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Letter to Lyme

Dear Neuroborreliosis aka Lyme disease,

Due to your presence in my life, so many things have been lost: My ability to drive, my ability to walk, my hobbies, my job, my freedom, my home, etc. The thing is that you’ve likely heard this from so many unfortunate souls who have had the displeasure of your company. What you may not have heard is how being forced to slow my supersonic life has changed me for the better. I was moving at such a fast pace every day that I didn’t have time to care for myself. This is likely how you moved into my brain so drastically. I was living beyond my means and working beyond my capacity to pay for everything. Life is simpler now. I have seen the best in some of my loved ones. I’ve seen how much they truly love me, and I love them even more for it.

No, I will not be thanking you as I long for some semblance of an active life again, but I will say that I do see the silver lining on the Lyme green cloud.

Sincerely,

Lymeblue

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Reminder to Internalize

Health – It’s been so long since my last post. My sensitivities are crazy awful. It has been one month since I stopped antibiotics. I can’t possibly tell you all of the back stepping. I will not give in, however, and push to maintain my albeit limited activities everyday.

Love - Once more I have to say that I am extremely lucky to have a husband who is willing to be whatever I need. He has adjusted his life in so many ways to accommodate my illness. I loved him before and love him so much more today.

Internalize – After an extended period of verbally keeping my symptoms quiet with certain loved ones, a couple of short discussions in the last two days remind me to keep it to myself.

I despise symptom competing. There are others in my life who suffer from illness. I feel for them and wish them relief. I do not wish any of this on them, and when my symptoms suddenly become theirs, it troubles me for multiple reasons.

Are they coming down with these problems so much like mine because they are misdiagnosed? I pray it isn’t so but fear it is. Lyme disease is often misdiagnosed as MS, ALS, fibromyalgia, and many other chronic and deadly illnesses.

Is it a coincidence that they suffer from these things after I talk about them? The last thing I want to do is presume that someone I love is playing it up or suffering from a psychosomatic illness. Perhaps that they feel as I do shortly after I talk about it is simply a coincidence time and again.

These couple of recent talks confirm what I had decided last year, there are people in my life that I at one time could turn to with anything, but I no longer am able to confide in with a clear conscience.  For their sanity a well as my own, I will return to silence.

I would love to hear if anyone else has had a similar experience.

Peace,
LymeBlue

Lyme is on my Nerves!

My stretches away from the computer and all other electronics are growing longer.  Although reading has been difficult at best since 2010, it has become more troublesome as has the sound emitted from the computer.  The phone has been a huge problem.  It’s quite hard to explain the static-type sound that seems to reverberate in my brain.  The pulsing sensations are more severe than ever.  Perhaps I should consider an aluminum foil hat as my doc mentioned that Dr.  Klinghardt would recommend.  I probably should have done that for Halloween. ;)

The positive news is that the tremors and muscle spasms have died down quite a bit.  I’m so grateful for that!  I’ve also seen a dramatic decrease in joint pain with the strict removal of gluten from my diet.  These are positive steps!  Of course, I seem to be unable to take a step forward without the inevitable backward two-step.

My follow up with the eye doctor reveals a worsening of my optic nerve cupping.  This visit was wrought with bright-lighted testing through dilated eyes and was followed by days of the most severe headache I’ve had in some time, but it was the symptom that appeared a few days later that stopped me in my tracks.

I have never been stabbed or shot in the face; however, that is the only way I could describe this pain.  I primarily feel it on my right side from the front of my ear to the middle of my cheek.  It’s a very deep, face-splitting pain when it flares.  Now that it is irritated, I constantly have a dull ache on both sides, but that is tolerable and also runs up to my temples.  It is the intermittent pain that is impossible to live with.  So a call to the doc gets me a new supplement and removes one antibiotic.  Is this the best course to combat what I’m supposing are the bugs running a muck?  Again, no idea. 563px-Gray778_Trigeminal

So, I’ll be calling my local primary for help.  Hopefully, she’ll have some palliative treatment for what I have found out is Trigeminal Neuralgia.  Omg, I can’t imagine picking up the phone after completing all of my online tasks this morning.  Maybe I can request an appointment online.  Wish me luck.  ;)

This is my Brain on Bugs.

Peace

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DSCN3123Yesterday 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.

