“In most cases, the tick must be attached for 36-48 hours or more before the Lyme disease bacterium can be transmitted.” 

This quote is taken directly from the CDC website, the one place we all wish would share the facts and evidence (although the truth is very unpopular with many medical professionals who in turn look to the IDSA for guidelines on treatment and diagnosis of Lyme.  Unfortunately the evidence is missing there too – see http://www.ilads.org/lyme_disease/media/pdf/IDSA_stevephillips.pdf.)

Although the following story was not documented, the veterinarian still sticks to his story almost ten years after the fact.  I would be willing to bet there are many more unpublished and undocumented stories such as this – especially from veterinarians who have been on the front line of treating Lyme in this country.

Dr. Gary Stuer, the owner of Bethel Animal Hospital in Bethel Maine tells of a potentially tragic story – derailed due to his sharp intelligence and experience of working with tick-borne diseases in western Maine just steps away from the Appalachian trail.

He describes taking a blood sample from a nervous dog suspected of having Lyme disease, and as the vial filled with blood the dog shook his head strenuously which knocked the syringe from the doctor’s hand and sent the needle flying directly into Dr. Stuers arm.

Dr. Stuer immediately removed the needle and was shocked to see a bulls-eye rash develop in that exact location just days after the incident.  The rash was quickly followed by flue-like symptoms that Dr. Stuer immediately treated successfully with four weeks of Doxycycline.

Dr. David Pendray, a respected veterinarian friend of mine in Laramie Wyoming complains bitterly of the current state of affairs in our country where we take better care of our Lyme-infected animals than we do the ever-escalating number of humans.  When I first became ill and could not get a diagnosis from any of the myriad of tests my doctor took, Dr. Pendray suspected Lyme and/or a co-infection of Lyme as soon as I began to share my symptoms with him. 

To this day, five years later, I still have marginal test results in spite of the severity of my symptoms and yet my husband, who is actively working and seemingly symptom free, is strongly Lyme-positive according to the CDC’s definition using the western blot.

People forget that there is no definitive test to diagnose Lyme yet, but we have reason to hope there will be soon (see http://www.lymediseaseresource.com/wordpress/dr-eva-sapi-forges-ahead-with-exciting-new-lyme-cultures/.)  Additionally due to political pressure and the hard evidence researchers are finding about Lyme and related tick born diseases, new research dollars are being channeled into promising cutting edge science.

Keep tuned.

Amy says, I am healthy and happy and continue to be asymptomatic.

My recovery, due primarily to stem cell therapy in India (with a little side credit going toward pre-stem cell antibiotic therapy, as stem cells only have the ability to repair the body but cannot kill bacteria), is still mine to keep.

I believe India is an extremely viable option for Lyme patients to consider pursuing, if traditional treatment has failed. I believe it saved my life. Nothing I had tried prior had come even close to restoring my health back to whole again.

I have disclaimers that always come with any talk of my improvement with stem cells. I give them genuinely, and not out of fear that something I say will send people in the wrong direction. They are just what I’ve come to know about this treatment.

1. I do not recommend this treatment for two categories of people: Anyone with ALS (this excludes those with ALS/Lyme disease whose physicians, or themselves, believe their symptoms may be primarily related to Lyme); and those with psychiatric disorders. 

For most with ALS, I simply think the disease is too fast progressing. I don’t think the stem cells can keep up, fighting the downhill battle of this disease. I think it’s too treacherous a trip and too costly financially and health-wise for those suffering with this delicate disease. In addition, I do believe it slows down the process just enough to make the natural disease process more difficult, but not enough to save the life of the suffering person. I have known many who have lost their battle with ALS after several trips to India. In fact, almost everyone I know who has gone. The one patient I know personally who is still living, is just doing that…living, but by no means engaging in life as most of us know it. Again, this statement this excludes those with ALS/Lyme disease whose physicians, or themselves, believe their symptoms may be primarily related to Lyme.

For psychiatric patients, I think it is downright dangerous. Culturally and medically, India (and its incredible doctors), do not have the same skills we have in other countries to safely handle these types of patients. The level of understanding from a human and medical perspective is not progressive enough yet, for me to feel this would be a good option. It is not for lack of being well meaning and compassionate. It is just a mix of Eastern culture, and limited experience.

The very skilled care needed in the case of a psychiatric emergency is not readily available and as advanced as most psychiatric patients are accustomed to. And above all that, this experimental treatment is far too experimental to even gauge what the effects on the brain chemistry could be in someone with a psychiatric condition.

With both of these conditions, my biggest concern is that once given stem cells, the effect (whatever that might be on an individual basis), cannot be undone.

2. This worked for me. But yes, I have known others who did not have the same results. There is a huge component of individuality when it comes to medical treatment of any type. Because it worked for me, does not mean it’s a cure-all for everyone suffering with Chronic Lyme disease.

