A while back, I was contacted by Erica from the blog Suffering The Silence about doing a guest post for their site. Of course I said, “yes!” and am pleased to announce the post went up today. It is entitled The Deep Endand I am very excited to share it with you.
“My legs were too weak to stand and my brain too broken to sleep. I spent buy soma watson brand online most of 2012 and 2013 lying agonizingly in my bed. Days became weeks. Weeks became months. Over time, my 10-year battle with Lyme Disease seemed impossible to overcome.” – For the full article, go to: http://sufferingthesilence.com/jenny/#sthash.wzdpOo3k.dpbs
As always, please feel free to leave a comment below.
The bacteria are called “Brucella.” The illness caused by those pesky bacteria is called “Brucellosis.” I have just completed week three of my Brucellosis treatment. Time files when you’re having fun (read with sarcasm). I have been uncertain how to effectively address this topic as there is not much info regarding Brucellosis in the Unites States. After all, this bacterial infection has supposedly been eradicated from much of the U.S., but somehow, I now find myself being treated for it. I know others that have tested positive for this infection. Perhaps it is not so rare after all.
How is Brucella transmitted?
First, Brucella can most commonly be acquired by humans through the consumption of infected meat and dairy products. This infection is not limited exclusively to cows. Deer, chicken, bison and other animals can be carriers of this infection as well.
Almost makes me want to become a vegetarian. Bleh!
Second, the bacteria can also be transmitted when human skin wounds come in contact with tissues, secretions or excretions of infected animals.
Isn’t that a lovely thought. Yikes!
Third, if any of those infectious materials I spoke of in the previous two paragraphs become aerosolized (like a mist of spray coming out of a can), Brucella can also be inhaled.
That’s a little scary.
Lastly, it can be acquired through the bite of an infected tick and like all tick borne infections, if not caught and treated early, it can lead to a whole array of chronic problems.
What symptoms might someone who has been infected with Brucella display?
Some of the symptoms associated with an infection of the Brucella bacteria include weight loss, abdominal pain, joint and back pain, insomnia, depression, constipation and fatigue. Since these symptoms can often be indicative of other illnesses, the level of difficulty to accurately diagnose this infection is quite high.
How can Brucella be detected?
Brucella can be detected in a traditional manor by using a Brucella Antibody IGG/IGM screen. If the Brucella Antibody Screen is positive or equivocal, a Brucella Antibody with bacterial agglutination is done for confirmation. Brucella was detected in my friend using these tests.
Alternatively, Brucella was detected in me using the FDA approved device the Zyto Scan. I will eventually do a post on the Zyto Scan in greater detail, but suffice it to say I was initially a huge skeptic about the concept of biocommunication between my body and a computer. My Nurse Practitoner, along with one of the country’s leading Zyto Scan practitioners and I teamed up on a phone call to do a remote scan. The results were unbelievably accurate. Symptoms I had told doctors about, symptoms I hadn’t even mentioned yet and even previous blood work ALL showed up on my scan. In addition to confirming the areas I knew were problematic, the Zyto Scan also revealed a serious Brucella infection. My Nurse Practitioner compared my scan results to my clinical presentation and conferenced about my case with a leading physician in the treatment of tick borne diseases. She concurred that Brucella is one of the underlying co-infections that I am in fact battling.
I have not spent much time on farms or near farm animals in the United States, so that seems improbable. I am not a big meat eater and I do not enjoy cooking, so even more unlikely is the chance that an open wound I might have had came in contact with tissues or bodily fluids of an infected animal. What is however more realistic, is that I obtained this infection through one of two ways–a tick bite (and we already know I have had at least one of those suckers) OR from my summer spent in the Dominican Republic years ago where farm animals openly roam the streets and Brucellosis is more prevalent. Whichever the case may be, this is a question that will never have an answer.
How is Brucellosis treated?
Most people with Brucellosis will recover in 2 to 3 weeks even without treatment. In cases like myself where the illness has become chronic, Brucellosis is typically treated with a combination of two antibiotics for two or more months. For my situation, the combination we are using is 600mg of Rifampin once per day and 100mg of Doxycycline twice per day. These medications have to be taken at specific times so as not to interact with one another. Sadly, relapses are common.
My Treatment Protocol
Below, I have included my new treatment protocol. I have my alarm set to go off multiple times per day to remind me of when to take the lengthy list of medications, herbs and supplements.
