Full Disclosure: The kind, generous folks at Mitosynergy gave me samples of their products to review, provide feedback, and see if the products improve my energy levels (I already use their MitoLipo product).
Fatigue–like it’s a miracle I can lift my head off the pillow most days kind of fatigue–is my worst symptom. Even with more than two years of treatment under my belt, this symptom has barely budged. I have already tried dozens of things to try to combat this type of “sick” fatigue. Over the next month, I will document my progress to see if there is any improvement using the Mitosynergy products in my situation.
To begin, I filled out a Brief Fatigue Inventory to better track my progress and note any measurable changes.
Brief Fatigue Inventory:
0 is no fatigue, 10 is as bad as you can get.
1) Rate your fatigue level now.
Rating: 8
2) Rate your usual level of fatigue during the past 24 hours.
Rating: 8
3) Rate your worst level of fatigue during the past 24 hours.
Rating:9
Note: I had horrible insomnia last night, and I was exhausted to the point where I did not know if I could walk to the bathroom.
D. Normal work (including work outside the home and daily chores)
Rating: 7
E. Relations with other people
Rating: 7
F: Enjoyment of life
Rating 6
Note: Even in the moments of craziness and uncertainty, I still find moments of joy.
I will incorporate the following products into my current treatment and detox protocols:
1) MitoMelts– a powder that you take under your tongue with mitochondrial-specific nutrients to optimize neuromuscular health. The product tastes pretty good–like a SweetTarts candy.
2)GreenTeaSynergy Plus– a room temperature tea you sip throughout the day. It has a blend of green tea, noni, and Humic Acid; with Humic Acid shown to have viral inhibitor properties.
3)MitoMudBath Extreme Cleanse– a detoxifying mud bath with a blend of peat, pine essential oil, wintergreen essential oil, sulfur, and glycerine. This product drains easily, even in an Old, Chicago tub like mine.
Getting ready for my first mud bath.
I will write an update on this new addition to my treatment in the next few weeks. I hope and pray I can make a significant dent in this fatigue once and for all!
It’s difficult for our loved ones to fully comprehend the suffering we endure with a chronic illness. Our lives often change drastically– confusing the important people around us because we don’t always look sick. My hope for this article is that you, our loved ones, would gain some insights into what it’s like living with a chronic illness, and find ways you can support us as we navigate this often scary situation.
Here are 5 things we wished our loved ones knew about our chronic illness:
1. The illness is here to stay.
A chronic illness is constantly recurring. There are ups and downs, periods of improvement and decline. For those of us living with any chronic disease, we are never truly free from it. We usually don’t discuss the day-to-day fluctuations in our symptoms because we don’t want to alarm you. You may not be aware we battle a set of invisible symptoms the world never sees.
Recovery from any illness is tricky. It’s important to remember this process takes an immense amount of time, effort and has no official timeline. Through trial and error, most of us eventually find a treatment strategy that yields some improvement.
2. There is no quick fix or magic pill.
We know it pains you to see us suffer. We know you would do anything to help us get well. With that being said, your suggestions to try more vitamin D, get more exercise, try new cleaning products, volunteer, see this brilliant chiropractor/doctor who cured one person of said illness is rarely ever helpful.
While we appreciate the time and effort you took to research our illnesses, the suggestions you offer (and I say this with love) are almost always too basic for where we are in our journey with a long-term health condition.
Let me explain.
We will see more doctors for our chronic illness than most people will see in a lifetime. We spend exorbitant amounts of money trying to get well. We investigate countless treatment options– even treatments that may seem too alternative or like medical quackery to people. We are willing to try almost anything to get better and we follow every feasible (and sometimes unconventional) lead.
We immerse ourselves in Facebook groups, Instagram, Twitter and blogs. We communicate with people who have our same illness from around the globe. We ask a lot of questions to our fellow chronic illness pals. We compare treatments. We watch as some of us get better. We take notes on what seems to help and what doesn’t. We are sponges soaking up every piece of information we can get our hands on. We live and breathe the hope of getting well 24/7– we learn there is no quick fix to getting better. Realistically, progress is a slow process.
