Wednesday, August 10, 2016

Becoming alchemists

Does anyone know what an alchemist is?  An alchemist comes from alchemy, meaning the art of transforming metals to gold.  We, too, can become alchemists.  But first we must change the language we use.  We must alter the language we use in order to change the brain's association and meaning of information.  Words are very meaningful and can trigger the brain to take well patterned pathways that keep it stuck in a looping mechanism.  Changing our language and our associations will help the brain to move out of these patterns.  This will assist us in moving into a place of condience as we understand that we do have the ability to take control of our health and reclaim our lives.  We can choose to look at our lives from a different perspective.

Here is an exercise to help you learn to modify your language and also change your associations to your personal challenge.  In fact we are going to stop calling it a "challenge" and simply refer to illness by a more neutral word- "it."

With this guideline in mind, please reflect on the following questions:
      1. How has "it" given me a deeper understanding of myself?

      2. Has it lead to a deeper level of compassion for both myself and others?

      3. How has "it" demonstrated to me my own personal strength?

When you have completed the questions, go back and edit the times where you may have mentioned any words that relate to illness in any way.  Using the same familiar vocabulary associated with illness re-enforces old brain patterns and associations that keep the brain looping in the same pattern. Be careful to keep your wording neutral and be aware of language triggers that keep you personally identified with illness.  Please omit words like "my" and avoid any references to symptoms of illness. It will get easier with time, but you have to stick with it.

"The secret of change is to focus all of your energy, not on fighting the old, but on building the new."

Friday, July 8, 2016

The lonely road

Sorry it's been awhile since I've posted a serious  health update. But the truth is things have been chaotic. Up one moment down the next. 

In America we take eating for granted. When we are born our Mom's provide milk to help nourish us, to help us grow, and to help us build strength. Then as we continue to grow up food begins to be associated with socializing. In grade school we bring treats in to celebrate birthdays. No parent ever organizes a vegetable platter to bring in for 2nd graders; instead it's donuts, cakes, and cookies. As we continue to grow up, we organize grabbing dinner with friends or meeting friends at the local snowball stand. Then we go to college, where orientation uses food to entice students to join various clubs and sports and students use food to bond with their dorm mates. When returning home on breaks, students use food and alcohol to reunite old friendships. After college graduation happy hour becomes a common phrase amongst the new working force as a cheaper way to eat and drink. When we move into our first home, neighbors bring over casseroles to welcome you to the neighborhood. When we are sick, friends bring us soup to show us sympathy.

What if you couldn't engage in all of these social events? What if your stomach was paralyzed meaning you suffered from gastroparesis? What if you had to know every ingredient you put into your mouth? I was first diagnosed in February after months of suffering from frequent vomiting, diarrhea, or constipation. Ever since I had meningitis last summer something just wasn't right. I am always nauseous and in stomach pain.

Since going to Paracelsus in Switzerland my symptoms have shifted from vomiting to severe constipation. I have been hospitalized at least 10 times this year alone, many of which were for constipation. When I'm hospitalized they usually have to use an NG tube, soap sud enemas, colonoscopy preps and magnesium citrate. That is in addition to the miralax I take 4 times a day, colace, senna, Linzess, a prescription laxative, and colonics. No these are not good to take  everyday over time but right now I have no other options. Additionally due to all of the inflammation in my stomach I am practically allergic to every thing. I can't eat dairy, gluten, or eggs. I was gluten free before and it was doable but now I'm on a pretty strict diet. A staple item in my diet is soup but it's hard to eat in the summer due to the already existing heat. The other items include bone broth, very cooked veggies, and some animal protein. I was eating salads but learned it is one of the hardest foods on the stomach. 

It's very isolating not being able to partake in social events because they surround food. I don't like to be the person asking the waiter/waitress, 'does this contain gluten?' 'Hold the croutons', 'is the soup of the day a broth or is it creamy?' It gets old and I find it a nuisance when I'm out with friends. Eventually when you've turned down social event after social event your friends stop inviting you out even if it doesn't involve food because they figure you'll turn it down. 

Another tricky piece to this gastroparesis puzzle is my weight. Last summer I was the heaviest I had ever been but then I started drastically dropping weight from September to February. I was very self conscious to how much weight I was losing and just how quickly I was losing it. Numerous friends thought I had an eating disorder and even asked me about it. Truth was I didn't even know what was happening to me. Then in March/April I switched from constant throwing up to being constipated often. Over the past few months the cycle seems to be, that my stomach looks pregnant and bloated. Once again I found myself very self conscious. I have a strict bowel regiment and even then sometimes it's not enough to keep me out of the hospital and not bloated. 
                  February 2016
                      May 2016

Chronic illness is lonely especially when there is no cure at this time. During this whole time I tried to keep a pretty normal social media presence but no one really knew what I was going through. Based on an Instagram post you can't tell what symptoms a person is suffering from. The moral of the story is 'It is easy to make assumptions about situations you know nothing about.'

"People generally see what they look for and hear what they listen for."

Sunday, June 19, 2016

Focus on Happiness

Too often we focus on our illness. When we tend to do that, we make our illness our identity. Our illness doesn't define us. It is important to still find joy every day. Here is a list of 50 things that bring me happiness. 