Medication Schedule
8:30: Nature-Throid and homeopathic adrenal supplement 9:00: 600mg of Rifampin 10:00: Eat breakfast and take:
200mg of Hydroxychloroquine
B12
Methylfolate
B6
D-ribose
Brain/Nerve Cleanse if needed
Lymph drops
Vaccine Detox Drops
Vitamin C
Interfase Plus (for biofilms)
Glutamine
Ginko Biloba
12:30: 100mg of Doxycycline 2:10: Take Samento 2:30: Eat lunch and take:
Vitamin C
Vitamin D
K2
D-Ribose
Probiotic
Sacc B
Glutamine
Ginko Biloba
Lymph Drainage
Vaccine Detox
Homeopathic Adrenals
6:10: 30 drops of Samento 6:30: Eat Dinner and take:
Lymph Drops
100mg of Diflucan
9:00: 100 mg of Doxycycline 9:30-11:00: Bedtime
Querectin
1 Drop of Ashwaganda
Clonazepam
Soma
5-htp
GABA
Melatonin
Magnesium Glycinate
This phase of treatment has not been easy. About two weeks ago, I began to be hit quite hard with the dreaded “herx” reaction, where there is an exacerbation of symptoms as the bacteria begin to die-off. I have tried to continue with my usual detox protocol in an attempt to combat those symptoms (light exercise, detox baths, infrared sauna, etc.), but I am once again finding myself feeling very depleted. After having spent most of 2012 and 2013 being bedridden, depletion is a scary place for me to be. I am going to resume a more consistent acupuncture schedule as that has proven to be an extremely beneficial adjunct to my treatment. I will also try my best to remain hopeful and optimistic that this too can be conquered and continue to carry with me the belief that better days are yet to come.
Although the past three weeks have been difficult, there is still the potential that this could be a positive turning point for me in my healing from Lyme Disease and it’s co-infections.
Are you battling Brucella? I would love to hear from you! As always, please feel free to leave me a comment.
Last week, I had my eight-month follow-up phone consultation with my Lyme Literate Nurse Practitioner. During the past four months, my full time job has been to diligently continue to follow my treatment and detox protocols. It seems it may be helping! For the first time in many years, I am ever so slowly and gradually climbing up the mountain, rather than continually tumbling down it. At this time last year, I was still bedridden and isolated from virtually everyone and everything. I wondered if there would ever be light in the midst of such a dark situation.
Well, the light came. It came in the form of celebrating healing milestones, things I hadn’t done in years. It came when I challenged myself to believe whole-heartedly that there were better days ahead. Most importantly, it came when I stopped telling myself I could no longer participate in life and began taking small risks believing I could live a more abundant life again. Although this journey is still marked with tremendous ups and downs, I am so happy that the light finally seems to be shining!
These Are The Areas Where I Have Seen Improvement:
1) I am still treating my Lyme Disease and co-infections with a combination of medication, supplements and herbal antimicrobials. About three months ago, I was able to achieve taking the full doses of all of my medications. This is huge for me as I typically am very chemically sensitive regardless of what the substance may be.
2) After some trial and error with treating my hypothyroidism, I have found that I can tolerate Nature-Throid. I am slowly increasing my dosage over several weeks but am confident that I will be able to get my thyroid levels into a healthy range by my next treatment update in 4 months.
3) I have been able to make small increases in the supplements that I take to support my body’s ability to detoxify Lyme toxins through a process known as methylation. Supporting the methylation cycle will, over time, boost my immune system and increase my energy. Fatigue has been one of my most intense and relentless symptoms.
4) When symptoms allow, blogging about my journey to wellness has allowed me to connect with some wonderful people throughout the world. I really enjoy writing and am grateful that this passion reemerged in the midst of my struggle with a chronic illness.
5) When I began Lyme treatment last November, I committed to completing a 20-session restorative yoga program as part of rehabilitating myself from months of prolonged bed rest and 4 years of inactivity. For 8 months, I have struggled with fatigue, aches and pains as I work my way through each session. I can feel that I had gotten a bit stronger. When I am finished with the program, I plan to purchase myself a piece of Pilates equipment called the reformer so that I could begin some gentle resistance training. I have greatly missed having movement and exercise in my life and I look buy pain o soma online forward to the day when I can include it as part of my daily life with some amount of consistency.
6) I will begin attending a monthly Lyme Disease support group in the city of Chicago. Our first meeting will be in August but we already have a Facebook forum online. I am very excited to be connecting with my fellow Lyme fighters as I try to break some of the isolation this illness has caused for me.