On the flip side, because others may have not gotten miraculous results, means nothing against the treatment either. I learned this through my years of my own illness. For instance, hyperbaric oxygen therapy, which I attended for nearly 100 treatments (far longer than the recommended treatment length), gave me very little improvement. In fact, after the treatment, I had slightly better cognitive functioning, but my pain was worse than I had ever experienced.

However, I met former Chronic Lyme patients at the hyperbaric clinic who came back year after year for maintenance doses as they believed that treatment was keeping them in remission, after having tried many other failed modalities.

The generalization of one person deciding whether stem cell treatment, or any treatment, is a reasonable solution to Chronic Lyme disease, is very dangerous. I will not do it here, or anywhere. Each person has the right to follow their own path, to find their own health, to be the anomaly.

In my own world, I have one condition that did not resolve with stem cell therapy. In fact, I believe it was exacerbated by it (probably due to hormonal fluctuations in the body post stem cells). I have endometriosis, which causes extremely painful and debilitating menstrual cycles.

However, through my exploration of energetic medicine in the last six months (including Emotional Freedom Technique, meridian therapy, Eden Energy Medicine and others), I have made huge strides. I still have a little ways to go, but not much at all now.

This, after 5 failed surgeries, years of hormone therapy and a host of other drastic attempts to gain control of it. I have, by working on myself, gotten completely off narcotic painkillers during my worst 1-2 days a month that I had to use them, and am unbelievably impressed with this work. I have gone back to school to become a practitioner myself, and have seen incredible results with those I’ve shared the techniques with, for both physical and psychological symptoms.

But as for Lyme, I bid it farewell a long time ago, and frankly, I never expect to see it again. It has taken much for me to stop peeking around corners every time something doesn’t feel 100% right in a very normal way (being tired after a long day, something I ate disagreeing with me, etc.). But I have done it. I am far more likely to think of 20 things it might be when I have a little headache, before Lyme ever crosses my mind.

When recovery happens quickly from a chronic condition, normalizing your life to meet it becomes a whole new ball game. One that takes time. Admittedly, sometimes I’m in it, even this many years later. But I can say without doubt, there is no game I’d rather be playing.”

I think that we can all relate to this!  A fellow Lyme-sufferer from a Lyme forum allowed me to reprint this very touching essay.

“Hi to all of my friends and family,

I am writing this e-mail because today is my birthday. I am very ill in bed today. It is okay. I am okay. I have my hard days with this illness. I want to tell a little bit of my story of my journey in the last 2 years.

I was super healthy April of 2005 and then on May 1, 2005 I woke up to what I thought was me dying. I had so many bizarre and scary symptoms. The scariest was my heart was skipping beats and then it would beat super fast. I went weeks without sleeping. I truly felt that I was going to die. No one could understand what I was going through. Many people in my family turned on me and believed what the doctors were all saying. They were saying it was all in my head. I was heartbroken. I knew in my core
being that it was something.

There was one person that stepped up to the plate.

My mom.

She held me while cried. She rubbed my back and told me every day that I would be okay. There were days that I would try to think of what I could do to take my life. I just couldn’t deal with the pain. My husband was there but just not. He in my heart was not that supportive. He was financially supportive in every sense of what money can buy. But what my heart craved was just a simple, ” Hang in there”, “It’ll all be okay” , “I am here for you no matter what” , “Is there anything I can do to help you out today?” He just couldn’t do this.

Going through this has truly been the biggest challenge of my life. I have a 3 year old and it is so hard to care for him when I feel this way but he makes me so happy so I just push through. My mom was amazing. I truly for the first time in my life realized what love was. Love is being there. I now understand that some people just aren’t ready to give up any of their time in their lives. They simply don’t get it. Work, cars, money, financial things are just more important. I was very angry with the people that I thought were my friends and family because they weren’t there for me but now I have forgiven them.

God has a plan for all of us and it is just in his time. God has a way of stopping us in our tracks and teaching the lesson we need to learn whether it is through illness or some other plan. I now realize that without my mom I would have died but I also realize that my husband served and still serves his purpose and that is to be there for me financially. My mom could not have done this. So, God put all the different people there to help me and without each one of them I would not be where I am today.

About 7 months ago I lost both of my parents within 2 months of each other. I was not that close to my Father but it still hurt. Then my Mother passed and I thought I was going to die of my heart hurting so badly. She was my rock. Who was going to tell me that I was going to be okay and help me through this illness. I needed her. I had friends and family but they just could not compare to the love of my Mother.

Two months after she died I decided to go to counseling and I was telling her my story and how I had lyme disease. She said, “Wow, that is so weird because I have been seeing a young gal for the last year and I just saw her this week and she told me that she had lyme disease when she was younger, do you want me to give her your number?” I was so excited to talk to this girl to see how she got through it and see what she used to get better.

A few days later she calls me. I could tell she was younger on the phone so we talked and decided to meet up. Her name was Bekka and she was 22 with a 7 month old baby.

