Lyme recovery, September, 2014

It is week 10 after my Germany Lyme treatment. I am finally starting to feel better and having less pain on a few days per week. My strength has improved and I am sleeping better overall. I am still receiving weekly IV's along with other treatments and taking multiple supplements a day. I have been noticing hormonal changes and I know my thyroid continues to be an issue. I will soon need to battle those. I will be getting my hormones checked soon.  Recent bloodwork revealed higher than normal numbers for my liver. I will be making an appointment with my liver doctor real soon. I am continuing a gluten free diet but have not been successful with a dairy free diet. I personally do not think I have an issue with dairy. My stomach has been much better with the elimination of coffee. Oh how I miss my morning coffee though!!!! I am back to work full time. This has been very difficult for me since the summer was full of rest and more rest. I am back working with special needs children in schools. I am an occupational therapist and I love my job. Unfortunately, I am extremely busy and it is a very physically demanding job. I hope my progress continues so I can be the best I can be for my students, my family and myself! Oh, and a huge positive is that I rode my horse yesterday for the first time in a YEAR! I miss it so much. It was a good day.

Lyme Recovery, August 2014

I apologize for not blogging earlier. I have been struggling with the frustration of doing and taking everything I am suppose to and not seeing the results as quickly as I had hoped. There have been several days in this recovery that I have felt worse than I have in a long time. People continue to ask how I am feeling and I am unable to share that I am better. That leaves me feeling uncomfortable as many people probably question why I went to Germany for treatment that doesn't work. Yes, I have explained a million times that it takes time to detox, get rid of all the bad stuff and get my body working again. But day after day, I admit that I start to question if it really worked. I added coffee enemas more regularly and foot detoxes(2x per week) to my treatments. It has been a roller coaster emotionally. The tears still come and the frustration of the continued pain.  I have to say that in the last week I have had a couple of good days. Not pain free by no means but better. I hold on to those days with a glimmer of hope. I am trying not to keep track of how many days/weeks it has been since my treatment but it is difficult as I am returning to work soon and the pressure to be better will be increased. I appreciate the comments from other Lyme warriors and continued support from my family and friends. I will continue this fight and hope to help others along the way!

Lyme recovery, post Germany

I have not been well the last few days. Flu like symptoms continue to come and go. The pain is severe in my shoulders, back, legs and arms the last 3 days. I am still having trouble sleeping. Laying down, standing, walking all seem uncomfortable. I am taking all my supplements including herbs and liver tea cleanse on a daily basis. I also sauna and do detox baths daily.  I added vitamin B12 injections as well. I have been resting and doing minimal activities so I don't quite understand why I am in so much pain and feel so tired. I guess my body is still fighting the toxins that have been released and are not exiting my body. I am trying to be patient but it is hard some days.

Post Germany update-2

It's Sunday, I have been home about 2 weeks now. Time sure is flying by. Not much new to update except the Herx reactions continue to drag me down. In addition to the increase in symptoms, I am not sleeping well yet.  I ordered a month of my supplements ($400 worth) and hope to receive them soon although I am not looking forward to taking all those pills throughout the day.  I will be starting my IV' s soon as my doctor has been on vacation. I am trying to stay positive and resting a lot. I am so fortunate to have a supportive husband to help with everything around the house(he does the grocery shopping)!

Post Germany update

I am home. I am so excited to see my family and friends. I am so excited to sleep in my own bed again with my husband. It has been a rough 3-4 days. I am having trouble sleeping in addition to an increase in symptoms. I have been having multiple sweats/chills episodes throughout the day and night. Flu like symptoms of severe headache and body aches, nausea, and uncontrolled pain in my entire body. This is most likely what they call a Herxheimer reaction. This is a reaction to the endotoxins released by the death of bacteria(Lyme spirochetes).  My body is reacting to not only the spirochetes dying and releasing toxins but also getting rid of the dead spirochetes.  I have some difficulty with detox so this may last awhile and I will feel worse before I get better.  It is discouraging but I am trying to stay positive. There are times when I "lose it" and break down from all the stress of the last 2 weeks and now dealing with this.  For some odd reason, I believed I may be one of the lucky ones that would feel better immediately after treatment. I have to be patient. It is really hard to do after all these years but I am trying.

Last day in Germany

Today is our last full day in Germany. We met with Dr. Kroiss today to go over my plan for when I get home. The hospital recommends 3 different I.V.'s per week and 26 vitamins and supplements for 3-6 months post hyperthermia. Many of the vitamins are basic including vitamin B complex, C, D, selenium, zinc and magnesium.  Other less common supplements include SAMe, Co enzyme Q10, L-Glutamine, and alpha-lipoic acid.  The doctor explained that some of the supplements are more important than others. For example, for those that have extensive neurological difficulties and brain damage from the Lyme, he recommends supplements that target brain repair and detox.

There have been several couples from Australia admitted for Lyme treatment the last few days.  I guess southern Australia is full of Lyme disease.

