Before hearing about biofilm at ILADS, I had this image of an umbrella or a hunter’s blind that the bugs could hide under. That image was shattered when I heard about the current research being done by Dr. Sapi on Biofilm. Biofilm has a 3D architecture and is like Facebook for bugs. The bugs form colonies that communicate with each other and there are many different kinds of bacteria found in Biofilm. They exchange genetic material and information, which means they can change.
According to Dr. Alan Mac Donald, Biofilm is well structured, especially the ones created by Borrelia burgdorferi (Bb). It is a structure that creates a leather-like crust that is difficult to penetrate. Bb morphs into many varying forms of itself including Blebs and Persister cells. Blebs are not true bacteria but are like liposomes that contain the DNA of the bug. They can only be seen with an electron microscope. They are compounds that contain Osp A, C, etc. The cystic form of Bb sheds Blebs as well.They are capable of doing injury and act like weapons which cause transfection by penetrating T Lymphocytes, causing more Lyme. Once a person is transfected they have Lyme for life. Blebs also cause autoimmunity, stimulating a T and B cell immune response.
Persister cells are identically the same as original cells and cause recurrence of infection after treatment is ended.They hide in the Biofilm and go dormant, continuing to survive until they are shed to repopulate outside of the Biofilm. Persisters are killed by pulsing antibiotics, using multiple antibiotics or herbals, and by dissolving the Biofilm.
Once Biofilm is mobilized it requires massive doses of Biofilm busters. There are several different Biofilm busters available to use.I recommend you seek the advice of your Lyme literate provider for which ones are best for you. Some require an order. Others can be dangerous in too high dosing so monitoring different labs is an important aspect of treatment. Examples of Biofilm busters include Bolouke or Lumbrokinase, Nattokinase, Serpetidekinase, Claire’s Interphase, and other plant enzymes. I like to muscle test for which ones work and which dose is most effective. Samento and Banderol work well together. Tinidazole and Rifampin also break apart Biofilm. Ca EDTA is a heavy metal chelator and works to disrupt Biofilm. Finally, Heparin is effective but can only be used for a month as it causes osteoporosis if used too long. However, if you are sensitive this can be too much for you. Remember that when the biofilm is melted, you have more bugs circulating, which can cause a more severe HERX. It is all about balance when treating and each person is unique. Please work with your Lyme-literate provider to find the perfect biofilm treatment that works for you.
I continue reading comments from numerous people with Lyme, expressing their rage and hopelessness about their illness and the marginalization by the current system that denies Lyme exists.
Being caught in the place of anger and fear is a stuck place. A large part of recovering from Lyme is understanding that this illness requires your complete attention in every aspect of your being. Energetically, to remain in rage and despair can stall recovery. It does not matter how many antibiotics, herbals or other medicines you take, in my professional experience, rage will slow your healing.
Lyme is an excellent microcosm, a perfect example, of the world today. We are all being asked to expand our awareness, to become more conscious of our surroundings and how we interact in each moment, to help ourselves and each other grow and heal, whether we have Lyme or not. With Lyme I feel this is a necessity.
Denial will keep you from healing and recovering. Begin by asking yourself what trauma(s) have you suffered in your life? What can you do to forgive and move past the trauma? Recently, I was speaking with one of the MD's I work with. We were talking about treating newly activated Lyme and he suggested adding a second or third antibiotic if there was trauma as part of the history of the patient.
What can you surrender that no longer serves you? What habits prevent a return to health? We all have our favorite foods. I’m not suggesting total abstinence of comfort food and drinks, although I do ask that you consider moderation more than indulgence. Are you addicted to sugar? Lyme feeds on sugar and yeast. Does gluten make you feel bloated or gassy after eating it? Dairy? Soy? All of these foods are inflammatory. Do you smoke cigarettes? What is holding you back that you have the power to change?
I have seen people quickly move to recovery once they completely integrate healing in all aspects of their mind, body and spirit. No one asks to get Lyme. It is a terrible illness that undermines your life and those of your loved ones. I live this every day with my daughter, so this is not only a professional take on healing but a personal one as well.
I recommend you gently and kindly look in the mirror and see what it is you need to resolve so that you can move forward into recovery. It is a powerful step toward your own healing for both Lyme and in life.
Gratitude, if you look it up in a dictionary, is "feeling appreciation". This does not describe the power of feeling gratitude. For me, it is "A deep, in every cell, feeling of thankfulness". When I feel grateful for something, it fills my heart with joy, and every cell of my being experiences this joy.
I am filled with gratitude! Every moment I am experiencing a deep abiding gratitude for everyone who took part in helping to raise enough money to have a successful Indiegogo Campaign for Inanna House.
There are many people who shared this experience with us. Sarah Lamando, who decided to do something to get Inanna House really moving toward fruition and created the campaign. She got people to donate their art, books and other goodies so that those that gave received as well. I am forever grateful to Sarah. Throughout the campaign she was diligent and attentive to the process of working for success, despite her own struggles with Lyme disease. She is one of my heroines! Sara Donnelly, who took our vision of Inanna House and shared it with you all. She has created and maintained the websites and social media platforms, building valuable relationships and keeping them active and interesting. Without her efforts, we would still be dreaming about this project. There are many individuals who posted daily, asking their friends and family to participate and donate. We could not do this without you! And to those of you who did donate, I honor you! Thank you. Thank you. Thank you.
