Tag Archives: Recovery

Treatment Update: This Is My Present, Strange Reality

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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.

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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.

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A Bump In The Road: Dealing With An Interstitial Cystitis Flare

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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.

Bump in the Road

The Absent-Minded Patient And A Treatment Update

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The other day, I couldn’t find my cell phone. I looked under the bed, on top of tables and shelves and literally under every scrap of paper in the house. It had vanished.

Where could it be? I hadn’t even left the house in a week due to a blizzard and not feeling well from changing up my treatment plan.

Suddenly, I had an inkling, a vague recollection of what I was doing when I last had my phone in my hand.

I ran to the kitchen and threw open the refrigerator door. There, on the top shelf next to a loaf of Udi’s Gluten Free bread, was my cell phone! (This would be the appropriate place to insert an emoticon- the one with the wide-open eyes and a line for a mouth that basically says, “Oops. I did something stupid.”)

As I reached in to grab my already chilled phone (I estimate it had been in there for about an hour) I said out loud to absolutely no one, “And this folks…This is a perfect example of why you too should have the Life Proof cell phone case!”

I’m sure everyone has left their phone in the refrigerator at least once, right?

cell phone photo

I have a legit excuse for my absent-mindedness. I promise.

About two weeks ago, my nurse practitioner decided it was time to intensify my treatment. This buy soma online fast generally leads to a few steps backwards as my body adapts to the changes. This time around however, the changes seemed to have stirred up some old symptoms with a vengeance.

We included the antibiotic, Flagyl, into my protocol to target bacteria that are in a specific form called, “cyst form.” This antibiotic packs a powerful punch and has left me feeling more fatigued than usual and foggy-headed (obviously).

I also said goodbye to my trusty companions of 16 months, Banderol and Samento, and added a more potent herbal formula, called A-L Complex, by Byron White. With an increase in joint pain, muscle spasms and a flare up of Interstitial Cystitis (an inflammatory bladder condition that I have had for 10 years), just one drop of this formula makes me feel like a car ran over me!

One measly drop!

I always say, “If I must go through this, at least it’s winter so I know I am not missing much.”

With today’s temp at a frigid 12 degrees, I feel sorry for anyone who has to leave the house!

Next week, I am meeting with my local Lyme doctor to discuss some strategies to deal with the increase in pain and fatigue I am experiencing. I hope he has some brilliant ideas for me.

To see my full, updated treatment plan, click here.

 

Pilates And Lyme Disease: My First Post On Mind Body Green

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Yay!

I awoke this morning to some wonderful news. An article I had submitted to Mind Body Green a few weeks ago has gone live!

After being bedridden and housebound for such a prolonged period of time, people often ask me, “What are you doing to regain your http://nygoodhealth.com strength?”  Please click on the link, How Pilates is Helping Me Heal From Lyme Disease, to learn how The Pilates Method of exercise is an important tool in my recovery.

What are you doing to improve your strength? Please feel free to leave a comment below.

Paleo Pumpkin Walnut Pancakes

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It has literally been years, decades maybe, since I have eaten anything that even remotely resembled a pancake. Maybe it’s the sudden and drastic change in temperature that I now find myself craving some sort of comfort food. Below is the recipe I adapted from Wellness Mama to help satisfy my hankering for pancakes.

pancake 1

Ingredients: 

2 eggs

1/4 cup of pumpkin purée ( I used Farmer’s Market brand from Whole Foods)

1 Tbs of walnuts

1/8-1/4 tsp of cinnamon (I love cinnamon so I used 1/4th tsp)

Small pinch of sea salt

1/2 cup of your favorite berries (I used blackberries)

Coconut oil

Grass-fed butter if tolerated

Directions:

1. Whisk together the eggs, pumpkin, cinnamon and small pinch of sea salt

2. Add in walnuts and whisk a few more times

3. Warm pan over medium high heat (I used a cast iron skillet).

4. Place a Tbs of coconut oil in the pan making buy soma canadian pharmacy sure to cover the bottom.

5. Place 2 Tbs of batter in the pan and cook until golden brown.

6. Flip the pancake over and brown the other side.

7. Place pancake on a plate. If you can tolerate butter, I placed a small pat of butter on each pancake to melt while I made the next one.

8. Makes about 5 small pancakes.

9. Top with your favorite berries.

Prep time: 5-7 minutes, Cook time: 10 minutes, Total time: 15-17 minutes

pancake 2

Verdict: 

It was pretty good and I ate the whole stack! I did miss a bit of the sweetness of a traditional pancake so I think the next time I make this recipe, I will blend in a 1/3rd of a banana or so.

Enjoy!

Do you have a favorite paleo pancake recipe? Please share!

MY ONE YEAR TREATMENT UPDATE

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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.

This is my one-year treatment update.

© Leonardo Aguiar

© Leonardo Aguiar

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.

“Have courage.” I hear. “until those days come.”

© Maja

© Maja

I would love to hear from you! Please feel free to leave a comment.

THE DEEP END. POST ON SUFFERING THE SILENCE

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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 End and 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.

MY EIGHT MONTH TREATMENT UPDATE: THE LIGHT IS BEGINNING TO SHINE

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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.

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MY FOUR MONTH TREATMENT UPDATE

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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.

MY 2014 NEW YEAR’S RESOLUTION

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My dogs have sniffed every area of my house thousands of times over, maybe more. No matter how many times they revisit the same corner or the same front yard, they do so with such a sense of excitement and optimism. Each new day brings buy soma medication online about the potential to discover something amazing. My New Years resolution is to be more like my dogs.

Seven and Caylie at the Beach

Seven and Caylie at the Beach

 

Caylie and I at the Beach

Caylie and I at the Beach