These are the areas I HOPE will continue to improve over the next 4 months:
1) A new infection has surfaced in me called, Brucella. It is a difficult to treat infection and the relapse rate is very high. I am fortunate that my Nurse Practitioner will be able to consult with the world-renowned Lyme Disease specialist, Dr. Horowitz, on my case regarding a proper treatment protocol. This will almost certainly require the use of multiple antibiotics taken over a long period of time. I am nervous about this and anticipate that I may take a couple of steps backward in order to move further ahead eventually. I should have my new treatment plan in a few weeks and am hopeful that all the rebuilding my body has done over the last 8 months has prepared me to undergo this treatment.
2) I hope to see an increase in my energy and a higher degree of functioning. I am anxious to accomplish this new healing milestone.
3) I would like to see my thyroid levels reach the normal range, as I believe this will be key in helping me see an improvement in my energy levels.
4) I will continue to address the genetic defect I have in my methylation cycle through specific supplementation and aim to be able to increase them to the appropriate doses for optimal functioning.
5) I would like to see my ability to sleep continue to improve as well as my ability to nap.
6) I want to continue to reconnect with friends, both old and new.
7) I would like to have a noticeable increase in strength and endurance as I continue to implementing a reconditioning program.
8) For two years, my wonderful husband has kindly been my chauffeur to nearly everywhere. I would like to feel strong enough to drive by myself whenever I need to or want to go somewhere. Hopefully, you will see a pic of me wearing a driving cap soon!
My eight-month consultation ended with my nurse saying, “We are on the right track and you have done a wonderful job of combining various treatment strategies into your own unique protocol.” This illness has taken more determination, more perseverance and more strength to continue to forge ahead than I can ever truly describe. I know that my battle is not yet over, but I do find comfort in knowing we are on the right track and I finally feel as though I may actually be beating Lyme instead of the other way around.
In March, I had my thyroid and iodine levels checked. The blood tests had indicated sub-clinical hypothyroidism. What this means is that I have a TSH level that is slightly out of the normal range, but my T4 and T3 levels remain in the normal range. I also showed a slight deficiency in iodine levels. For whatever reason, I have difficulty tolerating any type of supplement or medication that can potentially be stimulating. I had been on thyroid medication before, but with great difficulty. Not wanting to derail any progress I had made, my nurse decided she would gently treat me for a few months with iodine to see if I could get my TSH levels back into a healthier range. Despite taking the iodine and continuing on my Lyme treatment plan, I have continued to experience some mild symptoms of hypothyroidism (weight gain, muscle pains, dry skin, etc).
Two days ago, I had my routine, monthly follow up with my Lyme Nurse Practitioner. After some careful discussion, she confirmed that I was still exhibiting symptoms of hypothyroidism and that the iodine had not done enough to restore optimal thyroid function. In the past, I had used Armour, a natural thyroid preparation made from porcine glands (such a lovely thought). My longest stretch of Armour usage was about one year, during which I continually experienced nervousness, jitteriness and a few other strange symptoms for the duration of time I was taking it.
My nurse practitioner felt that since Armour is made with both T4 and T3, perhaps I did not need the extra T3 and had begun to experience symptoms of hyperthyroidism instead. Since no one had ever bothered to re-check my blood levels, we can only guess this is what had happened.
We decided my best course of action this time around would be to try a T4 only preparation in the form of Levothyroxine, beginning at the lowest dose of 25mcg and working up if need be. Excited about this new treatment plan, hubby and I swiftly went to the pharmacy and I gulped down my first pill before I was even out of the store!
One hour went by. I felt nothing. Feeling nothing is usually a good sign with me as it means I am not reacting negatively. I thought, “This is it. This will finally be the right medication.” As the next few hours progressed, I had forgotten I had even taken the pill.
Approximately three hours after I had taken the medication, I began to feel buy soma online without prescription burning pain up my spinal cord and a severe sense of achiness right down to my very bones. I shivered with chills and had to cover up with a blanket. I tried to go to sleep, but despite taking my normal sleep medication, I was unable to catch even a wink of sleep. At 4:00am, I was up dry skin brushing and taking an epsom salts foot bath trying desperately to calm the burning sensation that was occurring throughout my body. I rubbed some calming essential oils on my wrists, took some additional sleep medication and finally fell asleep for a few hours. This was not the intended reaction to the medication.
As is often the case with Lyme Disease, nothing is ever very simple. This can get very confusing and actually quite frustrating.
Yesterday, I opted not to take the medication. I am not sure I feel brave enough to go through that again. It just may end up as yet another addition to the ever-growing dizzying spiral of medications and supplements. It takes a lot out of me when I have to endure those excruciating flare ups of burning in my brain and spinal cord mixed with sleepless nights. I am meeting with my local LLMD (Lyme Literate Medical Doctor) next week and will run this scenario past him for a second opinion. I don’t know why I have this sort of reaction to thyroid medication and I am feeling a little bit dismayed at the moment. Since all of my doctors and nurses visits are paid out-of-pocket, I hate having an unproductive visit and that is currently how I am feeling about this last one.
