You have probably guessed that it is Lyme disease (Borrelia burgdorferi), and co-infections I have, and wrote about in the previous post.
Lyme is spread primarily through the bite of a tic, and dears, mice, birds, and other small animals are hosts for the tics. Some researchers believe that some biting insects such as mosquitoes, fleas, biting flies, and lice may also transmit Lyme. And, that it can also be sexually transmitted, transmitted by a blood transfusion, and transmitted from an infected mother to the baby.
It is estimated that 300,000 in the U.S. are diagnosed with Lyme disease each year, but some experts think that Lyme is the most under-reported emerging infection in the country. People can have been infected for years and not even know about it. I think it’s sad that the government doesn’t recognize Lyme as the huge problem that it is. Apparently even President Bush had Lyme in 2010.
According to the film “Under our skin” 8 out of 10 people have Lyme bacteria in their bodies. So in my case, and in many others, the bacteria is in the body already but daily stress (my case), or a stressful event such as a car accident, head injury, divorce or a death in the family, mold at home or at work, can trigger it. Even a bad diet, and not only a fast food kind of diet but also for example a bad vegan or vegetarian diet, can suppress the immune system so that the bacteria can get a grip. In the previous post I wrote about some of the 300 symptoms of Lyme but Lyme doesn’t have to be just pain, it can be a mental state; an altered personality for example, where a person becomes more aggressive.
Untreated Lyme can result in neurological disorders, crippling, arthritis, blindness, deafness, psychiatric or psychological disorders, and in extreme cases death.
This is my story; a two year battle with Lyme disease. Don’t worry I will try to make it as short as possible.
In 2010 I got a tic bite but no rash (ring around the bite) so I did not think much about it. After a stressful move to the U.S. and the first year with a lot of work for my company in Sweden, my back started to hurt. Sometimes it felt as I had a knife between my shoulder blades. I went to the chiropractor and fixed it but the next day it was the same again. This repeated itself many times; it did not hold, and that is a Lyme symptom, which I didn’t know at that time. In fall 2012 the pain in my back increased to the neck and I was very stiff in my back and neck muscles. I started to get blurry vision, brain fog, I felt fatigue, had difficulty concentrating and remembering, and I was slow to speak. I also had tingling throughout my whole body and a pressure over my heart, especially during the nights. This produced many sleepless nights and anxiety attacks. In December 2012 it was time to visit a medical doctor. I explained all the symptoms (I’m not sure she believed me though), she did some blood work and all tests were good. At least she sent me to a neurologist but I had to wait three months for that appointment. One day in December I went to the local emergency room to check my heart because of the pain and pressure I felt and they sent me to the emergency room at the hospital. There they checked me over but they did not find anything.
When it was time to see the neurologist, in March 2013, he sent me to do an MRI, to check if it was MS, but it was not. He also sent me to do some more blood work and now for the first time, after having had symptoms for nearly a year, I hear the word Lyme disease. He gave me Doxycyline 100 mg 2 caps/day for two weeks. He also heard a murmur sound in my heart and was surprised that neither my medical doctor nor the emergency room had heard the murmur. He sent me back to my medical doctor to check it, but she did not hear the murmur this time around. I did an ultrasound of my heart and that was fine too.
After two weeks with Doxycyline my brain and eye issues became much better. However, the pain and stiffness in my muscles and tingling throughout my body were still present. After a new test showed no signs of Lyme, but I was still having symptoms, I knew that two weeks of a normal dose of antibiotics was not enough and the bacteria must still hiding deep down in my tissue. I don’t think there is a test to find out if bacteria is still that deep down as the only real test is to wait to be symptom free.
I felt a little better for a while after taking the antibiotics, and I went to a homeopath and got some medicine. But slowly, more and more symptoms came back again: pain and stiffness in my back and shoulders, aches in my wrists and ankles even carpal tunnel started to set in. I still felt tingling, a pressure over my heart, and tinnitus. Lyme is often one-sided, which was also the case for me, as the right side of my body was the worst. And, the pain is often moving around in the body and there are twitching of muscles.
So in September 2013 I went to a Lyme specialist and took a Lyme tests and it showed Lyme was still present. I started with Doxyclycline 100 mg again, but now 2 caps twice a day with food but not with dairy products (Ghee was okay) or mineral supplements. After a while my hands and face started to get red and burned so I had to changed to:
Clarithromycin Er 500 mg – 1 tablet twice a day
Cefuroxime Axetil 500 mg – 1 tablet twice a day
I was also prescribed 500 mg of Metronidazole, 1 tablet twice a day with food for 2 weeks on and 2 weeks off. All to get the bacteria out from my tissue.
Weeks became months; some weeks I felt quite good and some weeks I felt really bad, especially the weeks on Metronidazole, which is common according to my doctor. The tingling and heart pain were still there. I got 500 mg Ciprofloxacin Hcl– 1 tablet twice a day for the heart issue but it did not do any good.
During these months with all these antibiotics I did not have any problems at all with my stomach because I took a very good probiotic: Ultimate Flora – Critical Care – 50 billion, 1 cap 2 x daily (sometimes more).
I also took Cholestyramine powder twice a day to get rid of toxins left by the bacteria (spirochetes). Which I took two hours after and before meals and supplements etc.
I went to a Naturopathic doctor to get help with my supplements: Vitamin B and D3, Magnesium Taurate, Ubiquinol.