1. Kisses from my puppy
2. Standing in the sun on a nice warm summer day 
3. After a long day of cleaning and the house is finally strong
4. Hot baths with Epsom salts and essential oils
5. My diffuser
6. First swim of the summer
7. Being called beautiful
8. Hearing your favorite song on the radio and singing 
9.  Receiving a handwritten letter in the mail
10. Sleeping in late
11. Belly laughs
12. Popping bubble wrap
13. A jack Browns burger 
14. Dance parties
15. Watching sunrises 
16. Having a bonfire with s'mores
17. Finding the last t-shirt in your size 
18. Waking up without an alarm
19.  Warm, homemade chocolate chip cookies 
20. Saturday mornings
21. Brunch 
22. Catching up with an old friend
23. Traveling
24. A good cry
25. Pretty leaves in the fall
26. The first snow of the season 
27. Watermelon on a hot day
28. Perfecting a new recipe
29. Getting my haircut
30. Finding a perfect pair of jeans
31. Stargazing
32. Long weekends
33. Leggings
34. A good hair day
35. Finding money in your pocket that you didn't know you had 
36. The abundance of family
37. Taking off your bra as soon as you get home 
38. Getting a manicure
39. Lazy Sundays 
40. Finding something you love on sale
41. The feeling you get after working out 
42.  A long hot shower
43. Clean sheets
44. Advocating for Lyme disease
45. Growing flowers
46. Journaling
47. The smell of saltwater at the beach
48. A long walk on a beautiful day
49. A glass of wine after a long day
50. The realization that this too shall pass

Please feel free to share the things that make you happy too!

"Being happy doesn't mean everything's perfect. It means you've decided to look past the imperfections."

Saturday, June 18, 2016

Motivating songs to help get you through

There were many songs people rely on to help inspire them to get up each and every day to fight. Here are the songs I found most fitting when fighting illness. Feel free to comment suggestions.

1. Fight song by Rachel platten
2. Don't stop believing by Journey
3. Shake it out by Florence and the machines 
4. Brave by Sara bareillis
5. I hope you dance by Lee Ann Womack
6. Learning to fly by Tom Petty
7. Not afraid by Eminem
8. I am invincible by Cassadee Pope
9. Girl on fire by Alicia Keys
10. Keep holding on by Avril Lavigne
11. Roar by Katy Perry
12.  Alive by Sia
13. I hold on by Dierks Bentley
14. A little bit stronger by Sara Evans
15. Stronger by Kelly Clarkson
16. Eye of the tiger by Survivor
17. Pocket full of Sunshine by Natasha Bedingfield
18. I believe I can fly by R. Kelly
19. Keep your head up by Andy Grammer
20. Landslide by Fleetwood Mac

Thursday, May 12, 2016

Lyme disease awareness month

As many of you know it is Lyme disease awareness month. Before my diagnosis Lyme disease I had no idea what I was in for. Since my diagnosis I have been through 4 picc lines, 2 ports, meningitis, gastroparesis, sepsis twice, appendicitis, gallbladder removal, and even ended up in the ICU. I've been hospitalized 7 times since the New Years. My days are filled with doctor appointment after doctor appointment. Lyme disease is no joke. Lyme disease roars it's ugly head in many different ways. For me it's affected my brain, my GI system, my heart, my endocrine system, and the list goes on and on. My point is that Lyme disease doesn't just have one face. The symptom list is endless. FACT: is less than 50% of people get a bull's eye rash.
FACT: children are at the highest risk.
FACT: Lyme disease is on every continent except Antarctica
FACT: there is no known cure for late stage neurological Lyme disease, but remission is possible and what I strive for every day!


Monday, April 11, 2016

The day hell broke loose

You are probably wondering the events that followed Thursday morning.  As I was outside manically pacing, the inn owner asked Mom what was going on.  She was fearful of the neighbors complaining about the noise and about the girl frantically pacing.  Mom didn’t have a clear answer for her.  I freaked out so hard on Mom right before the shuttle came that I told her she was not allowed to come with me.  I was filled with hostility and rage.  I said we needed space and she better not dare come with me. 

Thursday was a busy day for me.  I started with a full body thermography scan.  I have had one in that states before when I was younger but much more was revealed via this scan.  Thermography is an instrument that measures body temperature, with the results of the test displayed on a graph.  A thermal diagnosis assumes that illnesses of internal organs and disturbances of their functions project as temperature patterns on hte skin's surface and are here diagnostically detectable.  Nerve reflexes reach the skin zones which are affected by internal disturbances.  Further important diagnostic references can be had, such as the reactivity of the organism as a whole and each individul measured body location: do we find a normal, a depressed, or elevated reaction above a particular organ.  With this information, early signs of dysfunction can be revealed to the patient prior to them expressing symptoms of disease.  It is a great non-invase way of providing a total body assessment.   I was also not allowed to eat or drink before, take a shower, or even put lotion on.  They wanted the scan to be as accurate as possible.  I kept thinking I was going to do something wrong so I kept re-reading the instructions.  In the end all went well and that was one of the easiest treatments I have had since coming here.  I shouldn't even call it a treatment, more like a diagnostic test.

After the thermography scan I had a mini break to take my meds and drink some broth.  On Wednesday I was told my Dr. R would be going on vacation so I would be receiving a new doctor.  The universe must have been looking out for him because I ran into him in the hallway in tears, literally shaking.  I was shaking from lack of sleep and frustration.  He told me not to worry that he would stay for my doctor appointment with my new doctor so that both of them would be able to tag-team my case.

For over an hour I had two doctors studying my case and coming up with a plan to move forward.  The small gesture of Dr. R staying made me feel like he genuinely care about me and want me to get better.  Dr. R was supposed to have already left.  Good bedside manners go a long way for patients.  The two doctors decided I should have an analysis of the autonomic nervous system, so I wore a heart monitor and didn’t talk while they were running their tests.  My results were a suggestion of how my autonomic nervous system works.  My body did not demonstrate the required balance between tension and physical reaction.  While sitting down relaxed, ideally the body’s relaxation system should be dominant when a person is sitting at rest.  My sympathetic nervous system, which is also referred to as the stress system, was more active at rest than the relaxation.  At rest, sitting down my heart rate was 93, which is too high for a young woman who is fairly active.  The doctor’s came up with a plan together that I felt comfortable with.  I was given tons of injections including the organ cell extract from pigs.  This time it was for my spleen and my liver.  Then I was given injections for my stomach pain.  After my appointment with both doctors, Dr. H told me to come back at the end of the day and she would give me something to relax me.

