Thursday, October 30, 2008

Final test!

This morning was our test to see how we have progressed through Lyme treatment with the photons.

Today was the day that my Lyme was due to flare, and it did .... but only slightly. Instead of wanting to lie in bed all day, I woke up before my alarm at 7 and got right up. I felt some slight pain in my shoulders and back along with some fatigue, but none of it was disabling as it had been prior to the photon treatment. I'd say I was about 75% today .... though Willow says I was 70 because of all my complaining (do I really complain that much when I feel bad?).

So, I know you're waiting to hear .... I'm not Lyme-free .... I still test for the lowest level of Lyme ... much, much different from the first test where the machine sounded like it died, LOL! The machine showed that I had gotten rid of most of it, so the photons are definitely working, it will just take a little more time.

I am bringing a machine home, so I will be able to continue treating. Dr. W said about 3 more treatments should clear it. Amazing since I've had this for so long and was so sick! This machine is truly a miracle!

I know many of you are reading because you are trying to decide whether or not to come here for treatment. This works. However, if you have other issues, like viruses, coinfections, etc., it will require more treatment as this three week protocol is only for Lyme. Some of the coinfections may clear, but you also may be like me and need a little more time. Please take that into account.

If something like Epstein Barr is a big problem, you may need to treat that after the Lyme is cleared. Same with other coinfections, viruses, metal toxicities, etc.

This is a fantastic, unbelievable treatment, but it's not a miracle. My progress seems miraculous, but it has been work and will still take some time when I get home. Please plan for that.

Dr. W suggested that I use my blood in a vial instead of the nosodes once I get rid of the Lyme. Apparently, it's hard to find a good babesia nosode, but since it's carried in the blood, I can use that. The only problem is that the blood carries the information for all the pathogens in the body, so treatment can be difficult .... he said to use 25% power to start out.

Well, the three weeks has gone by quickly. It has been really fun exploring Germany and a little of France, healing, and getting to know fellow Lyme patients. Tomorrow I pack to go home. Woohoo!

To sum it all up, I feel SO much better and I'm very glad I took the chance that this might be the answer.


We went to France! Better Health Guy, his friend who is here for treatment, and I went to Strasbourg. It was a blast!

We drove right up to the beautiful, Gothic Cathedral and some French guy told us we could illegally park for 3 euro. We thought he was the parking lot attendant, and maybe he was .... or maybe not, we'll never know, but we got a parking place right up front! We went up the 300 steps to the top of the Cathedral, looked at the views, and signed the guestbook. For those of you who follow us here for treatment, you now have a mission .... find sixgoofykids and Better Health Guy in the guestbook and sign there with us!

We got a coffee in a cafe, bought candies at the fanciest candy store I've ever seen, bought girly stuff for me in the fanciest drug store I've ever seen, then headed out to a concentration camp. Wooo, what a contrast!

It was a cold, dreary, misty day .... you couldn't ask for more perfect weather to travel to a concentration camp to learn about the barbaric treatment of Nazi prisoners. After we purchased our tickets and walked up to the entrance, I could feel the fear that the prisoners must have felt. I felt nauseous the whole time and feel nauseous even now in writing this.

When we got to the gate, the man there gave us instructions in French. I asked if he spoke English, and he said no, so I asked if he spoke Spanish. A man behind us started talking to us in Spanish and telling us where everything was and what we needed to see. When I turned to the others to tell them in English what the man said, the man asked where we were from. When I told him the US, he asked why were we talking to him in Spanish .... I said because we didn't know he spoke English, LOL!

Ends up this guy was a concentration camp survivor. He and a few other survivors were meeting there with some other members of their families. He showed us around and told us all about life at a work camp. He was a tall man and likely weighed about 200 pounds, but told us that when he was released at age 20 at the end of the war, he was only 70 pounds. He said they were given about 900 calories a day and expected to work. The life expectancy at the work camps was about 9 months and most of the prisoners were political resistance.

The objective of the particular work camp we saw was to quarry red stone to sell for profit .... they even made a profit by selling the ashes of the deceased back to their families.

There were many medical tests on typhoid done at this camp. It was very eerie being there.