Hopefully, I can get this piece of the puzzle in place soon. Progress has been made but it is very slow going. I will be investigating an interesting new treatment approach during the month of June that may help to direct the next steps of my treatment that I will be writing about. In addition, next month I will also be writing a full 8 month treatment update so I can compare my current progress from that of 4 month ago. Until then, I will be brushing up on the anatomy and physiology of my thyroid gland.
Don’t be jealous.
I would love to hear from you about your experiences taking thyroid medications. Has it been helpful? Did you have trouble tolerating the medications? Please feel free to leave me a comment.
To read the update to this post, please click here.
When I began treatment 6 months ago, I made a decision to share my successes publicly, via social media and blogging, with my friends and family. I had hoped to paint a picture of someone who could overcome the adversity in her life and emerge changed and victorious. The truth however is that recovery is very tricky, with lots of twists and turns along the way. There is much trial and error involved in finding a treatment strategy that will yield even slight improvements. I often do not post about these difficulties, shielding my friends and family from seeing the full spectrum of just how destructive this illness is. After reading a recent statistic from the online medical journal PLOS that Lyme Disease is 6 times more prevalent than AIDS in the US, I knew I had to convey the most realistic image of what battling Chronic Lyme Disease is really like. With Lyme Disease becoming a global pandemic, my story could very easily be the story of you or someone close to you. So here ya go. The 9 truths about this illness you won’t see mentioned on my Facebook page…until now.
1. I am still homebound more than 75% of the time.
Since I have chosen to really only reveal the moments that I feel are celebratory in nature, no one sees the moments where I am too weak, fatigued or in too much pain to get out of bed for days and sometimes even weeks. I am not a partaker in the selfie craze and don’t post sick picks. Believe me! Although you are not seeing pics of me in the throws of my illness, I am still very much in the midst of fighting this battle and unless remission comes to pass, I will likely be fighting it for a very long time.
2. I am still very isolated by this illness
As you can imagine, since I am primarily homebound, the majority of my time is still spent alone. Only on a rare occasion will I feel well enough to see someone in-person. I don’t say this to invoke pity but rather to encourage those who may know someone who is chronically ill to reach out to them from time to time. It does not require much. Just let them know they are still cared for and not forgotten.
3. I wake up everyday, take inventory of how I feel and decide if there is enough fuel in the tank to do something or go somewhere.
Most of the time there is not. The days I feel bad still outweigh the days I feel good. Instead, I stay home and try to come up with creative ways (like blogging) to pass the time until a day comes that I can “do” something again- which is an excellent lead in to my next point.
4. I often have to give myself a pep talk just to get out of the house.
Fatigue, pain, a burning brain and spinal cord are constantly present. Somedays I have the capacity to tolerate this and can rally myself to go out for a few hours here and there. These times are still in the minority though but I hope with continued treatment, leaving the house will one day be something I can do without much thought.
5. You will likely not be able to tell if I’m having a “good day” or a “bad day” by a photo.
Oddly enough, some of my best pics were taken on the worst days. This is most likely due to the fact that knowing I felt so ill, I made my hubby take 25 pics before I finally found one that I deemed buy watson soma online overnight delivery “postable.” If you saw the other 24, you probably could guess I wasn’t feeling well that day.
6 The road to recovery is actually quite bumpy.
There is no one-size fits all approach to treatment. Some use IV antibiotics. Others take oral antibiotics. Still others, myself included, are using a combination of medications, supplements and herbal antimicrobials. Nearly all of us will see several doctors over the course of our illness and try various treatment approaches until we hopefully find one that begins to get us on a healing path. Even when we find a suitable treatment we must contend with recurring Herxheimer reactions, or Herx for short. This is a sudden and exaggerated inflammatory response caused when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. An exacerbation of old symptoms, as well as a flare up of new symptoms, can occur. The very treatments that aim to make us well can, for a period, make us feel much sicker.
7. Bizarre symptoms pop up almost daily.
When my brain starts burning, that’s weird. When my facial muscle starts twitching, that’s annoyingly strange. When I awake in the morning to an ankle that feels like it was broken sometime during the night, that’s just bizarre. The sudden and exaggerated inflammatory response that I spoke about in number 7, can cause a wide range of migrating and unpredictable symptoms. Be glad I do not post those on Facebook. You would not be able to keep up with them!
