Bill’s Lyme Story

In 2009, I was a 40 year old, and I had enjoyed nearly perfect health my whole life. Two years earlier, my wife and I and our baby daughter moved to a new house with a very wooded back yard.  Being in the back yard was like being in a park, and we thought it would be a great place to raise a family.

But the fall of 2009 was a rough time. I was very busy working full-time, working on my MBA, and my wife and I had a young daughter at home.  But I also suffered two personal losses, and during that time, I remember having the flu for about a month, and I started to experience strange pressure headaches.  Before this my headaches were always easily treated with Excedrin, but Excedrin did nothing for these headaches. But Ibuprofen did relieve them, leading me to the conclusion that it must be sinus pressure.  I also had a brain MRI to rule out a tumor.  Nothing was found, and the flu and headaches seemed to go away.

In February 2010, we had a very bad winter, and all the snow on our roof created an ice dam leading to water damage. Water ran in through our walls in our upstairs bedrooms.  I received conflicting opinions on how to handle the water damage.  One restoration company said that because the inside of the walls had remained wet for nearly a month, they must be opened up and all the drywall/insulation replaced.  My insurance company was not of that opinion however.  A second restoration company said that opening up the walls was not necessary, that the walls were all dry now.  Having never experienced water damage and having no appreciation for mold, I took the conservative advice and did nothing.

In spring of 2010 I was taking a class working on my MBA, and started to notice more strange symptoms. My eyes began to twitch, and I noticed a very strong odor in the classroom where we were meeting.  In talking with other students, it seemed I was the only one who smelled the odor.  Then I started to notice odors in the upstairs of our house, and my eyes and sinuses started burning when I was upstairs.  No one else in my family smelled anything or was affected by the upstairs of the house.

Quickly I started thinking I had made the wrong decision about the house and not replacing the walls. I had the first of many molds tests by a local home inspector, and he declared the mold levels were normal.  But since the house was bothering me so much, I decided to go forward with opening the walls.  By this time restoration companies weren’t interested, since it was no longer an insurance job.  So I hired a plasterer to replace the walls where the water had come in.  When he opened them, he did not find anything that he thought was mold.  However, all the pink insulation had turned black.

In summer 2010 my health continued to worsen. My headaches were constant, but since Ibuprofen worked so well, it wasn’t a major concern.  I was tired and fatigued, but since I wasn’t an extremely active person, this wasn’t a major concern either.  But my sensitivity to the house was a major concern, and I complained that my sinuses were burning anytime I was in the house.  I spent a lot of time outside that summer, and when inside, I insisted on windows being open.  The work we had done to the house did not help at all.  However, my wife and daughters were not affected by the house (we adopted our second daughter around this time).  I went to see an allergist, who did not find any major allergy, and said I should simply “air out” the house.  I also saw an ENT doctor but found no relief for the burning.

In fall 2010, I was getting more desperate realizing I would soon have to spend more time indoors. We added an electronic air cleaner to our HVAC system, and had more mold testing done.  This time the mold levels were elevated, but the company that did the testing didn’t really have a solution on how to lower the levels, and simply said to run more air filters.  They reluctantly agreed to open up the walls I had earlier that year replaced, but they did not find anything.  I dropped out of the class I was taking because I just didn’t feel well enough to take it.

By winter 2010, I felt like I had no energy at all, and started having a lot of pain, including chest pain that landed me in the hospital, but there was no indication of a heart attack or heart disease. I started losing weight really quickly, and by summer of 2011, I had lost 50 pounds.  Also the burning sensation I felt in my sinuses started to spread over a large portion of my body, my back, chest, and forehead also burned.  Because all of these symptoms seemed to start after our house was water damaged, my thoughts were mostly on mold and environmental illness, and at this point I did not suspect Lyme disease.  My sensitivities got much worse as well, and I was becoming bothered by more and more places, including my parent’s house and the office where I worked.  At first, because I had such a good track record, my work was understanding and told me I could work from home as much as I wanted.  Perfume, cologne, fabric softener, car fumes were all things that I was sensitive to, but sensitivity to mold and musty places topped the list.

At this point, it seemed like the bottom was falling out of my life. I started to experience high anxiety and emotions, and I cried a lot.  I often stayed with friends since my house bothered me so badly.

