[nimrod4u]

This will be my last thread post in this forum. I will respond to individual messages and replies on this thread only.

I just wanted to share my story about how I was misdiagnosed with Post-Concussion Syndrome by about 8 different neurologists from 5 different clinics over the course of many years. I don't want anyone else to suffer with a misdiagnosis if I can help it. Here is my story:

I have suffered two significant concussive impacts--one in high school (2006) and one in college (2009). The 2006 concussion happened on a Saturday football game during my senior high school season. I went to practice the following Monday and felt awful as soon as we started doing tackling drills. I had crippling headaches for weeks, had to delay taking my SAT, and never played football again. Notably, I was also experiencing painful urination and swollen lymph nodes in my groin area at this time. I should also note that I had minor concussions from football prior to this, but those times never resulted in symptoms lasting more than a couple days. However, it took me about 6 months to recover from the 2006 concussion. I graduated from high school in 2007, and then started college. I pretty much felt fine my first 1.5 years of college.

In 2009, I suffered another significant concussion at college. No matter what I did to treat it, I couldn't seem to fully recover from it. I suffered from a range of neurological symptoms including headaches, dizziness, and brain fog. These symptoms continued to occur intermittently throughout the rest of college. They would tend to flare up at periods when my immune system was compromised or following minor head bumps.

Often, when these head bumps and corresponding flare up in neurological symptoms occurred, I also experienced urological symptoms like painful urination, blood in my semen, swollen lymph nodes. I got tested for STDs many times, but the tests always came back negative. The urologists would put me on a dose of antibiotics just in case I had an infection that wasn't showing up. From the antibiotics, I would temporarily feel better, but then the pain would return slowly over time. Finally, the urologists just diagnosed me with prostasis and advised me to wear different underwear. From then on, I just focused on ignoring that pain. Because Western medicine is divided into specialties, and because PCS and Lyme are both misunderstood diseases, no one at that time pieced together that my neurological and urological symptoms. None of my doctors realized that they could be related.

In any case, I was functional enough to get a job after I graduated from college. This was great because my GPA fluctuated quite dramatically on my college transcript. I had a high GPA in the semesters when I was feeling healthy, but a low GPA in the semesters when I was not.

I was able to excel at my job for the first year or so, but then my symptoms started coming back again. Both neurological and urological. I played beach volley ball and didn't even hit my head, but I dove in the sand and it triggered severe neurological symptoms. I couldn't exercise at all or focus at work so I quit my job in the spring of 2013. I was starting grad school in the fall and I wanted to restore my health before going back to school.

In the summer of 2013, I saw more neurologists who said that I suffered from a "temporary re-occurrence of post-concussion symptoms." In addition to getting a lot of rest, I did vestibular therapy every day that summer. I tried acupuncture and different medications. By the fall, I finally felt well enough to start grad school part-time. I felt pretty health during my first semester and continued doing vestibular therapy every day. I really dedicated myself to school and did extremely well academically. I transferred to the full-time program the following semester.

I was doing well in my second semester until late February of 2014 when my symptoms took another downturn. This time I couldn't attribute it to concussive impacts. I thought it may have been from when I bumped my head in the shower, but I couldn't be certain. All I knew was that I would be sitting in class, and the entire room would be spinning. I couldn't exercise or study. It was devastating.

I dropped out of graduate school and stayed at home for months, trying to recover from what my neurologists told me was post-concussion syndrome again. Also, my lymph nodes in my groin were extremely inflamed and I had difficulty urinating, but I ignored those symptoms. One neurologist, Dr. Dudic, gave me series of steroid shots into the back of my head with the theory that I had a pinched nerve back there. The steroid shots, which reduced inflammation, gave me relief for a few days, but then my symptoms came back even stronger. I continued doing vestibular therapy, but it wasn't helping.

I developed panic attacks towards the end of April. I had very low vitamin B, vitamin D, and very low cholesterol. I was borderline diabetic. I had a week straight of panic attacks that happened every night and precluded me from sleeping until I started taking Xanax. I was convinced that I wasn't going to live much longer.