The doctors also came to the conclusion I was too toxic, so they scheduled me for a detox IV right after our appointment.  The detox IV was filled with alkaline basic solution, Vitamin C, homeopathic goldenrod complex (supports the kidneys), Acetycystein (detoxification of metals and other toxins, liver protection), B- vitamins (important protection of the blood and nerve cells of metabolic products and toxins), Homeopathic remedy (for the thyroid and generable metabolic activation), Homeopathic zinc-antioxidant (for detoxication and supports the immune system), Homeopathic complex of mandrake and meadow safran (activates intracellular enzymes, cellular detox and protection of the cells), Homeopathic dandelion complex )supports the liver), Homeopathic ovarian complex (supports the female metabolism), Magnesium (antioxidant, detoxification of metals, relaxation of muscles, vessels, urinary tract and gallbladder), Homeopathic myosotis complex (supports the lymph transport and the connective tissue), and last but not least Homeopathic liver complex (supports the liver metabolism).  While receiving this IV through my port, I received an oxygen IV through my arm at the same time for 14 minutes, which is an improvement from my 10 minutes when I first started.  The time flew by, I even Facetimed my sister during my infusions. 

After I had to sprint down the stairs to the front desk to get into a taxi to take me to the gynecologist in town.  Yippie!  My first outing is to the gynecologist and since Mom didn’t come with me on Thursday I had absolutely no money to pay the taxi driver.  I was panicking.  Thank god I ran into two women who were also staying at my hotel and I swallowed my pride to ask for some money to pay back.  The one woman gave me Swiss franks and the other woman gave me british pounds just in case of emergency.  I was eternally grateful. 

The gynecologist’s office was extremely sophisticated; she even did her own IVs.  The nurse pricked my finger for blood, I thought she was testing me for STDs but she was actually testing my hemoglobin.  I guess I looked that pale that she could tell I was anemic.  While filling out paper work I spilled burning hot soup on my pants, which was quite the episode at the gyno.  Then my name was called to go back to her office.  When I saw the chair I would be sitting on, I was shocked at how sophisticated the gynecologist’s office was including the chair for the exam was super comfy.  The chair moved so she could get the best angle.  Then she performed an internal ultrasound where I could see my uterus, ovaries, and fallopian tubes.  She said I have polycystic ovarian syndrome, I had a cyst on the left ovary and tons of smaller ones on the right ovary.  Then I asked her why I don’t get a regular period and she could see from my ultrasound that I hadn’t gotten a period in awhile.  She said I am not ovulating that I needed progesterone.  She said to take it the last 15 days of my cycle.  That didn’t seem too difficult.  Overall it was a great appointment and I was glad I went.  Since I was in the town and there was a pharmacy right behind where my taxi parked so I sprinted in and got a hot water bottle to lie on my stomach when I need a heating pad.  I must admit I did pick one out with that was a little fancier than the other plain colors. 
Gynecologist''s exam chair- so fancy
I was rushing out of the store just so that the taxi wouldn’t be waiting to long.  She thought it was funny how much I was rushing.  She told me her dream is to drive a taxi in New York City.  There are no ubers here, only in big cities.

When I arrived back at the clinic, I was scheduled for labwork and an X-ray.  I should have asked more questions such as why they were drawing blood again, but it just didn’t dawn on me at the time.

Next I was headed to HRV with Dr. F.  He was investigating why my heart rate was so high and why I am not sleeping.  For the first 30 minutes we focused on my breathing and watching it on the monitor.  We were practicing belly breathing.  He wanted me to wear a heart monitor for 24 hours to monitor my heart rate and to see how I was sleeping.  He told me heart rate was the window into autonomic into the autonomic nervous system.  I learned that the autonomic nervous system controls the immune system, how individual organs function and how they coordinate amongst themselves.  For example, everything may be appearing to be okay but then you learn the organs aren’t communicating amongst themselves.  So I agreed to wear the heart monitor.  He also mentioned that I should have a glass of white wine to help me sleep better tonight.  No doctor has ever prescribed me a glass of wine, now that is my kind of medicine.  The reason why he didn’t say red wine was because of a possible histamine reaction.

Then I headed to the dentist office where I had a dental appointment, but wasn’t quite sure what it was for.  I get there and find out they think I am getting my wisdom teeth pulled that day.  I started panicking I had just received the estimate that morning and had no time to talk it over with my parents.  It seemed very rushed.  Thankfully he said he wouldn’t bill me for not utilizing the time space because there was obviously a communication error.  But the situation had me worked up!

I was done for the day after the dentist except for I had to go back to Dr. H.  I walked over to the next building and literally had the breakdowns of all breakdowns.  I locked myself in the bathroom and just sobbed.  I crumbled, I am a germaphobe and I was lying down on a bathroom floor just sobbing in fetal position. Then I Facetimed my sister for support.  Everything she said resonated with me.  She did a good job of making me laugh and encouraging me to get off the bathroom floor and get to the doctor. 

After my mental breakdown it was finally time to go see Dr. H.  She gave me an injection to sedate me.  Then she gave me three more injections in my stomach for pain and nausea.  Of course nothing was instant.  Lastly she put small acupuncture needles on and in my right ear.  They were magnetic so she gave me this tool to use to twirl the needles when I was home.  She put a small band-aid over it and that was that; she said it could stay in my ear for up to 3 days.  She decided to try this approach because the points she pricked translated to the stomach meridians.  One was for the stomach and the other was for anxiety.  `I really like Dr. H; she listens and truly tries to understand where you are coming from.

