I had Bacterial Miningitis twice as an adult.

If you find yourself having recurrent meningitis, you should look into Mollarets Meningitis.

Roger Hampton's Story - 2007/2008
On May 15th, 2007 I was hospitalized with Meningococcal Meningitis. I hadn't been physical with anyone (kissing or otherwise) nor had I shared food or drink with anyone. I wasn't in a foreign country or anywhere exotic. I was simply going from my office in Irvine, CA, 13 miles away, then back to my home in Laguna Beach. It started with a dull headache I couldn't shake but was not painful enough to keep me from normal activity. 24 hours later, I thought I was coming down with the flu. Approximately 48 hours after that, I started vomiting and had diarrhea. I couldn't keep a sip of water down and noticed strange spots on my feet. By the time I realized I was in trouble, I was alone and collapsed reaching for the phone to call for help. I laid incapacitated on the floor for the next day and half until I was discovered by friends. When they found me, I was completely dehydrated. My feet and hands had swollen to three times their normal size. My eyes had rolled back and were gray, like a dead fish. My body was covered with purple spots. Blood was coming out of my mouth, nose and ears. When the paramedics arrived they had never seen anything like this. My vital signs were weak and they didn't think I would live more than 10 minutes.

I was rushed to Mission Hospital in Mission Viejo. The ER doctor recognized the problem and began tests, including a Spinal Tap, to confirm Meningitis. A recently approved antibiotic mentioned later was injected into my juggler and pumped into my body for the next hour. I was quarantined and put on life support for the next couple of days. The advisory from the Center for Disease Control (CDC), was that everyone I had came in contact within the last 72 hours needed to be contacted immediately to prescribe a 500 mg dose of Cipro as a precaution.

I have very little memory of this. I remember people around me dressed in protective clothing asking me if I knew who they were. Their voices sounded familiar but I was too delirious to identify them. I am told that I managed to write something that had to do with my work but I have no recollection of this. The next week was touch and go. The prognosis was if I survived, I would probably suffer brain damage, I could end up blind or deaf and I could lose one or more of my limbs. Some of my friends that visited me has since told me they never thought I would survive because I looked so bad.

The pain I experienced was horrific. The sensitivity of my skin was so extreme it felt like razor blades slicing into me any time I was touched or from any vibration while being moved on a gurney. It took weeks before my hands and arms started to function properly from my extreme dehydration. The fever that contributed to my delirium varied from 100 to 104. My upper body was surrounded by ice packs, which also added to the pain of anything touching my skin. The doctors were concerned that the prolonged fever could affect my brain or increase the possibility of brain damage. It lasted on and off for two weeks.
The disease seemed to affect my lower body the most. My legs were paralyzed from the pain for weeks. For four weeks I couldn't turn over in bed or push myself up in the bed. I remember taking 30 minutes to move 1/4" and breaking out in a sweat from all the effort it took. Naturally, the nurses would help me, but the pain was worse when someone helped me so I was motivated to keep trying to move a little further each time on my own. This proved to be rehabilitating as time went on. I'm not by any means saying I did this on my own except at the beginning. The rehab nurses had to visit me daily to exercise my limbs and massage my hands and feet to keep the circulation flowing. It is not uncommon to lose limbs with this disease. The doctors were talking to me about the possibility of amputating my hands and feet if the damage was too severe to them. I couldn't comprehend this and maybe that was part of the recovery. I just didn't accept the idea. I think it was a bit subconscious healing that helped the recovery.
The rehab program consisted of simply moving my hands, arms, legs and feet at the beginning. Next was trying to stand. I'm not exactly clear when I stood for the first time but I think it was around week 4. I remember feeling like two canons of nails were shot through the bottom of my feet into my legs and I almost fainted.
I kept getting really bad headaches and had to endure numerous CAT scans and MRI's. This meant having to be moved onto a gurney and traveling to other floors which was excruciatingly painful. The doctors wanted to be sure I wasn't getting headaches from any traces of the disease so the next thing to do was to have another Spinal Tap. Spinal Taps were necessary to check my spinal fluid for any traces of the disease. To do this you have to be awake with no anesthesia. They insert a hypodermic needle into your back to draw the fluid. Very painful when you're healthy. In the shape I was in, forget about it. They had to perform three of these to make sure it was gone. The culprit ended up being one of the 14 medications I was on. Neurontin was causing my headaches.

I had very little appetite and was losing weight at the rate of about 10lbs a week. I'm 6'0 tall and weighed 175 lbs before the disease. 5 weeks into this I weighed 125lbs. My knees were bigger than my thighs and I had no calves. I looked like I had aged 20+ years. The first time I saw myself in a mirror was around week 4, and I was shocked. I have to hand it to my friends and family for keeping their game face on and not showing how bad I looked. At four weeks, they said I looked a lot better than I had a couple of weeks prior. I can't imagine. Chocolate Ensure is all I could tolerate and it helped me to build up an appetite later to start eating solid food again.