My first impression of her was “Hippy” She was so cute. She dressed differently, she had a hippy aura about her, she wore no makeup, she smokes weed from time to time. Her hair was short and curly. Almost messy. She was shorter than me and on the skinny side. She had a energy about her that was infectious. She was just really excited. She told me her story of how her mom took her to Canada and she did an alternative treatment of ozone insufflations and that is what cured her. She was so wise. When I was 22 I was drinking beer, shopping, concerned about money. And here is this 22 year old, Mommy, doesn’t drink, and just so happy and I could just feel her excitement for life and love.

We then developed a friendship. She would come over and help me with Kaden, do my dishes, clean my house, drive me around to do errands, and most of all she always tells me how I am going to get better and she will help me get there. So sweet. I couldn’t believe how caring she was. I asked her why she wanted to do all of this for me. She told me that when she was really sick and wanted to die she asked God that if someday he healed her she wanted to find someone that she could help because she was so lonely going through her illness. She said, “Jamie, I understand how lonely you feel, I have been there and that is why I want to help you. God sent me to you.”

I went to sleep one night and had this dream. It was very powerful and very real. In my dream I was on the couch( my usual spot). Bekka was reading me something standing in the kitchen. She laughed. By the way she has this huge funny laugh. In my dream I looked over at her as she was looking down at the paper and reading and laughing and I thought to myself of how much her laugh reminded me of my mother’s laugh. Then I looked at her hair. It is the same color and length as my Mothers. Her hair started transforming into my Mother’s hair. I was like how weird, What is this? As she was reading she looked up. It was Bekka but my Mother’s eyes looked me straight at me and said, ” It is okay Jamie, I am here” I woke up in a sweat. It was 3 am. I laid in bed for an hour and thought about how powerful this was. This cute little hippy girl was sent to me from God and my mother.

I called Bekka and told her about my dream the next day. She was like, “Wow, that is cool”. She then said, ” Jamie, I want you to know that if you ever get too sick and you want me to come over and stay the night I will.” I burst into tears. My mom constantly would offer to come stay the night with me. The morning after my dream Bekka tells me this. I knew for sure then that this was the work of God.

I feel so blessed by this disease. I was angry for a long time about it but now I see the blessings. I have learned to be empathetic towards all humans. I think twice about the bum on the side of the road. Maybe he or she has gone through of is going through what I am going through. I see the goodness in people. I see the selfishness of people. I have met such caring and wonderful people through this disease. I see the balance of the world. We need selfish people to see the giving people. Vice Versa. We need successful money making people just as much as we need the poor giving people. It is the balance of life. It is an amazing spiritual path that I am on. This disease is horrific but there is a beautiful silver lining.

So, I want to thank my Mother, Bekka, my friends and family and especially all of the wonderful people I have met with Lyme for listening to me complain daily about how bad I feel. Thankyou for encouraging me along the way. Thankyou to my husband. I have needed you just as much as the Bekka’s of the world.

So, I wrote this for my birthday. Today I am too sick to really enjoy it so my birthday wish is that you please do something caring for someone. Do someone’s dishes, give them a ride to the grocery store, tell them that you are there to help them. Just those words mean more than any amount of money or possessions. This is what I want for my birthday is for you to pay it forward. It doesn’t have to be right now but sometime in your life please do this for me. One caring gesture can change a life. I now know this. And remember, “You can’t know what you don’t know.” Life is a fun, bumpy, scary ride and we all need each other for the balance. “

At the end of another busy day in the office I leaned back in my chair and propped my weary feet on the corner of my desk, the only flat space not otherwise occupied by charts, forms, and the remnants of lunch.

Gary, my office partner, and I were sharing “war stories.” A couple of our patients that day had been particularly challenging. “You know what?” he grinned. “Medicine is a humbling profession!” Oh, how true!

Medicine is humbling in many ways. Not only is the human body infinitely complex and prone to all sorts of pestilence and manifold frailties, it seems like the rules keep changing! Is margarine better for you than butter, or not?

For those with diverticulitis, should your diet be free of seeds, nuts, and skins? Or does that extra fiber actually do you good? Should ladies in their menopausal years be on estrogen to prevent osteoporosis … or … not?

As new information is available, we sometimes have to rethink the old standard recommendations. On more than one occasion I have offered authoritative advice, and later been forced to “eat crow”!

Never has the crow been more difficult to swallow nor had more profound implications for my patients than on the topic of Lyme disease.

I used to believe (and most of my fellow family physicians continue to believe) that Lyme disease is hard to get and easy to treat. In fact, I as much as stated this in previous articles I wrote on the subject (See “Ticked Off”). For years I reassured my patients with tick bites that their chances for contracting Lyme disease were slim. I gave them a list of symptoms to watch for and adopted a “wait and see” approach. For those suffering from Lyme-like symptoms, but with no clear history of tick bite and rash, I rarely did blood work.

