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Interview with Leesa Shanahan – Sarcoidosis (Heerfordt’s Syndrome), Uveitis
Posted By Amy Proal On November 19, 2007 @ 6:27 pm In interview (patient),marshall protocol | Comments Disabled
While alone in a foreign country, this mom from Houston Texas began to suffer from an array of debilitating symptoms. Soon, she was diagnosed with sarcoidosis. Despite the fact that she had to care for three young children, she successfully started Autoimmunity Research Foundation’s Marshall Protocol and today, about two years later, is active once again. Meet Lisa Shanahan.
It all happened very suddenly. Before becoming symptomatic, I considered myself very healthy. I was even preparing to run my second half marathon after completing two full marathons. My husband and I had decided to adopt a baby from Guatemala. We went down to Guatemala to see our son for the very first time. The next morning I woke up and my face was swollen. I didn’t know what to make of it. At the same time, two large lumps appeared on my arm, at my inner elbow area. Upon returning to the US that next week, I saw two different doctors that informed me that I had allergies and not to worry, so I went on with my usual routine. They gave me a small steroid dose pack to decrease the swelling.
A few weeks later I returned to Guatemala in order to finish the process of adopting our son. Since the process takes time, I chose to go live in Guatemala with my twin daughters, who at the time were 3 1/2 years old, so we could have our son live with us instead of in foster care. During that time I was completely on my own. I started to become more symptomatic. My face began to swell again, especially around the area of the parotid gland (near the jowels). Then, I started to have problems with my eyes My vision became fuzzy and I saw what seemed like blind spots. The loss of my vision was very scary. “What is wrong with me?” I thought. I saw three different doctors in Guatemala, none of whom could give me an answer.
One day I walked right off the street into a doctor’s office and asked him to take a biopsy of one of the lumps on my arm. I got the results of the biopsy, but since they were in Spanish and my doctor was on vacation it could not be translated, so I just stuck the papers in my suitcase. When I finally signed the adoption papers I could barely see. By then, not only was my vision affected, but my eyes felt extremely painful, hot, and swollen. I went straight from the embassy where I signed the papers to an eye doctor in Guatemala City. He diagnosed me with uveitus and explained the disease. He gave me a steroid eye drop and sent me home. Soon after that my kids and I went back home to the US.
Immediately upon our return to the US I saw several doctors. The nurse at the first office translated the results of the biopsy that had been taken in Guatemala. The verdict: sarcoidosis. But my doctor refused to accept the results of a biopsy performed in Guatemala and insisted that the procedure be repeated. Two weeks later the results from the new biopsy came back with the same diagnosis. I was also re-diagnosed with the eye disease uveitis by another Opthamologist who explained that uveitis is common in sarcoidosis patients (I now realize that is because both diseases are the result of infection by L-form bacteria).
Sarcoidosis sounded like a death threat (and was, because it’s a deadly disease.) I couldn’t even read or spell the word sarcoidosis, yet I couldn’t look it up online because I still could barely see. My only source of“relief” was that the disease was not in my lungs. I was informed that the kind of sarcoidosis I had (called Heerfordt’s Syndrome) often doesn’t end up affecting the lungs, at least for a long time.
My doctors performed test after test. I went to over 50 doctor appointments that first year. Finally, they informed me that there was basically nothing I could do to get better, and that I would probably never recover. Maybe I would go into spontaneous remission (which I now realize does NOT happen), and even so, my parotid glands could be swollen for the rest of my life. They did put me on the corticosteroid medication prednisone, as well as the medication methotrexate, and more steroid eye drops. The temporary immune suppression from the steroid eye drops and the prednisone made my symptoms improve for short periods of time but the uveitis would always come back as I tried to wean off the eye drops. The only way I could make it go away again was to resume steroid eye drops – something that I really didn’t want to do.
A friend of mine knew about the MP and sent me an email about the treatment. Meg Mangin, one of the nurse moderators also knew my friend. So, through this grapevine I was able to get Meg’s number and talk to her on the phone about the MP. Her insights were very encouraging and she referred me to the MP website where I could read and learn more about the details of the treatment.
