of the best treatment approaches together with the vitamin C infusions and the biophotons, both of the kids got better quite a bit. When you've been sick for years you take very little things as improvement, being able to sleep at night, that was one of the biggest challenges that you can sleep at night. Being able to follow a conversation or watch TV and understand the story, that was big. Walking around the block or playing with a dog, uh, little steps, and we made a big deal out of those little steps because we wanted to have something positive, we had fun pets, we only allowed people in the house were uplifting. We couldn't find the common ground with some-some friends. They had a preconceived notion, what this is, and there was no way to communicate around it and we also didn't have the energy to convince anybody. So other friends stepped up, there were people who were just amazing and they were amazing for 10 years so I'm so thankful that we have these people in our lives still.
In the course of 15 years what surprises me, and I think it's just appalling, the quality of the testing has not improved. We still don't have a reliable test. There's something wrong with that picture. So what happened in the last 15 years that a lot of other countries picked up the pieces, Germany one of them, for example, they have very realistic descriptions of what Lyme disease looks like with the 70 or 80 different kinds of symptoms you can have. And how difficult it is to test and how difficult it is to treat. What the CDC allocates in terms of money, uh, has a huge impact on-on the research, for example, Zika, when that happened a couple summers ago, there were immediately millions of dollars available. For Lyme, that still hasn't happened. Lyme disease isn't an invisible disease, you can tell by looking at someone that this person is severely ill, which makes it difficult to show some compassion, and empathy. It's h-it's really hard to relate especially for young people that they feel terrible, we need to learn more about this illness and we need to figure out a better way to test and to treat. More focus on the detox side, which actually has a genetic component, and then more openness towards different kinds of antiviral and antibacterial treatment approaches.
There are a lot of studies going on right now about the benefits of a medical plant called marijuana. I'm talking about oils, I'm talking about eating the plant, and there are some variations on the marijuana plant that are actually antibacterial, antifungal, and antiviral, and having more data on that would be tremendously helpful. So after almost 15 years I can see the light at the end of the tunnel. It's a balancing act and I know the kids can balance, my husband and I, we will start to travel again, we trust that they will be well, that they will be happy, they've learned a lot on this journey so we'll be there to support them but they are taking off on their own and they've got the wings they need to do that.
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