But I am now convinced that, at least in my neck of the woods (northeastern Pennsylvania), Lyme is easy to get and hard to treat!

What changed my mind? Personal experience. A family member began to suffer a wide variety of strange symptoms 12 years ago, including facial numbness, slurred speech, problems with balance, abdominal pain, and headache. After a few baseline studies, her physician informed her that she was depressed and offered antidepressants.

She told the physician she had read about Lyme disease and requested testing. He refused, stating (as I had to several of my patients) that her lack of history of tick bite and the classic rash disqualified her from any consideration of Lyme disease. But she worked and lived on a farm, had pets in the house, cut her own firewood, and spent much of her day outdoors. Deer (carriers of the primary Lyme disease vector, the black-legged deer tick) were as plentiful as cows on the farm. The ingredients were all there …

She changed doctors and her new physician agreed to order an ELISA antibody screening study for Lyme disease. It was negative, she was reassured, and further workup was deferred. But the symptoms persisted, gradually worsening with time. She developed heart rhythm disturbances, migratory joint and muscle aches, and increasing weakness. The Lyme studies were repeated, this time including the Lyme Western Blot. Again, she failed to meet Centers for Disease Control criteria for Lyme disease.

Multiple specialists, including neurologists, rheumatologists, and cardiologists, saw her; no one could figure out what was wrong. I kept thinking, “This seems to fit Lyme disease, but the tests are negative … Hey, what do I know, these guys are specialists; I’d best keep my mouth shut.”

Finally she was seen by a Lyme specialist. He initiated aggressive therapy for what he recognized clinically, and what was shown on repeat testing, to be a raging untreated case of Lyme disease. After years of misery and tens of thousands of dollars in medical costs, she is gradually getting better.

This same scenario has been experienced at the HSLDA headquarters in Northern Virginia. Multiple coworkers are suffering with Lyme disease, but struggling to find adequate treatment in a skeptical and woefully uninformed medical system. The impact on HSLDA cannot be overstated!

How is it that so many competent, caring practitioners are blinded to the truth of this epidemic? The answer is simple, actually. Like me, they followed the rules as established by the powers that be at the Centers for Disease Control, unaware that there was even controversy regarding the diagnosis and treatment of Lyme disease.

In reality, however, a battle rages between the governmental healthcare policymakers in their well-insulated ivory towers and many front-line clinicians, for whom personal experience clashes with the so-called “standard of care.”

The true victims of this war are innocent Americans: hardworking, upright, and honest individuals like my family member and my HSLDA co laborers, suffering mightily with this brutal disease but with precious few viable options for treatment.

In a role outside his usual job as HSLDA chairman, Michael Farris was appointed by the governor of Virginia to head a task force to explore the issue of the Lyme epidemic in Virginia. The goal of the task force is to discover better ways to prevent, diagnose, and treat Lyme.

Surrounded by those in the throes of the illness, Mike is a motivated man! As he volunteers his time, energy, and intellect to this monumental project, I hope and pray that his efforts will shine new light into the murky waters of the Lyme controversy. Please join me in those prayers, and if Lyme disease becomes a topic in your state’s legislature, get informed and get involved!

David Leggett used to love the outdoors. He was a healthy, active, family man who enjoyed camping trips with his wife and two daughters. His job as a high school principal came with a long summer vacation — the perfect time to enjoy Canada’s vast stretches of wilderness.

That all changed in July 2004, after camping in a provincial park near Sudbury, Ont. “We were out hiking and then one day I couldn’t hike anymore and my knee ballooned up. I felt really, really strange. I had no energy,” Leggett recalled.

By October, Leggett was too ill to work. After doing some research on his own he suspected he might have Lyme disease — but his doctors told him that was impossible because it was too rare in Ontario and it didn’t exist where he had been camping. They were wrong.

These days Leggett spends his time lying in bed, unable to get up to eat or even bathe himself. Most of his Canadian doctors continue to insist he is not suffering from Lyme disease, even though a blood test from an American lab came back positive for Lyme.

The chameleon disease

Lyme disease is often called “the great imitator” because it presents like a variety of different diseases or neurological disorders. As a result, Lyme patients are commonly misdiagnosed with a number of other conditions, everything from multiple sclerosis and Parkinson’s disease to autism and even schizophrenia.

Lyme disease is the most common tick-borne disease in the Northern Hemisphere. It’s transmitted to humans by the bite of a tick infected with the bacterium Borrelia burgdorferi.

Early symptoms may include fever, headache, fatigue, muscle and joint pains as well as a characteristic ‘bulls eye’ rash. Generally, if the illness is treated early the infection and its symptoms can be eliminated by antibiotics. If left untreated, however, the bacteria can move through the bloodstream and more serious symptoms can develop, which can be disabling and increasingly difficult to treat.