My vision for Inanna House began many years ago and I have always known it was a collective vision. We are manifesting this vision now. It is happening because all of you are giving your energy to this project. I know in every fiber of my being that we will succeed, and Inanna House will thrive. Together we are creating a new paradigm in health and healing while creating a place for those sick with Tick-Borne Disease to find a way to recover.
As a lyme literate practitioner and as a mother of someone with Chronic Lyme Disease, I want to share some insights I have gained in the last two years. Amanda has had active disease since she was 15. She is now 37. We have been treating her for almost two years. Before I became lyme literate I was like any other family member frustrated by the incredible variety of symptoms Amanda complained about. I kept telling her to get help for her emotional issues and to get on with her life. As a 'knowledgeable' health care provider I just couldn't put the array of problems together into a diagnosis that made sense. Amanda would sometimes rage, literally, with anger that was scary. She would get panic attacks and these increased in intensity and frequency as the bugs became further entrenched in her body. Antidepressants were ineffective. Amanda would complain of severe pain, total body pain, joint pain that would migrate, hip pain that made her feel like her bones were breaking, muscle pain, stomach pain, abdominal cramping, and headaches. Wow! It was overwhelming to hear about this and feel helpless to help. She has had horrific stomach issues and would throw up often and feel nauseous constantly. I attributed these symptoms to her inability to resolve her emotional feelings. Yet I believed she needed psych help to get over the pain, that these symptoms were related to the trauma of the rape she experienced at a young age. For many of her family members it was Amanda crying wolf over and over again. Her emotional lability pushed people away as did her rage. I was the person the rage was directed at mostly and eventually I just wanted to disengage from it all. I did not make the connection of Lyme until I became Lyme literate and then everything she had been saying for years made sense.
Initially, I felt guilt for not believing her and helping her to find help. Fortunately we have so much guidance now. But when we had to interact with the current health care system, I thought that because I was 'one of them' they would believe what she was experiencing, listen, and help. I was foolish to believe this. The disconnect between IDSA guidelines and ILADS guidelines rang loud and clear. I became the drug seeking, interfering mother and my gravely ill daughter became a psych case.
Amanda lived about a mile from us at the beginning of treatment. As I have written before we had a hellish year of 17 ER visits and 7 inpatient hospitalizations before I took her home and started treating her. My husband and I give her medicine every four hours around the clock and have for over 6 months now. She gets IV hydration, nutritional support and antibiotics. We prepare her food, do her laundry, help her with personal care, and are helping to raise her 12 year old daughter. In-between all this we work and make time for our relationship. Hundreds of thousands, probably millions, are doing this across the globe. Imagine the impact this is having on the global economy, as well as the emotional costs for those involved.
The financial costs of treating CLD physically run into thousands of dollars a year and can go on for several years. People lose their homes, their jobs, their relationships. Insurance companies refuse to pay for something that 'doesn't exist.' The burden of this is great and those that have no resources suffer for years. Many simply give up.
For those with the disease, healing on all levels is necessary. This encompasses not only the physical but the emotional and spiritual. The disease is a message to change the way they have been living their life. As Katina states so eloquently in her book, Out of the Woods, " The more debilitated and stricken people are, the more time has been created in their lives for reflection and realignment with their life dreams and purpose. It's not random that those who have the most to offer the world-those who are working hardest and have the most altruistic attitudes- can get hit the hardest by this illness as they push themselves so hard, with little self-recognition. We must learn how to love our very selves with true compassion, through the tender and tragic mercies of this insidious and erratic illness". This aspect of CLD is as critical to address as the physical. The infections will not resolve without doing this work.
I believe this applies to those of us that care for their loved one as well. It is a consuming experience that requires surrender to each moment to avoid burnout that can come with care-giving. The rhythm of each day is dictated by the needs of one person and it can be overwhelming. Some family members walk away when they decide they have done enough. Many choose to believe the mainstream hype that CLD doesn't exist. But for those of us that are able to remain steadfast, hold love in their heart, the reward of watching health restored is amazing. It is worth every moment of exhaustion and frustration. I get to assist someone I adore in her transformation; and, like a butterfly coming out of her cocoon, I am witnessing my child coming back to life. The process is slow, agonizingly slow, but each small step is a gift. One of my mantras is 'God gives nothing but good, either gifts or lessons, and really, they are the same.' Another is 'everything is perfectly manifesting.' This reminds me to embrace the moment and learn so that I can shift my consciousness ever higher, and return to a place of peace and acceptance. Those who are desperately ill with CLD need their loved ones to be present and whole. Like the birthing of a child, a woman is alone with her experience of labor, yet she needs support while going through it. So does someone who is chronically ill, frail, weak, exhausted, and in severe pain. My daughter, who is so ill, is the same being she was before she became sick, working to heal from an all consuming disease, and she needs all the assistance we can give. I will be here until her healing happens and she can move forward in her life once again.
