Delayed Food Allergies – Another Misdiagnosis

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.

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Delayed Food Allergies – Another Misdiagnosis

Pleasantly faking it

Social media is all about highlighting the moments of your life that are working. However, I still want to be honest and show that Lyme Disease is a awful disease. I’m very frequently torn between putting on a good face and showing how frustrating it actually is. This week has been the hardest ones for a bit now and what is posted is a happy photo.

First I caught a cold that I tried to muscle through, then I started herxing from my cold remedies, and thats when things got ugly. I woke up in one of those anxiety binds where your brain tells you that sitting up or moving 2inches will be the death of you. Most of the morning I spent in ball, only to get up for detoxers. The grip slowly wore off until I remembered an errand that could not be put off and I wound back up. My boyfriend got me through my errand, an issue that would have been a mini disaster without his help so when he ordered pizza later I offered to get it since I didn’t feel like my chest was being slowly crushed anymore.

At the pizza place, they are rude, they don’t have his order, then they do, then they make me wait. As I paced the foyer, I started winding back into my anxiety ball. After 15 minutes I left with the pizza, which I would find out later was the wrong order. I got in the car and cried till I got home because I was so tired of every second of this day being so hard. I had very little control over how I felt, which is one of the things I find hardest to accept about Lyme. I never had anxiety before. I don’t have anxiety. I have Lyme which gives me anxiety.

Another layer of this frustration is that I believed when I finished my antibiotics from Jemsek, I should be mostly better. Ending antibiotics and switching to herbs has proved to me that this is far from the truth. My herxing has been hugely neurological, telling me that the antibiotics did a really poor job getting the bacteria out of my brain. I’m excited to get home for Christmas because there awaits a new stress herbal blend from my favorite herb master. I have high hopes that this will be a tool I can use to fully suppress the unnecessary anxiety. If it wasn’t for the set of herbs I already had in hand today, I would have probably never left my bed.

I went through a fairly miserable day and there is no record of it till now because I don’t know how you show that and still want to be someone others spend time with. 95% of my pre-Lyme friends are gone. My Lyme friends suffer with the same issues and worse so there’s no reason to complain to them. They get it. Drawing the line between honesty and presenting the person you want to be is an issue that I struggled with before Lyme and even more now. No one could air all of their issues all the time or else they would have no friends but where do you cross into faking it?

Pleasantly faking it

Ozone was good, but the doctor was not.

While in Pennsylvania I started hydrocortisone, had a small dose of DIV ozone, and did an ozone sauna. I had intended to do more ozone but the hydrocortisone made me so sick I couldn’t do any more ozone. I had been warned that this was not a good choice but I tried to trust the doctor. By the 5th day on it, I was shaking, dizzy, muscle aches, the usual low adrenal issues I worked so hard to get above. When I asked the doctor why this was happening he said he had no idea. Minor detail this was after I had to sit and wait for him for over an hour when I already had a DIV appointment.

A short version is I’m extremely disappointed in the care I received, especially for the price. I paid hundreds of dollars to get more sick. I will be having a phone consult next week to address the issues with him. I would really like to continue ozone, especially since I paid all his costs to get in his care but I do not want his medical advice anymore. We will see how he handles it.

By Monday, I had to call The Country Store (my favorite amazing herbalists). Charlie gave me 2 great recommendations and I went from almost having a public meltdown over nothing to fine within almost 15 minutes. It seems crystal clear to me that I need to move my care completely to The Country Store. My plan at this point is to finish my last few rounds of Bartonella antibioitics with Jemsek, follow The Country Store’s recommendations, and get some more ozones in if possible. While I think Jemsek’s antibioitic protocol has been essential to my improvement, I think the herbal method of restablizing the body while removing the toxins has been what is giving me the ability to function back. What is most important is that I can count on them. I am used to calling a doctor and they tell me they don’t know what to do to help or making me wait for days, Liz always is there with a suggestion. Every call I’ve ever made to her has resulted in a significant improvement in symptoms if not within hours, within the days it takes her to get more herbs to me. Being able to rely on someone for great care when things are bad is something I cant tell you how important it has been to me.

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Yesterday for the first time in years, I drove myself, alone, down to the drug store and back. While this isn’t a big deal to many, this is huge for me. I didn’t feel good, my anxiety from not driving in years was kicking, but I was able to get through it. This is one huge step to getting my independence back. To be able to do minor things like get my own food, pick up my prescriptions, and maybe see my friends again is something I have been dying to get back. I am terrified and can’t wait for my next drive.

Yesterday was also a magical day that many LW projects had major things come together so things are looking up. Back on the right health plan, LW plan, and life plan. So with a fist full of antibioitcs and my side kick, I’m jumping back in. Life full steam ahead! And by full steam I mean nap time!

Ozone was good, but the doctor was not.

My Lyme & Autoimmune response

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.

My Lyme & Autoimmune response