Lyme Disease
January, 2009
Hello Everyone,
I have decided to write about Lyme Disease based on my personal experience, and also based on the suffering of so many others who have this devious and devastating disease. I was bitten in 1983 while traveling in the south of France and within a few days my fever was so high, and my head and neck pain so debilitating that it was surmised that I had meningitis. Once a very large round rash was discovered on my back right along my spine it was guessed by the treating French physician that I was either bitten by a tick or a spider. I was placed on Antibiotics for ten days. My improvement was dramatic and I considered the event resolved.
Over the next few years I developed more symptoms than I could possibly recount here. They were roving symptoms that did not fit any medical category neatly. The Lyme Titre was repeatedly negative; I was having multiple random odd symptoms, including pain and exhaustion. Physicians ordered numerous tests, but all proved negative. In the absence of definitive medical proof that I had a clinically recognized syndrome, it was determined that it must be “in my head.” It must be psychosomatic illness.
It wasn’t until many years of suffering later that I finally found my way to a Lyme disease specialist in Connecticut who performed the Western Blot test. The numbers were “off the wall” and I had a severe case of Lyme disease. By that time the bacteria was deeply embedded in my body and brain; psychologically I was depressed, angry and disgusted by the lack of support that the medical community had failed to provide.
Long term oral antibiotics proved ineffective, though at times I had an exacerbation of symptoms – the Herxheimer reaction. At least this worsening of symptoms showed that I did indeed have Lyme disease, and the drugs were creating an effect. This showed me that the medicine was working, but it was insufficient.
I was placed on intervenous Rocephan since this was the best chance at an antibiotic passing through the blood-brain barrier. In other words, even though the other antibiotics worked to some extent, it essentially was not passing through to the brain to cure/heal the brain symptoms. The neuropsychiatric manifestations of Lyme disease were finally being researched and explored by Brian Fallon of Columbia Presbyterian Hospital. His work validated, for me, the connection between Lyme disease and memory, the Lyme fog, depression, word retrieval problems, word reversals, difficulty with handwriting, and many, many more symptoms.
I had to fight for it but I was on intervenous antibiotics for many months. That provided the basis for marked improvement in my health. I learned to combine nutrition, exercise and many alternative healing methods to finally come to a balance of health in my life. I developed a practice of energy healing, relaxation exercises, meditation and something called shamanic journeying which I have named REIKI FUSION. This type of therapy developed in the context of a SPIRITUAL CRISIS that Lyme disease induced in me. Good things can come out of bad. You may refer to the video on Reiki Fusion to get an idea of this healing method.
The series of blogs that I am developing is designed to share what I have learned about the up-to- date information about Lyme disease topics , from this lay-person’s perspective. It also offers my expertise on the psychological conditions that accompany Lyme disease in the individual, the family, the child in the educational setting, and much more. I want to communicate my experience and expertise as a means of sharing the knowledge that will allow us to participate in our own healing. Knowledge is empowerment, and it is with knowledge that we will be able to foster a more serious response from our medical providers. It is with knowledge and community that we will challenge the culture of denial and provide support for the courageous pioneers who research Lyme disease and treat us – in spite of potential legal attacks and peer pressure.
I welcome you to follow my blogs, and encourage you to communicate with me about the topics I bring up. Ask questions, challenge, give feedback. There’s a lot to learn and we need to be here for each other. Please refer to the Lyme disease blog (see the Lyme disease blog section listed below) .
Blessings,
Cynthia
Entries (RSS)
Cynthia,
Saw your blog on lymefriends and I’m so glad you chose to help get the word out about this monster of a disease. I am currently on IV abx and herbal supplements. For the first time I am getting better. I’m almost afraid to say that because it’s been so long. Is it true? Can I be getting better?
Listening to your story I know it is and I have all the trust in my LLMD. thankfully this dr. takes my insurance which is less taxing on my family. I fear the treatment of so many abx but I fear falling back worse. I pray the government opens their eyes to this epidemic and allows those less fortunate to get help. There are so many warriors out there fighting.
Blessings,
Trish, MA
You are such a good writer! I really appreciate your web site!
Hi Cynthia,
My sister, Cindy, showed me your article about lyme disease. I was at the doctors this morning and became so upset. I had to get away for the afternoon. So I decided to drive an hour and a half so I could talk to somebody. I have Lyme disease and noone is listening to me. It was nice to read your article and know my symptoms are not in my head. I am on Doxycycline and have been for three months. I still have many symptoms. From everything I’ve read, I feel I should be on an IV antibiotic. How do I go about convincing my doctors? I should say my worst symptom is inner gidders. My doctor feels that this is not a symptom of Lyme. And that my Lyme disease is managed. Help!!!!!!
Linda
Thank you so much for writing Linda. I am so sad that the medical community is dismissing your experience. I am listening. I hear you loud and clear. Unfortunately many doctors are are not yet fully informed about this condition and how deeply it can effect us, and in so many ways. The worst part of this is that if we are not validated we run the risk of internalizing blame and doubting our own feelings and experience.