I am excited to come home. It has been a long 2 weeks.  Aside from persistent stomach issues, I feel a little better than when I arrived.  My pain is less severe on some days and my headaches are not as constant. This is promising!

Post 2nd full body hyperthermia

My last full body hyperthermia was on Tuesday.  I didn't remember much afterwards as I was more  groggy this time. I didn't even remember the nurse putting in a catheter and moving me to a different room. I remember Chad coming in for a little bit to check on me. My body was warmer after this one.  The day was filled with more I.V.'s and more treatments in the afternoon leaving little time for rest. I feel so tired and my brain is foggy as well. I just wish I could rest.

The conversations I have had with the doctors have helped me understand the treatments better. I am killing off the borrelia(Lyme) and other bad bugs but they have already done damage that I will need to repair.  Often in Lyme disease, there are other problems, such as in my case; thyroid, adrenal gland issues, and hormone issues.  It is important for me to address these when I get home as well as continuing the I.V.'s.

Meeting with Dr. Douwes

Monday, Day 8 of treatment

The last few days my kidneys haven't been able to keep up with the I.V. fluids resulting in edema in my legs and feet. I also feel like I swallowed a balloon.  The doctor suspects some gallbladder and stomach inflammation after the hyperthermia.  My stomach pain has lessened but I continue to be nauseous and do not have an appetite.  Diuretics and thermal bath has been helpful to decrease the edema.  

Today, Chad and I met with Dr. Douwes, head of the St.Georg Klinik. We discussed the clinic's success in helping people with Lyme disease. Throughout the last few years, they have made changes to their Lyme protocol. He expressed that in their experience, pain from Lyme disease is the most treatable symptom. Dr. Douwes stated that people often notice some immediate pain relief when completing the 2 week treatment process.  Sometimes though, it may take awhile if there has been damage to the nerve endings. He noted that following the protocol is an important part of the treatment process.

Tomorrow is my 2nd and final Full Body Hyperthermia treatment.  I am looking forward to getting this over with.

Below is Karin and Chad with Dr. Douwes.

Frost Out Lyme's Fun Run/Walk

My friends have organized a fun run/walk fundraiser for me on Saturday, August 23, 2014 in Mukwonago. Please visit the website: www.frostoutlymes.net for more information. There will be kids activities, music, food and drinks, raffles and a bake sale. It will be a good time and I would appreciate your support!

IV's and medical update

I have been getting various IV's throughout my treatment. Some include Vitamin C, Glutathione, Vit. B6, B1, magnesium, Rocephin, and sodium chloride with Selenase. I had to have my IV needle site changed as the first one wasn't working and hurt a lot. The nurses have trouble with my veins, so the doctor has to do mine. I continue to feel sick in my upper stomach and under my ribs. It hurts to move and lie on my back. I do not have an appetite and am not sleeping too well. The beds are quite hard so my shoulders/hips hurt from lying on my side.  I have cold sores on my lips and nose that are common after the hyperthermia. They have been able to decrease my pain medication which is really great news. I have periods of time with little to no pain! I have no therapies on the weekends, only IV's. Today we hope to visit the Therme bath in town where they have a pool, hot tub, and a sauna.

Full Body Hyperthermia

Preparation for the full body Hyperthermia was more than we expected.  A ECG, lung function test, liver ultrasound and other blood tests were done as preparation.  I was put on a liquid diet 24 hours before the treatment was scheduled to take place.  I also was limited to water and broth up until 12 hours prior to the treatment.  In addition, on the day before, I had a colon flush and several I.V.s.  An enema was given at 5:00am the day of the treatment.  The doctor explained that I would spend 6 hours  in the hyperthermia tent raising my body temperature to 107 degrees F  (41.8 degrees C) for 2 full hours.    

I was taken to the hyperthermia room which was very cold. There were several treatment beds that looked similar to hospital beds with various equipment and large lights above.  The nurse was very nice but a little upset that I didn't take off my toenail polish. She hooked up electrodes to my ear and chest, pulse oxygen clip, a rectal thermometer and plugged in an I.V to my line.  After a few minutes, the nurse said that I would fall asleep.  The next thing I knew, I was lying in the bed looking at the nurse.  She told me everything went very well. The next hour she was checking my blood sugar, oxygen, blood pressure, and temperature.  The nurse put in a urine catheter as well. I was in a lot of pain in my back and I kept telling the nurse how much pain I was in so she went to get me some pain medication.  I was also very droggy from coming out of anesthesia. Chad brought me flowers but I didn't remember!  Below is a picture of me in recovery(with my beautiful flowers).

Various treatments

 Here is a picture of the foot bath detox therapy which I will be getting 3 times a week.  The water started out clean and went dark by the end of the treatment.













Below, I am getting Laser Light Therapy.

This is Magnetic Field Treatment with Oxygen. I will be getting these 3-4 times per week. 