I was dreading going home and having to confront Mom.  But it actually wasn’t that bad.  She understood that I am under tremendous stress, so we acted as if nothing had happened.  We walked around town a bit to find wine then decided to eat outside of our bed and breakfast hotel.  Ironically 3 other people I had met decided to do the same so we combined tables and had a great dinner.  It was so nice to be outside of our bed and breakfast.  It felt like civilization.  I ordered things that were a bit too ambitious for my stomach but everything on the menu looked great.  I ordered a salad, a shrimp/guacamole appetizer, and a small drink that is well known in Italy.  I don’t even remember the name because someone else ordered it for me.  I am learning more and more about the importance of healthy fats, which is why I ordered the appetizer.  I also ordered it out of desperation since I was literally starving.  There was a woman there who mashed up my food for me so that it would be more easily digestible.  She even put lemon juice on top because that aids in digestion.  I was extremely grateful for her help in teaching me to re-eat again.  It was her last night as well as another gentleman who I had befriended, so in a way it was a little celebration.  We had great conversation throughout dinner and just a good time.  Little did I know how much pain I was going to be in later.
The crew at dinner

When we got home it was bedtime, but I was wide again.  Then the pain kicked in.  I spent most of the night in the bathroom on the toilet.  If I wasn’t in the bathroom I was curled up in the fetal position.  My heart was racing, all I could think about was what is this heart monitor going to pick up if I can’t get to sleep.  Finally around 2:45AM I woke up Mom and called Dad (he actually picked up) because the pain was so horrific.  Mom massaged my stomach for a good 30 minutes but she kept telling me to close my eyes.  Due to past experiences I am scared to fall asleep, plus I felt pressure to sleep since I hadn’t slept very much recently.  I finally slept from 4:30AM-6AM.  I learned my lesson on the foods I can and cannot eat.  I have a very sensitive stomach and that was overly ambitious.  Good life lesson. 



 "Until you are broken you don't realize what you are made of.  It gives you the ability to build yourself all over again, but stronger than ever."

Friday, April 8, 2016

Bottled Up

I was so angry I could feel my heart pounding in my chest; it felt as though my heart was shaking in my chest cavity.  Today was a better day (Wednesday), I just have to start accepting I didn’t get to this point in one day so it will be a process; that is a mantra I need to forever remember nothing is going to put me into “remission” on my own.  Since I missed the lymph drainage massage, my first appointment was with the dentist for a normal teeth cleaning.  They keep emphasizing the importance of dental work and on teeth health.  There were no issues with the dental hygienist; all I had to do was sit there and look pretty.
My dentist chair here in Switzerland

Then, I headed to one of the MANY infusion rooms where I received my very first ozone therapy.  Ozone is offered in the states which is big unfortunately it is finding the right doctor for you who will administer it.  Unfortunately they were unable to use my port for ozone treatment and they needed a big vein, so I sacrificed my right foot.  They emphasized the importance of the ozone treatment for lyme patients; they said I will be rotating between the oxygen IVs and ozone treatment having one daily.

The foot IV for ozone
Ozone therapy

After the ozone treatment with the nurses who treat me like I am a human, I headed to meet with my doctor, doctor O.  During our sessions he was warm, compassionate and composed, as I was crumbling.  I was telling him I was losing my mind without sleep and how that was my first order of business.  He said let’s take a look at your prescriptions; an hour and a half later I eliminated 9 prescription medications and added 11 homeopathics.  The homeopathics I bought at the Apotheke included Weleda Nux Vomica Glob D 64 G (in case of stomach pain, emesis and nausea), ceres absinthium urtinkt (in water before the meal), iberogast tinkt (after ever meal), fortakehl kaps D 4 Trit 20 STK (bio antibiotic remedy),  sanum bacillus firmus kaps D 6 5 STk (1 per week for immune system), Ceres Dipasacus fullonoum urtrinkt (plant against bacteria), Formasan Tropfen (against rheumatic symptoms), Umwemba pastillen 135 STk (against all kinds of parasites and viruses), Okubaasan Trofpfen (against gas in instestine, to clean up), Phytodolor Tinktur 200 ML (against pain and inflammation, to exchange diclofenac), Omida Calcium Carbonicum LM6 (to stabilize constitution), and last but NOT least Omida Ignatia Glob C 30 10 G (before bed, to reduce paradox reaction).  The meds he took me off of include marinol, xifaxan, erythromycin, reglan, simethicone, colace, ativan, seroquel, and I am weaning my amitripline.  He kept repeating how he wants my body to learn to self regulate and medications only complicate my system’s ability to regulate.  It was interesting because he acknowledged I have bacteria but said no antibiotics; he said think about it antibiotics mean = against life.  Why would I want to do that to my body.  We need to support the mitocondria function in order to better support my system as a whole.  In addition, a big thing he emphasized was that infections such as SIBO only occur because the bacterium has the conditions to grow; so if we change the unhealthy environment and support my body then it shouldn’t occur.  Also, he agreed I do need to have my wisdom teeth removed but that is so far from where I am right now.  He said think about it right now you are pressing the gas, but not shifting so I am not going anywhere and we need to ease up on the gas and teach my body to drive the car again.  We need to stabilize before I can have any surgeries.  He also suggested we take a day break between doing the organ extract live cells because of how hyper sensitive my body is so I would do it every other day for two weeks vs. every day.  Our appointment went an hour over time and people were knocking on the door, calling, etc, he could have cared less.  He told me I am the most important person right now.  To hear someone say that, help restore some confidence in medicine for me.  At the end of our appointment he told me that he was going on vacation next week so I would have Dr. H starting tomorrow because he had to prepare seminars but he told me he would be available by email or phone if I really needed him.  To know a doctor cares that much is reassuring.   He said he would talk with his colleague in depth about my case so that there is no confusion.  We also created a mantra: “I am Jamie. I am a pearl of a person. I am okay.  I am protected by the shell.” 
Swelling of the right ankle

 Then, I headed to one of the MANY infusion rooms where I received my very first ozone therapy.  Ozone is offered in the states which is big unfortunately it is finding the right doctor for you who will administer it.  Unfortunately they were unable to use my port for ozone treatment and they needed a big vein, so I sacrificed my right foot.  They emphasized the importance of the ozone treatment for lyme patients; they said I will be rotating between the oxygen IVs and ozone treatment having one daily.

