I have hesitated to write since being home. I have been on such an emotional roller coaster over the last 6 months, I wanted my words to be wise and felt like I was struggling with so much grief it was hard to analyze my words. However, during this short journey I have been contacted by so many families who are going through similar situations, that I have decided to go back and post my already previously un-posted updates.

I feel more and more like myself, or my old-self every week that passes. I have weeks where I feel the need to be very still, like my body wants to conserve every ounce of energy. Followed by weeks where I’m just thrilled to be functioning, that I greatly appreciate being able to put away laundry without being winded.

I have been driving and able to do multiple stops (picking kids up, or attending an appointment) without my arms getting tired, it is awesome. When I left for treatment, Shea Medical stated that they anticipate an 80% improvement for Lyme’s patients after two years. Here is how I measure my quality of life improvements. At that point I was having convulsions, bouts of unconsciousness, my muscle were clenched constantly, my pain was so intense I threw up on a regular basis.

I could not walk more than a few steps a day, my Mom was taking care of me because I couldn’t be left unattended. Aaron was trying to work and care for the kids. I couldn’t read my own writing on a bad day, I couldn’t drive because I was twitching and convulsing-but more of an issue was being lost in familiar places. And I was swerving like a drunk driver, unable to attend diners, and  overwhelmed by the reality that my life was slipping away from me.

I had become a weary spectator, in the game of life. I had played all the positions, I started as a participant. As my health declined I had to embrace more of a coaching position, especially with my kids, I did most of life sitting down. Last fall I got demoted to “score keeper.” Benched from so much of life, I struggled to sit up and laid in bed more and more. As I began to loose consciousness more and more, and required more help to function. I knew that the love for my husband and the desire to raise my kids was not going to be enough to propel me to fight for much longer.

It was actually better for my kids to be with someone else, someone who could meet their needs. Unbeknown, my sisters had already formulated a plan to move back to NM to help care for my kids. A scenario I could have never imagined, it was no longer a lingering thought, it was now at the forefront of my mind daily. I had thought this through almost daily as we went through our two year waiting period in anticipation of Lincoln and Anaideia’s international adoption. How desperate a parent must be, or selfless in order to place their beloved child in the care of another.

I had prayed for those parents knowing their grief was what laid the foundation for our joy. And now, here I was myself. One night (which wasn’t uncommon) I stood in the doorway peering in on the twins. They needed to be put to bed, loved on, read to, room picked up, water refilled, and all I could do was stand at the door for a moment, “good night, go to bed, Mommy has to go to bed” were my words, but my thoughts were crying out to God, how could these fragile kids endure the loss of another parent. How would my biological kids be wounded as they watched their Mom decline.

What scared me about this 2 month period was that I could no longer will myself into anything. I was being tossed about by the waves of illness; and I was no longer in control of anything. If I was not a Mom to 5 young kids, I would have been relieved to leave this life behind, I felt so empty, there was nothing left of me. I knew they would suffer greatly if I wasn’t around, but I felt like the outcome of my quest for wellness was beyond my control, and I was okay with that. Even weeks into treatment I was continually talking myself into fully participating in the protocol. I would never squander the opportunity to heal, but I wasn’t sure the cost would pay off.

I didn’t want to endure treatment, in order to go back to a life filled with pain and merely existing. People suffering from this illness and many other chronic conditions, live in a separate world from healthy, able bodied people. I had stated it before, but there is a difference between existing and living. Being one of the walking dead vs. the living. Those whose suffering is so intense that they don’t plan vacations, they organize their lives around Doctor appointments and blood draws, there are of course moments of participation in normal activities, but you have to muster strength that feels like it is getting sucked out of your bones, and it leaves you depleted.

Currently I would say that I’m at least 70% better. I can walk and breathe, I occasionally need my walker. No more twitching, my pain is almost non existent. I have the strength to make my own juices (daily). I can play games with the kids, take them to a park while I read on a bench. I can cook a couple of meals a week. I totally dig being able to drive, go on short grocery trips, and I’m starting to look forward to events again. I love things like movie night, playing with the kids, having people over, these things had become a mix of guilt and pained expectations that I couldn’t meet.

However, I find myself looking to the future with optimism instead of grief. My Mom still comes over every school morning, enabling me to sleep in, which helps me to heal and means that I still have some life in me during dinner and the evening. My days feel slow, and I still wear down quickly. But the reality is, is that I’m doing more now than I have in about 15 months. Our lives will never be the same, sometimes the losses are grievous, and can be overwhelming to think about.

We held two kids back in school as a result of me not being able to help the needier kids with academics. We have desperately missed the many invites we were unable to attend, and missed the fun of casual dinners and outings. I’m tempted to make up for lost time, but I hold this new life in high regard and as I am able to tackle more of my responsibilities at home. I will incrementally add in things like getting my kids dressed and fed for school, checking my email and voice mail, and cooking regularly.