3. Expect our lifestyle to change.
As time goes on, a few symptoms improve, some can i buy soma online become our new “normal” and others we get better at hiding. Our stamina, strength and ability to tolerate pain have limits. We adapt our lives, pace ourselves and cautiously allocate our energy to finish our daily activities. Sometimes, we overdo it on one day and leave nothing to spare for the next. If we are saying “no” to your invitations for family events or social outings, don’t take it personally. We want to be there, but we have already used up our energy reserves or have reached our pain threshold for that day.
4. Asking for help is a necessary life skill for us and not a weakness.
A few weeks ago, I encountered a tiny, but still terrifying, mouse in my kitchen while home alone. After a three-hour standoff with my landlord and a runaway mouse, my house was in shambles. My physical and emotional energies were quickly draining. Fighting back tears, I collapsed in an exhausted heap on my chair. The ability to finish the cleanup by myself was gone.
So, I did something I had never done before. I posted a message on Facebook asking if anyone had a couple of hours to spare on a Sunday afternoon because I needed some help. Eventually, help came in the form of three friends and a little dog. My dogs were kept occupied by a new playmate, friends mopped my floors and the night ended with a Chipotle dinner party. Simply asking for help made a tiresome day better.
Some of us have learned that asking for help is a sign of weakness. It’s ingrained in us that we must always manage on our own. Many of us wrestle with the reality that we have lost some of our independence. The truth is that asking for help is a life-skill necessary for us to effectively manage our condition. We will probably ask for assistance from you throughout our continued health challenges.
5. We value our relationships and losing them when we get sick really hurts.
Having a chronic illness is very isolating. We spend less time out and about and more time at home conserving our energy. With a spirit of creativity and persistence, our friendships and family connections need not completely slip away. We may have an illness that requires care and attention, but we find new ways to enjoy our lives.
Our relationships don’t need to be one-sided either. Please share your lives with us! We can laugh with you, cry with you, celebrate and support you. We make great friends and companions even if our activities shift from wine, parties and fancy restaurants to a cup of tea on our couch, while binge-watching Netflix.
I hope this list gives you a better understanding of what we need as we continue the fight for a better quality of life. We don’t say this enough, but we value your presence in our lives. Your support makes us stronger.
Today is my second anniversary since beginning treatment for Lyme Disease and multiple other systemic infections. I dreamed of this day. In my mind, I expected some fanfare, a sign to mark this milestone in a very long fight. In two years, I have swallowed upwards of 43,800 pills, supplements, and herbal tinctures. I make no exaggeration. I expected to be in a different place– to be well by now, back to work, and maybe even thinking about starting a family. However, today is a decidedly ordinary day in my life with Lyme.
In two years, I have spent nearly $40,000 in out-of-pocket medical expenses. I wonder how many other illnesses drain a person of their life savings and leave very little to show for it. I don’t know the answer to this. Maybe there are more, but I can only tell my story– the story of someone trying to crawl her way to the top of the highest mountain. If I close my eyes, I imagine myself reaching the long-awaited summit. I hold out hope that I will finish this climb. I am steadfast in my determination.
In two years, my cell phone alarm has rung approximately 5,840 times alerting me to take my medications. I don’t think I have ever missed a pill. It’s habitual now. Can you be a professional pill-taker? If so, I am one. It’s absolutely second nature. I eat, sleep ( as able) and take my pills– 730 days in a row and counting.
In two years, I have taken around 1,095 detox baths, 1,095 sauna sessions, and 730 coffee enemas. No, you’re eyes aren’t blurry. You read that correctly. Coffee enemas. The funny thing is that I only drank one cup of coffee in my entire life. I really hate the taste.
But, I am willing to try almost anything if it will help. The baths, sauna sessions, and enemas give my body’s natural detoxification processes a boost at removing the toxins accumulated from killing multiple infections and ingesting several medications. It’s a necessary, but inelegant part of recovery.
Some of my medications are harsh on the gut, liver, kidneys and other organs. Blood draws are a regular part of my life to make sure we are not causing more harm than good. As patients, we joke that getting well and managing our symptoms equals a full-time job. I guess it’s not really a joke since it’s actually true. Restoring my health is the most effortful task I have ever faced.
