Posted 9/23/2013 7:22 PM (GMT 0)
Hello, I am new to the forum and I am happy Google lead me to such a helpful site.
I just recently discovered that I have Lyme after years of battling sickness after sickness and odd symptom after odd symptom.
It began when I was in junior high school, I was about 13 years old. I got a really bad virus and about a week after it went away, I noticed the right side of my face was drooping. My doctor at the time told my parents it was Bells Palsy and that it would either go away in a few weeks, or cause permanent damage and that the best thing we could do at the time is sit and wait. I remember it taking far more time than three week, but it did eventually go away on its own. I recently went back to visit my family in Pennsylvania where I grew up and was looking at photos of me when tis was going on and it is jaw dropping how my facial features were during this. After the Bells Palsy, I noticed I was having tingling in my hands and feet to the point where it was really bothering me. I also started to not participate socially, sleep a lot and always felt hungry and dirty. By dirty, I mean my teeth always felt unbrushed, my hair felt unclean and I always felt sweaty and gross. I just didn't feel well. Around that time I started to have severe migraines and heavy menstrual cycles as well. I felt mentally detached and very frustrated and angry. I was a very frustrated teenager. I couldn't think straight and my grades started to drop.
With all of this going on, my parents took the responsible steps and sent me to the correct doctors. We went to a Neurologist who ran MRI's, EEG's and gave me strong medicine for the headaches. The tests all came back normal. I went to a Gynecologist for the heavy menstrual cycles and excessive sweating. He put me on Ortho Tri Cyclen and said it would even out my hormones, even out my moods and help with the heavy cycles. I also went to a family therapist who put my on Zoloft. Quite the cocktail at such a young age.
I still had symptom after symptom after symptom.
I eventually moved out of my hometown and started going to school in Philadelphia and ended up leaving school because I couldn't focus well. Along with the depression, foggy thinking and irritability, I started gaining weight at a significant rate. I ballooned up to 190lbs at my peak. I then started to get cystic acne and boils. I went to the doctors on three occasions to have them lanced and drained and one was so severe that it caused a STAPH infection and I ended up in the hospital. I chalked everything up to stress and packed myself up and moved to San Diego CA.
Things got worse.
I started to get tired all the time, ravenously hungry, my hair started to thin and fall out, eventually my periods stopped, I would grind my teeth so bad in the night that I chipped some and had to being wearing a mouth guard to sleep. I would get rashes so severe that they felt like my skin was on fire and burning. I have been hospitalized for kidney infections and have been in and out of the ER for fainting episodes and when all of these symptoms peak. On top of it all I can go to the bathroom, the constipation is so severe that I can go a full week with nothing and when I do go, it is small and dry.
I thought it was all in my head and that I was a weak, depressed miserable person who was doing this to myself. I grew tired of making myself throw up because I ate and felt nauseous because the food would just sit in me and wouldn't digest. I thought I had a raging eating disorder. So I started getting more and more into Nutrition. I ended up completing my certification as a Nutrition and Wellness Consultant and changing my diet to a grain, dairy and sugar free diet much similar to macrobiotics but without the brown rice staple. After trying a vegan diet, a vegetarian diet, a raw diet, GAPS, Paleo, I finally found a diet plan that somewhat helped with the symptoms. It was just difficult to follow. But, it helped take the pain, fatigue and foggy thoughts from a 100 down to a 50. They were still there just less severe. I already ate very healthy to begin with, and changing to grain free made me have a severe herx reaction. I was in and out of bed for two weeks. But it appeared to give my body some form of reaction. It also took a lot of the inflammation away, the acne and I started to sleep better. The downside was I lost a lot of energy and could no longer work out and do weight training but a lot of the weight gain I couldnt drop fell off me instead. I still just didn't feel right... as much as the diet helped, I still felt like hell and the symptoms did their normal routine they have done for the past 11 years. Two weeks Ill feel normal, then slowly it will creep back in and the fatigue, digestive and mental fog come back, then the joint pain, the the irritability, then i'm in bed for a week, then it magically starts to lessen then it comes right back. This is the same cycle, usually every 30 days. With the loss of my period 1 year ad a half ago, I assumed it was hormonal, but it gets worse and worse.