I asked the man if it was difficult to be back at a camp and he said no. He had no hatred whatsoever and made it a point to pass on what happened to the younger generations so that it wasn't lost.

I truly felt connected to him when he said that upon his release when he went back to Paris to his friends and family that they didn't believe him ..... they didn't believe what had happened to him. I have been fortunate that nearly everyone close to me has believed me that I have Lyme Disease, but certainly I have had my share of doubts from people I know .... even doctors .... one doctor practically made fun of me and another diagnosed me with Somatization Disorder in the face of a positive Lyme test.

It seems that it's merely human nature to not believe suffering that is not easily understood.

After the tour and talking with our patient, informative guide, we drove back to Strasbourg for dinner ..... so I ate at a real French restaurant in France!! What a contrast to where we had just been. Where the camp was grey, dingy, and cold, the restaurant was bright, warm, and cheerful.

We ordered "cottage cheese and roasted potatoes" as an appetizer, mostly to see what it was .... ends up it was roasted potatoes and sour cream .... just a poor translation, LOL. I also had lamb .... cooked carrots ... yeah, I know, gross, but these were the best cooked carrots I've ever tasted! They must have been cooked in chicken broth with sliced celery ... great flavor! Then there was some kind of garlicky pasta dish ... or was it potatoes? I don't really know, but it was delicious. And as if it wasn't enough food already, I topped it off with some carmel custard. Yum!

We came back to Germany afterward and got home 12 hours after we had left. Willow and Steel were concerned and told us we missed our curfew, so I think we were grounded today. As we drove up the mountain, the rain turned to snow ... this morning when we got up, there was about 3 inches on the ground. It was so beautiful in all the spruce trees.

It amazed me how much different the architecture of France is from that of Germany. It's no farther than the drive from Ohio to Kentucky, but when driving state to state, everything looks basically the same, but when driving from country to country in Europe, the entire culture and language is different .... of course, I knew that, but it's still something to experience.

Wednesday, October 29, 2008

Fifth treatment

Sorry it's taken me so long to get this written .... well, not really, I'm feeling good so have been too busy to write! Woohoo!

The fifth treatment was the same as the others. I felt good beforehand, and felt good afterward. I am not 100%, but am improving, probably about 85-90%.

My monthly flare up of symptoms is due. Normally it starts with air hunger, then in the next day or two I'm spending in bed about all day. My air hunger came two nights ago and I'm still feeling fine, so we'll see if the full herx comes or not. I will also look into mold nosodes and babesia nosodes when I get home to use with my machine to get rid of the air hunger.

The only other symptoms I'm having are very small, random pains, nothing major at all.

I am still taking my sleep medications and have been the whole trip. I didn't think that this was the time to wean off them and did not tell Dr. Woitzel about them. Was that the right thing to do? I have no idea, but I wanted to sleep while I'm here ..... no sleep would make the trip twice as long, LOL. I plan on using the insomnia protocol when I get home and get settled with the time change.

Today I'm going to Strasburg, France with Scott and Russ. I can't wait to see the Cathedral there. The churches here are rather plain .... I don't know why, but I'm guessing it's the Lutheran influence in Germany. We are also going to a concentration camp near there. Unfortunately, it's a rainy day here, but it's my last chance for sight-seeing as tomorrow we have our appointment to see if we still have Lyme, then Friday we need to pack and clean the apartment. Saturday we go home, YAY!

Yesterday Steel and I went to the spa in Baden-Baden ... the dressed spa, LOL. It was really nice. It had a steam room with aromatherapy which was beautiful! All tiled, columns .... very pretty. Everything was marble in the rest of the spa. There was a hot pool, with a cold dip next to it ..... a waterfall coming over stones felt very good on the back and shoulders. There was a very large pool with various layers. Then there were two outdoor pools ... one was 90 degrees and swirled like a lazy river .... the other was 95 degrees and had a waterfall and a couple spigots for water to fall on your shoulders and had places to sit. One place to sit had tons of bubbles coming from the bottom ... the flow was so great coming out of there I had to hold on! In fact, there were jets everywhere and if I walked past them, I would get caught in the stream like a falling leaf catches in the wind.