I started to see a large number of doctors in late 2010 and early 2011. A gastroenterologist to hopefully explain my weight loss.  A neurologist to possibly explain burning in my sinuses since ENT doctors could not explain it.  Several natural doctors, whose theories on my condition included fungal infection, mold sensitivities, liver problems, and colon problems.  No one was able to help.  I also saw a dermatologist, who said I had psoriasis, so that was a possible explanation to my burning skin.

I went to see an integrative doctor who treated environmental illness. He focused on mold and the theories of a well-known mold doctor, and did many of the tests that this mold doctor recommended to run.  But he had difficulties interpreting the results.  He also suggested I have his allergy testing done, which is much different than conventional allergy treatments.  The allergy test showed a few food allergies, and mold allergies, which was no surprise.  But it turned up something else…an “allergy” to Lyme.  I asked the person running the test what it meant, and she said “you have about a 98% chance of having Lyme disease”.  This was the first time anyone had suggested I might have Lyme disease.  But when I had a western blot and it was negative, I didn’t pursue Lyme as a diagnosis.

I also consulted with a natural doctor who suspected that mercury poisoning from my fillings was causing my problems. I checked my dental records, and figured out that I had 3 mercury fillings in 2009 and 2 in 2008, so the timing did make sense.  I proceeded with having my fillings removed from a dentist trained in the procedure.  This doctor also had experience interpreting the results of the tests recommended by the well-known mold doctor that I had done, and told me that I had the mold sensitivity gene. This doctor also tested me for Lyme, the test he recommended was called My Lyme Id, and the result were negative.

In summer 2011, without having a medical explanation for my problems, and not being able to figure out a way to solve the problems I was having in my house, my wife and I decided it would be best to move to a new house. We moved to a 20 year-old house nearby.  We hired an inspector who was recommended by one of my natural doctors because this inspector was supposedly good at finding mold problems.  I knew there was risk of mold contamination, so we decided not to bring our couches and mattresses, but brought much of our other furniture, clothes, kitchenware, and toys.

As luck would have it, I felt much much worse in our new house. I then started a new round of mold testing, and the basement tested somewhat high for mold.  I started treating with a new natural doctor who treated me with vitamin C and glutathione IV’s.  These IVs helped a lot, but the help would only last for a few days after receiving the IV.  I brought up the possibility of Lyme to this doctor as well, but he dismissed the possibility, but did treat me for yeast problems. Money was starting to become an issue with all the money I was spending on mold testing, home improvements, a new house and natural doctors and their treatments.  Also around the time we moved into our new house, my employer was growing frustrated with me working from home all the time (although I really was working from Panera Bread, Starbucks, or anywhere else I could get Wi-Fi since I couldn’t stand to be at home) and declared I must come in the office every day.

In the fall/winter of 2011, still thinking mold was my main problem. I decided to go see the well-known mold doctor whose tests I had already taken. Most of this doctor’s treatments start with getting away from the mold.  So he put me in touch with his recommended mold remediator to work on my house.  This guy gave me the choice of him coming to our house (which would be very expensive) vs. consulting with him on the phone.  So we started tackling the problems in our house remotely.  I wasn’t sure what to do about the mold exposure in my workplace I suspected I was getting though.  The only treatments the mold doctor would give while still being exposed to mold were CSM for detox and rifampin for MARCONS.  His mold treatments would not work if you were still exposed to mold he said.  I couldn’t see a lot of improvement from the CSM.  However, the rifampin started to relieve the pressure in my head, making me think about Lyme disease once again.  When I asked about Lyme, he said I tested negative, end of story.  When I asked him his theories about the pressure in my head, he didn’t have one.

I also was talked into going to the Cleveland Clinic late in 2011. This was a complete waste of my time.  One doctor had me very frustrated when she suggested that my 70 pounds of weight loss was merely stress-related.  The only suggestion I had when I left there was to take ibuprofen.

In early 2012, my old pastor recommended a natural doctor in the Chicago area. I phone consulted with him, and he asked me to fill out a questionnaire with all my symptoms.  By this time, my main complaint was pressure in my head, as well as back pain, jaw pain, burning on my skin and sinuses, and all my sensitivities. Brain fog and problems thinking were real problems as well.  I also had serious anxiety and emotional problems, which included crying a lot and going into rages.  I often thought about killing myself but because of my Christian faith and having 2 small children I never went through with it.  He emailed me back and said that it was a no-brainer, I had Lyme disease.  So he began to treat me with herbals (Banderol/Samento) and oral hydrogen peroxide.  But I didn’t get much relief from this treatment so I still wasn’t sure if I had Lyme or not.