I hear rumors that I am well. Someone order carisoprodol online mentioned it to “this” person, “this” person then told ”that” person, and finally, “that” person told me that I am doing great. I am flattered people think I am doing so well, but the reality is much less glamorous.
More Than 43,000 Pills Later…
I am not cured, healed or even “well” yet. Despite two years of aggressive treatment, I still struggle every day. To quantify a good day, I function at around 40% of my normal. That means roughly 60% of my day requires me to rest. However, most days are not 40% kind of days yet. This is still better than where I was a year ago. For that, I am happy.
While my pain has decreased, my memory is better and my sleep has improved, crippling exhaustion is the invisible symptom that troubles me the most. This is not the type of exhaustion that comes after working a long day. No, “sick exhaustion” is in a category all to its own. My energy drains and my body becomes too depleted to get out of bed some days. It’s tired from this relentless, intrusive fight. Infections still run amok underneath the surface. Maybe it’s due to the facial yoga exercises I’ve been doing, my new silk, exfoliating mitten or a super healthy diet, but my illness rarely shows on my face. I continue to have ups and downs, moments where it seems like remission is in reach, and periods of going backwards. This cyclical symptomatology is the very real nature of living life with a chronic illness. Thankfully, the setbacks are less severe than they used to be.
Treatment will continue to be aggressive for an undetermined amount of time. I sometimes get asked if I am angry about having to go through this. Most of the time, I am not. I passed the point of feeling like my body betrayed me and grateful that I have a body that refuses to give up. Another person– a different body– may have quit a long time ago. There have been moments of immense joy and self-discovery in the last two years. I live for those moments.
Here’s to another 43,800 pills, unexpected moments of joy and healing milestones. Although this journey is sometimes overwhelming, I will continue to pursue my healing with faith and persistence.
Thank you all so much for allowing me to share my story with you these past two years. To my husband, family, friends, and even strangers, your encouragement sustains me along this weary road.
Looking back at this pic from three years ago, I choked up a bit. I may “appear” okay, but inside my body, a serious war waged on that had me fighting for my life. What many never knew is that I am leaning on Tom because I was too weak to stand on my own. My hair is long and uncut because I was too sick to endure a trip to the hair salon. My glasses were broken because I stepped on them 4 months buy soma 350 mg online prior and was not strong enough to go to an eye doctor. I was bedridden 90% of the time and remained that way for 18 agonizing months. After this picture was taken, I immediately had to lie down. The girl in this picture knew she would fight an invisible battle for the rest of her life– a battle that would rarely ever show on her face. I am so glad this girl was brave, had perseverance and most importantly, never gave up. ?
As you might have realized from my blog, I love Pilates! “Draw your abdominals toward your spine.” “Wrap your shoulder blades down your back.” I hear those cues in my head when I am practicing.
I like the way Pilates makes me feel. I feel energized instead of worn out. I feel lengthened instead of compressed. It boosts my mood and helps me feel like I am getting buy carisoprodol stronger throughout my lengthy, no-end-in-sight-any-time-soon, Lyme treatment.
I recently shared my experiences with Mackay Rippey from Lyme Ninja Radio during a podcast. We covered a lot of subjects, from treatment to herxing, acupuncture to Pilates and pretty much everything in between (even coffee enemas— oh my). Below is the link to our interview. Please take a listen and as always, feel free to leave me a comment.
First, thank you so much for your nice words and comments the past few months regarding my post, A Life On Pause, through Facebook, emails, my blog and elsewhere. Tens-of-thousands of people around the world read it! I am speechless. That is the greatest compliment I have ever received. The article is even scheduled to be printed in the upcoming issue of The Lyme Times, a quarterly journal through LymeDisease.org.
I have been hesitant and excited to write this update. Hesitant because, well, there’s the fear of relapse in the back of my mind, and excited because I finally made a dent in this disease. Lyme is a sucker punch of an illness and has delivered enough low, unexpected blows to me to last a lifetime.
I’ve been treating Lyme Disease and a host of overlapping conditions for nearly two years now. My condition fluctuates between bad and worse days. This pattern has been consistent. My treatment has been intense, occasionally hurling me backward before I can move forward again. Quitting is not an option, though I sometimes fantasize about throwing all my pills in the trash. It’s not easy to take upwards of 60 pills, herbs, tinctures and supplements each day.