I had some strange Lyme symptoms like the skin on top of my hands became very wrinkly but got back to normal later. Aches in the carpal tunnel area (between thumb and forefinger) and joint pain in those same fingers. I had a sore Achilles tendon when massaging that area. I also heard a story about a man with Lyme and his first symptom was that he felt drunk off of just a single glass of wine, and I agree, there is a big change in alcohol tolerance.
Sleep: I had to sleep minimum 8 hours each night, 9 hours or more is even better.
Stress: I tried to eliminate stress even if the disease is stressful itself. The problem is that Lyme and stress mess with the thyroid glands and the adrenal glands so I needed to take supplements before coming down in stress levels. Huge difference!
Food: I continued to eat real food like meat, seafood, eggs, small amounts of plain yogurt and cheese, butter and coconut oil, a lot of vegetables, some berries, and fruits once in a while. Compare to others with Lyme I think I have had a high level of energy during these years and I think I can thank real food for that.
Water: My goal has been 2 Liters a day of filtered tap water. Very important to drink a lot of water!
Exercise: Walks were the best exercise for me. I did stretch and strengthening training once in a while but sometimes it was too hard on my body.
Epsom salt baths: It is good to take Epsom salt bath in as hot water as possible; to sweat afterwards and to get magnesium. But, I could not tolerate hot water because my stiff back became even stiffer.
Mold: A huge problem for many with Lyme. Some doctors say that if you have Lyme and mold around, you will never get better before eliminating the mold.
EMF Electro Magnetic Fields: I started to turn off wireless routers etc. during the nights; eliminated as much EMF as possible, especially in the sleeping area. Other things you can do are to get rid of wireless baby monitors, telephones etc., fluorescent lights and dimmer switches.
Heavy Metal Detox: Before I knew it was Lyme, I did a hair analysis test that showed very low levels of toxins (thanks to real food again). The only toxin I had was a small amount of mercury probably from the silver fillings in my teeth, which I took away several years ago, and from eating fish. I have heard that some people use activated charcoal to bind toxins.
Lymphatic drainage massage/Swedish massage: Massage is very good for people with Lyme and especially lymphatic drainage massage. It helped me a lot!
Food allergies: Lyme bacteria messes with the gut so its not uncommon to get food allergies like non-celiac gluten sensitivity, especially amongst children.
My blog: I think this blog has helped me to keep me going. Thank you for reading it!
When I had taken antibiotics for seven months (it’s terrible!) my body started to feel tired and my health did not improve any longer, rather the opposite. So my Lyme specialist and I decided for me to stop with the antibiotics and do a herbal protocol instead. Some people response better to the herbs according to her.
This was my herbal protocol:
- Cat’s Claw (Pure Encapsulations) – start with 1 cap 2 x daily. Work it up to 1 cap 4 x daily over 2-3 weeks.
- Andrographis (Planetary Herbals) – start with 1 cap 2 x daily. Work it up to 1 cap 4 x daily.
- Japanese Knotweed/Resveratrol (Gaia Herbs) – start with 1 cap 4 x daily. Work it up to 2 caps 4 x daily.
- Sarsaparilla (Nature’s Way) – start with 1 cap 2 x daily. Work it up to 2 caps 2 x daily.
I also had Grapefruit Seed Extract at home but did not take it because I was afraid it would be too much.
I also came across another Lyme protocol, given to me by a Naturopathic doctor and according to her it is very successful, but it was when I started to feel so much better so I did not go for it the whole way. It consisted of HCL Betaine Hydrochloride 550 mg to work slowly up to 12 caps HCL each day (3 in am and pm on empty stomach; 2 with lunch, 2 with dinner and 2 mid-day). You can read more about it here.
By this time, early spring 2014, I was quite feed up with all the pills and never feeling good. I even started to doubt that I was ever going to get well again. I sat down and thought about what to do. I remember that a friend in Sweden had told me about ASEA; an amazing new dietary supplement from the U.S. (actually a native-to-the body replenishment) which she also had recently started taking for her own health problems. Other friends of hers had their own success stories to tell. Several months earlier, when she had told me about this product, I was skeptical and not interested at all. In fact, I never could imagine that I would write what I’m going to write now on this blog. But, after having been sick for over two years, I became more open minded and I started to become more and more interested in trying this dietary supplement. I scoured videos and read as much material as I could and I kept coming across several facts that were really important to me:
- 100% safe
- Native to the body
- No problem to take with medicines or other supplements
Another thing that I learned by watching those videos was that this supplement empowers the body to heal itself by increasing cellular efficiency, cellular function, and cellular communication. Who doesn’t want to heal themselves on a cellular level? I know I did! So, I asked my friend to help me order. I also ordered the fantastic gel for my wrinkles and other skin issues; for the outside of the body.
Fast forward, I’m so grateful for what my friend told me and I’m very excited for the future. I think the Lyme bacteria is gone and what I’m feeling now is the mess the bacteria did to my body, and probably the detox. My central nervous system took quite a hit!
More information about Lyme:
National Capital Lyme Disease Association
Dr. Kinghardt’s treatment of Lyme disease
The New York Times about Lyme disease
The Huffington Post about Lyme disease
Real Housewives of Beverly Hills Star Battles Lyme Disease
Spread the word and save lives!