Yesterday was insane! After a short, interrupted sleep, Mom and I left the house at 5:30 am and headed for Wisconsin to visit my LLMD. My appointment was set for 9:30, and we needed time to stop for a break and food, of course! I brought along my paperwork printed from 23andme and the resulting report from Genetic Genie as well as my Americans with Disabilities Act form from work to extend my “leave”. Red tape.
My appointment was fruitful. I don’t know if it was the lack of sleep, which you’d think that my body would be used to, or the fact that I consumed gluten for the first time in weeks merely 45 minutes before seeing him, but my muscle spasms/twitches were hopping. Whatever caused it to happen at that particular time, I think it helped to get my point across. Between my symptoms and my genetic defects which I know very little about, I’m once again being told that this will be a lengthy process.
The genetic defect of most significance that I am fortunate enough to be homozygous (from both parents +/+) for is C677T. This has something to do with methylation and affects how well my body processes food and such into useful nutrients. Doc and his partner have been studying up on this and will review my printouts. I had some bloodwork done to analyze this: Homocystine, Vitamin B12, Methylmalonic Acid, and H-Comprehensive Metabolic Panel.
Due to my symptoms and the fact that I haven’t had an MRI since about 5 or 6 months after my bulls-eye rash, I am going to repeat the MRI and see if there is a significant change. If so, we will likely pursue insurance coverage of a picc line.
My current medication and supplement list is below. This is only currently what I am prescribed and in no way am I saying that it is a cure or right for everyone. My doc’s orders only. Clicking on the list will allow you to open it.
Of course, I couldn’t stop with one appointment. Immediately after seeing my LLMD, we raced to University of Wisconsin Hospital and Clinics to the Speech Pathology and Otolaryngology Departments. I have been experiencing a sore throat and gradually roughening of my voice since 2010 (bit in 2009), so I, naturally, presumed it was Lyme related and have been living with it. After my local primary referred me to a local ENT, she found some swelling and vascular damage, and I was referred up to UW. I had an appointment with the Speech Pathologist first. She ran some lovely spoken tests in which I repeated many ah’s, eee’s and ooo’s. My raspy, gravelly voice sounded just wonderful performing these tests to be sure. Then she took out this long, metal lighted camera that looked much like a slim gun.
The pictures revealed a perfect right vocal cord working exactly as it should and with an amazingly straight edge and no vessels or marks visible. The left one, however, was like a balloon, hard and full; it also had very noticeable blood vessels feeding into something. This explains my throat troubles. When the otolaryngologist came in to discuss my results and his recommendations, he let me know in no uncertain terms that this is highly unusual. The problem is that the surface that can be seen does not let him know what is causing the ballooned appearance. It basically could be anything, and he can rule out nothing without surgery. When I paused before giving him an answer as to what I wanted to do (typical with a Lyme patient-we need time to process), he told me, “Don’t make a decision today. Go home and think about it. But I want you to do one of two things within the next 72 hours: Either you call to schedule surgery or you call to schedule a follow up for 3 months from now. One way or the other, you can’t let this go.”
So I have decided to have the surgery and be done with it. I don’t need to worry about it for 3 more months. Providing it is nothing too life altering, he will take care of everything, and I will go home the same day.
Hmm, maybe if it’s some benign fluid build-up or cyst, I should request that it be cultured for spirochetes!
This is my Brain on Bugs.
Spirochaetales are slender, spiral-shaped, undulating bacteria including those causing syphilis and Lyme disease. This article briefs Tabes Dorsalis due to untreated Syphilis. It’s obvious to me that the complete denial that Lyme Disease could be anything like Syphilis when the two bacterium are in the same Family is blatant. What would make anyone think that Lyme should be so different and not require treatment when left untreated for a significant time period? A group of powerful officials could not possibly be so ignorant as to truly believe anything of the sort, therefore, the only conclusion is that the denial is purposeful. What exactly are they hiding?
Synonym(s): Progressive Locomotor Ataxia, Syphilitic Spinal Sclerosis
What is Tabes Dorsalis?
Tabes dorsalis is a slow degeneration of the nerve cells and nerve fibers that carry sensory information to the brain. The degenerating nerves are in the dorsal columns of the spinal cord (the portion closest to the back of the body) and carry information that help maintain a person’s sense of position. Tabes dorsalis is the result of an untreated syphilis infection. Symptoms may not appear for some decades after the initial infection and include weakness, diminished reflexes, unsteady gait, progressive degeneration of the joints, loss of coordination, episodes of intense pain and disturbed sensation, personality changes, dementia, deafness, visual impairment, and impaired response to light. The disease is more frequent in males than in females. Onset is commonly during mid-life. The incidence of tabes dorsalis is rising, in part due to co-associated HIV infection.