To be honest, when I sat down and read about exactly what the MP entailed, I literally started to cry. I had no idea how I would be able to manage my immunopathology and correctly adhere to the light restrictions when I had to take care of three young children. The MP guidelines also state that patients must stop taking all supplements but I was a heavy supplement user. In fact, it’s my livelihood – I am an independent distributor for a health and nutrition company. I really thought that if I started the MP I would never make it. But the only other option was to stay on steroids, and I knew that either the steroids or the illness would eventually kill me.
I pulled myself together and decided that I would just have to make the MP work, not only for me, but for my family. I figured that if I didn’t try it, I would never know whether or not it was possible to succeed. I stopped all my supplements and I also totally weaned off all my medications except for a few eye drops. Everything that the MP guidelines said to do, I did perfectly. My doctor wouldn’t put me on the MP so I said, “you’re fired!” and proceeded to find one who would.
I wrote a letter to all my family and friends basically telling them that I was entering a state of hybernation and quitting my activities. I was very serious about outlining how the antibiotics might affect me and cause my symptoms to flare. But I also included the best-case scenario for how taking these measure would help me – I would slowly come back to life and then become completely better.
At about 6 months into the treatment I realized that perhaps the hybernation wasn’t completely necessary and that I should try to re-enter life. I found that I could hold up just fine. Of course, there were occasional setbacks, especially if I got too much sun. One time a granuloma appeared on my eye, but I knew it was just a result of my immunopatholgy and, as expected, it went away.
One thing really surprised me – after starting the MP I never had signs of uveitis again. My inflammation went away, my vision cleared up immediately. I was able to wean off all my steroid eye drops. At the moment I only use up to one eye drop a day. But it’s not a steroid drop and I only need it on days that I am exposed to a lot of sun or bright lights.
About a 1 1/2 years into the treatment I was able to start wearing contact lenses again – something I had been unable to do since I developed my sarcoidosis symptoms. It was great! I was able to wear the smaller more stylish NoIRs (sunglasses).
After emerging from hybernation I decided that I was going to try to live as normal a life as possible while still on the MP. So I get a reasonable amount of sunlight which sometimes flares my symptoms. After all, I live in sunny Houston Texas. So it’s hard to tell exactly how recovered I am – probably around 80%? I lead a pretty normal life and know that I am on my way to a full recovery.
The face swelling and lumps have completely disappeared, and as I said the before, uveitis is no longer an issue. Mentally, I’m a totally different person than I was 3 ½ years ago. I joke that I’m the cheapest date ever because no matter what I do I have a blast. After conquering my illness, every other source of worry seems pretty trivial. If I’m running behind schedule I just think, “well, if I’m late, I’m late.”
I’m always running around and doing activities with my kids – I watch them play sports, I take them everywhere. All my kids celebrated birthdays in July and we had wonderful indoor roller-skating and ice-skating parties. During my first year on the MP, we actually had the kid’s birthday party at an outdoor Cowboy Ranch that had a nice covered riding area. Recently, I was taking a Spanish class twice a week since one of my life goals is to be fluent in Spanish and I had to put it on hold while I was sick. Most importantly we have started going back to church as a family and we have started going to Sunday school classes. I just wear a hat in church and ask them to dim the lights in the Sunday school class. I’ve also started to work more again, I work about 10 hours a week at home, right around my family!
We moved to a more wooded area to support my new lifestyle. With all the tree shade I am able to do almost EVERYTHING! I just bought new bikes for me and the whole family, so that we can bike through the forest near out house. I go on walk/runs every day alone or with the kids. I’ve also started doing yoga again which makes me feel good both physically and mentally. I’m even lifting light weights at the gym on a regular basis.
Looking back, I realize that all my life I’m been sensitive to sunlight. I was a heavy sunglass wearer. When I started the MP the light sensitivity increased, to the point where I even had to change the lighting throughout the house and in my garage by putting in lower watt bulbs. But it’s gotten better. At this point very bright fluorescent lights still bother me and when I’m in the bright sun I still wear sunglasses. As far as clothes go, in the sun I can get away with wearing longer pants, a light shirt over my t-shirts and a cute little hat. I go outside when it’s sunny as long as there is a covering or shelter that I can stand under. I think that the heat from the sun actually flares my symptoms more than the light itself (heat from the sun also causes vitamin D production in the skin).
