PLEASE SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!

Please sign this petition.It is so important to millions of people suffering from chronic Lyme disease and their caregivers.

Most doctors have to adhere to IDSA guidelines in fear of the possibility of loosing their license US & Canada (not so much in CA)

Insurance companies do not have to pay much if anything due to the fact that they are only suggested guidelines - leaving the patient with only enough treatment if any to make their condition chronic.

Since some insurance companies pay only a small portion or treatment the out of pocket expense to the patient is enormous. Length of time to Diagnosis Average cost
Less than 6 months $ 34,000
7-12 months $ 68,000
More than 12 months $ 92,000

Most people have no idea that they even have the disease until they are in the late stages of Lyme. It is an average of 7 doctors and 21 months before it is even suspected. I my case it was 1 1/2 years even though I suspected it and requested testing - but they doctors thought it's not here in CA or West Marin. Leaving me to get sicker and sicker and the final cost over $ 150, 000

There are different rules of thought of how to approach treatment, it is extremely difficult to find which one is going to work the best for each patient it really pretty much depends on how long it has gone undiagnosed - the long the time, the longer the treatment

Sometimes I think they just through the tick away - I know out here they don't even send the tick in any longer since they think that it is rare to get it.

I met a nurse practitioner out here and of coarse I had to bring it up as to why they don’t investigate it when a person some symptoms - her response was that they are told that they do not have the nor money to deal with it - needless to say - I was not impressed and I will just leave it there.

One thing that happens by the time you come down with any of the symptoms you may not even remembered that you were bitten – and the sequence of symptoms can happen in such a way that you would not put the two together. Sign the Petition

Yes - there is Lyme in California

PLACER COUNTY (CBS13) – Placer County health officials are warning residents to be cautious after several ticks have tested positive for Lyme Disease in the county.

Health officials say eight tick samples have tested positive for the disease which can cause fever, headache, fatigue and a rash. If left untreated, Lyme disease can affect the joints, hearts and nervous system. Although most people associate tick and Lyme disease with summer months, there has been a population increase since the late fall in Placer County.

“We are concerned that with the milder winter we have been experiencing, a lot of folks will be taking the opportunity to engage in outdoor activities, such as hiking in tick habitat, and potentially putting themselves at risk for tick-borne disease,” said Joel Buettner, General Manager of the Placer Mosquito and Vector Control District.

The District advises residents who may be working or recreating in tick habitat to exercise caution and implement the following tick-borne prevention strategies:
• Wear long pants and long-sleeved shirts. Tuck pant legs into boots or socks and tuck shirts into pants.
• Wear light-colored clothing so ticks can be easily seen.
• Apply a repellent, such as DEET, registered for use against ticks. Always follow directions on the container and be careful when applying to children. Before entering tick habitat, permethrin spray may be applied to clothing to kill ticks.
• Stay in the middle of the trail. Avoid trail margins, brush and grassy areas.
• Inspect yourself frequently for ticks while in tick habitats. Once out of tick habitat, thoroughly check your entire body for ticks up to three days after being in tick areas. Parents should examine their children, especially on the scalp, hairline and skin folds.

For more information on ticks in Placer County, contact the Placer Mosquito and Vector Control District at (888) 768-2343 or visit www.placermosquito.org. View Article

2012 Update

To be honest with you - it was an incredible battle to get where I am now.

I approached it as war and not to let up, I thought I would never recover and that it was the end of my world, my life and career. My decision was to go after this full throttle and made the decision that nothing will have the best of me. When possible I was teaching even with a pic-line due to how expensive the treatment is for this disease.

I am in remission - but it is always on my mind and very aware, I don't forget where I have been and hope to share the journey with others in hopes that it can help just one other person. There were times where I thought -God- if I was in a accident or some other event, I just didn't have the energy to pull through it, the fighting takes it's toll. I have always tried to stay positive laughing at the craziness, and the difficulty (still lots and lots of tears and how hard ridiculously hard the fight is to get the right treatment, I even the lab tech that had me in tears because she thought the testing I was having was not necessary - you know what, that is not her job and she was only a tech not a doctor.)

If possible you truly need an advocate but someone that truly understands the disease but how do you find one - so in reality your have to find own way through and it is not easy.

I came to a point where I thought I am done with this disease and "I am not my disease" and not to fall into the victim role which is easy to do after fighting for so long and so hard it has been almost 2 years now and I am doing great, I am making plans for the future and making commitments years in advance and have decided if I end up wit any problems I will deal with the then and not to live in fear.

So many people are afraid to say that they have this disease I am not sure what anyone is afraid about - being labeled what? and I think that is part of the problem because many people still think it is only an east coast problem.

Symptoms - You name it I had it, along with the co-infection of babesia I could have easily listened to the main stream doctors and turned my life over to them and if I did I would not be where I am now.

As far as my Bells Palsy it's going on 5 years years I still try to isolate my muscles and work with the occasionally - it's about 95% better if you didn't know me you would think that is what I always looked like - but alas it is not, I feel fortunate to have what I have and it is pretty darn good. Remember if you are only consider about your face there is always someone else that has it worse.

Nothing about this disease is easy. I wish you all the best and I am here