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Old 05-07-2010, 01:24 AM #1
biggunks biggunks is offline
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10 yr Member
biggunks biggunks is offline
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Join Date: May 2010
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Default New to Forum/My History

This is my inaugural post and is very lengthy. Much of the history and symptoms I describe may or may not be related, but I felt I should include it all for completeness. I've always had a long history with strep throat. I had it several times a year growing up. I recall my mother telling me that I was once even tested to see if I was a carrier of strep. I also seemed to be a big fan of ear infections. I recall having tubes growing up and I want to say I had them twice when I was young in addition to a ruptured eardrum much later in the 7th grade. In preparation for the tubes, the doctor also removed my adenoids at the time. However, I still have my tonsils.

When I was a sophomore in high school (1995?, age 15?), I got yet another strep infection that I think started me down a new path health wise. While on medication, I went on a school trip for a week. As responsible as teenagers always are, I quite taking my medicine (augmentin?) when I started to feel better. About a week later, I was in the hospital with what we first thought was appendicitis because of the intense pain. However, it turned out the pain was caused by intestinal blockage that resulted from scarletina (scarlet fever). Within a few days, I was back to normal and back to my teenage life. Around this time is the first memory I have of having a tic. This first tic was a flexion of my neck muscles. I attribute my prominent trapezius muscles and thick neck (I wear an 18 inch collar) to this, but this is only anecdotal. Around that time, I also began constantly clearing my throat and "hard" blinking. Obsessive behavior, such as numbering my socks so that they will always be in the proper pair (1A with 1B, 2A/2B, etc), began to appear. Again, as a teenager, my priorities were elsewhere and I don't have a great recollection of symptoms, tic intensity, etc for those years. However, I do know that it seems some level of tics are always present but the level seems to increase and decrease in severity. I've learned to steer from the odd obsessive behavior into more productive areas to focus. Focusing on only one or two areas at a time, I dived into weight loss (going from 230lbs to 185), strength training, jogging, martial arts, courses in biological/health sciences, work, etc. This focus has helped me to do very well in the areas that I focus in. Some might suggest I focus on family. I'm in a great marriage and have two great kids. However, I've made a conscious effort to never focus the obsession towards people because the intensity would most likely ruin relationships.

In 2003 (23 yoa?), I developed what appeared to be the worst case of both the flu and strep throat I'd ever had. Within a few days, I thought I was having a heart attack and was hospitalized with acute myocarditis. The doctors thought the inflammation of my heart was viral, but I never heard from the cardiologist or infectious disease doctor if they had ever found the cause. A heart catheterization was also performed to check for blockage, but there was none. Luckily, I made a full recovery and was back at work two weeks later. A year later, I went back to the cardiologist for a full workup and was told I was in great health and showed no signs of cardiovascular disease.

Now (May 2010, 31 yao), I've begun to look more into my tics. Last September, I started taking note of my tics. The neck flexion is now rare and low in intensity, but the blinking has always persisted. Sniffling seems to be fairly constant, but I can never rule out allergies. I wonder sometimes is the tics begin as a habit and persist as a tic. For example, my sniffing began after returning from a vacation in San Diego. I had been very congested during the trip. I believed it was from the air pollution, but I continue to sniffle almost a year later. Teeth clenching has become more prominent, but may only be related to the stress of work and school. I noted this has been ongoing for quite a while, but has increased since last August. However, I can only confidently consider my facial grimacing a tic. I'm constantly scrunching my nose or opening my mouth very wide and stretching the skin between my upper lip and nose. The "hard" blink also joins in a lot. This stretching and compressing of that area leaves my lips dry. The skin seems to breakdown and almost scar in one of the skin creases this causes. To help the skin recover, I put aquaphor on the area at night. This tic has become the most intrusive of any tic I've had to date. Because of the appearance, people are always asking me if I have allergies or if I'm okay. On occasion, I have to stop mid-sentence to allow for the tic. I've noted that the tics are not technically "involuntary" as I can suppress them with intention, but it only results in a more intense bout at a later point in the day. I've been very lucky that my relatively mild symptoms were not scrutinized as a teenager. However, it's intensified recently. As of today, other than showing concern, no one I come into contact with regularly has made a big deal out of my tics.

I still get strep 2-3 times per year in a fairly severe fashion. The last step infection was on 1/29 and was particularly bad. I was in severe pain when swallowing and my swollen white-washed tonsils began to make breathing difficult. I was first prescribed something like a z pack, but was still declining until, a few days later; I went to an ENT who prescribed augementin. The swelling and pain began subsiding within 8 hours.

Some correlations I want to say I've noted (and will be documenting from now on) are that my tics usually stop or lower in intensity after antibiotic treatment and worsen when ill, stressed, or with lack of sleep. Also, I've always been warm natured, but even in a cool room I regularly experience excessive night sweats, particularly in the area of the bed where my upper back rests. I generally put a beach towel down, flip the pillow, and go back to sleep.

From the reading I've done over the years, I've wondered if my experience began as PANDAS and has persisted into adulthood. Have any of you found relief or had similar experiences?
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Old 05-07-2010, 08:07 AM #2
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Chemar Chemar is offline
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Chemar Chemar is offline
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Hi and welcome

I am not a doctor but it sounds to me like you are definitely dealing with PANDAS related problems. I know of a number of adults who still have PANDAS like exacerbations when they are either exposed to or reinfected by strep, as well as any OTHER infections, even colds and candida "yeast" etc

very few conventional doctors understand or even accept PANDAS and so you may need to find a PANDAS specialist in your area to get effective treatment. From my understanding, long term prophylactic antibiotics are key, with many seeming to prefer azithromycin-zithromax for it's immuno-modulating properties. But often it is trial and error to find the right antibiotic to be effective for the individual
A lot of the patients are also trying IVIG and PEX with apparent success

I will send you a PM with info on how to connect with another adult who is still dealing with PANDAS, as he may be able to give you some pointers

in the meantime, here are some websites with a wealth of PANDAS info that may be helpful to you, even tho their focus is on the pediatric aspect

http://www.pandasnetwork.org/index.html
(premier resource for PANDAS info with especially excellent info in the left menu under the "Buster's Corner" tabs)

http://www.webpediatrics.com/pandas.html
(this is the website of one of the PANDAS specialists Dr. Kovacevic)

http://www.christianpost.com/blogs/h...-09/index.html
( a simple but clear explanation of PANDAS)


http://www.pandasresourcenetwork.com/index
(new site by Lynn Johnson (mom of Lauren, the "sneezing" girl) and Dr. Denis Bouboulis)

hope that helps a bit
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Last edited by Chemar; 05-07-2010 at 09:03 AM. Reason: adding extra link
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