Is there any treatment?
What is the prognosis?
If left untreated, tabes dorsalis can lead to paralysis, dementia, and blindness. Existing nerve damage cannot be reversed.
What research is being done?
The NINDS supports and conducts research on neurodegenerative disorders, such as tabes dorsalis, in an effort to find ways to prevent, treat, and, ultimately, cure these disorders.
- ?Exilispira Imachi et al. 2008
- Brevinemataceae Paster 2012
- Brevinema Defosse et al. 1995
- Brachyspiraceae Paster 2012
- Brachyspira Hovind-Hougen et al. 1983
- Leptospiraceae Hovind-Hougen 1979 emend. Levett et al. 2005
- Spirochaetaceae Swellengrebel 1907
- Borrelia Swellengrebel 1907 ——————————————— (Responsible for Lyme Disease)
- Clevelandina ♦ Bermudes et al. 1988
- Cristispira ♪ Gross 1910
- Diplocalyx ♦ (ex Gharagozlou 1968) Bermudes et al. 1988
- Hollandina ♦ (ex To et al. 1978) Bermudes et al. 1988
- Pillotina ♦ (ex Hollande and Gharagozlou 1967) Bermudes et al. 1988
- Sphaerochaeta Ritalahti et al. 2012
- Spirochaeta Spirochaeta Ehrenberg 1835 emend. Pikuta et al. 2009
- Spironema ♠ Turk et al. 1999
- Treponema Schaudinn 1905 ———————————————– (Responsible for Syphilis)
- Borrelia Swellengrebel 1907 ——————————————— (Responsible for Lyme Disease)
These past four days have revolved around what is allowed and what is forbidden in the Elimination Diet that I began on Monday, October 7, 2013. It’s not nearly as terrible as I expected. You see, I had pulled up information on Elimination Diets prior to my doc’s paperwork arriving via snail mail, and what I found was horrendous! Only green smoothies for the first two days, then only limited fruits, vegetables, wild rice and such for a week. The second week lemons and limes could be added. It was very limiting.
I was so relieved to see the paperwork from my LLMD which is much less severe. The diet was put out by the University of Wisconsin.
Day 1: I stuck with the more stringent diet for most of the day, drinking green smoothies and eating nothing solid until dinner. At dinner, I had a small serving of organic wild rice and organic mixed vegetables stir fried with garlic. I felt as though I had the flu. My body was very unhappy. Part of my family had Chinese food for dinner and some had frozen pizza. Both quite tempting. It helped that I felt like poo.
Day 2: Again, I only consumed green smoothies during the day. Dinner consisted of a piece of baked organic chicken and plain acorn squash. I made pulled pork for my family which smelled scrumptious, but I was a good girl.
Day 3: Another green smoothie for breakfast. I broke and had a decaf coffee, though. I ate a burrito bowl at Chipotle for lunch, picking out only the ingredients that I was allowed on the elimination diet. I have to say that Chipotle is VERY allergen friendly! Dinnertime meant a piece of my leftover baked chicken and leftover vegetables. My family had grilled hamburgers…we call “Papa Burgers” as my dad made them. They looked and smelled and I’m sure tasted amazing. I abstained.
Day 4: I had more solid food today. I’ve found that I absolutely LOVE dried figs, so I’ve had a couple of those today. Of course, a decaf coffee; I just can’t stay away from the stuff, I guess. As good as I’m being with everything else, coffee haunts me. I know decaf contains a small amount of caffeine, but my apologies to the doc, I can’t skip it. Some wonderful hummus with gluten-free, dairy-free crackers and a handful of cauliflower florets made up lunch. An incredible smelling chicken and lentil soup is bubbling slowly on the stove for dinner whilst my family’s pork hocks in sauerkraut are sidled up next to it. Tonight I even put together a dairy-free, gluten-free, coconut sugar apple crisp. I can’t even begin to tell you. I’ll post recipes, you won’t be disappointed!
So, what is this doing? In short, the Elimination Diet is intended to reduce inflammation in my body. Anything that might set me off with GI, pain, neurological or inflammatory symptoms is to be avoided indefinitely. To find out what might be doing these bad things to me, I’ll begin to reintroduce foods one by one after few weeks without any of them.
The first four days have found me 10 pounds of water lighter. I am so relieved to be losing some of this painful swelling. So I will reserve my judgment as to whether this is going to work perfectly, but I’m hopeful. Ever hopeful
Posted in Lyme Disease, Recipes | Tagged dairy-free, Elimination Diet, Gluten-Free, Lyme, Lyme Awareness, Lyme Disease, Lyme Disease Awareness, Lyme Symptoms, Neurological Lyme, Recipes | 2 Comments »