I believe I've lost a little weight here. My jeans are a little loose ... but that could be because they don't dry clothes here, they just lay outside to dry. I thought I looked thinner in a bathing suit.

Steel and I went to the Lowenbrau restaurant after the spa. We both had a great filet with bernaise sauce, roasted potatoes, and a glass of wine. I had apple streudel for dessert, he had ice cream with hot raspberries. It was delicious.

I think you're all caught up now. ;) Have a great day!

Saturday, October 25, 2008

Fourth treatment

I felt great after the fourth treatment and today as well. I really feel like this Bionic 880 is helping tremendously. Prior to this, when I would stop antibiotics, I would decline, in fact, I was declining leading up to my trip to Germany. Now I am feeling as well as I do on antibiotics.

Before my fourth treatment, I finally got my chiropractic adjustment (in my shorts, LOL). It was great! He is very thorough, working his way up from the toes all the way to the head.

Today Willow and I went to Heidelberg. What a beautiful city! We walked, and walked, and walked! We walked up to the top of a hill to the castle there. The castle was built from 1294 through the 1500's, so much of it is in ruins. We had a wonderful time.

I am feeling really good. I put myself at about 90%, but Willow says I'm more likely 80% from her observations .... but that's me always overestimating how I feel, likely because I have had Lyme for most of my life.

Willow has not seen much change. Her Lyme load was the lowest of the three of us and she knew before she came that she has extremely high Epstein Barr numbers. She plans on buying Epstein Barr nosodes and treating it when she gets back with her Bionic 880.

Scott, the Better Health Guy arrived today and it was good to meet him and a friend of his who is also here to be treated.

Our fifth treatment is Monday, and we get tested again on Thursday .... go home on Saturday!!!

Thursday, October 23, 2008


I just got back from a nice walk all by myself. I am happy to find that the bakery right here in Dobel has the best soft pretzel I've had yet. For those of you coming here, it's the second bakery. It's also nice that food is less expensive here. My pretzel and cappuccino were only 2 euro.

When I got up this morning my mind was moving a mile a minute. I was thinking about the fact that my "healthy" over the years has not been healthy at all. I didn't know any different since I've had this for the majority of my life. All along I thought I had a tendency to be lazy, that I had to push myself to overcome my inherent sloth. As a result, I was the opposite. I worked hard at everything I did and was successful right up until I could no longer push myself to overcome the illness.

I look back at the four times I was overcome by the Lyme and see that there were several factors that made me ill. All four times I believe mold exposure was part of the last straw (3 out of 4 times I had known mold exposure), but also I was pushing myself all four times. Perhaps it was as my immune system got stressed from both the mold and the Lyme that I had to push harder.

Back when I was in high school I went to bed earlier than my friends and went through the day in almost a daze I was so fatigued all the time. I remember looking at my friends and thinking, "Why aren't they tired like I am?"

I remember in college that so many of my friends could party all weekend and I had to be careful to drink a lot of water and take vitamins when I drank, and typically I felt bad for a couple days afterward even though I drank half what everyone else did. In my 20's I remember having two glasses of wine .... 2! .... then I was sick for at least three days.

My "healthy" .... my 90% well is probably different than a person who does not have Lyme. I have been told by a friend on Lyme chat that I consistently underestimate how poorly I'm doing. Perhaps that's because I've lived with this for so long. I get back to having simply some fatigue or some aches and consider myself "healthy."

Today I'm out of bed .... dressed, hair done, makeup on ... went for a walk .... am sitting up at my computer .... this is a good day for me. I have pain in my left shoulder and down the left side of my back ... I am slightly fatigued ..... I have a little air hunger .... this is as good as it gets for me .... well, that's not true, for three days after I got rid of my moldy mattress I felt what I would consider totally normal.

I have been off antibiotics since August .... I have been off anti-malarials since September .... and I'm on an upswing. Does this silly light work? Could it be this simple? What will it feel like when the Lyme is gone? It will be a whole new paradigm for me. Will it be gone when I leave? Will I have more to work on? I know this light is working at least as well as any treatment I've been on yet .... but does it work better?