Professor George Chaconas a University of Calgary researcher, has spent the last 10 years studying the Borrelia burgdorferi bacteria that causes Lyme disease. According to Chaconas, it’s the bacteria’s ability to change the proteins on its coat that makes it so elusive to the immune system.

“The organism is like a strange visitor from another planet,” Chaconas told W5 reporters. “It’s in a perpetual masquerade party and each time you start recognizing it, it puts on a new disguise and escapes your immune system,” he said.

This may be one of the reasons why Canadian doctors often misdiagnose the disease, or simply don’t test for it.

Medical ignorance

Jim Wilson, who founded the Canadian Lyme Disease Foundation after contracting the disease himself, insists Canadian doctors need to do a better job educating themselves. “The enemy here is ignorance, it’s arrogance and it’s the lack of impetus of our present system to get off its heiny and go do the research that we need to do,” said Wilson.

He maintains that the medical establishment’s ignorance about Lyme disease is forcing many Canadians to seek expensive treatment outside the country. “We know families in just about every province now who’ve lost their homes trying to get treatment,” said Wilson.

In 2007, only 109 patients were officially diagnosed with Lyme disease in Canada. During that same year, there were nearly 13,000 confirmed Lyme cases in the American states bordering Canada.

“Ticks don’t carry passports. They don’t stop at the border, so to think that we don’t have Lyme disease in Canada, I think is not realistic,” Chaconas said.

Ontario has the highest number of reported cases in the country, with 411 documented cases since 2000, when the province first started tracking them.

In an interview with W5, Dr. David Williams, Associate Chief Medical Officer of Health for Ontario, acknowledges that his fellow physicians have been slow to realize that Lyme is a serious problem.

“Some were saying a few years back it doesn’t exist in Canada, it’s a Northeast State thing. Now we said it is in Ontario. We’ve been pushing our Canadian partners saying this is something in Canada we have to be aware of,” said Williams.

For David Leggett, any greater awareness of the danger of Lyme disease comes too late. His disease has progressed so far, he worries it may no longer be curable. “I do want to get well. Do I think I’m going to get there? I don’t know. To be honest, it doesn’t appear that way,” he said.

For more info watch (check links on the right side of page:

Chronic Lyme Disease in Canada Part One

Chronic Lyme Disease in Canada Part Two

Hi everyone. My name is David Rodgers, and it is my pleasure to be posting in Jenna’s Lyme Disease blog, as she has done a great job keeping everyone updated on a regular basis about many different types of Lyme protocols, including diet, supplements, drugs, IV treatment, and more. She has truly been a great help to many in the community and I want to thank her for that.

Jenna has allowed me to let you know about an upcoming event I have planned, which I think will be of great benefit to many of you. For background information, I have had Lyme Disease for at least 10 years (although diagnosed about 4.5 years ago). Over these 10 years, I kept my head in the books, so to speak, and researched everything I could about all-natural ways to treat Lyme and similar conditions.

During these 10 years of research, I have also completed a Masters of Science in Nutrition at the University of Bridgeport, and I now practice as a nutritionist in the Detroit suburbs, as well as via phone or online video conferencing for anyone throughout the world.

As Jenna mentioned in one of her posts not too long ago, it seems like the Lyme patients who are disciplined regarding diet and lifestyle do the best with their treatments. The problem I’ve found is that people have differing views on what foods are healthy or not, and they are also unclear about which supplements are truly the best for optimizing health and avoiding deficiencies.

For these reasons, I am putting on a webinar called “Chronic Lyme Disease: 7 Natural, Proven Steps to Reduce Symptoms.” This will take place on Tuesday, July 26, 2011 at 8:30EST (5:30PST). All that you need to view it is an Internet connection and speakers. This webinar is thoroughly backed by the latest research and by my clinical experience.

Sometimes webinars are mainly a way to sell people some product. This is not the case here. I will be briefly letting folks know that I am open for new clients, but otherwise, I have nothing to sell – it is simply meant to help as many people as possible know about the latest research for diet, supplements, and lifestyle, and their connection to Lyme Disease. I don’t even sell supplements, but I’ll let you know which ones are worth your money.

You may want a little more background about my health protocols, so I also have a free e-report that I have made available called “Diet Soda Makes You Fatter Than Regular and 10 More Shocking Health Truths.” This is available at my website – http://www.nutrientbalance.com – and more information is available there as well.

To sign up for the free webinar, click this link.

Thanks, and if anyone has a question, you may email me at david@nutrientbalance.com – you may also send me questions via this email to be answered at the webinar. Also, please share this via Facebook, etc. or email the info to people you know with Lyme or similar conditions (chronic fatigue, fibromyalgia). Looking forward to seeing everyone there…

Have you ever felt alone on your Lyme journey? Have you ever felt confused and helpless?   That used to be me.  Hi everyone, I’m Rachael and Jenna has graciously allowed me to share my story (and a new resource) with you today.