Medication List 20131022-page-001

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 equip_medical_laryngoscopehave 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.

Peace

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Spirochaetales

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?

From National Institute of Neurological Disorders and Stroke

Tabes Dorsalis

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?

Penicillin, administered intravenously, is the treatment of choice. Associated pain can be treated with opiates, valproate, or carbamazepine. Patients may also require physical or rehabilitative therapy to deal with muscle wasting and weakness. Preventive treatment for those who come into sexual contact with an individual with tabes dorsalis is important.

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.

Families & Genera640px-20100905_211652_Spirochetes

Peace

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Launch of the Elimination

IMG_20120928_083906These 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

LymeBlue Recipes

University of Wisconsin Elimination Diet

Peace

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Loneliness Hits Hard

Perhaps it’s that I was 3 days in to my elimination diet (I’ll discuss that in my next post), one of the disease’s effects on my brain, or simply coincidence that I’m super emotional.  Whichever it is, I sure do hope it passes as quickly as it hit me.  I have found myself in a house full of loving family and still feeling utterly alone.

I know this feeling of isolation is not the fault of anyone.  Nothing happened out of the ordinary.  A simple question posed by my husband sent me spiraling into a very dark place. He asked me how I know that the many prescriptions aren’t causing my symptoms today.  Now normally, although it may have taken me time to answer, I could have done so without any emotional attachment.  This time, however, I felt as though he was no longer on my side.  My biggest supporter, my loving husband who has been fighting beside me all along, and I immediately placed him squarely on the “other” team.

The cherry on the sundae (a great analogy since I can’t eat ANYTHING…lol), was that my mother, who has been by my side through even more in my life and has been my avid supporter, did not seem to notice that I spent the afternoon bawling.  Eyes swollen, face red, and nose completely full, and she paid me no mind.  I’m not normally a crier nor am I one to dramatize, so for me to be crying all afternoon was out of the ordinary.  I just thought she’d ask if I was alright or something.  But, nada. 

So alone I was.  WEDDING_MANDAS233

My husband came to me before bed and told me how very much he loved me, and I found this note:

“I support you 110%. Just want you better. Don’t every feel alone. I’m in this with you.  We are a team, remember that.  I love you so much. You don’t understand how much.”

Of course, my need to make my point prevailed. My answer:

“Yes, we are a team.  I have always felt that you were my biggest support. Maybe it’s just the psychological mess this disease makes in the Lyme brain. I don’t know, but I’m especially sensitive to your words. I wish I could change that. It’s like the day that you were hounding me about explaining brain fog.  Today the way you were presenting your question with dad cracking jokes and you laughing along with him…well, it made me feel very alone. I’m sure you didn’t anything by it. I just don’t think I should have to justify the need to use antibiotics to kill bacteria. Do cancer patients have to explain why they need chemo? Do Syphilis patients have to justify antibiotics? Or TB patients? It’s crazy to me, and when I hear a similar questions from you, it makes me feel alone.  I love you and appreciate you.  All of the support and patience you normally offer me are amazing. I’m so grateful.  I hope you know.”

This morning, with as fresh as they can be, puffy eyes, I looked into the topic of Lyme depression. Dr. Robert Bransfield seems to have done some serious study on this topic. He finds that psychological, neurological and cognitive symptoms manifest late in the progression of Lyme disease.

“The basic hierarchy is pre-frontal cortex, para limbic association areas, limbic structures, and brain stems – hypothalamus. Lyme encephalopathy can result in dysfunction of the modulation centers, inhibitory pathways, and stimulatory pathways. Autopsies, animal studies, and brain imaging tests have contributed to this understanding. The presenting symptoms of Neuropsychiatric Lyme Disease are sometimes emotional in nature, and include [OCD], depression, and aggression, panic disorder, and other phobic disorders.

In considering the behavioral symptoms these patients can become suddenly suicidal and there have been completed suicides attributed to Lyme disease.”

We have lost far too many Lyme warriors.  This compassionate video contains a memorial list:

Lyme Disease and Suicide, An Ignored Problem

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I certainly know that I’m not alone! Love you all!

This is my Brain on Bugs.

Peace

Please like and share to support our cause.  Many thanks!  facebook.com/lymeblueweb and facebook.com/lymeblueshop

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