Lyme disease is controversial. Only for those who DON”T HAVE IT! For those of us who have Lyme disease there are only facts! The controversy lies around the diagnosis and whose test is considered reliable. The controversy lies around long term Lyme disease and is it real or is it not. Because of the controversy, treatment, insurance, doctors, all get mixed up in this mess which leaves the patients always struggling, always suffering. Fortunately I have an awesome doctor. Not everyone does. Most people cannot afford this treatment. Look at all of the famous people who are now diagnosed and NOT getting better! If millions of dollars cannot get them better imagine how us ordinary folk feel! We don’t have the resources. We don’t have the means to pay out of pocket for the alternative ways that are helping so many. Or we go in debt trying. We can’t just lay on a cushy couch with a pic line and a maid and a home health care nurse and have that luxury of not working. Even those movie stars are not getting better! I wanted to share some truth in pictures and words for what an average ordinary person (me) goes through when facing this illness. This illness, Lyme disease, is not self limiting. I have no IDEA and neither do my many doctors, what part Lyme disease is playing in all of my other diagnosis. Is Lyme causing my seizures? Is Lyme making them worse? Some say yes, some say no. Is Lyme making my muscle disease worse? Is Lyme making it look like I have a muscle disease and I don’t at all? No one knows. Is Lyme disease causing my Iron to be too low, my parathyroid to malfunction, my vitamin D levels and B12 levels to be low? Some say yes. Some say no. Is Lyme the reason for my anxiety and depression or is it just contributing? Who knows! Throw in some PTSD and childhood sexual abuse, loss of family, loss of family pets, and sprinkle in all my other disorders and well it is hard to tell which pill I need to swallow first!!!!! Then the medications! The seizure meds don’t mix with the PTSD meds (which I still cannot find one I tolerate), and the Lyme meds don’t mix with the other meds. How do you find the right pill? Is there a pill to fix all of this???
Some people say that igenix is not a reliable test. Here is my test. It was considered CDC positive so it had to be reported to the CDC. I was reported to the CDC as having Lyme disease. If I was reported as a statistic then how can igenix not be valid?
It IS valid. I have Lyme disease. So then I began a two year treatment. 5 different antibiotics, and countless other medications. Too many medications to list. But I took different medications every other week to treat the Lyme disease and the coinfections. Then I started the Cowden protocol which is a well known herbal treatment for Lyme disease. So I thought I was better. Until I had a grandmal seizure which lowered my immune system and once again all of my Lyme titers have come back positive. But labs are only one piece. When I have a Lyme flare of symptoms my joints become swollen. My face becomes a raw wound. My legs get a rash. Then the right side of my face becomes painful, my face droops, my eyelid droops. I get anxiety, I get a tremor in my hand, my seizures increase.I don’t sleep, I have widespread pain. let me show you what that looks like…
It is not a pretty sight. It is very painful. So I thought that Lyme disease was over. I thought that the 2 years of the “die off” of Lyme was over. Now I must start treatment again. Who says long term Lyme is not real? Controversial? I cannot make up my lab results that say that I am now positive again for the coinfections of Lyme. I cannot create this face or these red knuckles or these seizures.
No one knows why at age 30 I was diagnosed with osteoporosis. I was still exercising then. The osteoporosis has only gotten worse. My bones ache. They say that in osteoporosis your bones don’t ache. Mine do. Some say it is the Lyme that makes that happen. I know when I was infected with Lyme disease even if no one did a test for it back then because of the symptoms that have progressed. Here is what it says about my bones. And I cannot take the osteoporosis medications. They are contraindicated in all of my other conditions. There is no fix for these bones unless Lyme is causing it or making it worse.
Let me explain what this means….-2.5 indicates osteoporosis. Mine is more than -3.0 which is WORSE than your standard run of the mill osteoporosis. Apparently if I fell off a sidewalk with my foot I will break. If I step to hard or stumble I will break something. No one knows the cause. No one can give me a treatment. We have to assume it is Lyme and that the new treatment I am on will help. The new treatment is back to the herbs. These herbs cost $46. a bottle. They last about 3 weeks. Then I have to buy them again. I am on 4 different herbs. I was also started back on Doxycycline. This combination has made my joints already feel better. But my face is a raw wound and the small seizures are back. The die off of Lyme is brutal. Brutal!
So then my muscle disease. let me show you a picture of what normal muscle tissue looks like..