While investigating HBOT (hyperbaric oxygen) as an alternative treatment for PCS, I stumbled into a doctor's office that coincidentally happened to treat many Lyme patients. The doctor looked at my bloodwork and medical history and told me that I had late-stage Lyme disease. At first I did not believe her at all. I had been diagnosed by many neurologists with PCS--that's what I thought I had. After all, I hadn't been bitten by a tick since back in high school over 8 years ago.

But, I got an Igenex blood test that came back positive for Lyme disease on May 14, 2014. Lyme also made sense because it explained all of symptoms. It explained why my "temporary re-occurrences of post-concussion syndrome" often occurred around the same time as my swollen lymph nodes and urological symptoms. Both Lyme and PCS cause inflammation in the brain and in the body. A Lyme diagnosis also explained why a week of antibiotics would help my urological symptoms, but then would creep back slowly over time. The antibiotics would fight against the Lyme, but I never had a sufficient dosage or antibiotic treatment to kill the infection entirely. The Lyme diagnosis also explained my reaction to the steroid shots. While the steroids shots helped me initially because they reduced inflammation in my brain, the steroids also suppressed my immune system and left my more exposed to the Lyme bacteria.

I was truly a blessing to get the right diagnosis. This feeling that my body was slowly deteriorating for many years was finally validated. So I dove head-long into Lyme treatment. With late-stage Lyme, it sometimes takes years of antibiotics for people to start feeling better. I got a port installed in my chest in August of 2014, and received high dosages of antibiotics intravenously to help penetrate the brain-blood barrier. I saw significant improvement with the antibiotics. I got my port removed in February of 2015.

I am still tapering off with oral antibiotics. It has been a long and challenging road, but I am on the right path. I worked full-time this summer, and just completed a full-time semester of grad school. It feels great to be productive person again, and my Lyme doctor is optimistic that I will achieve a full recovery eventually.

If my story sounds anything like yours, please investigate Lyme disease. Aside from neurological symptoms, common Lyme symptoms include fatigue, joint pain, flu-like symptoms, and POTS. If you live in the Northeast, you're at a much higher risk, although there are confirmed Lyme diagnoses in every state. The CDC estimates that 300,000 people are infected by Lyme each year and only a minority percentage of those get the hallmark bulls-eye rash. I never got a bulls-eye rash.

If my story sounds anything like yours, make sure you get an Igenex (Western Blot) test for Lyme and get seen by a “lyme-literate” doctor. I won't go into detail about Lyme disease here because this is a PCS forum and I'm sure the majority of those reading this only have PCS. But let me know if you have questions. I just don't want anyone else to suffer with a misdiagnosis if I can help it.

Finally, my heart goes out to all of you who are suffering. I know how desperate it feels to suffer from neurological symptoms that are difficult to diagnose and treat. I truly hope you all find peace, and please don't give up.

*

You should check out Tim Ferriss and his experience with Lyme Disease. He suffered with it for over a year, and did a bunch of research on how to overcome what some call Chronic Lyme. He found that a Ketogenic Diet allowed him to function at close to 80-90% of what he previously could do. He states his reasonings for why he thinks the Keto Diet is a good idea to try when suffering from Lyme Disease, he also said that every other person he has talked with that has had Lyme, that then tried a Keto Diet, had great relief of symptoms from doing so.

might be worth a try!

Here is a podcast where he talks more about his experiences with it - http://www.slate.com/articles/podcas...t_podcast.html

[Jomar]

I agree, never assume symptoms are "only" from a single diagnosis..
It is very possible to have more than one condition going on.. especially if there are a few symptoms that don't really fit the main dx.

[ painful urination and swollen lymph nodes in my groin area. ]
I would have thought this would have been one of those sx that didn't really fit for PCS..

