I seriously think I know every inch of my apartment. I have seen paint chips fall and new cracks form in the walls, evidence of the passage of time. I know what floor boards are unusually smooth, so instead of walking forward, I can choose to slide around in my socks.
I know which corner there is likely to be a spider hiding and which windows to look out to see squirrels jumping from the neighbor’s roof onto the treetops. This has been my view for the majority of the last four-and-a-half-years.
It would be false to say that there has been no improvement, but rather the improvements are often slow in coming and akin to the unhurried speed of watching paint dry.
I reflect upon this last year of treatment somewhat heavy-hearted. The ache of isolation is still present. The burden of years of not working and mounting medical expenses weighs heavy upon me. Fatigue-ladened days and almost nightly bouts of insomnia have left me drained. Still determined, I continue on with my treatment. However, no amount of resolve can change the ruthlessness that is Lyme Disease. If it were up to willpower, I would find myself healed by now.
I am glad I finally know I have Lyme Disease. I am grateful I have had the last 12 months to begin treating it, and hopefully, begin beating it. The pain of the difficulty of the last four-and-a-half-years still lingers though. The challenges are still great. The weariness is setting in.
“What changed? I thought you were doing better.” you may be asking.
“Better” is always relative to a bar that has been set quite low.
I began a new treatment protocol three where to buy lady soma products months ago. It is intense and much like a Cancer patient undergoing chemo to attack the cancer cells, a Lyme Disease patient must undergo an aggressive treatment to attack the multitude of infections hiding in the body. At times, the treatment seems severe, even cruel, but the hope of a better quality of life and the desire to live compels me to press onward.
Normally, I write about the areas where I have experienced improvement during my treatment and set goals for the areas in which I would like to see further progress. This time however, I am penning an honest look at the ups and downs of living with a chronic illness. Sometimes, time passes with little to no improvement. Presently, this is where I find myself.
I am reminded of a passage I once read in a book called God Calling.
“In a race it is not the start that hurts, not the even pace of the long stretch. It is when the goal is in sight that heart and nerves and courage and muscles are strained almost beyond human endurance, almost to breaking point.
So with you now the goal is in sight…”
This illness continues to stretch my faith, perseverance, endurance and hope in many unexpected ways. Despite feeling strained, I choose to believe that although I might be bruised, I will not break. I trust that better days are yet to come and I hope to be able to write about some of them in my next treatment update. For now, I am still taking it one day at a time.
I am constantly playing around with different combinations of fruits and vegetables to turn into green smoothie deliciousness. Some are epic failures. Every once in awhile, I do come up with a winning mix. Today was that day! This detox smoothie is my absolute favorite! In fact, it’s the first “recipe” I have ever shared on my blog.
And since I am often too tired to spend a lot of time in the kitchen, it’s actually super easy to make.
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.
It’s been a few weeks since I have written anything new regarding my treatment or my journey to wellness. Often times when a chronically ill blogger is not posting, it’s because he or she is not feeling well. Although I have had many ups and downs over the last few weeks, in this case, my reason for not blogging is a good one. In fact, I have been busy.
Yep. That’s right. Me, the person who is still homebound most of the time, can’t socialize often or am too fatigued to clean my house for that matter, has been busy!
“Busy doing what?” you may ask.
I, along with two, wonderful fellow Lyme fighters, have been busy starting the very first Lyme Disease Support Group in the city of Chicago. We have been hunting, searching and calling around for a space for nearly two months. Our initial location fell through when it was determined that the space had way too high of a mold count. No HERMI test required. My co-leader’s watery eyes and loss of voice, along with the choking feeling in my chest coupled with continuous coughing was all that we needed to confirm that the cute, little church on the corner was definitely not going to work for our needs. The search continued.
Call after call finally landed us a nice conference room in a new building affiliated with a neighborhood hospital. We had found our venue.
Check.
We created our online buy soma online in usa Facebook forum, set up our google+ account and email address. We have also been working on coordinating community resources for our members and creating an agenda for our first meeting in August. I am so excited to finally have a meeting place to gather with my fellow Lymies, many of whom I have only talked with online and have not yet had an opportunity to meet them person.
This is a big step for me, and the other two leaders, to move into the role of a support group leader. I still have a lot of healing to do before I feel well, but meeting in a supportive environment with like-minded individuals will certainly contribute positively to the healing process.
A year ago, I was still bedridden. Now, I am taking a giant leap forward believing that it will not cause me to go backwards, but bring me out of what has been a very isolating season in my life. Cheers to moving forward, taking risks and starting a support group with friends!
If you are a support group leader or are thinking about starting one, I would love to hear about some of your experiences. Please feel free to post a comment!
In the next few weeks, I will be writing my 8 month update and my experience with the Zyto Scan (still on the fence about that one).
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.
To give you an idea, I have paid out-of-pocket for every single doctor’s visit, lab test, medication, supplement, herb and Lyme treatment for the past 4 years, amounting to tens of thousands of dollars.
All illnesses have their difficulties. What makes chronic Lyme unique from other diseases though is that expenses are almost always out-of-pocket. Most insurance companies do not cover the cost of treatment for chronic Lyme cases. This places an unimaginable amount of financial buy cheap generic soma burden and strain on a patient and their family year after year. A recent study revealed that over 40% of Lyme Disease patient’s are unable to work. This same study demonstrated that chronic Lyme sufferers have a quality of life that is worse than many other illnesses like congestive heart failure, diabetes, multiple sclerosis and arthritis.
One week ago, May 22nd and 23rd, several Lyme fighters and Lyme Disease supporters gathered at the headquarters of the IDSA in Arlington, VA for the fourth annual Mayday Project protest. Those of us not able to attend the protest in-person were able to participate by faxing, emailing and using social media to deliver a 24 page document to the IDSA suggesting that they redefine the guidelines for the diagnosis and treatment of Lyme Disease. To see the document in it’s entirety, click here.
Our mission was to persuade the IDSA to “accept persistent Lyme disease as a diagnosis” (The Mayday Project, facebook.com, 23 May 2014. Web. 23 May 2014).
The Mayday Project further states “This will open the door for people to do research into the chronic form of the disease and hopefully produce a cure. This is what we ultimately want” (facebook.com, 23 May 2014. Web. 23 May 2014).
Fox 5 DC came to cover the event and has since buy soma overnight fedex produced two great segments on the devastating effects of chronic Lyme Disease and the controversial methods of transmission for this illness. Please click on the following links below to watch the videos.
I am so grateful to The Mayday Project, the people who attended this year’s protest and to those who helped to advance the cause of Lyme Disease (many while seriously ill) by contacting the IDSA through various forms of communication. It’s seems our voices are beginning to be heard and I hope and pray that our illness will finally be recognized and patient’s will have faster, better access to appropriate medical care. Perhaps next year I will be in better health and able to participate in the protests in-person. Between the local and national protests, this year’s Lyme Disease Awareness Month was a great success.