Next we had lunch and had a little day break which does NOT happen at this clinic.  It constantly feels like you are running from appointment to appointment, literally running.  I met with the nutritionist (Dr. S) after lunch.  She had a few good ideas.  I can’t say I LOVED her.  She was very crunchy; I feel like I have become crunchy too out of desperation but she was over the top.  She suggested putting a warm, moist castor oil on my stomach on the liver with this awesome European heating pad called a warm water bottle for over 20 minutes to help the liver.  Additionally she advised trying stomach massages to help circulate digestion and she gave me a diagram to follow in steps to create the “right” stomach massage. She suggested rosemary essential oil (doterra or youngliving) under the tongue to elevate blood pressure.  After that she recommended potato juice 4 oz per day; she said it is easy to make all you have to do is put a potato in the juicer and then drink it.  It is very soothing for the gut.  She told me tomorrow she would bring me some to try and it would be at the front desk.  Then she advised trying fermented juices 2-3 times per day; my only problem with this is I hate bubbles so it is hard to get it down.  I have to tell myself food is thy medicine.  I haven’t had any fermented juices since being here BECAUSE I don’t like it.  This is tough shit.  Last but not least she suggest half a teaspoon of gras powder in my mouth, holding it for 1 minute to help my overall immune system.  She wanted me to try it in her office, but my stomach was already disturbed and we still had more appointments.  She didn’t want to add anything else because of how sensitive I am.  Fun fact: rose quartz protexts you against EMF. 

Then I headed to the magnetic field room again.  I did 20 minutes with the magnetic ring around my liver.  It was agonizing to lay there with my thoughts for 20 minutes.  I kept thinking very red thoughts that were graphic and I couldn’t make them stop.  No one was in the room with me.

After that mentally exhausting experience of getting myself worked up in the magnetic field room I was able to have my lymphatic drainage massage from earlier in the day.  They do lymphatic drainage massages very differently here.  They do not use any oils or lotions and it is a rigorous massage to get the lymph moving.  He told me to leave my bra and underwear on during the massage.  I thought it was odd that he wanted me to keep my bra on, but I guess because this massage was for medical reasons vs. going to a spa.  That was my only thought process I could think of.  The massage was a great way to end the day; however I could feel my body so toxic after.  The lymph or fluid or something was pulling down my legs, swelling my ankles, which is a new thing for me.  So whatever he did must have triggered some immune system reaction.  My right leg was worse than my left leg.
I finished at an awkward time so Mom and I took a taxi home instead of waiting for the shuttle.  I was thankful I didn’t have to wait after a long day to go home.  As soon as we got home, we turned on the sauna then went to get dressed into bathing suits.  We stayed in the sauna 20 minutes at 120 degrees, very therapeutic.  I was pouring sweat, so was Mom.  After the sauna we showered and headed to dinner.  Unfortunately the Parsnip soup and asparagus tartar Irene made was very thick in nature and the taste was HORRIBLE, unbearable.  There was no way I was going to tolerate it so we had to request for her to make Dr. Rau’s detox broth.  For asking Irene to make the soup for me, it cost $42.00 Swiss franks.  I wish I had made it into the dining room before the kitchen staff POURED out the day’s worth of Dr. Rau’s soup that sits out all day.  But you live and you learn; now I know they throw the soup out at 5:30 each day.  I ate 3 bowls of the broth and put some olive oil in it, per recommendations from a friend.  She said I needed some fat in the meal and thought it would be a good idea to try.

Little did I know how my stomach was going to react to the olive oil.  I had significant stomach distress all night.  I felt like I slept in the bathroom; I had several hours of gas and straight diarrhea.  My stomach was cramping.  I dozed off for two hours and then was wide-awake again.  The hotel does not have Internet at night so it is not like I am on the internet doing “research”.   All through out the night I was disturbing Mom so it is not like she got any sleep either.  I would get up, get hot water, go to the bathroom, and move around in discomfort on my bed, you get the picture.  With that being said at 5AM Mom had the brilliant idea to get some fresh air so we got out of bed and physically went on a walk.  We walked for about 30 minutes and then that was the start of my day.  I could not go back to sleep.  Thursday morning I hadn’t felt that emotionally unstable since February of 2011 when my disease started truly spiraling.  I had very violent thoughts.  I was angry, anxious, and had suicidal ideation.  I know you have to go through hell to get to heaven as they say, but I was not having it.  I immediately called Dad, was pacing outside the bread and breakfast, telling him I was going to kill Mom or myself so he needed to pick who he loved more.  I was completely irrational, a true basket case.  I love Mom dearly but I said very hurtful things and did not allow her to come to the clinic with me because “I didn’t want her to hinder my healing and she obviously was.”  I did not think I could continue the program and I wanted to go home.  I struggled with whether or not to include my mood details, but I think it is an important topic that needs more awareness.  Many people don’t understand how lyme, coinfections, metal toxicity, viruses, and parasites affect your mood.  Every day that I am here I learn more and more.


“You have seen your own strength. You have seen your own beauty. You have seen your golden wings.  Why do you worry?”

Wednesday, April 6, 2016

They never said it would be easy!

Since my Mom and I arrived Sunday morning, we were super jet lagged and both took long naps through out the day.  Well then comes Sunday night and I didn’t sleep at all, same cycle Monday night and Tuesday night.  Every time I went to go to sleep I was wired, wide-awake, racing thoughts about anything and everything.   

If I am going to be honest through out this blogging journey then I must admit Tuesday was a very difficult day.  I started Tuesday morning with Dr. K examining my blood under with the use of darkfield miscroscopy.  He poked my ear with a pricker and put the blood right on a glass slide under the microscope and then put it on a video transmission screen for Mom and I to follow the process.  This process tells us about the speed of cell degeneration, cell resilience, immune system, degenerative tendency, and the susceptibility of tumors; they recommend getting the procedure done every 3 months to follow progress.  Dr. K interpreted my results for Mom and I.  We found odd-looking monocytes which indicate that my immune system is challenged and under cellular pressure, nothing new if you ask me.  Then I had bright white WBC which suggests toxicity usually heavy metals.  I have never been tested or treated for heavy metals so that does make sense.  He could also tell that my lymphocytes are activated which is a positive thing; Dr. K said my body at least recognizes that there is some dysfunction in my body.  As far as my red blood cells went, he was able to tell I was anemic, makes sense since I am on a liquid diet and not getting much protein.  I had some “bee hive forms” that indicate my mineral content and helpfulness of protein could be improved.  I could actually see the beehives, which was really cool!  In my red blood cells, shadow cells were found; shadow cells are a representation that the quality and amount of fats could be better to boost cell membranes.  Then as far as my plasma, crystals, and deposits go it was found that I have a crystal cells that suggest long-term acidity.  It was also discovered that I have lemon cells, which indicated to Dr. K that my liver is not breaking down fat.  Last but not least they found Theziten, which was very validating to have a test show that I have leaky gut.  Theziten is a bacterium from the gut.  Needless to say, my appointment with Dr. K went really well and was very informative. 
 