In the past five years I have dropped out of everything. Some days I care for my family, other days they care for me. That's it other than playing my flute at Mass and funerals. If I'm cured, life will certainly change.

On the one hand, life has been taken away from me. It has been incredibly boring. But you can't just look at the obvious. When I really ponder my illness I see that it has had so many good effects on me and my family.

For my family, they have learned compassion and patience. They have had to help me to the bathroom. They have had to discern when to let me stay in bed all day and when to push me to get up and get out of the house. They have had to clean, cook, and do laundry. All six of my kids have become self-sufficient. One day my two youngest were steaming carrots and browning bratwurst for dinner. Our family is a whole ... we are together and have experienced this together. We are not just 8 separate people. We are a unit. Hardship does this to a family. I wouldn't trade what Lyme has done for us for anything.

For me, I have learned about suffering. I have learned there is more to life than accomplishments. We, as Americans, tend to a "more, more" lifestyle. We put value on what we have done or what we have rather than who we are. I have learned that being is more important than doing.

So, here I am all the way in Germany, thousands of miles away from home, with two others that I had never met before to shine a light on me while vials are taped to my abdomen. Strange indeed. What is stranger are my emotions this morning. I think I'm letting go ..... or am I holding on? .... it's hard to tell. I've always lived with Lyme, so I don't know any different. I do feel I've reached a turning point, if not physically, at least emotionally and spiritually.

Wednesday, October 22, 2008

Third treatment

We had our third photon treatment yesterday with the same protocol as the previous treatments. We were all three starting to feel a little puny since our previous treatment was five days earlier .... with the weekend and having a Tues/Fri schedule of treatments this week, it just happened to work out that way.

I felt great as soon as we did the treatment and felt good the rest of the day. This morning I woke up a little sore ... a toxic sore .... so I took an epsom salt bath. Right now I feel good, but have a little air hunger, which I hear can be from toxins (your cells need more oxygen). I'm taking chlorella to try to move some of these toxins out.

I don't have any of my other Lyme symptoms.

Steel has some organ pain in his right side this morning, and Willow's back is sore ... Willow had chiropractic yesterday so the sore back is probably a result of the adjustment.

It's a yucky, rainy day, so other than going to the grocery, we will probably just stick around here. I believe we meet Joey today. :)

Sunday, October 19, 2008


This morning I went to Mass at a Church in Bad Herrenalb. It was a pretty church, but the churches here seem to be understated, possibly because of the Lutheran influence. It also wasn't heated. Brrr. Mass was very nice, but I didn't understand it, LOL.

For a small church (maybe 50 people), they had 11 altar servers! I was surprised that they receive Communion in the hand as well as directly on the tongue as I had heard that in Europe it was on the tongue only. I had also heard that they kneel and stand at different parts than we do, but that was not true either. In fact, it didn't seem important to them if someone was kneeling, standing or sitting, though if someone kneeled it was the same time as we do in the US.

They did no read a psalm, there was an instrumental interlude. The priest is the one to sing alleluia ... he went up to read the Gospel and sang alleluia first then the congregation followed. I have no idea what the homily was about, LOL. The altar servers read the intentions and they did no seem to say a creed.

Afterward we went to lunch, then to Stuttgart for the day, so obviously I'm getting around well. I'm feeling really good except my fibromyalgia started coming back this evening .... it has been gone ever since the first treatment. I wish we had treatments tomorrow, but we don't until Tuesday.

I'm enjoying the German food, so I should put on some weight while I'm here. :)

Take care, I'll write Tuesday unless I do something interesting tomorrow.

Friday, October 17, 2008

Baden Baden

Today we went to Baden Baden for the afternoon. It is a town about 45 minutes from here famous for its spas. There are natural hot water mineral springs and royalty has gone there for generations for healing. It would be fun to go back and visit a spa. We saw them, they are very beautiful. There is a naked spa and a dressed spa .... I think I'll opt for the dressed. :)

The three of us went with a mother and daughter who are here for treatment. It was a wonderful day and all of us seemed to feel quite well.

I am feeling really good. Very few Lyme symptoms .... the one I miss the least is the crushing fatigue.