It has been awhile since I spoke of Amanda, my daughter with CLD. She has had active disease since she was 15 and will soon be 37. As I look back on this journey with her for the last almost 2 years, I remain optimistic that she will completely heal.
Amanda has been bedridden for the last 5 months. For the first part of her treatment we tried oral antibiotics, a binder, probiotics, multiple supplements, some homeopathics, and herbal tinctures that target the different infections, but nothing worked. Her GI tract was riddled with Bartonella, causing horrible nausea and vomiting, and she had leaky gut. From September 2010 to September 2011, we visited the ER 17 times because she became dehydrated from vomiting out of control. Seven times in that year she was hospitalized. Each time I would plead with the hospitalist to treat her for infection with either Rocephin or Gentamycin and each time I was refused. "Your daughter does not have Lyme disease as it doesn't exist! Let's call in the therapist". The last time she was in the hospital we had to deal with a particularly challenging young MD who had been involved in her care there at least three previous times. Amanda was so distraught about having to "be at his mercy" that I took her out and we never looked back. Now I have emergent IV meds at home in case her vomiting gets out of control again. Fortunately, we have avoided this by ensuring that Amanda receives her meds every four hours around the clock. With the PICC line I am able to keep her hydrated and give her extra nutrients. We are treating her with IV antibiotics and it has made all the difference.
Once I realized that the current health care system was not going to help her, and we started to treat her at home, she started to turn around. It was scary to start the antibiotics at home initially. Dr. Nathan and Dr. Gordon are supportive and helpful, which gave me the confidence to proceed, but it was still scary. What if she had an adverse reaction to the meds? Or she started to herx so bad that I couldn't control her symptoms? But I knew if we didn't do it she would not make it so it was a no brainer to proceed. We, my incredible husband, and a friend, Emily, and I stood around Amanda and blessed the medicine and it's effectiveness and away we went!
We have completed two rounds of Gentamycin, which targets the Bartonella primarily, but also targets the Chlamydia pneumonia, Mycoplasma and Lyme a bit. During the first round her joint pain increased and her nausea almost went away. it was the first time in over a year that much of her energy was not wasted on stopping herself from throwing up and she started to really rest, sleeping deeply for up to 18 hours a day. The second round the nausea came back but the pain decreased. Instead of 8/10 pain, even with morphine, it is now consistently a 5/10. She no longer has severe abdominal cramping and sharp shooting pains. Her mind is clearing and she is more present when she is awake. Her world is not as small. Her daily headaches are less and the sharp-shooting nerve pains are gone from her legs, feet, arms and hands.
Now we are using Rocephin which targets all the bacterial infections, but especially the Lyme, Mycoplasma, and C. pneumonia. We will be using Flagyl and Rocephin in a pulsing manner to get at all forms of the Lyme. We are giving IV Phosphatidyl Choline daily for use as a binder as it helps to remove cellular debris and supports the liver. We are making progress.
Now she needs to gain about 15 pounds, eat more protein and alkaline foods.
Amanda must work on the emotional, mental, psychic and spiritual issues to clear them. She will not get well unless this is accomplished.
From this experience I am learning to move past my own anger over how Lyme patients and their families are treated. The truth is the current system does not get it yet, so it is necessary to work around this denial. As a group, the Lyme community is strong, supportive, discerning, courageous, full of love, and compassion. But many are still stuck in their rage. Rage that their illness was not treated in time to prevent CLD and all the suffering that goes with it. Rage at the ignorance of the current health care system and the IDSA. Rage at insurance companies for failing to cover expenses that having insurance should cover. Rage of family members as they watch their loved one suffer.
Anger keeps us in fear and enslaved. It keeps us stuck. It steals our personal power and our life force. It stops us from moving forward and into love. We are either in fear or love. While fear takes away personal power, love gives it back. By forgiving and moving past the anger, we are able to heal and move past the limitations caused by CLD and the trauma that is a part of it. Love empowers us, not just to stand united and demand proper treatment and recognition, but in our everyday lives in every moment. And, individually, by moving past all the trauma we get to heal, completely heal all parts of our being. The spiritual and emotional must be addressed in order to heal. I have stated before that I have not met anyone with CLD who has not experienced some type of significant trauma-abuse of any kind, loss of a loved one, physical trauma, or severe physical illness that precipitates the expression of CLD. This must be resolved. By staying in anger this cannot happen. Find some way to get past the rage and into a state of love and forgiveness, and in doing this, reclaim your power.
One last comment I wish to share is this: It is time for the world to learn about CLD. If those that are unfamiliar with the danger of a tick bite become informed then CLD can ultimately be eradicated or, at the least, relegated to a very small percentage of the population. If providers are educated about the necessity of 6-12 weeks of antibiotics after a tick bite or the first signs of symptoms then CLD doesn't happen. My fervent desire is to spread the word and increase awareness so that people can learn to demand proper care after exposure to a tick bite. Since the health care system is not responding to the epidemic, then as individuals, we must. Let's shine the light on this so awareness grows. Let's save some lives!