This picture is of a normal muscle sample from a biopsy that I got offline. Now lets look at what my muscle biopsy looks like:
See those white circles in the center of the blue? That is dead mitochondria. Those are my type 1 muscle fibers. This picture was obtained after I got a muscle biopsy at the Mayo Clinic, and sent the muscle sample to England to a specialist who photographed it for me. The biopsy report from the Mayo clinic says I have Central Core Disease. Central Core Disease has a known mutation called the RyR1 mutation. I DO NOT HAVE the RyR1 mutation. Now some people with this disease, a small portion, don’t have the mutation. So what do we have? How do you get a disease with a known mutation and have no mutation. Is it Lyme disease that caused this? Did Lyme disease make it worse? This disease, Central Core Disease, is not known to have atrophy yet I have significant atrophy in my type 2 muscle fibers and visible atrophy. I will show you my atrophy:
This is my left leg. You can see the scar on my quad. it is a faint line from my biopsy.. The right side of my quad and knee are so atrophied that my kneecap has become unstable and turns to the inside. I have to walk carefully. I get daily leg cramping. I have to favor my right leg which then tires it. Is this JUST central core disease? No one can answer that. Is Lyme making it worse? I think it is. I am now taking herbals as treatment for Lyme once again and my legs have become less weak. So I know that Lyme is a contributing factor.
Then I developed the Multiple Chemical Sensitivities which MOST people with Lyme have suffered from at one time or another because our immune systems are low and therefore cannot cope, is the best way I can describe it, with the chemicals that society now produces. All those pretty perfumes and fabric softeners and hair products and nail polish affects me. This is not what I want….
But when people hug me, they get their perfume on me. When they pat me it causes pain to my muscles. I used to love to hug people. I don’t want to be in a scooter. I don’t want to not be able to hug people. But that is the reality of my life.
I passed out during my Lyme treatment because my body could not handle the the detox and die off of the disease. Here I am on the floor with a rash on my face after I fainted. My sweet boy making sure I was ok…
Then there is the hair loss common among people with Lyme. Also common in low iron, and osteoporosis.
So I went from this…
a professional water skier…to this….
So think about what I have to deal with on a daily basis. I think the pictures describe it more than my words ever could which is why I have decided to include them. My body is suffering. My life is challenging. Lyme disease is a horrible horrible disease that has eaten up my body. Central Core Disease, Osteoporosis, Multiple Chemical Sensitivities, Seizures, have contributed to a very very tired me. But that is not all that I have on my plate.
My daughter asked me last night why I was wearing her robe. I replied, ” We wrapped Jessy in my robe when we buried him, and I am cold, so I needed to borrow yours.” Both of my companions, my two dogs above, are gone. It is incredibly sad.
This is only a VERY small piece of the physical things I am going through. I am starting a new therapy for PTSD in 2 weeks. That seems overwhelming but it must be done. Because my body is not the only thing I need to take care of. My mind has been equally tired. Equally exhausted. Childhood sexual trauma has not been dealt with. My family chose to live in denial about the abuse. Because of that denial I did not get the help that I desperately needed. I am embarking on a huge project of sorting through and learning to cope with PTSD. Before that happens I have to go to the Mayo clinic this week for an iron infusion.
I cannot tell you the amount of times people in my life have suggested acupuncture, or chiropractic. I cannot tell you the amount of times my health has been minimized from the people around me who have no IDEA the life I am living. The insensitivity to the gravity of my situation has appalled me over and over again. Trust me when I tell you that I have put in thousands of hours into the research of my own health. Everything that I can try, I have.
This is me. This is my life. This is a small tiny piece of my life that I have shared with you. I share it to raise awareness for mental health and Lyme disease and all of the other health related issues I am going through. It is deeply complex. It is no wonder I have become angry with the insensitive people I come across. I nolonger tolerate insensitivity. The benefit in living in ones truth is allowing your emotions and choosing not to accept the non-compassion of others.
My heart goes out to others suffering from mental health challenges due to sexual abuse and health issues in general. My heart goes out to those suffering from Lyme disease and Central Core disease. My heart goes out to those people who are trying so hard to get well and are struggling with people in their lives, who may be going through this alone and who may not have the finances to pay for any of it! May we stick together and give each other strength.
May we every day keep moving forward and not give up the fight.
My heart truly goes out to all of you.