8. Lyme Disease treatment is most likely not covered by insurance and patient’s are forced to pay out-of-pocket for some or all (in my case ALL) of my treatments.
Yes, you read that correctly. I have paid out-of-pocket for every single doctor’s visit, lab test, medication, supplement, herb and Lyme treatment I have received for the last 4 years. Sadly, my scenario is not uncommon as Lyme Disease places an enormous financial burden on those of us who have it. This sum of money amounts to hundreds if not thousands of dollars per month depending on the treatment a patient may be undergoing. 43% of us are not able to work (myself included) due to the severity of our illness making the financial strain even more stressful.
9. Despite me being ill, my husband is still as lucky to have me as I am to have him.
In the last few years, I have had several people make the comments to me, “You are lucky your husband stays with you.” or, “You are lucky to have him.” Yes, those statements are true, however I am not less of a person because I am ill. I still have the same heart, interests, sense of humor, etc. We still spend hours supporting one another and making each other laugh to the point of tears. My husband does not look at me and see a sick person. He sees me and notices that my uniqueness has not disappeared.
Well, there you have it. The inside scoop. An honest look at what living with Chronic Lyme Disease is truly like. You will likely not see these topics appear on my Facebook page anytime soon, but know that my journey is far from over. The very essence of having a chronic illness is that it is invariably, going to recur again and again. Ingrained in me is the desire to persist so I will still continue to fight in the hopes of one day achieving a full recovery. I look forward to celebrating many more healing milestones and experiencing life in full again with my friends and family.
As an Occupational Therapist and chronic illness suffer, I am passionate about sleep. After all, sleep truly is the most important occupation you will ever engage in throughout your life. Sleep is vitally important for us to heal and rejuvenate, but for some of us, it has become a near impossible endeavor.
Sleep can be impacted by several factors including extreme stress, illness, hormonal imbalances and a poor sleep regime. I first became an extreme insomniac in 2010, when I lost the ability to sleep altogether due to Chronic Neurological Lyme Disease. One day, I was sleeping 10-12 hours a day. Two month later, I was no longer able to sleep at all. In a quest to one day return to a blissful night’s rest, I have combined my own professional understanding of the mechanics of sleep with numerous books, articles and consultations with experts in the fields of Sleep Medicine, Lyme Disease, Chronic Fatigue Syndrome, Fibromyalgia and Adrenal Fatigue. In part one of my post, I have compiled a list of basic sleep strategies recommended to help promote sleep. In addition to treating the underlying condition triggering your insomnia, it is imperative that you tighten up your sleep hygiene to ensure it is not contributing to your inability to have a refreshing night’s slumber. My hope is that you will find at least a few unique tips that you have not yet tried in your mission to overcome insomnia.
Finding Your Sleep Rhythm
1. Find time to go outside during the daytime hours, preferably in the morning, to get exposure to natural light. An average of 20 minutes of exposure without wearing sunglasses is generally recommended. The sunlight needs to reach the pineal gland in your brain via the optic nerves in your eyes. This exposure to sunlight will increase your brain’s production of the feel-good neurotransmitter serotonin, which remarkably, is a precursor to melatonin. Warning: Do not stare directly at the sun when outside. Doing so can increase your risk of developing cataracts.
2. Give your body the opportunity to establish a daily and nightly rhythm by going to bed and getting up at the same time each day.
3. By 10:00pm, you should stop watching tv, using the computer or your cell phone. The light from those devices may cause your body to still think it’s daylight and may halt the production of melatonin to induce sleep.
Dietary Considerations for Insomnia
1. If you have not already done so, you should quite smoking. Nicotine acts as a stimulant which can make it difficult to fall asleep. Also, nighttime nicotine withdrawal can cause you to awaken.
2. Do not consume alcohol before you go to bed. For a variety of reasons, this can decrease the quality of your sleep.
3. Do not consume caffeine after 4:00pm. This includes stimulating coffees, sodas, teas (besides herbal teas) and chocolates.
4. If you have frequent nighttime urination, reduce your consumption of liquids near bedtime.
5. Eating a small snack of protein and fat, such as a handful of cashews or walnuts, before sleep can be very helpful. This can promote a more restful night’s sleep by stabilizing your blood sugar. Low blood sugar in the middle of the night can create a surge of adrenaline buy soma usa causing you to wake up. If you find yourself waking in the middle of the night, eat another small snack normalize blood sugar before returning to bed.
Your Bedroom Environment
1. You should not use your bed for watching TV or doing work.
2. You’re room should be a cool, comfortable temperature.
3. Make your room as dark as you can or consider purchasing a sleep mask to keep out as much light as possible.
4. Continually watching the clock can perpetuate sleep problems so be sure to place the clock at an arm’s length and facing away from you.
