At the very beginning of my downhill health slide, I was diagnosed with delayed allergic reactions to foods. Black Pepper, Oregano, Oats, and Rye. What a bummer right? For the past few years, I’ve just avoided these foods assuming the medical field had gotten one thing right. Of course, not so much.
I got a new round of herbs over the holiday. Christmas morning I sat with my family and had a wtf moment as a wave of dizziness washed over me. This is what my delayed allergies feel like. Its like the feeling you get going over a rollercoaster but in your head. You want to pass out and throw up simultaneously. Its brief but truly awful and you feel weird for a while after. So, I call and ask who spiced my herbs? Of course no one did. They don’t need seasoning.
Lyme had invaded my pituitary gland in my brain. The new herb that I had been using had effected this gland and gone off in flashing lights where the Lyme was still living. I had never had allergies. Foods like Black Pepper, Oregano, and Oats stimulate the pituitary causing this neurological reaction they had misdiagnosed as an allergy.
I, for one, am ecstatic. This means that after treating this section of the brain responsible for many of my cortisol and adrenal issues (the pituitary controls most of your hormones) I would be able to have all these delicious foods again seasoned with pepper and oregano! Not to mention, I am sure I will feel a hell of a lot better. I am already planning my 2 month binge into Italian food.
What concerns me is when diagnosed my doctor told me he diagnoses people with delayed allergies almost every day. That means for the 3 years its been since I’ve seen him, he has diagnosed about 1,000 people incorrectly. Its realizations like this that make me panic for all the people who have to go down this road because of doctors being blind to Lyme. I absolutely will be making a call to this doctor and hope that my knowledge is well received. On the positive side, food will be delicious again one day.
As many of you know, I have been treating with Jemsek Specialty clinic for over a year now. I have made a lot of improvement but as they tell me I will be entering my last round of intense antibiotics and I am still not my normal functional self, I have found myself moving to the belief that antibiotics are not the full solution to Lyme Disease.
I want to make it very clear that I am still an advocate of long term pulsed antibiotics. They have taken my life from couch-bound daily to being able to be functional around the house and having more and more good days going out. That being said, I think there is a large component of Lyme that is the autoimmune systems reaction to Lyme that we don’t understand. Like some people are allergic to foods, it is not that the food is bad but that our systems over react to it. I think the antibiotics have done a great job of killing the invaders but that much of my issues come now from my body being unable to settle back into its normal ways.
I will be finishing my last rounds with Jemsek, I have added in herbals, and I will begin DIV Ozone in October. My intent is to continue to use herbals to kill any invaders that antibiotics did not get while using Ozone and other alternative methods to calm my autoimmune issues. My new doctor is optimistic that I will be able to calm my neurological flares that keep me from driving relatively soon.
While all this treatment has been more expensive than I can afford, I am optimistic that it will all be worth it soon and I can return to a functioning lifestyle where I can do more to bring Lyme awareness and return to my career that has been left for dead over the last two years. I have to admit I am thoroughly exhausted from running from place to place trying to cure this disease and frequently struggling with finances, I feel closer to the end than ever before.
A beautiful thing about illness is the longer ago it is, the less you remember how bad it is. I had started getting used to being less sick and more functional. The last few days have reminded me what it is to be totally leveled by your illness.
Minocycline is no friend of mine. If you remember my earlier post I was on it for 4 days before I knew I had Lyme. 24hrs after coming off it because I felt lightheaded I had an allergic reaction to it.
For the last 3 days I had doubled my dose of minocycline and was really struggling with severe lightheadedness but I thought I was going to make it through. Last night I had a allergic reaction that reminded me how awful neurological symptoms really are. I sat watching the hours tick away last night while I had the same reaction I did almost 2 years ago. It felt like someone had pumped cold poison into my veins and lit my skin on fire and was scary disoriented. This attack fortunately only lasted for about 3 hours into about 2am. For the rest of the night I sat fully awake, spinning & disoriented until 6am when I caught 2 hours of sleep.
When I woke up I knew the medication was still going strong. I couldn’t put words together easily, my processing was off… I called my mother down to help me walk because I was so lightheaded I kept having to crouch to the floor for fear of falling over. As the day went on the severity of the symptoms lightened but even tonight almost 20 hours after the attack my brain is struggling. Spinning, disoriented, shaking, lightheaded…. neurological symptoms are hands down the most awful thing I have ever been put through.
After these long hours of awful symptoms, many alone, I am reminded why suicide rates with Lyme patients are so high. No one should ever be subjected to how sick this disease can make you and how alone it can leave you. With mine, I know this reaction will pass and maybe eventually people will call again. All I can say at this point is I wouldnt wish this isolated hell on anyone. There is no excuse for not finding a cure.