As I stated before, we recently moved to a very wooded area so that it’s easier for me to go outside during the day. There are many shady wooded parks by our house where I can take the kids. In many ways, I am a different person during the winter and during the summer. During the winter, I don’t turn down any sort of activity. In the summer I am more careful about my plans because of the light.
My doctor is pleased about my progress. He believed the MP would work from the beginning! He lets me lead the way, as far as making changes in my meds or adding a bit of sun or trying something new, but gives tons of great advice when necessary. He is the person who most encourages me when I need it.
As mothers, we do so much for our children. We are essentially advocates for them – if something were to happen to them we would pursue the issue over and over again looking for a solution. But often, for some reason, we don’t act this same way when it comes to ourselves. But it’s important to realize that you can only be the best parent you can be if you are as healthy as possible. So you need to become an advocate for yourself. Do whatever you can to get better because you need to be there for your children. If doctors say they can’t help you then keep looking, don’t stop. If you can’t find an MP doctor in your area then drive a long distance to reach one or even fly to their office. Getting your health back is that important. I have to drive over an hour each way to visit my MP doctor but it’s worth it. As a matter of fact, I have put him in charge of the health of all three of my kids, so I am putting a lot of miles on the car to see him.
When it comes to the MP, you are in charge of your own health and you can make it work. When I started the MP, I paid one of the school teachers to drive my kids to school. I did not know her well, but had faith that it was the best decision. I went from being an overprotective Mom to someone who had to put faith in a person I didn’t know. I found the driver by calling our school, explaining my situation, and asking for help. And if I hadn’t been able to find someone to drive the kids, I would have pulled them out of school until I got well enough to drive them again. Staying on prednisone and wasting away was just not an option. Eventually I also hired a nanny to help out around the house.
Of course there were times when it was tough because I couldn’t participate in family activities. At first, I had to watch my husband take the kids to the zoo while I stayed at home. But then we got creative and thought up activities where I could participate. For example, we set up our tent in the backyard and went “camping.” We even made a big fire pit where we could roast marshmallows. It was fun! We did the best with whatever we had. There are lots of indoor things to do if you just look around and plan well.
I was honest. I said, “Mommy is sick, but she is going to get better.” It was easy. They accepted any changes that had to be made. They just wanted me to get better.
I wouldn’t say I was ever skeptical about the MP but sometimes I had doubts, – particularly about how long the treatment would take. When I attended the conference I met so many other people, many of them whom had been much sicker than me and were leading normal lives again. From that point on, I was confident that I could recover at the pace that I had mapped out when I started the treatment – basically seeing improvement every six months and feeling normal again around the 3-year mark. So far, I’m right on track.
I also attended the conference six months into the MP, right around the time when I was thinking about emerging from my state of hybernation. At the conference, I saw that many people experiencing immunopathology were still leading fairly normal lives. I saw that others were able to adapt the guidelines to suit their own lifestyles.
This helped me realize that it was ok to experiment. If I pushed myself too hard it wasn’t going to kill me. I needed to explore what level of activity I could tolerate while on the MP, not just assume that I couldn’t do anything. I realized that I was the only one who could figure out what I was capable of handling so it was ok to test myself.
Many people have asked me that. My answer is that I’ll never know. It’s possible that I am where I am today because I took such extreme measures at the start. But I tend to think that I probably didn’t have to be so hard on myself.
I want to run again, definitely 5K and 10K races, maybe one more marathon, but most importantly I want to run races with my children. I want to be physically fit with them. I’m already getting there. We just signed up for our first Jingle Bell Family Walk! It is 2 or 3 miles and since it is during a cooler time of year (December), I should be fine as long as I wear my hat, NoIRs, and long sleeves!
I’d also like to go on an annual beach vacation with my family and not have to worry about the sun. Not that I would seek the sun, but I look forward to reaching the point where I don’t have to cover up as much. I also want to raise my kids to realize what I have learned – that they are in charge of their own health and happiness and need to take action on their own if something happens. But when it comes down to it, I just want to lead a normal life with my family. Happily, I am almost there.
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