Be Joyful in Hope

17 03 2016

An evening can begin like this:

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Youth Valentine Banquet

And it can end like this:


My day can change in five minutes.
Then we have the absence/petit mal siezures. These can last from ten seconds to almost a minute and occur with no warning. If I am standing, I will fall. A good day is two to five seizures. A bad day is ten to fifteen.

Both a dystonic storm and an absence seizure are far more likely to occur when I’m tired and have had a lot of brain stimulation. But sometimes they occur for no reason at all.

In November of 2014, we had a panel of labs done which showed that I was in remission of Lyme and all co-infections. When I began to have an increase of seizures and other neurological issues, my doctors feared a relapse. They had done everything they knew to do, and don’t know what to try next. 

We did a lot of research. In our exhaustive search of the internet, we found a video made by Justin Vanderham of his wife, Christa’s, battle with Lyme disease. Her story and symptoms are similar to mine, with the exception that she is now totally healthy. 

Of course that grabbed our attention and we started looking into what her “magic pill” had been. Now it’s a very long story, watch their video here, but in short, after months of IV antibiotics they discovered that Christa’s body was unable to rid itself of toxins on its own. They began to use a powder that acts as a magnet, binding the toxins and then flushing them out of the body. 

They also discovered Fry Laboratory in Pheonix, Arizona. This laboratory has been on the cutting edge of research on Lyme Disease, it’s co-infections, and tropical diseases. They are very thorough and the most comprehensive of any I’ve used. 

Through extensive blood testing they found Christa was positive for a certain type of Protozoa. She had done a lot of international travel beforehand she got sick. Perhaps she was infected during her travels or, as my doctor tells me, a tick can deliver borrelia burgdorferi as well as protozoa in the same bite. 

    My doctor did a preliminary panel which showed, as before, a remission of all things Lyme. They also tested for the same Protozoa for which Christa Vanderham had been positive. This was negative. However, they did see another type of Protozoa.

Yesterday I went in for more labs. A lot of lab work! They are testing especially for tropical diseases of the Central American corner of the world. 

I have done quite a bit of traveling, and haven’t exactly stayed in areas tourists consider safe or attractive. I’ve waded barefooted through flood waters, I’ve drunk rain water caught in a cement water tank, and I’ve eaten the most amazing food you can imagine from street vendors in multiple countries. Once I was stung by the infamous “docta fly” of Belize, twelve times on my right foot. The swelling was so bad, my foot could scarcely fit into my flip flop. So it is possible to have contracted an uninvited guest.

Perhaps you think I endangered myself by not being more careful. But the truth is, God controls what happens. Of course I must not be foolish, but what I’m trying to say is that my traveling companions ate the same food, drank the same water and hiked through “the bush” (jungle) right behind me. They did not become ill. It wasn’t God’s plan for their lives. Their journeys have included trials I have not faced.

So if you find yourself traveling in a third world country, leave your thigh high boots at home, refrain from drinking river water and trust God with your health. 

But I digress, forgive my sermon! 

We don’t know for sure what has invaded my body but it seems to be a type of Protozoa. Whether its mode of transportation was a tick or some hungry Central American parasite, we do not know. 

We have an appointment with the doctor who founded Fry Laboratory and has spent considerable time researching these diseases. Whether or not he can help me is yet to be determined. But our options are few. If this trip doesn’t give us the answers we need, we are considering the Mayo Clinic. 

I am taking the powder, Cholestyamine, to help with my own detoxification. I have had good results so far with minimal side effects. 

Perhaps March 29th will the start of a journey to better health. While I would love to be perfectly healthy with no pain or seizures, I want to joyfully submit to God’s plan for my future.





Zonegran Aftermath

21 08 2015

We were sitting in the neuro-psychologist’s office working on symptom management when it hit. At first it was just a stiffening of my body and my head falling to the side, then I began to jerk and a twisting seizure took control.

Dr. M’s office is on the ground floor in the rehabilitation wing of the Greenville Memorial Hospital. Dr. M became concerned as the seizure progressed. She insisted on bringing in a nurse and returned with two. They checked my pulse, reminded me to breathe and watched as my body twisted backwards on the small couch.

They were concerned and very much wanted to send me over to the ER. “she needs to be evaluated!” they stressed.

But Joe very firmly said, “Nope! We aren’t doing that!”  He wanted to just give me meds and wait it out. He knew an ER visit would include unnecessary tests and drama we didn’t need. And he knew how much I dislike the ER.

Dr. M called Dr. W, my neurologist, who agreed with Joe. If things got worse she wanted us to call her and she’d meet us at the ER, but for now we were to wait it out.

And so we did.

Thirty minutes later the seizing died down and another thirty minutes passed before we were able to leave.

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Between Mom’s pharmaceutical knowledge and Bruce’s tech ability, they figured out how much of what drugs were needed to “snow” me. You gotta love this family of mine!

This seizure came out of nowhere. And we felt rather blindsided. I wasn’t fighting a cold, the flu or any other such infection. I was taking my pills as ordered. Where had this come from?
I had several of the harsh twisting seizures, but the majority of my seizures have been what we are calling, “the staring seizures”. In these I will suddenly just be staring without seeing, unable to respond and if they are long enough, I may fall if standing or slowly slump over if sitting. One day I fell off the couch. =) Breathing is often an issue with these “staring seizures”.
“Your migraine pills!” Joe exclaimed one evening about two weeks later. “that’s the only thing that’s different!” And sure enough, Approximately three weeks before the seizure in Dr. M’s office, Dr. W. had decided to change my migraine medication.
The topamax was causing several problematic side effects such as tiredness, loss of coordination, tingling of the hands/feet, confusion, slowed thinking, memory problems, and speech/language problems.  But the most vexing effect was word retrieval. The word retrieval seemed to get worse by the week. I would tell Joe, “could you get me that blanket from…from….from… that thing you sit on.” meaning the couch. Or I would be giving someone directions and say, “you need to turn at the…. place where cars stop on the road and there’s that thing up top that tells you when to stop or go.” meaning a traffic light. This was what made my nuero finally decide to change.
So she switched me to zonegran and about three weeks later the fireworks began. After Joe mentioned that perhaps this could be the problem, my mom and I researched the side effects of zonegran and the effects of coming off topamax. Sure enough!  My nausea and vomiting were withdrawal effects of topamax and “increased seizures” was a side effect of zonegran.
Topamax and Zonegran are both seizure preventatives that can also be used as a migraine preventative. Dr. Raxlen said using these medications can be a tricky business. When you start working in that area of the brain it can be difficult to find the right medication because, depending on the person , the drug can be just as likely to induce a seizure as to prevent one.
I stopped taking the zonegran and the seizures have been subsiding ever since. I had been having up to three or four of the staring seizures every day. They could be anywhere from 15 seconds to a few minutes.
So now I am not on any type of migraine preventive, which I find a bit scary. I started using Olaf the Oxygen when a migraine starts and he has been helpful in lessening the pain and helping me to fall asleep so I can sleep it off.
I had been taking Lamictal as a seizure preventative and my dosage has been doubled for now, but I’m still having a bit of trouble especially when in a noisy group. The dystonia has been more active and I still have the staring spells every once in a while.
On Tuesday I went grocery shopping with my mom, sister and sis-in-law. I did pretty well, with my dystonia acting up only a little.
That night my brain decided to let me know it didn’t appreciate the big day and we had a seizure, my body twisting and curling backward. The next day I couldn’t get out of bed or I was pulling and jerking quite nicely. But it didn’t kill me and I’m glad I went! It was a fun day. We were in dire need of groceries and I even found an old suitcase to add to my collection of things vintage.