5. If you have a partner that snores, you may need to consider buying a pair of ear plugs. If the snoring can still be heard through the ear plugs, you may want to sleep in a different room until you can find another method that enables you to sleep soundly despite the snoring.
Preparing for Sleep
1. Incorporate some mindful breathing when you first lay down to sleep to help relax the mind and body. Place one hand on your heart and the other hand on your belly. Inhale through your nose as you direct your attention to the rising of your belly as your lungs fill with air. Exhale through your nose as you feel the lowering of your belly as oxygen is gently expelled from your lungs. Repeat this sequence for 5-10 minutes.
2. Practice Corpse Pose. Lie on your back with your neck comfortably supported and your arms out to the side with your palms facing upward. Straighten your legs and let them roll outward. Allow your body to become heavy on the bed as you inhale and exhale with the natural flow of your breath. Permit your body to sink even further into the bed as you come to a state of total relaxation. Remain in this position for 5-10 minutes.
3. If you find your mind racing, worrying or problem solving while trying to fall asleep, get up and take a few minutes to write down all of your thoughts in a journal until you cannot think of any more. Set those concerns aside and return to bed. Repeat this exercise as often as needed to calm an overactive mind.
Natural Sleep Aids
The following is a list of supplements often recommended by Integrated Health Practitioners to assist you with getting a restful nights sleep. Please consult with your physician regarding dosing, side effects and drug interactions before incorporating any of these into your nighttime routine.
Additional Resources
The following three books are books that I personally have found to be particularly useful in my mission to beat my chronic insomnia.
1. From Fatigued to Fantastic, Jacob Teitlebaum, M.D.
2. Revive, Frank Lipman, M.D.
3. The Triple Whammy Cure, David Edelberg M.D.
In my next post, I will provide some additional tips and resources for those of us whose insomnia, despite having a solid sleep hygiene program, continues to persist. Don’t lose hope! This can be a frustrating situation to endure, but it is one in which improvement can, and often is, found.
Since the beginning of my illness, I have always chosen to be very open about sharing my experiences with others. Somehow I felt that the burden to hold in “the truth,” was more painstaking than being honest about what was going on in my body. The full severity of my illness was probably only known to my family and close friends, but I was happy to share my story with anyone who asked. I believe, like the above quote states, that others can find meaning in my personal story. Below are the 5 reasons why I chose to and continue to choose to remain open about my health struggles:
1. Chronic Lyme Disease is called the “great imitator” for it’s ability to mimic other illnesses.
Patients are often misdiagnosed with conditions such as MS, Chronic Fatigue Syndrome, Fibromyalgia, ALS and Parkinson’s. Treatments aimed at these other diseases, generally do not yield much improvement for patients when the root cause is in fact, an underlying infection from the Borrelia bacteria or one of it’s pesky co-infections. I had been diagnosed with a list of ailments including Interstitial Cystitis, Pelvic Floor Dysfunction, Chronic Pelvic Pain, Adrenal Fatigue Syndrome, Hypothyroidism, Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity Syndrome –ALL of which can be symptoms of Lyme Disease. Many will remain undiagnosed unless enough awareness is raised for the idea that these other “illnesses” may instead be symptoms of Chronic Lyme Disease.
2. The profound fatigue, pain and neurological issues that often accompany Lyme sufferers is very isolating.
We are often forced to quit our job and stop participating in social or leisure activities. Many of us become housebound and bedridden for significant periods of our illness. I persevere in telling my Lyme story in the hopes that those buy soma 350 struggling the most will read it and feel encouraged that improvement can come no matter how desperate the circumstance may seem.
3. Lyme Disease is not well-known, well-researched or well-respected in the medical community.
By speaking and writing about Lyme Disease, I am able to contribute to the grassroots efforts of fellow Lyme sufferers to increase the understanding of this illness. The more information available to patients, the public and the medical community, the more people will notice that this is a real and disabling health crisis in our country today.
4. I have found strength in numbers.
Through attending support groups, uploading photos on Instagram, posting my status on Facebook and Twitter and blogging, I have been able to connect with so many wonderful people from around the world. Each of us are striving in our own way to have victory over our respective illnesses. As a result of sharing our stories, we have been able to encourage one another in the midst of the dark times and celebrate milestones during the better times.
5. I am passionate about being an advocate for myself and others with Lyme Disease.
Navigating the complexities of finding an accurate diagnosis and pursuing proper treatment can be very overwhelming for patients and their families. Despite my healthcare background, I too found obtaining a proper diagnosis and treatment plan challenging. Now that I feel I am on a better road to achieving wellness, I write openly about my treatments so that others may have some additional ideas and resources to discuss with their physicians.
