My appointment to see my Doctor about the after affects of the grandmal seizure (tonic clonic seizure) was very stressful. The week before I had had a bit of a another health crisis. My urethra had swelled almost closed. It felt as if I were urinating broken glass. I had to be catheterized to empty my bladder and inject medication into my bladder. The Doctor believed that I had a coinfection of Lyme disease in my urethra. I had already tested positive for this coinfection in my blood previously. He treated it with Doxycycline. I did not know that this antibiotic would stir up the Lyme disease again. It did. The results were on my face and my swollen joints. But I could urinate again the next day so yay!
I tested positive for Lyme disease 3 years ago. Lyme disease is not simple. It is so incredibly complex that I could never do it justice by trying to explain what happens in the body because of it. Somehow though, it destroys the immune system. It allows parasites in. Heavy metals somehow become elevated. The body just becomes toxic. Killing Lyme, parasites, with various herbs and antibiotics creates an imbalance in the intestines. I have had 4 intestinal bleeds during this process. This week was number 4. So, along with Lyme comes coinfections. I had many other infections, Rocky Mountain Spotted fever, mycoplasma, and the list can go on and on. I have had the mycoplasma in my lungs. Last week I had it in my urethra. Then after the doxy to treat the urethra infection I flared the Lyme disease. Then I got an intestinal bleed.
Going into my appointment was not something I was looking forward to. Therefore, a long list. Everything is intermingled. My doctor believes the seizures are related to Lyme being in my brain. She did some labs the last time I saw her. My copper and iron were too high. Heavy metal toxicity. Both can also contribute to seizures. But my face is raw from the flare of the doxy and my joints hurt to move. What do we treat. Where do we begin? I also have severe muscle pain that I just cannot handle any longer. The atrophied areas are unbearable. Fortunately, the pain patches, which I promptly put on my neck, only cost $7 with my husband’s new job. They cost $4,000 with his old job. Talk about a fucked up health care system in the US!!!!!!!!
She does her exam. My right pupil is still not right. I am doing much better memory wise but word recall and confusion are still there. Some memories are still completely lost. I am having some small break through seizures. She thinks it is because the Lyme has flared due to the treatment of the coinfection. So what do we do? Keep treating Lyme to calm it down if that makes seizures worse and then up the seizure meds? My PTSD and anxiety and nightmares are also flared. ALSO, there is that past rape that gave me an STD. With Lyme you THINK you have treated the underlying infections but they can hide and come back. So I had to be retested for STD’s. See…not just a little review of my after seizure affects. Nope. I had to ask my husband to leave the room to discuss this little part because I just couldn’t say the words in front of him even though he knows about it.
Fortunately, I tested negative for these.
My plan is to start a new Lyme disease protocol.
We also discuss my severe atrophy and if the Doctor in England is still studying my DNA to find the cause of my muscle disease…He is but has no answers yet. 12 years later, he still works from England, I wait.
We also discuss the importance of rechecking all of my bones and the parathyroid hormone which has been imbalanced in the past and causes bone pain and make my bones more brittle. We cannot have that since my bones are that of a 90 year old due to a bone disease that the Mayo clinic and no one else understands why I have it or how to treat it. So I need more labs. The lab has closed. I have to go back again. I will remember to bring my “Don’t touch me sign” when I go back tomorrow for the blood work.
I go home and start the new Lyme herbs. I have an immediate reaction. I start coughing. My heart rate is through the roof. I wonder if I will have to use my epipen. What meds can I mix with my seizure meds to stop this reaction???? Now that I cannot do the new Lyme treatment what will I do? Just stick with the other idea of the chelation for the heavy metals? Oh my gosh will Lyme ever die? Will I survive? How long will I survive? Will it destroy my body first? It sure feels like it will. Meanwhile I have now started another intestinal bleed. Do I call the doctor? I’m going back for labs anyway.
So hopefully I will not go into anaphylactic shock from the Lyme herbs and not bleed out from the intestinal bleed. Meanwhile, my daughter has just made it back from her own appointment and wants to see the dragonflies and sunset. So I drug my self up with antihistimeines and we took her out to see that sunset and dragonflies I posted on my blog. Those mindful moments deserve an award because even at my lowest I will always always try to be mindful and be there for my daughter as she is more important than anything.
I guess my point is this: when you see my mindful walks and photos, know that hell is going on behind the scenes and those photos are truly victorious to me. So thank you for looking at them and appreciating the beauty in them as I have.
But I need to remember my sign for my appointment. Cannot forget the sign. If one more person pats me…