This is my life. When the alarm sounds, it’s time to take my medications. I have taken medications in a Chipotle bathroom, the back of a taxi, dressing rooms, the hair salon, the grocery aisle at Target, in the middle of a church worship service, even, on a Ferris Wheel (once).
This is my present, strange reality. And there are still years of treatment ahead.
However, I made a promise to myself early on in my treatment that I would never measure my progress by how anyone buy soma drugs online else was doing. I would choose the treatments that felt right for me. I do not chase after treatments in the hopes of finding a faster fix to my circumstance. I don’t have the financial means nor the energy to do so. I accept that recovery, remission and a better quality of life take time and effort. It’s more work than I could ever have imagined.
But my story begins to take a favorable twist. Those who see me, talk with me or follow me on social media know there has been a subtle shift occurring in my symptoms. I have better days. At times, even a good day:
I felt the wind whip through my hair and the sunshine on my face as I sat by the lake. I shared delicious dinners with long-time friends. I tasted my first Stanley’s donut. I walked through my neighborhood park and breathed in the fresh air. I had a wonderful 4th of July with my mother and Tom and only required a few days to recover. I took the dogs to the park. I danced to an old workout video. I hung upside down from some monkey bars. I even napped! Yes, insomnia that tortured me for years is truly improving. There is such happiness in these small victories for me.
When I look back on the last year and ten months, I feel proud. I am proud of my attitude through this journey, proud I persevere along the path of recovery and proud of the life I am rebuilding bit by bit. This has been my greatest challenge, but I now know things do get better.
It’s nighttime. Lying in bed wide-eyed and frustrated as the clock ticks, you pray for just a few hours of precious sleep. Insomnia plagues you. Your usual sleep medications have no effect on you tonight. It’s as if you just swallowed some candy instead of a sleeping pill. Tears stream down your cheeks. You bury your face into your pillow and weep softly so as not to wake anyone else. Is this really happening again? As the night bleeds into yet another day, time becomes irrelevant as there is never any period of rest. The sleep deprivation is a cruel form of torture for you with no end in sight anytime soon.
If you could nap during the day, the constant sleeplessness might be easier to tolerate. Lyme Disease wiped out your ability to nap years ago and no one has any solutions for you. Some people want riches or fame, but you, you just want a brain that functions normally. To have a brain that sleeps, isn’t foggy, jumbled or forgetful, is your greatest wish.
A streak of bright, orange light bursts through the curtains. Damn it! It’s morning now. Utterly depleted, you continue with your idle rest in bed as you wait for the alarm to go off alerting you to take your medications.
Almost every medication prescribed to you requires you to take it on an empty stomach. These are instructions you find particularly challenging to follow. Sometimes, you wait more than two hours before eating breakfast just to squeeze in your morning handful of pills.
Invariably, some medication or supplement gets missed. You panic as you rework your entire medication schedule for the day. There is no room for error anywhere. Hopefully, tomorrow you will get back on track. Treatment for Chronic or Late Stage Lyme Disease is regimented and intense. You persist through these demanding protocols in the hopes of having a normal life again.
With the multitude of symptoms you experience daily, you’ve become too ill to work. Career advancement is not a realistic option for you anymore. No landing your dream job. No starting your own business. The longer you struggle with Lyme Disease, the further away the reality seems that you will ever go back to what you once were.
Lyme Disease can be disabling although some medical and political establishments will tell you it’s not even a real disease. Oh, how you would love if this disease were fake, a figment conjured up by your wild imagination. That somehow seems treatable and much less expensive.
But it’s not an elaborate fabrication or something you’ve concocted for attention. You’re not lazy, unmotivated or a head case. You are not choosing sickness so you can lay in bed all day. This illness is real and it comes with a hefty price tag.
If you have Lyme Disease, you will buy soma us pharmacy spend all of your money – every last cent – trying to get well. You will invest tens-of-thousands, if not, hundreds-of-thousands, of dollars on trying to save your life. If you’ve had this illness long enough, you’ve maxed out your credit cards, probably drained your savings, pensions, IRAs or 401k’s. Evidence of a life before Lyme quickly vanishes.