I was discharged June 23rd, 2007. I was re-admitted to the hospital the next day because we couldn't break my 104 temperature. It finally broke the next afternoon and I was released again to return home. Still to weak to walk, I was bedridden for the next few days. I stopped all the medications cold turkey and started taking OPC-3 (an antioxidant-vitamin-mineral drink derived from grape seeds) and a concentrated form of B12 in water. I started walking a few steps to the restroom and then to the kitchen, etc. Little by little, I kept getting stronger. Distance was a problem, as was balance so a walker was essential.
The other thing I wanted to mention is to be careful when you're coming off the drugs. It can be very depressing. Stay focused on recovery. Even if you just get one foot out of bed, count it as a win. It helps. Progress comes slowly. Having a strong support system was also important. Sometimes I felt so alone. My family and friends made a difference. The experience has had a profound impact on how I view the world. I appreciate life so much, in such a different way, it is difficult to put into words.

My weight started coming back over the next 3 - 4 months. It's been 10 months now and I have all my weight back plus 10 lbs. I have joint pain but not chronic. I have a few scars on my legs and feet. The scars are tender to touch and I get a tingly sensation as if my feet are asleep, which is a bit painful. I've recently gone back to the gym and everything seems to be working pretty normal. I still feel stiff in my knees, ankles, feet and elbows. I've been tested for Rheumatoid Arthritis and it is negative. I feel stiff the most when I've been sitting, standing or laying down from more than 20 minutes. Fatigue is still an issue, but is improving. There is no evidence of damage to my fingers and toes, hearing, eye sight or brain function. Isn't that incredible?

If you met me today you wouldn't know I suffered from this and people are shocked to hear how bad it got. I called the CDC to ask, "Why me?" I was running 3 days a week and working out at the gym 3 days. I was in great shape and was living pretty clean. Why me? Their answer was that it was a freak thing. Very rare. 3 to 5 people in all of Orange County had been reported in the last five years. Last year when I got it, 7 cases by the month of June had been reported, doubling the number. There's a website called www.fightmeningitis.com that provides information now. The information below answers FAQ's I researched I hope you'll find helpful.

What is meningococcal disease?
Meningococcal disease is a bacterial infection that can cause meningitis, sepsis, pneumonia, or joint infections. Meningococcal disease can be quite severe and may result in brain damage, hearing loss, or loss of limbs. Meningococcal disease is one of the leading causes of bacterial meningitis in the United States.

What are the signs and symptoms of meningococcal disease?
Signs and symptoms of meningococcal disease include high fever, headache, stiff neck, or a development of a dark purple rash. These symptoms at first may appear similar to other illnesses such as the flu, but the symptoms progress rapidly and persons with meningococcal disease can be seriously ill 12-24 hours after symptoms start. A small infant may only appear slow or inactive, or be irritable, have vomiting, or be feeding poorly.

How is meningococcal disease diagnosed?
Early diagnosis and treatment are very important. If symptoms occur, the patient should see a doctor immediately. The diagnosis is usually made by growing bacteria from a sample of spinal fluid or blood.

Can meningococcal disease be treated?
Meningococcal disease can be treated with antibiotics and supportive care. It is important, however, that treatment be started early in the course of the disease. Even with appropriate treatment, there is a 5-15% chance the patient will not survive. Of people who do survive meningococcal disease, 10-20% have serious long-term effects from the illness.

Is meningococcal disease contagious?
Yes, meningococcal disease is contagious, but only when a person has been in very close contact with a person who becomes sick, such as a household member or a girlfriend or boyfriend. The bacteria are spread through the exchange of respiratory and throat secretions (i.e., coughing, kissing). The bacteria are ot spread by casual contact or by simply breathing the air where a person with meningococcal disease has been. Persons who have been in close contact with a person who develops meningococcal disease should receive antibiotics to prevent them from getting the disease. Meningococcal disease is a reportable disease and the local health department will work with the case's doctor and family to determine who should be treated with preventive antibiotics.

Are there vaccines that protect against meningococcal disease?
Yes, there are vaccines against some serogroups of N. meningitidis. There are two vaccines against N. meningitidis available in the U.S. Meningococcal polysaccharide vaccine (MPSV4 or Menomune®) has been approved by the Food and Drug Administration (FDA) and available since 1981. Meningococcal conjugate vaccine (MCV4 or MenactraT) was licensed more recently for 2-55 year-olds. Both vaccines can prevent 4 types of meningococcal disease, including 2 of the 3 types most common in the U.S. (serogroup C, Y, and W-135) and a type that causes epidemics in Africa (serogroup A). There is not currently a vaccine to prevent the third common type of meningococcal disease. But they do protect many people who might become sick if they didn't get the vaccine.

MCV4 is recommended for all children 11-18 years old, ideally at their routine preadolescent visit (11 to 12 years of age). For those who have never gotten MCV4 previously, a dose is recommended at high school entry. Other people at increased risk for whom routine vaccination is recommended are college freshmen living in dormitories, microbiologists who are routinely exposed to meningococcal bacteria, U.S. military recruits, anyone who has a damaged spleen or whose spleen has been removed; anyone who has terminal complement component deficiency (an immune system disorder), anyone who is traveling to the countries which have an outbreak of meningococcal disease, and those who might have been exposed to meningococcal disease during an outbreak. MCV4 is the preferred vaccine for people 2 to 55 years of age in these risk groups, and MPSV4 is preferred for, adults over 55 who are at risk.

Although large epidemics of meningococcal meningitis do not occur in the United States, some countries experience large, periodic epidemics. Overseas travelers should check to see if meningococcal vaccine is recommended for their destination. Travelers should receive the vaccine at least 1 week before departure, if possible. Information on areas for which meningococcal vaccine is recommended can be obtained by consulting with a traveling provider or visiting CDC's Traveler's Health website