I’m 19 and have likely had Lyme for about 11 years. I remember when my parents burnt a tick off the top of my head when I was about 8 years old, a traumatic enough experience to etch the memory into my mind. Even though ticks were all around me, I never knew about Chronic Lyme. If I had, things might have been different.

The pain and fatigue really started when I was about 14 and by the time I was 16 I was diagnosed with Chronic Pain. Chronic pain was the only name that the Doctors had for the unexplainable, unrelenting pain in my shins, back, and neck that sometimes jumped to my knees, ankles, shoulders and elbows. I was sent to a Chronic Pain Rehabilitation course where they taught me to hide my pain from the world, never mention it, and told me to get on with my life. And I did, for a while at least.

I started college at 16 thanks to a program in my state and decided since I didn’t have sports anymore, I was going to move off to college a year early (for what was technically my senior year of High school). I was driven and focused and kept pushing myself harder and harder as time went on, frustrated that I seemed to add symptoms without warning.

One day I woke wake up, unable to put pressure on one ankle because of searing pain. Suddenly my digestive system staged a complete mutiny and it took almost a year of experimentation to learn that I am intolerant/sensitive to gluten, corn, potato, dairy, yeast, sugar, and artificial colors.

Then yeast issues took over and to control them I still have to adhere to a sugar, yeast, fruit, and grain free diet. Fatigue would leave me confined to my bed every moment that I was not required to be in class. There were so many more symptoms that I don’t even have time to list, enough that I should have stopped, should have slowed down, or should have at least seen the signs.

But still, I pushed myself harder and harder trying to live “normally” again. Finally my body gave out.

I was mentally, physically, emotionally a wreck. I left what would have been my freshman year of College after only a week and went home to try to sort through the mess that was my body. It was then that I really felt the isolation and lost so many friends. My situation was already difficult, but with no friends to lean on for support, it started seeming hopeless too.

Soon after coming home I was diagnosed with Fibromyalgia and Chronic Fatigue but without any treatment plan, my situation didn’t seem improved.  9 months later, after countless tears and struggles, we found out about Lyme. No one had ever mentioned it before, it was my mother’s intuition, God’s grace, and a chiropractor all working together to bring the pieces together. That was March of 2011, just a few short months ago.

Since Lyme came into the picture my life has turned around and around and around again. I found a LLMD, started treating viral co-infections and am finally starting to feel like a human again. I Herx violently with the best of them but right now, I am slowly improving. I take 80 pills a day and have an entire kitchen cabinet devoted to pill bottles but I am hopeful that one day I won’t need all of that.

The hardest part of having Lyme as a young person (besides the physical symptoms of course) is the isolation that it brings.

While my peers are shopping for a new outfit for the next party, I’m shopping around to save a few bucks on my next prescription. While they do shots of alcohol, I take shots of herbal concoctions alongside handfuls of pills. But finally, I don’t feel alone. I found a place where I fit in, where people understand, where they care, and where I can just be a teen/young adult again. It’s called HealKick.

HealKick is the first social network for young people in their 20’s and 30’s with neuro-immune illnesses. There are many members with chronic Lyme but also represented are Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Myalgic Encephalomyelitis, Lupus, Rheumatoid arthritis, Sarcoidosis, Multiple Chemical Sensitivity, and Mold-related Illness.

It’s an incredible site with all the features of a social network. You can chat with other members, post updates, participate in discussion forums, and post pictures. You can even search the member map for others in your area, choose the language of the site, and earn points for rewards by being active on the site.

HealKick is unique because it brings together people with similar illnesses who are also in the same stage of life. Most support groups are condition specific. HealKick allows you to learn from others in a similar but not identical situation while uniting all through the common age group.

Recently I found out that I will most likely not be well enough to attend school this fall. Do you know who was there for me? Not my friends from High school or College, but my friends from HealKick. They were there for me not because they felt sorry for me, but because they understood exactly what I was going through and most importantly, they cared about me. It was one of the most comforting moments I have ever experienced. Of course, my family was supportive and caring as well but sometimes as a young person the emotional support is so much more meaningful when it comes from peers.

I know firsthand just how isolating and discouraging Lyme and other neuro-immune illnesses can be, but they don’t have to be. There is support available and people who care. If you are between the ages of 18 and 40 and are chronically ill, please come join us at HealKick. I can’t wait to meet you! If you aren’t in the demographic, please spread the word to anyone you know who is.

We all want total recovery, not these percentages you read about….we want it GONE!

Now that I am truly on the road to recovery, I am eager to share my experiences, with the clear understanding that we are all different and what is working for me may not work for you.  The key is to keep trying – never give up and cling to those good days.  Whatever you do, DON’T ignore it hoping it will go away!

After bumping along on the bottom in spite of many false hopes and wild gyrations in between (the roller-coaster ride – you know what I am talking about), I was diagnosed as immune deficient last year and began IVIG infusions in October of 2010 every 3 weeks.