Physicians most literate in treating Lyme Disease are not covered by your insurance. To get well, you will likely need a multifaceted approach to treatment, including regular testing, prescription medications, supplements, and herbal medications. The effort to repair the damage that chronic Lyme Disease has caused is costly, burdensome and at an enormous out-of-pocket expense to you and your family.
Yet, you continually find the strength to persevere. You hold on to hope with fists clenched so tight your knuckles change color. Your hope is in a better quality of life. Your hope is in a future filled with joy and less suffering.
During your battle with Lyme Disease, you have not been able to attend weddings, baby showers, family holidays, or outings with friends. You have had to say, “no,” more than you say, “yes.” By now, you feel the pain of isolation. You wish people understood your illness better or, at the very least, that you had some special superpower that allowed you to articulate the torment raging on inside your body.
You will continue to battle this illness with everything you’ve got, but there’s very little energy left (if any) beyond dragging yourself through each day. You need continued help and support no matter how long this journey takes, but you find most relationships cannot endure this level of hardship over the long haul. Your heart badly hurts as you sense relationships beginning to slip away.
Sadly, most aspects of your life are on hold indefinitely due to this illness. Recovery is long. Thoughts about dating, getting married or planning for a family fall to the wayside. You feel this illness stealing some of life’s most precious opportunities from you as you wait for the moment when you might one day be well again. The future seems so uncertain.
Like so many other chronic Lyme patients, you constantly feel the slow, suffocating effects of a life on pause.
Note: May is Lyme Disease Awareness month. I see so many friends struggling right now that I wrote this piece in an effort to release some feelings I’ve had buried inside of me for a long time. This is my story, but it also includes the experiences of so many others I have talked with in the past few years. Many have not yet found a way to communicate the pain and heartache that comes from having this illness. I hope you will take a moment to read A Life On Pause.
I have had a rough last several months. TODAY, there was a silver lining as I got my second article published on Mind Body Green this morning! I wrote most of this article from my bed, in small increments over many weeks as I suffered immense fatigue. I feel the most proud of this order soma online accomplishment as I know what a struggle it was to actually get it written.
BUT I DID IT!!
And, it’s no secret I love Pilates!
Please take a moment to read my latest article and leave a comment.
With some light-heartedness and a twist a of humor, we created two films. First, I “take a bite out of Lyme” in my film by showing my daily regimen of supplements and medications I ingest to help me get out of bed each day (well, some days at least). I have hope that I will one day be in remission from this terrible illness and I strive to keep laughing and smiling through it all.
As my husband, Tom has also been impacted by my battle with Lyme Disease. Ever the comedian, his film demonstrates that sometimes Lyme just ruins things-your day, your month, an outing with a friend or even just a simple cup of coffee.
For me, the highlight of this campaign came when the Real Housewives of Beverly Hills star and Lyme Fighter, Yolanda Foster, commented “Amazing” on my film and retweeted it. Luckily, I was already laying down when I saw the tweet or I might have fainted.
What began as a grassroots campaign started by 5 amazing woman (Julie, Melissa, Özlem, Kim and Lisa), has gained order soma overnight cod some serious traction using social media. Celebrities that have already taken the challenge and showed us their best sour faces include:
Angeli Vanlaanen, Olympic freestyle skier
Ronde Barber, retired football cornerback for the Tampa Bay Buccaneers
Yolanda Foster, Lyme Fighter and Reality star from the Real Housewives of Beverly Hills
Elena Delle Donne, WNBA basketball star
Erin Andrews, journalist and host of Dancing With the Stars
Tom Bergeron, host of Dancing With the Stars
Tiki Barber, retired football running back for the New York Giants
Debbie Gibson, singer-songwriter, record producer and reality TV star
William Shatner, actor
Dr. Oz, health expert and talk show host
When the Challenge aired on Dr. Oz last Thursday, we knew we were making some serious progress with this campaign!
I applaud the efforts of the LDC team and am so proud of the hard work by the entire ?Lyme community. It’s just mind-blowing what a group of people can accomplish. Although it may not always seem like it, PEOPLE ARE LISTENING and PEOPLE DO CARE.
With May being Lyme Disease Awareness month, be encouraged to keep sharing your stories, posting your videos and pics of you taking the Lyme Disease Challenge and challenging others to take it too. Let’s keep this momentum going!