I was still phone consulting with the well-known mold doctor in early 2012, realizing he wasn’t going to treat me until my house and workplace tested free of mold. He had me do a “stealth” mold test in my office, and it indeed tested very high for mold, much higher than my house.  Of course it wasn’t bothering any of my co-workers, that I could tell, and if this mold doctor’s theories were right, 25% of the people working there should have been sick like me, but I could not find one person that thought they were sick.

Although I didn’t feel that his mold remediator had made a big difference in my house, he felt otherwise. The mold doctor focused on my workplace and put me through what he called a “reexposure” test to try to prove to my employer that mold in the workplace was making me sick.  Basically I was tested after being out of the office for a period of time, and then repeated the same tests when I went back to the office.  But Quest ran the wrong set of tests and when the doctor’s office implied it was my fault, I was frustrated and stopped calling.  I just couldn’t see a way I was going to get away from the mold in my office, and couldn’t see a way of finding a new job because of all my current baggage.

We made plans to sell our house again, once again not finding a way to solve the sensitivities I was experiencing. We decided the only solution would be to build a new house, and this time, making sure it was built right so that water damage would be highly unlikely, and also this time, doing a better job of cleaning our stuff, and where cleaning wasn’t possible, replacing it.

Since Lyme kept coming up as a possible explanation for my problems, I decided to get in touch online with a local Lyme support group. Actually, the one in Pittsburgh had disbanded, so I got in touch with one in Ohio.  They were very very helpful and recommended an LLMD in PA about 2 hours from where I lived.  This LLMD had me do a lot of blood work before coming to see him for the first time.  On my first visit we reviewed the blood work, which included another western blot which was again negative.  He sent me home with Amoxicillin and an IGenex urine test.  The next month I came back and got the results of the IGenex test.  At that point, after years of no solid explanations about what was wrong with me, I really did not expect to test positive.  I was shocked when I did test positive for Lyme using this test.  I called me wife, and when I asked her to guess the result, she said negative.  She was equally shocked when I told her I tested positive.  It was so great to finally have some explanation about what was wrong.  I did not recall being bit by a tick, but I speculate that sometime in 2009 when my problems began, I must have been bitten and not realized.  My wife and daughter were also bitten by ticks in our lovely wooded backyard so it was a plausible theory.

Why did I contract Lyme, but not my wife or daughter? I believe I was hit by a perfect storm that left my immune system susceptible.  First I had a lot of dental work in 2009, and mercury is toxic and immune suppressive.  Next, I had the mold-susceptible gene, and our house developed a mold problem in the beginning of 2010.  Also I suffered personal loss in 2009, and I was burning the candle at both ends, working full-time, working on my MBA, being active in my church, and trying to be a good dad to young children.  Also, because they found their ticks, they were treated with a short course of antibiotics just in case.

Over the next 6 months, I treated with my LLMD using various antibiotics. I also went to see a chiropractor twice a week and used a rife machine at his office.  I also followed the Buhner herbal protocol for treating Lyme (Cat’s Claw, Japanese Knotweed, and Siberian Eleuthero).  At the end of 2012, I could finally see the light at the end of the tunnel.  All of my symptoms were improving, and my complaints about the house were disappearing.  I think that my sensitives were improving, but also the work I had done to my house really was paying off.  My employer started allowing me to work from home again, saying that my work had improved.  My wife and I were about to take the house off the market when we received an offer on it.  We decided to go ahead with our plans to build a new house so that we would have complete peace of mind that our mold problems were behind us.

The next few years were up and down, with mild relapses and improvement. I have never completely recovered, but I estimate my recovery at about 80%, which is thankfully enough to live a normal life.  I saw 23 doctors in all.  I am haunted by the thought that if any one of the many doctors I had seen early on were educated on how to recognize and test for Lyme, I could have avoided most of this story.  So this motivates me to get involved with Pittsburgh People with Lyme disease and do my best to educate people about Lyme disease.