[nimrod4u]

Originally Posted by billbobby21

*

You should check out Tim Ferriss and his experience with Lyme Disease. He suffered with it for over a year, and did a bunch of research on how to overcome what some call Chronic Lyme. He found that a Ketogenic Diet allowed him to function at close to 80-90% of what he previously could do. He states his reasonings for why he thinks the Keto Diet is a good idea to try when suffering from Lyme Disease, he also said that every other person he has talked with that has had Lyme, that then tried a Keto Diet, had great relief of symptoms from doing so.

might be worth a try!

Here is a podcast where he talks more about his experiences with it - http://www.slate.com/articles/podcas...t_podcast.html

That's awesome. Yeah I am gluten-free per my doctor's recommendation to reduce inflammation. I was skeptical at first but I gave it a try, and I really think there's something to it so I stuck with it. I tested it by giving up gluten for 3 weeks, and then eating a gluten pasta meal with bread sticks. Definitely felt worse. Whenever I "cheat" I always regret it.

I also don't eat processed sugar, but that's mostly because it gives me thrush. When you're on long-term antibiotics, the abxs kill all of the bacteria in your system including the good bacteria that keeps the yeast in check. So when I don't have any good bacteria in my mouth, and I eat sugar, it's a disaster : /

I'm halfway through the Ferriss podcast. Am definitely interested in the Ketogenic diet. I am feeling about 75% better so am always interested in exploring ways to improve my health. Thanks for the tip!

[Mark in Idaho]

Have you tried cinnamon tea for the thrush ? Or just get a cinnamon bark stick to suck on.

[nimrod4u]

Originally Posted by Jo*mar

I agree, never assume symptoms are "only" from a single diagnosis..
It is very possible to have more than one condition going on.. especially if there are a few symptoms that don't really fit the main dx.

[ painful urination and swollen lymph nodes in my groin area. ]
I would have thought this would have been one of those sx that didn't really fit for PCS..

There was definitely an interaction between the two conditions. I experienced substantial, traditional concussive impacts in 2006 and 2009. Having Lyme just prolonged and impeded my recovery. However, the many other insubstantial head bumps that I experienced would not have triggered symptoms in a healthy person. But for me, they resulted in a cascade of crippling symptoms because my immune system was already so compromised from fighting off late-stage Lyme and my brain already had significant inflammation (which was confirmed with an abnormal SPECT brain scan).

And yes, it is very frustrating that it took 8 years for a doctor to piece together the urology and neurological symptoms. After years of floundering with my health, I came back to my general physician and said, "look I just want to see if I am missing anything from a holistic perspective because I have seen all of these specialists and I am still having problems." He told me that Western medicine is like fixing a car. We can run some basic tests and replace parts, but after that there is only so much we can do. He is no longer my doctor.

So the moral of my story is be your own advocate. Seek multiple opinions. Trust your gut about your symptoms. Recognize that the unknowns are vastly greater than what is known in medical science, particularly when it comes to diseases like Lyme and PCS.

[nimrod4u]

Originally Posted by Mark in Idaho

Have you tried cinnamon tea for the thrush ? Or just get a cinnamon bark stick to suck on.

Mark, your post made me smile for a couple reasons. You probably don't remember this, but you gave me some good advice on how to handle PCS 1.5 years ago on this forum. You're quite an institution around here! I can only imagine the number of people that you've helped.

To answer your question, I have not tried cinnamon tea or bark stick. I take probiotics, saccharomyces and use a tongue scraper every day, and I take Diflucan and rinse with salt water when things get bad, but I have never heard of cinnamon tea for thrush. It's just so fitting that you gave me a new tip, and so that's the other reason why I am smiling. Will try it!

All the best.

[hopefulmom]

Thank you for telling your story. Wow what a read.

My daughter was also misdiagnosed and eventually her vestibular system was thoroughly tested and up came migraines. The head doctor could''t believe HOW MANY neurologists missed the diagnosis. She said my daughter's symptoms were migraine 10 and that was 4.5 yrs ago-UGH. All the vestibular therapy just made her sick and then the docs would say it was in her head.

I agree with you that there are some amazing people who help others here and Mark in Idaho is one of the tops.

Best to you in school and in recovering from Lyme,