My blood under the use of darkfield microscopy.

Next I was headed to a colonic, which is not a new concept to me because I do enemas to help with the gastroparesis and help get toxins out.  The colonics was like enemas on steroids.  At first nothing was happening during the whole colonics, so she started massaging my stomach tracing the intestinal path.  She said she could feel that my colon was full.  As soon as the colonics ended I was going to the bathroom for at least 30 minutes.  I saw a stool in the bathroom and used it to replicate my own Squatty Potty.  My stomach was significantly flatter the whole day after, but did cramp up a little bit through out the day.

The colonics machine
Diagram of your digestion 
Then I was headed back to see Dr. K for a consultation since he is the clinic’s naturopath.  I came in with an agenda, more so suggestions based on research that I have been doing night and day about various treatments for the past few years.  I asked about a fecal transplant since I am ineligible in the US because I do not suffer from Chrohn’s or C. diff.  He immediately shut me down, asked if I was finished talking now and if I could let him talk.  He was very condescending.  He believes my body has to take control of itself; he kept saying, “only a symptom of your body being medicated.”  He just kept repeating it and I didn’t feel as though he was very genuine.  He didn’t listen to my concerns.  He reminds me of one of those dolls where you pull a string hanging from the chin and the legs fly up.  He did tell me that colonics stimulate the parasympathetic nervous system.  Another interesting fact that he told me was humans and pigs are 99.9% similar at the cell level.  So, that brings me to my next treatment he suggested organ cell extract injections two times a day for two weeks on my glutes.  The organ cell extract is from a pig!  He also gave me injections in all of my scars from PICC lines, gallbladder removal, appendix removal, and old port site; he said it promotes healing.  Then he gave me an injection of epigastrium for nausea a few inches below my breastbone.  Last but not least he did two injections on the stomach meridian point 25 to stimulate digestion.  Overall what he was saying was fascinating; however his condescending attitude was not going to be beneficial for healing because we weren’t working together he just wanted to instate his plan.  He wrote me two homeopathic remedies one for vegetative support and one for sleep support. 

After that frustrating appointment, I went to receive pulsating magnetic field therapy.  The explanation of this therapy is, “a physical therapy, win which broad pulsating magnetic fields of extremely low frequency are made usable for therapeutic purposes.  An organism can be affected bio-energetically by a broad pulsating magnetic field of a certain frequency and intensity.” The magnetic field therapy completely penetrates the body’s tissues and has a strong effect at all level; this therapy not only works at the tissues at the surface but also is actually able to penetrate bone as well as all organs and cells.  So I had my pulsating magnetic ring placed on my liver for 20 minutes.

Magnetic Field Ring
Next I headed to have a Rhythmogram, which is a special heart rate variability assessment to determine the regulative capacity of the autonomic nervous system which should be in a dynamic balance between the sympathetic and parasympathetic nervous system.  I only did the test on Tuesday, but will receive the results on Thursday.  It reminded me of when you are at the doctors and they do orthostatic vital signs.

Then Mom and I headed to lunch since we were exhausted and it was about that time.  We ate with our new friends we met that are staying at the same hotel as we are.  It is such a community here, some people have a support crew like me and others are here by themselves.

After lunch I went to the receptionist to ask if I could switch doctors from Dr. K to a different doctor because it wasn’t a good fit and wasn’t going to promote positive healing if I wasn’t comfortable with the doctor.  The receptionist told me that was not a change she could make, that my doctor would need to make that call.  At first she said it doesn’t really work like that.  With the lack of sleep being a major factor, I had a mental breakdown I ran out of the clinic hysterically sobbing.  I got to the parking lot and threw my pen and journal pretty far out of frustration.  I was pulling on my hair, screaming, etc.  You get the picture.  But I had to have that mental breakdown to move on.  After I called Dad he re-centered me and brought me back into focus then Mom and I went on a walk because fresh air always helps me refocus.  Mom and I got some good hills in too!

View from our walk- it is so green here!

After the mental breakdown and the walk, I was scheduled for an oxygen IV.  But right before I was called in to the room, I hear my mom being called away by Dr. K, so my anxiety shot up.  I was not the politest in the appointment BUT I apologized at the end and said it wasn’t him it was frustration, lack of sleep, and years of being sick.  Turns out he told her they were switching me to his colleague because he believes that would be a better fit for me anyway and it’s nice because she is a woman.  She even came and introduced herself as I was receiving my oxygen IV. As far as the oxygen IV goes it is exactly what it sounds like, in the United States we are taught that would cause a pulmonary embolism so I was very anxious to begin with.  Then the nurse accessed my port without wearing a mask and then didn’t put a tegraderm dressing over top of it to prevent infection.  This is another thing that has been drilled in to me, that your port must be accessed and de-accessed in a sterile field, which makes sense since it is a central line to my heart.  She looked at me as if I was bat shit crazy. I started having a panic attack because it was stressing me out that she didn’t think it was a big deal.  After Mom calmed me down and I was able to listen to some music, I saw Tiggy the kitty outside.  We are a family of three dogs, but Dad has this thing with cats.  I say his spirit animal is Tiggy the kitty because sure enough anytime I had been in distress on Tuesday he followed me everywhere.  He would just appear.  It made me feel like Dad was with me on the trip.  He said we are always looking out for you.  The oxyvein therapy was developed by Dr. med. H.S. Regelsberger.  It has a broad list of indications such as disturbances in the microcirculation, eye problems, tinnitus, heart & circulation disturbances, and immune regeneration.  I had to lay down completely flat and still for 10 minutes while the oxygen went into my veins and keep my arm completely still so I wouldn’t blow the vein.  Eventually I will build up to 20 minutes; the possible side effects could include headaches or dizziness.  I didn’t experience any of the side effects.  As soon as that IV was finished, my nurse hooked me up to a lyme infusion filled with 11 different components in the cocktail.  Then, I did a b complex drip.