We pulled out of activities knowing that I couldn’t tax myself with multiple practices a week, this was a wise decision. I’m not at that level, I don’t know what the future holds, none of us really do. My new quality of life has already exceeded my greatest hopes, so now I’m attempting to hold onto that and now I get to create new expectations and goals. They will be based on a new standard.

For those lacking an eye witness account of my improvements. People who see me say that I look so much better. They comment on how easily I move (not like someone who is 120 years old). They also comment that my eyes and my face look alive and unpained (not a real word, but the opposite of a “pained expression”) Lyme’s is really good at hiding within the body, so we will take one year at a time, I feel truly blessed that I have that one year marker to look at.

When we were making the decision about treating my Lyme’s, because it is daunting to look through such vast options with varied outcomes. Aaron, myself and my parents had concluded that if the treatment was successful enough for me to have 2 more years with the kids, then it was well worth it. The thing that totally rocks is that I was just hoping to be coherent enough to love on my kids, have enough stamina for them to be in bed with me watching TV.

In retrospect my hope was just to endure a few more years so my kids could be older before I passed away. I had no idea that I could actually recapture the energy that had ceased to exist. Or negate the overwhelming pain that constantly captured my attention and dictated my every decision. Approximately 30% of people experience unrelenting pain, fatigue and arthritis after being treated for Lyme’s.

There are major decisions involved in seeking treatment for Lyme’s disease. Most of which revolves around testing and the length of antibiotics. Not receiving them, who to test through, who not to test through, is a subject of great make debate and controversy. I can speak as to my experience and the experiences of those around me. Many traditional doctors want to say that there isn’t enough evidence to support the prolonged use of antibiotics.

However, life is almost over for many who have to make these choices . As we contemplated the risk of prolonged antibiotics, I had NOTHING to loose, if my organs suffered damage, it was already obvious that something wasn’t working, I would rather tackle a damaged organ later in life, than die early and have no organs at all, medically speaking. And we made our decision based on these choices.

  • Option 1– me immobilized and incoherent as I fade away.

  • OR, option 2– try a strong treatment plan mixed with modern medicine and alternative treatments, short and hopefully sweet.

  • Option 3-was to try treatment at home, but at that point I was too weak and couldn’t care for myself at all, I think I could have done this if I had gotten diagnosed earlier, who knows.

I couldn’t have focused on the demands of treatment while struggling through trying to parent and survive. I know some (about50%) of my medical friends are cringing at my words. I respect the educated opinion. But it is just that, they base their opinions on education and experience. My forced-education of medical issues has been based on the years I have spent working within the medical system. I have many books that I have poured over. I had dozens of blood tests stating that nothing was abnormal, while it was evident to everyone that something was very abnormal.

The whole not being able to walk for no apparent reason was a big red flag, repeatedly waving in our faces. I believe the expense, awareness, testing and treatment of Lyme’s will be dramatically different ten years from now, therefore I believe the opinion of medical professionals will change. As testing is improved and primary Doctors gain a wider perspective, of the devastation this can cause, many people will benefit. Families will gain back their loved ones. And I predict that the modern medical system will have a very different view of Lyme’s, again my opinion, I don’t need everyone to agree with me, we will see. And Lord willing, I plan to be around in 10 years thanks to my treatment protocol.

Thanks for staying tuned into these post. I don’t plan to update until I’m at 6 months post treatment. I’m going to leave the blogsite up for people searching the internet for information. Please pass on my contact information to anyone with questions. I will point them in the direction of testing and professionals, but I can also by God’s grace seek to encourage them in their journey between existing and living. I will post a document that I created for maximizing your appointments. It helps when you are mentally foggy, or being crushed with pain to have a strategy for making your needs know, keeping track of meds and referrals.

I found that by asking this series of questions, I understood more of what my Doctors were thinking about my diagnosis and treatment plans. I got the idea from a book called The Pain Chronicles. It is a fascinating and comprehensive look into the lives of hundreds of chronic pain sufferers. From how families handle the psychological aspects, how cultural and religious beliefs impact pain and the actual financial burdens placed upon people who are very weak and often unable to work, it’s a good read, but not very humorous.

Because I have talked so much about pain over these months, I will leave you with a tid-bit of my recent experiences with pain. For years I had lived with the type of pain that far exceeds childbirth on a regular basis. Pain that makes you vomit and steals from the depths of your bones. Seriously not exaggerating. But lately I have experienced a new type of pain that is amazing, and comforting, it is the normal pain that you feel after a new workout or an extended run.