After going to hundred of Dr's who tested me for everything under the sun, I finally gave up and found a Naturopath/Endocrinologist here in Berkeley after moving to the bay area last November. After a full panel of blood work, she discovered I have Hypothyroid. She did a full Sex Hormone Blood Panel and the results that stood out were my T3, T4, C Peptide, Sex Hormone Binding Globulin and Monocyte Percentage:
Monocyte Percentage: 2 reference range: 4-13
C Peptide: 0.5 reference range: 0.6-4.7
T4 Free: 0.65 reference range: 0.73-1.95
Sex Hormone Binding Globulin: 126 reference range: 18-114
She diagnosed me with Hypothyroid and sent me home with a prescription for Naturethroid, b12 Folate, B6, D and Chaste Berry. When I started to take the Naturethroid, I also started to add back in brown rice as well. My partner was raised on a MAcrobiotic diet and I really wanted to follow a healthier diet plan that didn't involve animal products. It is very important to me. So around the same time I started to Thyroid meds, I added rice back. I felt great for about a week and a half, then my body started to completely freak out. This was about 3 months ago. I started the Naturethroid on the last week of July. Since then, I have all the joint pain back, I have open sores on my scalp that wont heal, all my stomach problems have returned, especially the constipation. My eyes got severely infected and I woke up unable to see out of my right eye because it was swollen shut, then it popped a blood vessel and the whole white part of my eye was blood red for three weeks. Then I got two sores in the corner of my lips, two of my toe nails fell off and there is a open sore on the right side of my foot. My heart starts racing and I get faint when I stand up and the same ravenous hunger or no appetite and nauseous feeling comes back. I start to crave healthy fats, can eat a bag of almonds, a jar of almond butter, coconut butter or ghee with a spoon. Along with that, I have a headache and I cant think straight (I apologize this email is all over the place.)
With the raise in all these symptoms, I ended back at the Endocrinologist/Naturopath. She sent me home with a order of bloodwork to check heavy metals in my body and asked me where I want to go from here with testing since obviously something else was up. After missing more and more work and laying in bed sick every night I realized it hasn't been getting better, even on good days I still have symptom after symptom after symptom. I just convince myself it is a good day. So I sat up all night again researching online, like I have done many night before, but this time I stumbled on to a article a woman wrote for the NY Times a few years ago and her symptoms matched mine identically. Not that just the symptoms matched, because with Lyme, it can mimic so many other diseases, but that she had gone through a lot of the mis diagnosis problems as well.
In the morning I emailed my Dr and asked her what she thought and asked if we could do any testing. She replied almost immediately that it is VERY possible that it may be Lyme, but that it was very hard to diagnose. She spoke to a colleague that is a Lyme expert and emailed me back saying that I had a few options. I could do the Igenix testing, but that it is very pricey and not always accurate, or that she can start me on Byron White AL Complax and if I have any die off symptoms that will be diagnostic enough. In the meantime, I went back on the grain free diet while I waited for the AL Complex to arrive.
about three days after going grain free again (two weeks ago) I noticed all my symptoms heighten like they did when I first went grain free a year ago. I started to Herx again. Then when I started the AL Complex 4 days ago, it heightened even worse. I am not in bed writing this, unable to eat, unable to even get out of bed on lt to go to the bathroom. Its intense. I cant make it into work, and my job is hanging on a thin line. I dont know what to do. Its obvious that by taking the AL Complex that it did create a herx and now it is obvious that I do have the Lyme. But where do I go from here?
I have watched my life slowly slipping away the past few years. I have taken about all that I can at this point. I know the Herx can really uproot a lot mentally as well, but I am trying to be strong. I really do not want to lose my job and move back in with my parents at 30 years old. I have a family and a life here in CA, but I am miserable and bed ridden. It is terrifying that I cannot even go to a ER when I feel like this because there is nothing they can do for me. Nothing no one can do. I emailed my Dr about anti biotics to take with the herbs, but she insists that with chronic lyme, anti biotics wont work and when I ask her about the testing, she made a point that even with the testing it will be a $500 test that will just show in words that I have Lyme, when with the reaction to the herbs, it is already obvious that I do.
I feel like I am feeling a severe herx because of the diet change and starting the herbs. I do not know where to go from here. I am embarrassed, I am broke and I am very sick. This happens month after month after month. I don't even have faith this treatment with the botanicals will work because I feel worse than I ever have and out of my mind right now. I also know that in a week or two I will have that week of relief until it starts all over again. Im at a loss.