I believe the more honest and real I am about my battle with Lyme Disease, the more people can be helped by my experience. Tell me, why have you chosen to or not chosen to tell your story?
This week, I had my four month follow-up via phone consultation with my Lyme Literate Nurse Practitioner. I had spent much of 2012 and 2013 bedridden and unable to perform most of my activities of daily living. I required the assistance of my husband for most everything and I estimate I was functioning around 5% of my normal self for nearly a year and a half. I have written a few posts describing those dark days and grappling with the reality that Lyme Disease was slowing stealing my life. Somewhere between late October and mid November, I reached a point of desperation as the treatments I had been trying with my previous doctor had yielded no results. After reaching out to others in the Lyme community and hearing their experiences, I decided there was still enough hope and fight in me to once again look for a new practitioner to treat me.
Enter Nurse P. I had known about Nurse P. for several years. Her story is much like mine where her initial symptoms presented as a bladder condition and then eventually progressed to the point where a series of tick borne infections were identified. I felt that since Nurse P. had experienced both my bladder condition and Lyme Disease herself, she would be the right person to develop a new plan of attack for me. I had my first phone consultation with her in mid October. She ordered a series of tests including vitamin D, CD 57, a urine culture, 23 and me genetics testing, Adrenal Stress Index and a blood stain from Fry Labs. By mid November, all of my test results had returned and the picture of what I had been dealing with for nearly a decade, finally became clearer. I was both happy to have some answers and overwhelmed by the long road that now was in front of me.
Nurse P. confirmed an abysmal vitamin D level and a very low CD 57 indicative of the Lyme bacteria, Borrelia burgdorferi, and an immune system that was slowly being drained. The blood stain from Fry labs showed evidence of the Lyme co-infections, Bartonella and Protomyxzoa. Finally, the 23 and me genetics results revealed MTHFR and COMT mutations reducing my body’s ability to perform methylation making me feel even more fatigued and impairing my liver’s detox capabilities. Armed with this new arsenal of information, we were ready to put my treatment and detox plans into action.
Areas of Improvement:
1) I have been treating with a combination of medication, supplements and herbal antimicrobials from the Cowden Protocol. When I began treatment, I had a very poor tolerance for any sort of medication or supplement and would often have a bad reaction or major set-back. Thus far, I have slowly been able to increase all medication, supplements and herbal antimicrobials without any set backs.
2) I have been able to effectively manage recurring herxheimer reactions, an intensification of symptoms buy soma online us pharmacy caused by an increase in the body’s toxic burden when the Lyme bacteria die, throughout my treatment by implementing a variety of detoxification strategies.
3) I have a slight decrease in the burning sensation I often feel in my brain and spinal cord.
4) I notice an improvement in my mood and my sense of optimism.
5) There is a small reduction in my sensitivity to sound. I can talk on the phone, watch a movie and listen to music with the volume at a reasonable level.
6) I am able to get out once or twice a week for a few hours at a time. This generally involves going to the grocery store, acupuncture or the chiropractor.
7) My vitamin D level has now improved to a healthy level. I am very happy I now have one area in which I can say I am “normal.”
These are the areas I HOPE will continue to improve over the next 4 months:
1) As we increase the killing power for the infections, this phase of treatment is proving to be more difficult to tolerate than the previous 4 months. Over the next 4 months, I would like to be ble to work up to the full doses of the antimicrobials I am taking.
2) A recent blood test indicated hypothyroidism, which may very well be contributing to my fatigue and need to stay wrapped up in my infrared heating pad 24/7. Rather than giving me thyroid medication, my Nurse Practitioner believes I may in fact I have an iodine deficiency and that my thyroid is lacking in the raw materials it needs to make adequate levels of the hormone. I hope to have my thyroid in a normal level in the upcoming months.
3) I hope to be able to increase my b12 levels as they are low as well.
4) I hope to regain more energy and stamina, although this symptoms seems to be among the most stubborn of all of them.
5) I would like to see my ability to sleep improve as well as my ability to nap return.
6) I would like to begin implementing a condition program to try to regain some strength.
My four month consultation ended with Nurse P. saying, “I just want you to know I am so proud of you and all of the hard work that you have been doing. I believe whole-heartedly we are on the right path. You have done all that I have asked of you and more.” I too am proud of the commitment I have made to myself to continue on the path of wellness and hope that my efforts are rewarded with better days ahead.