For me it has been after incorporating a gentle yoga class into my routines, and taking walks. It feels so good to be sore. I haven’t experienced normal pain levels, everything hurt too much. Heck I couldn’t breathe long enough to stand, let alone attempt a walk. My body just feels like it is responding normally to exercise, heat, cold, light and sound, and those things when not working properly consume so much of you as a person, that other areas of life get neglected.

Thanks to all of you who have helped us and continue to bring us meals. This has been a really hard journey, I can’t imagine doing it without all this support. Until next time~Sarah

Blah, blah, blah…more Lyme’s information:

If you care about the Lyme’s issue read on, otherwise that is the end of my post. This is a recent article with quotes from the CDC this month and studies at Yale, good stuff. If you read nothing else…

According to preliminary statistics1, 2 just released by the Centers for Disease Control and Prevention (CDC), approximately 300,000 new cases of Lyme disease are diagnosed in the US each year. This is about 10 times higher than the officially reported number of cases, indicating that the disease is being vastly under reported.

The data was presented by CDC officials at the 2013 International Conference on Lyme Borreliosis and Other Tick-Borne Diseases in Boston in the middle of August. As reported in the featured article by Medical News Today3:

“This agrees with studies reported in the 1990s that showed the actual number of Lyme diseases cases in the US was likely to be three to twelve times higher than reported… Lyme disease is the most commonly reported tick-borne illness in the US.”

  • According to preliminary statistics, about 300,000 new cases of Lyme disease are diagnosed in the US each year—about 10 times higher than officially reported.
  • While many still attribute Lyme transmission exclusively to ticks, the bacteria may also be spread by other insects, including mosquitoes, spiders, fleas, and mites.
  • Lyme disease is notoriously difficult to diagnose, in part because of its ability to mimic other disorders, such as multiple sclerosis (MS), arthritis, chronic fatigue syndrome, fibromyalgia, ALS, ADHD and Alzheimer’s disease.
  • In order to diagnose Lyme with one of the accepted commercial tests, you must first treat it, in order for white blood cells to mount an appropriate immune response. Only then can a lab test detect the presence of Lyme disease.
  • Controversy surrounds the issue of chronic Lyme disease, and its treatment. While some support long-term antibiotic treatment, this approach has potentially harmful side effects, which is why I recommend considering alternatives such as Dr. Klinghardt’s Lyme protocol.

To add confusion to the story of Lyme disease, ticks usually transmit more than the Borrelia organism. They could simultaneously infect you with Bartonella, Rickettsia, Ehrlichia and Babesia. Any or all of these organisms can travel with Borrelia burgdorferi (the causative agent of Lyme) and each causes a different set of symptoms. When a person has Lyme, they often have some co-infections. Simply put, you can have one tick bite, and wind up with five different infections. Each patient with “Lyme disease” presents differently based upon their co-infections, making a standard treatment plan impossible. Treatment is based upon presentation of symptoms.

Lyme Disease: ‘The Great Imitator’

Many Lyme patients who battle this disease on a daily basis appear healthy, which is why Lyme disease has been called “the invisible illness.” They often “look good,” and their routine blood work appears normal, but their internal experience is a far different story. Several people close to me, including my girlfriend Erin and a loved one of Suzy Cohen, R. Ph, have struggled with Lyme disease for between 15 and 20 years. Both recently tested positive through the IgeneX blood test discussed below. This is actually a common scenario for many Lyme patients.

The problem of misdiagnosis is typical for many Lyme patients because conventional labs are not good at detecting the causative agent (Borrelia burgdroferi) or it’s co-infecting pathogens. Additionally, physicians have been told for years that Lyme does not occur in some states which is incorrect. Lyme is in every state, and in fact worldwide.

With Lyme, the most disabling symptoms are always invisible. You never feel completely well, there is always some issue to deal with, and as soon as one symptom retreats, another appears. The dial is spinning all the time. The constant and sometimes disabling symptoms leave you physically depleted and spiritually weakened. Complicating matters further, Lyme disease is also notoriously difficult to diagnose, and laboratory tests are known to be unreliable. It’s difficult to test for Lyme for a variety of reasons, but one of the main ones is that there are so many species of the germ, and only a handful of strains are detectable with current lab science technology.

It Can Happen to Anyone

Because Lyme and all of its co-infections cause so many constant symptoms, it easily mimics disorders, such as multiple sclerosis (MS), arthritis, Parkinson’s, chronic fatigue syndrome, fibromyalgia, ALS, ADHD and Alzheimer’s disease.The only distinctive hallmark unique to Lyme disease is the “bull’s-eye” rash known as Erythema Migrans,6 a red rash with an expanding red ring around it and this occurs soon after the tick bite. After it clears up, this bull’s-eye rash is gone.