Klinik St. Georg, Bad Aibling Germany

Sure is beautiful here

.

The Klinik is very nice

Travel day/First day of Treatment

Our travel day was a long day.  We left our house at 8:00am Saturday June 14th and arrived in Munich Germany 9:00am Sunday June 15th.  We got a little sleep on the plane before starting a new day.  We arrived very tired with a full day ahead of us. Once we landed, the shuttle picked us up at the airport to take us to St. George Klinik in Bad Aibling Germany.  We walked around town a bit, it sure is beautiful.

We have had a few problems communicating with our friends and family.  The power converter we brought, did not work.  Magic Jack did not work possibly due to the power converter.  WIFI is not available throughout the hospital.  We are making adjustments and learning as we go.  as of right now, face time, and email is the only way to communicate with our friends and family.

Treatment started on Monday with 5 I.V.'s and various therapies(laser, magnetic, ozone, foot detox, and colon).  Karin is very tired and has felt sick most of the day.  She is unable to eat as Hyperthermia is scheduled for tomorrow.

I.V.'s

I have been getting I.V.'s of Vitamin C, Glutathione and Phosphatidylcholine (PC) twice a week since March of this year.  This is part of the protocol I received from the hospital in Germany.  In addition, I take several supplements, Epsom salt baths and also sit it my far infrared sauna at least 5 times per week. The focus has been detoxification and building up my immune system.

I had my last I.V. last night until Germany.  I leave in 2 days. The doctors will put in a PICC line when I get there on Sunday. I am excited for the treatment. I can't wait to get my life back!

My Story

Welcome to my blog.  Blogging is new to me so please be patient.  The purpose of this blog is to share my Lyme treatment experience in Bad Aibling, Germany.  The following is a brief history of my illness.

I have chronic Lyme disease as well as other common co-infections that are transmitted by ticks as well.  I have Bartonella, Babesia, and Mycoplasma. These other infections on top of the Lyme, make my symptoms and treatment much more complicated.  My symptoms started about 4 years ago with some pain in my hands, feet and jaw.  I remember having pain in my feet when getting up in the morning and walking from my bed.  Slowly, muscle weakness and fatigue started along with tingling in my face and other muscles.  I had trouble holding my arms up to put on make up and curling my hair.  Stabbing joint pain became more severe and spread up my arms and legs. I began to have periods of shortness of breath and heart palpitations.  A few years later, I lost half of my vision in my left eye, a torn retina.  I had to lie face down for 1 1/2 weeks for the recovery after eye surgery.  Of course, the eye doctor said there was no correlation with Lyme disease.  My doctor however, thought differently.  Lyme is known to attack connective tissue in the body and vision issues are noted in the literature.

A year and a half of antibiotics did not get rid of the infection, it only destroyed my stomach.  I have tried multiple treatments over the years including herbs, homeopathic supplements, rife/coiling, bee venom and photon therapy. I am on a gluten and dairy free diet, with no sugar and minimal carbs. I juice daily. I also purchased a infra red sauna to help with detox.  I was told that if your body has difficulty with detox, you will become more sick with treatments and it will take longer to become well.

This last year has been the worst.  On top of the stabbing pain which moves from joint to joint, the dull ache in my body does not go away.  My nights are filled with tossing and turning from the pain and night sweats/chills.  With little sleep, I am exhausted and depressed. My muscles and tendons hurt to the point of spasming.  The headaches are so severe that I have hypersensitivity to light and noises and it hurts to move my head.  The pain has moved more proximal into my shoulders, hips, neck and back.  It hurts to walk, sit, stand up, and just move.  I have not exercised in.....2 or 3 years.  I have lost muscle mass and strength.  I have a few good days in a week but most of the time the pain never goes away.  It takes all my strength to get up every morning.  Many days, I hope the day goes fast so I can go back to bed again. It has become very difficult at times to go on.  My husband has been amazing. He will get up in the middle of the night to give me a massage. He has been there for me, always.  I don't know what I would have done without him.

I started looking into other treatments about 8 months ago and my good friend told me about a woman who had gone to Germany with her daughter for hyperthermia and was completely cured.  A glimmer of hope had surfaced.  In Germany, they treat Lyme like cancer.  They bring a person's body temperature up to 107 degrees for 6 hours.  This high temperature kills cancer cells and infections including Lyme disease. I know, it sounds scary but what are my other options? The results other countries are getting with this treatment is staggering.  I have talked to several people that have had great success. I have hope!

This is a lonely disease.  No one can understand what I am going through unless they have experienced it themselves.  What people don't understand is that many Lyme sufferers look absolutely normal, like nothing is wrong. I have had people tell me how good I look but they don't realize how horrible I feel inside.

Follow me on this blog and my experience in Germany to fight chronic Lyme disease and help raise awareness to help others get the treatment they need.  My Germany treatment begins June 15, 2014 and will be completed June 30, 2014.

Sincerely,
Karin Frost