Thursday, October 16, 2008

Second treatment

I have felt really good, but not great, since last evening. For a couple days after the first photon treatment I felt really bad in the morning and better in the afternoon and evening, but today I woke up feeling good.

The air is clean in Dobel. It's a small town about 25 min. outside Pforzheim in the Black Forest. The tap water is great .... I hear it comes straight from the mountains. I'm a total water snob, so it's unusual for me to drink right out of the faucet, but this is good.

We are just a short walk from downtown where there are several restaurants. The food so far has been great. I'm not a big fried food person, or a big pork person, but my favorite meal so far has to be this fried pork we got at the restaurant closest to our guest house. The pork was as tender as veal and was served with roasted potatoes and salad. Yum.

The forest is beautiful, absolutely beautiful! It looks different than the forest in the US because of the gigantic spruce trees. It's the perfect time to be here because the weather is cool and the leaves are changing color. If you cross country ski, I'd come later in the year as there are many paths through the forest where you can ski to the other towns.

So, today we went for our photon treatment. It is the same every time ... tape the nosodes to the solar plexus, then 320 seconds of photons on 10 places. Afterward a mineral/water IV.

Today I didn't feel as much as I did the first time. I still felt it, but significantly less .... I didn't have that electrical feeling as much and my eyes didn't bother me at all. Afterward, I felt fine and we all went to the Mall to get something to eat. We stopped at the grocery on the way back to the guest house and have the rest of the day to relax. I'm a little tired, but not that overwhelming Lyme fatigue.

Yesterday Steelbone and I went for a long walk all over town. I found a small Catholic Church and went inside to be sure it was Catholic and see if I could find out Mass times. There was a lady standing in there praying the rosary and she nearly jumped out of her skin when I walked in. She spoke no English, so I asked her what time the Eucharist is in German. I forgot that though I know how to ask the question, I don't know the German to understand the answer, LOL!

Mrs. Klein looked up the Mass time for me. Steel and Willow will drive me to the next town to the prettier Church on Sunday for Mass. There is a beautiful old Lutheran Church right in Pforzheim, but the Catholic Church is ugly ... probably built in the 60's. It's really just a chapel.

There are other people staying in the guest house who are seeing Dr. Woitzel. It's becoming a Lyme hospital, LOL! The Kleins are very hospitable and try very hard to speak English. They are learning and we've been able to communicate pretty well. Mr. Klein is putting an internet connection on the stair landing for the Americans.

Well, that's about all. I still haven't had my chiropractic adjustment, but I'm looking forward to it.

Wednesday, October 15, 2008

First Treatment

Well, I made it to Germany and have had my first appointment with Dr. Woitzel. He is a very nice man and really seems to care about his patients. He speaks English well, though the nurses are more limited. One of them asked if we knew any other languages and I said Spanish, so she spoke to me in Spanish! She was very please to not have to speak English. Then today, Dr. Woitzel and the other nurse asked if I spoke Spanish to her and he started speaking Spanish to me, too, but only for a couple minutes.

I was tested with the Biocom machine and tested to have a heavy load of Lyme. What a shocker, LOL!

After the testing, we went to the pharmacy and bought the nosodes for Lyme and the minerals, etc. for the IV after treatment. Then we came back and they taped the nosodes and two live vials of borrelia to our solar plexus, then we used the Bionic on the designated points. One person in our group is hyperthyroid, so she wasn't supposed to use it on her thyroid. Next we got the infusions.

The photon treatment (Bionic 880) felt really weird. It felt like you had an electrical current, not like a shock, but like a current. I also had various things flare, like shoulder pain. I used it on four spots on my head and almost couldn't take it any longer, my eyeballs felt weird, but I think that was the Lyme flaring .... nothing else has seemed to reach my eyes, which have gotten worse with Lyme. Afterward for a few hours I felt very strange. Not like a herx, but definitely different, almost strange.

This morning I felt horrible, absolutely horrible. Steelbone felt better this morning, but also strange last night where it was almost scary. It only lasted a couple hours for him. Willow Way felt toxic this morning, but felt better later. Steel has a heavy load like I do, but Willow has a lighter load. She has heavy symptoms, tests low for Lyme, but high at home for Epstein Barr.