I was originally diagnosed and prescribed this treatment by Dr. Katz in Orange, CT who has been very successful in helping people recover from Lyme using IVIG infusions, however, he is the first person to say that IVIG is not a protocol for chronic Lyme disease.

Are you confused yet?

I am not a medical doctor, so I can only share my experience and report on what I have researched.  Ironically, the only post on Dr. Yaller’s blog this year (excellent LLD in Germantown, MD) is entitled, “Immune Disfuntion and Antibiotics” that helps explain what happens to the immune system when you have Lyme disease (and you can imagine far worse consequences with multiple co-infections.)

One of our readers described some of the dangers of IVIG (http://www.lymediseaseresource.com/wordpress/warnings-about-ivig/), and I am finding that many people are afraid of the IVIG infusions.  If you picture your immune system as an army to protect your body from invaders, and imagine all of the great and small pathogens that wear down our body and demand immune response, then add to that lack of sleep, over-programmed lives, stress overload, improper diet, pollution, allergies, heavy metal poisoning…our bodies have become little toxic waste dumps with our immune systems running on empty.

Some people with Lyme disease have an over-active immune system that will attack the body and cause additional physical problems, some of which can be life threatening.  So the first step is getting a complete evaluation by an expert immunologist or neurologist on the condition of your immune system.

If your immune system is compromised – and it doesn’t necessarily need to be by that much if the condition has been persisting for many years – then a systematic plan needs to be put in place to jump-start and permanently strengthen your immune system so that it can better battle your chronic Lyme disease and co-infections.

I have waited since November to write this post so that I could give a thorough report of the consequences of my strategies – including some independent decisions I made that backfired in a bad way (but taught me a lesson I am happy to share.)

Every three weeks, I felt my energy increase.  A side effect of the infusion is a throbbing headache – my first one last 3 days – as bad as my worst migraine – but with lots of water and Benadryl (doctor’s orders), the headaches became less severe until they are now almost completely gone (I take Excedrin Migraine at the first hint of the throbbing and it dissipates.)

The energy level built slowly.  A few good days with the rest comatose in bed because I tried to do too much while feeling good for the first time in so many years.  As the months passed and the cold Maine winter passed, I found I could spend more time outside walking, mucked stalls and filled water buckets for the first time in five years (OK, it took me ten times longer but I was on my feet doing it!), and in the last few weeks, having found help for the chores, I am able to use the blossoming energy to actually ride my horses – not a one day celebration being lead around on a line, but holding the reins in my hands and trotting – even cantering my huge warmbloods – without any fear!  Yes, I have a long way to go to regain my stamina, muscle tone, independent muscle control, strength…but my dreams are coming true!

Your dreams can come true too!

Here I am now, with my grandson Abram, in bed as usual.  I am approaching the 5 year anniversary of my Lyme crash, and having shared my medical history with several expert Lyme specialists (MDs) my diagnosis has extended to Babesia, (instigating the major crash) with Bartonella and Lyme in my body for most – if not all – of my life.  So I want and need to thank YOU, my subscribers, who have kept me encouraged and sane through my darkest hours. Thank you from the bottom of my heart.

You may have noticed that I haven’t written much this year, and I apologize for that.  I am committed to keeping this blog up-to-date with interesting and helpful information even after I fully recover which I now have hope for – yes, FULL recovery.  I will not abandon the Lyme community when I have that strength and vitality back.  That is my promise to you.  However, the truth is, as I am starting to have really good days, and I try to pack as much living into  each of those unique and special days and the result is that I use more energy than I have access to, and end up in worse shape – back in bed – my mind too frazzled to think much less research or write – until the next thimble of energy appears…

Perhaps this will resonate with some.  I know that last year I didn’t have the strength to plant one rose bush (my very favorite kind of gardening) and last weekend I planted a dozen with my husband’s help!  Last year I sat on my horse’s back two or three times weeping the whole time while being lead by a friend, and last week I had an actual riding lesson!

What do I attribute my slow recovery to?

First, I must emphasize as always that I am NOT a medical doctor and can only share my experience – each of us have what I call Lyme disease cocktails, and each of us have unique “operating systems” medically speaking with our infinitely varying immune systems, our inflammation response, age, underlying health condition, genetic coding, and number/virility of disease(s) and diet.  So what will work magically for one person will not do a thing for another.  I know, this is all very frustrating!

Having said that, I divide recovery efforts into four major parts.

The first part is attacking the disease and destroying bacteria as well as hiding places (such as biofilms.)  I have tried many protocols in order to write the ebooks on my website (still in progress) some of which take a long time to give a true chance.  It is difficult to say  that even though I may not have felt a change after a particular protocol that it didn’t help in some way I was unaware of.