In an effort to protect the identity of my healthcare practitioner, I have chosen not to use her name. I hope one day, all health practitioners are able to treat Lyme Disease freely and openly without undue scrutiny, but sadly, such is not the case yet 2014.
One of the most heart-wrenching realizations I have ever had to accept was the fact that I was not well. For years, I agonized over this truth. Slowly, I was being swallowed up by a list of unexplainable symptoms that insidiously began stealing life’s joys and highs from me. I thought I was doing everything right. How had my life taken this path? Why was I unable to help myself despite having spent nearly a decade helping others? Would I ever be strong enough to heal from my illness and enjoy life again?
Failure, that overwhelming presence of insufficiency, in my life was never as strong as it was the moment I said my final goodbyes and left work. A large portion of my identity disappeared that day. I believed rest, a few select medications and supplements would help me regain my energy, but one year into treatment, it became apparent that this would not be the case. As relapse after relapse occurred, I became more fearful that exerting any amount of energy would cause me to go further into the depth of my illness. Moving, talking, laughing, listening–nearly everything became my enemy as all forms of stimulation became an energy zapping experience. More and more, I was becomingmy illness. Lyme Disease had brought me to a frightful place and I could no longer imagine what it might be like to live life with it, yet still pursue happiness.
If I close my eyes, I can imagine myself fearfully lying in the bed for months on end. After all, I am not yet far removed soma order tracking from such days. I recall a sad time late last fall at my doctor’s office. While sitting across from my doctor, I tearfully told him that a full recovery was not likely, but at the very least, I hoped for a day where my mind would be filled with thoughts other than Lyme Disease and sickness. Indeed, my expectations had become quite low.
Two weeks ago, I caught myself pondering some new thoughts. As I thumbed through the food in our pantry, I recognized my head was filled with ideas about the future and questions like “where will our first vacation be when I am well enough to travel?” The mental milestone that I had been hoping to one day achieve had, without a doubt, been conquered. What was it that had shifted my thought process so I was able to dream? I realized that somewhere along the Lyme Road I allowed myself to like, even love things again. I gave myself permission to find me once more in spite of the struggles I may be having.
Much to my pleasant surprise, I have not relapsed and continue to slowly grow stronger and braver. I am finding that my sense of humor is returning, that I have an addiction to quirky-patterned button up shirts and my voice as an advocate for this illness is quite loud and clear. I will admit that rediscovering myself through this illness has been scary, but I truly like the person I see emerging. Yes, I have a chronic illness, but this illness no longer has me.
I had been an Occupational Therapist for nearly a decade before I became too ill to work. Prior to the decline in my own health, I had seen patient’s with a wide variety of diagnoses — rare brain tumors, cancers, Multiple Sclerosis, and Scleroderma just to name a few. Although the pathology of these illnesses are all quite different, it did not matter if an illness was acute, chronic, visible or invisible. Illness was still illness and it’s plight was not easy on anyone. I learned this fact early on in my career. I also knew that at no time could I truly relate to the variety of illnesses the 1,000+ patients I had seen, endured on a daily basis. Where I may have fallen short in my personal experiences with my patients’ illnesses, I made up for with sensitivity, imagination, and the genuine desire to help.
Over the past few months, I have observed a trend amongst bloggers, online forums and support groups of chronic buy soma online no prescription illness sufferers feeling increasingly more misunderstood by family, friends and doctors. I often hear phrases such as, “They just don’t get it.” or “If they could walk a day in my shoes, maybe they would understand me better.” Obviously, there is no substitution for the experiential knowledge gained by actually enduring a chronic illness. Unfortunately, it is unreasonable to think that most people in the lives of the chronic illness sufferer will likely ever encounter the same unique set of circumstances. Consequently, patient’s feel lonely and isolated. Families become confused because they don’t know how to help. Friends may disappear because they no longer know the “right” things to say. Doctors are often too busy to really have the time to listen to the needs of their many patients.
So how do we stop the trend of the chronically ill feeling perpetually misunderstood? Can we, as family and friends, actually view our ill loved one with new eyes? I believe the answer is “yes.” I often refer to symptoms associated with a chronic illness as The Revolving Door Theory where symptoms seem to cycle in through the door one minute, and cycle out the door the next. Rather than seeking to solve the persistent list of revolving symptoms or criticizing your loved one for having them, try a new approach. Be willing to help improve their quality of life by displaying empathy, love, kindness and compassion. A few simple actions can help sustain those of us on the lingering and unpredictable path of chronic illness to experience a better quality of life.
On the next blog post, I will list ten ways in which those close to me have demonstrated empathy, love, kindness and compassion during my long battle with Lyme Disease.