As the day went on, I felt better. We all seemed to do pretty well this afternoon and got out for a while.

There are two other apartments here with Lyme patients. They all are seeing improvement.

Dr. Woitzel also does chiropractic. I lived a sitcom-like situation today with that ROFL! The nurse took me into his office, which is a large room and opens to the reception area. She told me to strip to my bra and panties. I asked if she had a gown for me, and she didn't, she expected me to just be in the room in my bra and panties. Well, I wasn't wearing the most conservative of panties, so said no. She thought I didn't understand, so went to get the other nurse. I still said no. Then Dr. W came in. He explained why he needed me to, and it made sense, but I said no, that it was a cultural thing. He understood then what the problem was. Here nudity is not an issue like it can be at home. It was rather hysterical later, but when it was happening it was uncomfortable for both of us.

If I had done it, Steel could have had some good pics of me to post on the internet since they open and close the door, LOL! I'll go back tomorrow and take some shorts that I sleep in ... so it will be a bra and shorts. Steel was fortunate to be wearing boxers.

Overall, it's going well. We've been finding good restaurants and getting good food. There's a little communication withdrawal, LOL.

Saturday, October 11, 2008

flying over

I'm at the airport waiting for my flight to Atlanta.  I'm a bundle of emotions .....

It's the longest I've been away from hubby in 24 years.  The goofy kids were sad to see me go.  I was sad to leave them all.

Yet at the same time I'm so anxious for the possibility of getting well.  Anxious in a good way about the idea of not feeling this pain all the time.  Anxious in a mixed way about getting back to living life fully ..... what will I do?  How will I get involved again?  In what?  I've been sick for years now and the prospect of a cure makes me anxious.    

I'm nervous to be going to a foreign country where I don't speak the language and to see a doctor who speaks mine in a limited fashion.

I'm really excited about getting to spend time in Europe, see another country, and live in their culture for a time.  What an opportunity!

My head is spinning .... I'm overwhelmed.  We left to go to Starbucks with the kids on the way to the airport ... I forgot my scarf and sweater so hubby had to drive home to get them while I sat at Starbucks enjoying the kids for a while.

Then I got to the airport and forgot my driver's license .... yeah, only those with Lyme would understand how that would happen!  At least I have my passport.  Unless Steelbone is reading this, he won't know until we get to Germany that he's going to have to be the one to drive ... ooops!  LOL

I'll keep you all posted ... I know you're all reading for different reasons .... family is reading to see how I'm doing .... Lymie friends are reading to see the same, but also whether it works.  I'll try to give you all the info you are all looking for.  :)  Just skim over the stuff you're not interested in.  I think I'll enjoy being on my soap box uninterrupted!  

Friday, October 10, 2008

Leaving tomorrow!!

Tomorrow is the big day!  I am so excited!

My goofy kids are not looking forward to my being gone for three whole weeks .... neither is Mr. Sixgoofy!  It's not that I'm looking forward to going or am excited to leave, it's that I'm excited to be well ... okay, I'll be honest, I'm excited to spend three weeks in another country, too.  

I have most likely had Lyme for 35 years.  I have a great immune system so was healthy most of the time though I had random symptoms for as long as I can remember.  I was disabled by the illness in 1982, 1986, and 1991.

Through my healthy years I would have weird issues .... like in the fall my shoulders would ache.  I thought I was just in bad shape and the heavy sweaters caused pain.  I would have terrible fatigue and wondered why everyone else wasn't as tired as me.  They were all problems that could be considered somewhat normal.

Then in 1982 when I was in college, I was so tired all the time that I just got up for class.  My roommate was very worried and took me to the emergency room where the doctor told me not to drink so much alcohol.  This lasted several months, then self-resolved with a lot of rest, exercise and sunshine.  Ironically, I had terrible insomnia despite the debilitating fatigue.

A repeat happened in 1986.  

In 1991, all of a sudden one day I had severe abdominal pain.  My sister and her husband were visiting during spring break (they were college students) and we were at the Children's Museum.  I had to go sit down for a while ... then I told them I needed to go home.  The pains were so severe I couldn't even drive.  By that night I was at the emergency room, but the doctors could find no problem with me.  They gave me IV fluids to help my low blood pressure, then released me.  