After my infusions I headed to a different building to receive local hyperthermia. Local hyperthermia provides, “a deep hyperthermia functioning through an insulated metallic electrode.  Acting via conduction an external source of heat dries and dehydrates the skin favouring the development of varicose veins and reducing the level of blood and lymph circulation.”  I had the local hyperthermia on my liver and adrenals.  I layed bottom down on this metal looking shield; they told me it was important to put my skin on to the metal looking shield for maximum benefits.  Then a med tech used an ultrasound looking machine to trace my adrenals with it for 30 minutes.  It wasn’t near as hot as I was expecting, but that will probably come next week when I do the full body hyperthermia. 

Thank god the day at the clinic was finished after all of those appointments.  I was mentally exhausted and drained.  All I could think about was sleeping however I didn’t want to go take a nap because then I was afraid I would be up all night.  To kill time, Mom and I decided to go use the sauna before dinner, which was relaxing and nice way to unwind from the day.   Then we showered and headed to dinner.  Dinner’s soup was a really creamy sweet potato soup (since all I can eat is soup, that is what you will be reading).  It was delicious but I did not think the consequences would be as severe as they were.  My stomach cramped up the entire night; I guess it was too dense for me.  Mom and I decided to go on a little walk after dinner…little did she know what was in store for her, hills that would be considered mountains in Maryland.
Sweet potato soup

Then when I got back from the walk, the highlight of my day was talking to my girlfriend Ainsley on the phone.  She just got what I was going through and even if she didn’t she listened and allowed me to vent.  Then at 10pm the wifi shut off to promote healing. 
Selfie on our journey of healing
I was so excited to sleep because I am beyond exhausted however I was up all night in pain.  I did not fall asleep until 4:45/5AM.  I was up coloring, reading, and creating this kick ass blog post that I accidentally deleted.  Mom thought since I was so fatigued that she should let me sleep in and miss my first appointment, which was a lymph drainage massage.  My first appointment was at 8:00AM; I woke up and turned my head, saw 8:05AM and woke up just livid.  I immediately called Dad to calm me down.  I had forgotten that it was 2:00AM for him, but he actually talked to me and calmed me down.  I know my Mom means well, but sometimes her executive decisions cause me more angst and anxiety, which is counterproductive. 

But I must admit I see the program working with other patients which is why I am sticking with it because there were a few times that I considered hopping on a plane back home.  One of my new friends had colon cancer, did chemo, but then it came back in the lungs. So she decided to shop around for clinics and this was the one where the patients had the best lasting feedback.  This new friend of mine had cancer markers of 22 heading up 1.5 per week so she expected it to be 26 by the time she got here.  However she started taking doterra frankinsence essential oil under her tongue all through out the day and her cancer markers dropped all the way to 13.5. Her conventional medicine doctor said keep doing what you are doing because something is happening and it looks as for the better.  When I hear stories like hers, I am reminded of why I am here and what I am fighting for. My health. My life back.  And now I have a new reinstated hope.

“Just for the record darling, not all positive change feels positive in the beginning.”


Tuesday, April 5, 2016

Current health status

My current diagnosis and state: Lyme, bartonella, babesia, mycoplasma, Chlamydia pneumonia, hypothyroidism. gastroparesis, and SIBO

Paracelus could not have come at a better time for me.
·      Meningitis at the end of July was a majror setback cognitively and physically
·      I was in the hospital 5 times in 6 weeks a total of over two weeks
·      I was begging for an NG tube just to get some of the food and acid out of my stomach
·      I was throwing up nearly every day for 6 months
·      I am a liquid diet because of the gastroparesis
·      I have been isolated from social events due to being sick and having stomach issues
·      It is hard for me to hold a conversation—horrible concentration
·      Daily headaches, neck and spine pain
·      Insomnia (running on 3 hours of sleep)
·      Anxiety—can be crippling
·      Thyroid dysfunction
·      Tachycardia
·      Base of the neck pain
·      Losing lots of hair
·      Bruising easily
·      Passing out regularly
·      Constipation as a result of the gastroparesis
·      Neurogenic bladder
·      Swollen fingers
·      Dry mouth
·      Have lost 50 lbs or more
Lots of throwing up or constipation


“I can only go up from here”

Monday, April 4, 2016

It's only the beginning

What an incredible first day; I don’t even know where to begin maybe with the fact that I woke up at 5AM and couldn’t go back to sleep so I colored for 3 and half hours. While my mom slept comfortably.  I guess I will start with Mom and I arriving late on our first day for the shuttle and missing it.  Mom’s watch was two minutes to slow and apparently the Swiss are extremely punctual.  After the fact Irene and Christian, the owners of the extended stay hotel, told us to arrive 5 minutes early every single day because the Swiss are so punctual.  Everyone here is so friendly, so Irene called a taxi for Mom and I.  Let’s just say missing the shuttle then having to pay 8 Swiss Franks is not a great way to start the day.
The front view of the Klinik

By the time we arrived at the clinic, we were greeted by receptionists, handed a book full of appointments for the upcoming month, and then headed to the dentistry building for a panoramic X-ray of my mouth.  When arrived to the dentist, I was instructed that I would need to take my daith piercing out, but the thing is I have never taken it out before.  Let’s just say it took a pair of pliers and my mother’s strength to pry this earning out of my ear. 
Day 1 schedule

After the quick panoramic X-ray of my mouth, my Mom and I went on a little walk in an attempt to kill nearly two hours.  After our walk it was lunchtime and we met some of our new friends down at the Restaurant before we met with doctor. The bonus of staying at the Hotel Santis is that everyone is affiliated with the clinic so if I see them at the hotel during meals it is a good chance I will see them at the clinic during the day.  As everyone knows it is nice to see a familiar face when receiving treatments, but it is even nicer seeing someone familiar when everyone speaks different languages.  And you are homesick for your native language.

