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Lyme Disease/Untreated Lyme disease

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Question
I have lyme disease since 1980,this is before it was diagnosed as a recognizable disease.Got it from sleeping in a grassy parking lot in Northern California for themed event. I am deathly allergic to penicillin and tetracycline, which at the time appeared to be the only antibiotics being served as vaccine for this insidious disease. Now it has been over 35yrs since I contracted lyme disease & I have been treated with a variety of antibiotics for pneumonia & other difficulties over the years. None of them seemly stopped any of the after effects,in some cases seemed to have made things worst. I cannot find any research on this disease other than precautionary warnings, and 'this disease is easily gotten rid of with antibiotics or the symptoms will go away after a couple of weeks.

This does not help me convince my family I am in serious trouble, I have side effects that I am not sure are related or not. My primary doctor dismisses the lyme disease based on the CDC information, that says 'easily gotten rid of with antibiotics' except it has not gone away. I can barely walk, must use wheelchair, I have burning numbing sensations on both legs,& arms. Migraines, osteo-arthritis, glaucoma, essential tremors, cartilage seems to be disappearing in joints which is quite painful, stomach problems include nausea, painful spasms, & the list seems to go on. One last thing extremely itchy and burning scratchy chicken pox like sores that refuse to heal & must go through a chicken pox virus cycle before it goes away, only to return three months later. I am sixty years old and I feel like I am over 80yrs old & extremely frail & or tired all the time. This is not how I want to live, can you help me?

Namaste

Konane

Answer
Dear Konane, thank you so much for writing and I'm so sorry to hear everything you've been through. Sadly your story sounds VERY familiar - I've had every single symptom you wrote about including the strange itchy rashes that would reappear every 4 to 6 weeks for over 2 years. If you haven't already watched it, I'd like to recommend you watch the film "Under Our Skin" which is available on Netflix and may be online elsewhere to view. It will help you understand why certain MDs follow the CDC guidelines and not the other treatment protocols which most LLMDs (Lyme Literate Medical Doctors) will follow.

Many LLMDs follow the guidelines of Joseph Burrascano who believes in a much longer course of antibiotics as well as a variety of supplements to help build back your immune system. You can read more at this link: http://www.ilads.org/files/burrascano_0905.pdf
This will provide you with some valuable information about Lyme Disease and treatments.

Regarding your allergies to antibiotics, there ARE homeopathic remedies which have antibacterial and antimicrobial solutions. I would strongly encourage you to read the book by Stephen Buhner called "Healing Lyme". It is one of the most well known books on alternative medicine treatments (which can also be taken in conjunction with antibiotics) that is available.

You didn't indicate what area of the country you live in, so if you'd like to write me back, I'd be happy to let you know if there are any local Lyme support groups in your area. I have found my own Lyme support group to be invaluable in dealing with my own illness. It's wonderful to have the support and sharing of knowledge by other people in your area who also have Lyme Disease.

Finally, I would like to also recommend that you read Bryan Rosner's book "Top Ten Lyme Disease Treatments". It goes into detail about various treatment protocols because there is no "One Size Fits All" treatment for Lyme. What works for one person, may not work for another - this disease can be complicated by additional co-infections such as Bartonella, Babesia, Ehrlichia, etc.

I would also STRONGLY encourage you to find a doctor who is preferably a member of ILADS, which is the International Lyme and Associated Disease Society.  http://www.ilads.org/
You NEED to have a doctor who understands Lyme and can work with you to help fight the disease and also reduce your symptoms. I was quite ill - literally bedridden and had severe nerve pain all over my body, however, once I found a wonderful LLMD and began a treatment plan, I started improving within 5 weeks and have progressively gotten better in the 3 years and 3 months now that I became sick. I still have a long way to go with my healing, but at least I DO see progress and I've had to learn to have patience - that someday I WILL become fully functioning again!

I hope you will read the books I've recommended, watch the film "Under Our Skin" and read about Dr. Burrascano's Treatment Guidelines. I think this will give you a good start in educating yourself about your options and begin your journey back to becoming well again!

Best,
Bonni

Lyme Disease

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Bonni

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I contracted Lyme Disease while on hiking trip in Virginia almost 3 years ago. I returned to San Diego and within 3 weeks came down with a terrible "flu-like" illness. During that time, I developed some strange rashes on my fingers and the palm of my hand. I also had a giant melon size purple "bruise" on my left thigh which may or may not have been a bullseye - but I didn't even know that was back then. A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 and 1/2 years. I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain. It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in San Diego and we only have FOUR Lyme Literate doctors in this city. I am a member of several Lyme support groups and have become very active in spreading awareness about Lyme Disease and helping people get the right treatment they need. I decided to join up as an Expert, since I saw there were currently no "Lyme experts" listed at this time. I can answer most questions about Lyme - most importantly, how to instruct people as to WHERE to get help, answers, resources, etc.

Experience

I have lived with Lyme Disease for almost 3 years now (in January of 2013) and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available and educate myself. I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need. I've worked with dozens of other Lyme patients in helping them get the proper information and providing them with the resources they need to find doctors, learn about their options for treatments and help them find local support groups in their area. It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, etc. - the list goes on and on. We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!) I am now unable to walk without a cane or walker (depending on how bad my legs are!), I continue to have peripheral neuropathy in both arms and legs, brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on. But I'm hopeful that I'm on the right track for treatment (Finally!) and am optimistic that SOMEDAY, I WILL be cured! :)

Organizations
Local and National Lyme Groups including CALDA (California Lyme Disease Association) Southern California Lyme Group MD Junction Lyme Group

Publications
I have a blog called http://sandiegolymer.blogspot.com/ which I definitely need to update since my last post, but it DOES have a LOT of useful links and information!

Education/Credentials
I have a Masters Degree in Film and Television - no medical degree here, but honestly I feel like I know more now than most (non-Lyme) doctors in the country.

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