And for the record, it’s not even always in the shape of a bull’s eye. Perhaps now you understand why the cases reported to the CDC have been woefully low. But as just mentioned, less than half of all cases of Lyme can be traced to a tick bite, so this hallmark rash is absent in many of those infected.

So how do you know if you have Lyme disease?

Besides the rash, some of the first symptoms of Lyme disease may include a flu-like condition with fever, chills, headache, stiff neck, achiness and fatigue. Treatment at this point is crucial because it may help you avoid chronic Lyme. If you don’t see the tick and remove it, it can progress to ailments like arthritis, facial palsy, nervous system and heart problems and a hundred other symptoms. For a more extensive list of symptoms, refer to the Tick-Borne Disease Alliance7 (TBDA), but some of the more frequent symptoms include the following:

  • Muscle and joint pain
  • Neurological problems
  • Heart involvement
  • Vision and hearing problems
  • Migraines

To give you an example, recently the College of Charleston President George Benson was hospitalized for Lyme disease according to an email he addressed to campus members. Prior to this, he had been hospitalized for severe back pain, but no one was sure of the exact cause. His possible successor, Republican Lt. Gov. Glenn McConnell was also ill from Lyme disease last year according to The Associated Press. Lyme is everywhere, I suspect that even the most recent numbers reported by the CDC (300,000 cases) is lower than the actual real-life cases. For more real-life examples, see the discussion below, featuring two Lyme patients, and this recent CNN Health article8 by Erik Nivison, producer for HLN’s “In Session,” who was recently diagnosed with Lyme disease after 2 years of symptoms.Controversy Surrounding Lyme Disease.

There’s a load of controversy around Lyme disease. In the past, sufferers were told their ailments were “all in their head,” and the disease was largely swept under the rug. Sadly, this still occurs today and this is frequently missed. The controversy for the most part today largely revolves around whether or not antibiotics are effective against chronic Lyme disease, and whether there even is such a thing as chronic Lyme.

According to Suzy Cohen, doctors that belong to the Infectious Disease Society of America (IDSA) do not believe in chronic Lyme and typically will not treat a Lyme patient beyond four weeks. Some medical doctors and practitioners belong to the  group, which does believe that Lyme can and often persists beyond a few weeks, and are willing to treat you beyond the four-week period.

I can tell you, chronic Lyme does exist, and no matter how long you’ve had it, there is always hope for a full recovery. It baffles me as to how physicians can deny infection when these organisms are stealth and evade detection and standard treatment protocols. As described by investigative journalist Beth Daley in the PBS interview10 above:

“It’s a very controversial disease, in large part because there are so many questions about treatment and lingering symptoms of people with Lyme and if people actually have Lyme disease who are sick… [T]raditionally, you get bit by a tick, you might see a rash or feel a fever or you go to the doctor. They sort of diagnose you through tests or clinically. And you would probably get three to four weeks of oral antibiotics. And that is — most people agree, is usually enough to knock the disease from your system completely. Sometimes, it goes a little bit longer if it’s more involved, but short courses of antibiotics overall.

However, a large segment of people believe that their symptoms linger for years sometimes, and the only way to treat them is to use long-course antibiotics, often through intravenously or orally, for years on end to — so they can live, so they can really get out of bed in the morning. And that is a controversy. The medical establishment says, listen, there’s no proof this longer course of antibiotics work at all. And these Lyme patients say, yes, it does… And a lot of the debate centers on, a lot of insurance companies won’t pay for those antibiotics. As a result, lots of people go bankrupt…”

According to Daley, there’s little discussion within the medical community to determine whether patients with lingering symptoms actually benefit from long-course antibiotics or not. However, some researchers are looking into the matter. Researchers at Yale, for example, are investigating whether the killed-off bacteria might be leaving protein residues behind, causing long-term symptoms. Other research being performed at Tufts suggests that the bacteria can indeed survive, at least in animal studies, and that this weakened bacteria might still contribute to problems. Daley also points out that these latest statistics really bring Lyme disease to the fore politically:

“If you just consider Massachusetts, which is — where The Boston Globe is, we spend $10 million a year and more on mosquito control. We spend $60,000 on tick-borne diseases. The disparity is great. And as Lyme disease burden grows on public health, hopefully — I think people are hoping that the political forces will come to bear, that they will start seeing money to eradicate ticks in the environment or help people learn more about them.”

I personally believe that long term antibiotic treatment is not a wise choice for most, and that every natural alternative should be considered prior to that strategy as there is a major danger for impairing your beneficial bacteria and developing a yeast or fungal co-infections, which are already common in the disease.

The use of antifungals like fluconazole and nystatin may certainly b