One quick side story there was a little Indian boy in the dentist office and he was in tears.  All he wanted was his Mommy, he had a peripheral IV hanging from his arm and he just looked like he was in so much pain.  I started crying, we had to leave the room because it was heart breaking.  I later saw him during my infusion and he did seem a little bit better.

After eating a pureed vegetable soup, I was headed to the first doctor appointment with Dr. Oatmeier.  During my one-hour appointment, he said without a doubt he could help me.  He almost laughed when I asked; he said complicated cases are nothing new to him.  He did a physical exam and he could tell I was bloated; he said I had lots of “flatulence.”  Well obviously I look 6 months pregnant so if he didn’t notice then we would have lots of other issues.  He didn’t take me off any medications yet or introduce new supplements.  I would just kill for some Swiss chocolate right now.  All of the food here smells delicious so I am hopeful by the end of the trip I will be able to eat some solid food.  Maybe even a croissant.  But anyway back to my appointment, he got a comprehensive view of the past 23 years of my life.  Then asked a few questions to my Mom about my birth and her pregnancy with me.  I guess all of trivial things have contributed to my current state of health.  We reviewed my dental X-ray.  The only thing he saw that could be an issue is my wisdom teeth being impacted.  The wisdom teeth sit on the intestinal meridian so it may benefit me to have them removed as soon as possible.  The issue is it is so much cheaper stateside; however I don’t want to be putting in all of this effort then

After my meeting with the doctor we headed downstairs to the darkfield microscopy.  However the doctor never showed; apparently they double booked him so that appointment was moved to Tuesday morning at 7:30 AM.  After my appointment was cancelled we headed to a different building to meet with a woman named Barbara who was going to go over my month long schedule and answer any questions we have.  I just can’t say it enough that the Swiss are so friendly.  That appointment didn’t run over; the clinic scheduled an hour and I only needed 45 minutes so I headed up to the infusion department for my mystery infusion.

It is not really a mystery I just forget everything they told me was in it.  But I do know the two infusions I had were filled with B complex vitamins, magnesium, folic acid, and other essential vitamins.  I was there for a while because they couldn’t figure my port out.  They had to draw several vials of blood and the nurse in training needed the head nurse’s assistant when drawing my blood.  My port was being finicky and was being resistant as the nurse tried to flush it.  It was my day to have my needle changed however they didn’t know which size needle I needed.  Thank god I brought two needles from home with me so I can have them change it the next time I am there.  I was supposed to be tested of heavy metals too but there was no time so that will need to be fit in somewhere.

Because it took the nurses so long to figure out my port and start my infusions, I was going to miss my last appointment of the day, which was with the dentist.  The dentist agreed to stay late so he could see me.  I picked up my IV pole with two IVs on it and rolled myself across the parking lot to the dentist.  Before I tell you about my appointment with the dentist, let me just say when I saw him he was easy on the eyes.  He has a thick British accent and looked so dreamy.  He said my teeth looked like I take good care of them.  The only thing he was concerned about was my wisdom teeth especially since they are seated right on the intestinal meridians.  He said he couldn’t guarantee that it isn’t causing me issues.  Mom isn’t too keen on having the surgery here for financial issues; it is much cheaper in the states. My fear that I am going to do all this work then go back to the states and relapse after the surgery and then I feel like I will be at ground zero.  We left it at we will discuss it with my doctor and see what he says.

Lab work 
After the dentist I rolled my IV pole back to the infusion department where they de-accessed my port and told me they would reaccess it tomorrow.  Without my knowledge the last shuttle of the day left, however the nurse called the shuttle back and I was able to hop on the shuttle at 5:50 with Anna from Berlin who also missed the earlier shuttle.  I know that seems early for those who work long hours but 10:15-5:50 wiped me out.  I knew the last thing I should do was take a nap even. though that is all I wanted to do.  I forced myself to stay awake in the hopes I would sleep through the night.  I went to dinner around 6:15 the pumpkin soup was very good.  I just would kill to be eating what everyone else is, however I know it is not an overnight process.  I didn’t become this way overnight.  After dinner Mom and I went into the sauna for 23 minutes.  At first we didn’t have it heated right, but then that heat started pouring into the sauna and before you knew it, Mom and I were sweating. 

After the sauna I took a quick shower to rinse off.  I must say being de-accessed and showering was heavenly.  I was dead asleep by 9:15pm then I woke up at 1:15am which is when I decided to re-cap my whole first day.  Feel free to ask questions, I feel like I am a guinea pig for all of my friends, but I had to try something different.  I was dying in the states.  I needed hope and I know I came to the right place.  For pete’s sake when I asked the doctor if he could help me he said of course.  No doctor has ever said of course like he did because I am a complicated case.  But this is the place for those cases.  Another piece of hope has been talking to patients and hearing their success stories.  Two ladies I have met are here for cancer and they have seen dramatic decreases in their cancer markers.  Another lady came here for lyme and she is now in remission.  Life doesn’t get much better than that

Tomorrow my day is jammed pack starting at 7:30am with the darkfield microscopy (rescheduled from yesterday), colonics, appointment with Dr. Kimbles, heart rhytmogram, cardio sonic diagnosis, oxygen IV, and last but not least local hyperthermia.  I have some draining days ahead of me, please keep me in your thoughts over the next few weeks.
Tiggy the klinik's homeless cat



“You become a magnet for what you want by simply asking the universe.”