I encountered a discouraging bump in the road last week. In addition to Lyme Disease, I have an inflammatory bladder condition called Interstitial Cystitis (IC).
Marked with bladder pain, urinary frequency and urgency, I have had this condition since 2005. It was fairly well-controlled for about 4 years. I even thought the most difficult days of dealing with IC were behind me. Unfortunately, this flare-up shows my bladder has more healing to do.
As I struggle to understand why I am once again experiencing such severe bladder symptoms, I decided to take a specialized urine test from a lab called Pathogenius. The lab performs testing at two different levels using a culture and DNA detection. My nurse practitioner only recently began working with this lab. Whether or not a patient improves using treatments designed around this testing method, remains to be seen.
My level one culture came back negative. However, the DNA portion of the test detected abnormally high levels of a bacteria I was unfamiliar with called Prevotella Bivia. This bacteria is not a tick-borne infection like the others I am battling. In fact, some amount of this bacteria appears to be present in healthy individuals and poses no trouble to them.
Perhaps my immune system, already suppressed by multiply systemic infections, could not keep this bacteria in check and my bladder became symptomatic again.
That’s my best guess.
After reviewing the results, my nurse practitioner presented me with two treatment options:
Option A is to instill medication directly into my bladder via self-catheterization. A two-week course of medication and supplies arrives at my house from a compounding pharmacy. It’s not covered by insurance, so my out-of-pocket cost would be somewhere between $200-$500. A second, two-week round of the instillations is usually required. For a one months supply, the total cost is between $400-$1,000. This is in addition to the $1,000+ per month my husband and I currently pay out-of-pocket for my treatment.
The pros of this treatment are:
1) It delivers medication directly into the bladder so the antibiotics do not have to bypass the GI tract where it can disrupt normal gut flora or interact with the other medications I am taking.
2) It’s an innovative new approach to treating interstitial cystitis.
The cons are:
1) It’s expensive to do and I question whether it’s sustainable for the average person over a long period of time. Several courses of treatment could be required to achieve maximum benefit.
2) Repeatedly doing bladder instillations carries the risk of contracting a urinary order soma online from canada tract infection, which is then treated with another oral antibiotic.
3) This treatment is so new that it is not yet known what the rate of success is.
A pit in my stomach formed as I did the math. With our current situation, I felt Option A would not be feasible for me. It’s just too costly.
As FOMO set in (Fear Of Missing Out on a treatment that might be THE treatment to finally cure me), I reluctantly asked for an option B.
This option is to add yet another antibiotic to my already rigorous treatment. In this case, it would be the broad spectrum antibiotic, Clindamycin.
The pros of this treatment are:
1) It’s cheap. In fact, I would pay nothing with my insurance.
2) In addition to treating the Prevotella Bivia in the bladder, it also targets the Lyme bacteria in the nervous system.
The cons are:
1) Since this antibiotic kills bacteria from such a broad spectrum and I am already on an aggressive antibiotic protocol, it could increase my risk of developing candida overgrowth or worse, a potentially life threatening GI infection called C-Diff.
2) I need to take this antibiotic three times per day, making it difficult to schedule it around all my other medications.
3) It’s also hard on the digestive tract.
4) Because this antibiotic has penetration into the nervous system for the Lyme bacteria, there is a high likelihood of experiencing an increase in my neurological symptoms as the new antibiotic kills those bacteria.
Truthfully, I really didn’t like either of the options. Neither annihilating my gut nor going in debt seem like great solutions. In the end, I chose the only affordable route for me. I added the fourth oral antibiotic to my treatment for the next 10 days. Following completion of this antibiotic, I will re-test with Pathogenius to see if there are additional infections.
During this course of treatment, I have significantly upped my intake of probiotics and digestive enzymes to help protect my gut and decrease the risk of C-Diff and Candida overgrowth. As predicted, I am noticing an increase in my neurological symptoms and worsening insomnia has been the most difficult symptom to endure. Luckily, I am already on day 6 of my 10 day plan.
I am hoping this new treatment will shed light on potential causes of Interstitial Cystitis in some people and yield improvements in my symptoms.
I will post an update after I have completed this course of treatment.