Six months later I was still experiencing extreme fatigue, but my doctor could find nothing wrong.  I was seeing a mercury free dentist ( and he told me about the possibility of mercury being at the root of my health problems.  I had my amalgam fillings removed and replaced with white fillings.  I had flu-like symptoms after the removal and took many supplements to help remove the metals from my system.  After this my symptoms resolved for 12 years.

I would have flare ups during pregnancy but other than that was very healthy and energetic.  People would ask how I did all that I did.  I ate a good diet, exercised, and took supplements.

About five years ago, I became very ill with what we suspect may have been psittacosis (I had all the symptoms, and the bird that died did, too).  I took 21 days worth of doxycycline at 300 mg. per day.  I had severe breathing issues, pain across my back, extreme fatigue, extreme weakness, fever, etc.   After the 21 days, I still felt bad, though the respiratory part of the illness had gone except for shortness of breath.  The shortness of breath would get so bad I would hyperventilate.

I slowly started working out again, got a lot of rest, ate right, and tried to get better.  We moved, and when we were moving our bed, we discovered it was full of mold.  We got a new bed, and I started getting better.  A short time later my knee started hurting so badly I had trouble bending it.  Stairs were difficult, and when I sat I had to keep it out straight.

I eventually went to the doctor for the air hunger and tested negative for asthma.  The doctor said I was just hyperventilating like it was no big deal.

More symptoms started coming up, symptoms that all seemed unrelated.  One of the more severe were GI problems.  I all of a sudden dropped 15 pounds in three months.  I had constant, severe diarrhea ... also stomach pains when I ate.  I eventually became weak and fatigued.

I had testing done for celiac disease.  The tests were negative, but I found that I felt better on the gluten-free diet so ate 100% gluten free for two years.  I continued to have symptoms and continued to get worse .... I eventually cut out other foods, but it didn't help.

My doctor diagnosed me with Somatization Disorder, so I started researching on my own to figure out what I really had.  I can't really blame her entirely for the psych diagnosis .... the symptoms are even incredible to me!  

Here's the list -  fatigue, night sweats, air hunger, heart palpitations, diarrhea, lack of appetite, weight loss, disorientation, mental confusion, getting lost driving, trouble reading, trouble writing, trouble talking, word recall problems, trouble falling asleep, trouble staying asleep, rashes, hair loss, bruising, TMJ disorder, weakness, joint pain, muscle aches, ringing in the ears, food intolerances, floaters in eyes, light sensitivity, sound sensitivity, touch sensitivity, mood swings, rage, rib pain, allergies, alcohol intolerance, etc.

Eventually through my research I discovered Lyme Disease.  I sent away for a test kit from IGeneX labs ( and took the kit to my doctor so she could run the test.  The test came back with 8 positive IgG bands.  She told me that I previously had Lyme but that now it was Somatization Disorder.

I went to an LLMD (lyme-literate MD) in NY for treatment.  He's a wonderful doctor and has gotten me on my feet again.  I have good days and bad days, but many of my symptoms have resolved.  What remains is fatigue, air hunger, insomnia, fibromyalgia pain, and GI distress.

Recently, I heard about a treatment by a doctor in Germany with an instrument called the Bionic 880.  Its a new technology using infrared light.  There have been promising studies done on it's use with cancer and Parkinson's patients.  The doctor who treats Lyme claims higher than a 90% success rate, so I thought that I'd rather spend the money to give it a try and find out that it does not work rather than wait and find out it does.

ILADS treatment ( is the best we have right now, but it's not a cure, the most we can hope for is remission.  I am hoping for better and am willing to give something new a try. 

Recently I discovered our new (now five year old) bed also has mold.  It seems that the mold exposure has been a big trigger for my Lyme symptoms and I have had trouble with the mold detoxification since we got rid of the bed.  I am hoping that the Bionic 880 treatment will help with the mold detox as well as with the Lyme.

Thanks for reading, I can't wait to tell you about my experience in Germany!