But aside from that, I believe the following have been the most important in my burgeoning recovery: parasite removal, salt/apple poly protocol, biofilm busting protocol (the last two I have to pulse because the herx response is staggering) and IVIG infusions (I will write another post on this).  In addition, the pharmacology that has been imperative is Clarithromyacin, Hydroxychoroquine and Flagyl pulsed, Mepron for Babesia, and  Rifampin for Bartonella (and Artemesinin as strong as I could get it). I find that Bartonella is every bit as hard if not harder to get rid of than Lyme.  I had success with the homeopathic treatment (which needs a doctor’s prescription) from Deseret Biologicals – I needed two treatments (and they should be mixed with Drainage Remedy and Silver Solution.)

The second and equally important part is building the immune system.  I rely on Gold 360, Apple Poly, Strong Multi-Vitamins and Probiotics (see website for my treatment to see specifics and buying guide), IVIG infusions have boosted my immune system significantly and increased my energy in a measurable way (DANGER: Don’t overdo as I repeatedly do), sleep and lots of it is required for healing, protection from stress: upsetting news – don’t watch the TV, argumentative relationships – take a polite (indefinite) break, financial stress?  Ask someone who cares about you to help you figure out a way to plan a budget that works and stick to it.  Ask for help.  I used to balance 9 checkbooks when I ran my own business and did it to the penny every month in less than two hours – now I can’t balance one checkbook in a day or week.  We need to accept where we are…when I finally did that I felt stress roll off my back but I have to stay diligent to keep it off.

The third part is emotional/social.  Depending on how sick you are, you may not be able to socialize at all – which is the case with me.  This puts tremendous strain on your family, loved ones and friends.  It is so hard to be bitter…I have read so many of your notes regarding husbands or wives leaving, family members calling you crazy – no support.  I have been blessed with a supportive husband and family but most of my friends – even close, close friends just disappeared and yet one friend who is a busy and successful artist in Hawaii has managed to find time to visit me 4 times half way around the world and sends care packages all the time…You can’t let yourself become isolated, or your thoughts will spiral down to Dante’s tenth circle of hell (well, he only had nine but I am taking the liberty of adding another – worse than all the others) “Pain and Abandonment”.  It is the place so many of us with chronic Lyme live day after day which is why suicide is not an uncommon way to die with chronic Lyme.  Reach out to Lyme forums and support groups to make new friends who understand exactly what you are going through.

The fourth part is diet and exercise.  I am not any kind of expert on this, however, the victims of Lyme who seem to recover fastest and live a more active life are the ones who have great discipline in their diet and exercise routine.  Dr. Burrascano warns of pushing the body with aerobic exercise too early as it will weaken the body as it is trying to fight the illness, but stretching and some light exercise like walking can be beneficial.  Also, remember that any foods that break down to sugar will feed your disease so think about what you eat and drink.

I hope this does not seem like an oversimplification.  When you are in the thick of this awful disease, death does seem preferable for the most part, but science is moving fast and there are some great minds working on the puzzle of the Lyme cocktails.  It is my sincere hope that my grandchildren won’t have to worry about Lyme, Bartonella, Babesia or CPN.  But for those of us that do – don’t give up.  You are not alone.

The previous blog post on the new Cowden protocol was taken from someone sick with Lyme who researched the different herbs before trying the protocol.

As I try to reiterate as often as possible, there is no right or wrong with Lyme protocols in my opinion but many people become very agitated and emotional over the protocol that works for them – they feel it must work for everyone.  Well, the facts disprove this opinion.  If you think for a moment that sulfa meds may save one person’s life and kill another, I think it is safe to agree with the premise that our bodies are similar and yet uniquely different from our fingerprints to our immune system.

So, here is another lovely description of the new Cowden protocol told by “Sharon of St.Paul” – someone who had been sick for most her life and is now almost completely better:

I wanted to tell you about some, I believe, unique experiences I’ve had with the Cowden protocol which I hope might help others. Throughout this ordeal, I remembered my spiritual director’s words, who said to me when I said to her that I wished I could find someone who could see my health holistically, and help me evaluate and coordinate all the available protocols and help me find a way through everything that I was trying, she said, “that person is you, you have to take control, you can do it.” Those words were both a carrot and a stick to me over the months.

The practitioner didn’t try to explain, she just plunged in with the treatment. She has an electromagnetic setup for testing to find out which microbes one has. At first, I had a quantity of over 40 co-infections, now we are down to Lyme’s, walking pneumonia and a couple of others like erlichia.

With the protocol, in some ways, I got better, albeit lots of herxing, but in other ways, I was near death (losing weight off an already thin frame, weak blood etc.). She was very puzzled. One factor was probably that I am very intolerant of enzyme supplements. I am allergic to milk, which causes instant diarrhea, so that may be a factor as most enzymes are made of milk products, but even plant-based enzymes don’t seem to help. So I was unable to use enzyme therapy to support the protocol. Also, the herxing with Samento was so bad that I would become almost suicidal.

Sharon in Saint Paul
12/13/10