When the spirochetes enter into our bodies they can go anywhere. Our brains have no protection and the corkscrew bacteria can penetrate into any part of our body. Internal tremors – the jitters you mention – are very common. The symptoms are “not in your head” in that they are not imaginary, and yet, at the same time if the spirochetes or other bacterial coinfections pass into the brain, brain stem or spinal cord, it can effect neurological and brain function in many ways. It may also affect immune function and any other organ in the body.
It doesn’t sound like your Lyme disease is being successfully treated thus far. The treatment can be complex and long term. Rather than trying to convince your doctor of anything right now it may be helpful for you to get as informed as possible about this disease and other co-infections, go on-line and join a support group, or attend one in person in your area. This illness will be forcing you – all of us – to become our own advocate, to learn about our body, about this disease, and how to treat and heal on all levels. There are Lyme literate doctors who understand and treat aggressively if the clinical symptoms call for treatment. It is important to know that you are not alone.
You may e-mail me at cynthia_chase@sbcglobal.net to discuss your options further.
Blessings, Cynthia
Hello Sue,
Thank you so much for the compliment. Keep coming back to the site. I am developing an article about the neurological signs of Lyme disease. I am very excited about sharing news about this complex of diseases and the new promising approaches and treatments.
Blessings, Cynthia
My 28 yr old daughter has had Lymes for over 10 years and after having her baby the symptoms have excarebated and she is back to feeling as bad as when first diagnosed. VEry hard to take care of a newborn for sure. DOctors here is CT are releucatnat to see her and we are at a crossroads of where to go, Even though I do energy work on her (certified in transformational Energy healing the journey remains long and sometimes painful.
LLMDs in CT for Valerie:
Dr Thomas Moorecroft in Glastonbury CT
Dr Gerald Weiss in Norwalk CT
Dr. Steven Phillips in Wilton, CT (have not seen personally)
Cynthia, Same here, my Dr. does not believe in or that I need IV antibiotics, am taking oral & have been for for almost two years, dosing up and rotating three different types….now he has decided to be on oral antibiotics for three weeks and off one to try a “sneak” attack on the lyme…wondering how to get IV antibiotics, I think it is something I would at minimum like to try to see if had an impact.
Hi Cindy,
Do you have any neurological signs of Lyme disease? Go through the evaluation by Dr. Bransfield in the Lyme section of this blog to make a self check. If you do, that may mean that spirochetes or another bacterial co-infection is in your brain. The difficulty with treating microbes in your brain is that the body does not allow most oral antibiotics to go through what is called the “blood brain barrier.” Under these conditions it may be helpful to consider IV anti-biotics to get inside the brain and spinal cord to reduce or eliminate the invaders.
What you are describing in terms of being periodically on and off oral antibiotics is (I believe) called pulse therapy. The theory is that the bacteria is “smart”; attacking (the killing phase), then stopping the attack would encourage the bacteria to be allowed to multiply. Once they feel safe to “come out and play”, they would then be attacked again. By repeating this kind of cycle it is hoped that deeper and deeper layers of bacteria would come to the surface and be killed. One element that I feel is missing in this approach (aside from the possibility that it is not killing off bacteria in the brain) is that the detoxification from the die-off of the bacteria is not considered.
The holistic approach that I have personally found most helpful is the alternation between the killing phase and the clean up phase. No matter what type of anti-biotic is used (traditional allopathic – oral or IV, herbal, homeopathy or energetic) once the bacteria or virus is killed off neuro-toxins are produced (as well as neuro-toxins that are produced from the organisms living in your body) and these must be cleansed from the body. The use of green products, herbal and homeopathic detoxification products are useful in this phase.
Some physicians are keyed into this process, some are not. Naturopathic physicians are trained to work on this level so you may want to consider adding this approach to the one you already have in place. Consider also that enhancing your own immune system is key. Your body needs to be supported to do it’s own job. Review your lifestyle and examine what you are doing to either support or undermine your body’s own miraculous capacity to heal itself.
The issue of who would prescribe IV antibiotics and who is “Lyme literate” is tricky. The political atmosphere has become so fear-based, polemic and devoid of common-sense that some patients won’t even give out the name of their Lyme-literate doctor for fear he or she will be “railroaded”, charged, arrested or fined. It is a sad state of affairs. On this basis, I ask that you e-mail me for any additional detailed recommendations.
Another note: the science is constantly changing in this area – as in all other areas. There is no perfect treatment since this complex is illnesses is so complicated. You are doing the right thing as a patient suffering with this devastating illness: you are seeking answers for yourself. Good for you.
i am in mass. is dr tom moorcroft the best person to go to for chronic lyme? who would you suggest. who really knows what to do?
thankyo so much
soo glad you are so well!!!
Hello Wendy, I have not met him, but we are very impressed with what we have heard about him. He an osteopath and due to his training he is able to keep the big picture in mind. He is young and energetic, and he has Lyme disease himself, so that adds to his empathy and understanding of the disease. As an osteopathic physician he can prescribe medications, and he offers a natural, holistic approach as well. He appears to be the best kept secret! Let me know how your treatment goes. Cynthia