With all the recent discussion on Lyme Disease, I thought I'd share this.

I had the chance to take a long car ride with a co-worker, and we started talking about health issues since her husband is really sick at the moment. She related two stories regarding people she personally knows regarding Lyme Disease, and then forwarded me emails they recent sent her. I

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A close friend of hers in Arizona sent out this email blast to everyone she knows....

Lyme Disease is now in all states and localities and worldwide. The UK, Australia, China...you name it. 100 species...potentially 300 including foreign states. Please listen to any of the info given.

I don’t know where I contracted it. It could be anywhere I’ve gone since the clean up of Katrina 10 yrs ago. Since my DX was fibromyalgia, I did everything I could (including narcotics) to help my pain packed body and cognitive decline. Every symptom in the book. A sweet friend in PA encouraged me to get the Western Blot test from Igenex Lab in CA and it was suspicious. I went to a Lyme Literate Dr. (Regular docs don’t acknowledge it) in PA and confirmed Lyme Disease with co-infection of Babesia. The Lyme Literate Dr. in Scottsdale, AZ found something called Proomyxzoz Rheumatica...a malaria lik parasite in my body...newest info shows it carries at least 5 more malaria forms that hide from the immune system. One year of antibiotics and antimalaria meds has helped minimally. I have the pain rotating from joint to join, cognitive changes like dementia + too many other symptoms to mention, fatigue like chronic fatigue syndrome, can’t exercise or after I am in bed for awhile or pain escalates. No one in my family or friends can depend on my to meet or go out as I can be sick at any time...it has a mind of its own.

I beg you to take precautions in walking/hiking in the wooded areas/cutting grass/watching kits/grandchildren in in playgrounds or outside sporting events, taking dogs for walks, gardening, traveling in wooded areas where there are mosquitos, birds spiders. You just have to look this up on these sites and see what to do immediately. If let go it will develop into many painful chronic diseases or some that cause death. It is the great imposter of all diseases-including psychiatric & MS. The organism(s) have already hit my kidneys and my brain. The rash suggested is not always “bullseye”.. just a rash (which I had).Please be on the alert…it will be in epidemic form this year in all states and abroad. Find what is called a “lyme literate physician” immediately.

Please listen to Dr. Horowitz 9 min. video. My state (AZ) has at lest 200 infected children and adults...some too ill to make the meetings.

(I think this is it: https://www.youtube.com/watch?v=xYMezkigMWk)

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The daughter of a friend of hers...


Many parents have told the story that they listened to the doctors and denied their children’s illness and pain because the doctor told them their child was “stressed”, “faking”, “attention seeking” etc. only to discover, sometimes years later, that their children were/are dealing with chronic infection. The longer you wait to treat, the harder it is to kill the pathogens. It isn’t clear if you can clear the infection if the pathogens become established in tissues.

Sarah got sick Sept 2009. She had been an honors student in middle and high school, excelled in mathematics and instrumental music (all state band tuba, bass in rock/roll band), read a couple of books for enjoyment a week, she and I had started fencing together in the spring/summer 2009, she got her permit, car and was planning parties with her friends. By December, she could not read her favorite fiction novel, needed help walking from bedroom to bathroom, she was in constant unrelenting and debilitating pain from headache, hyperacusis, tinnitus, abdominal pain and abnormal bowel movements. Sarah had/has Borrelia, Babesia, Bartonella.

There was no known EM rash or tick bite. No joint pain or swollen joints. She had 4 ELISA tests, all were negative, including tests on the same blood that had Western Blot bands.

The first symptoms were strange. Her neck was visibly swollen…a lot...the only thing I could think of was “mumps”, but she had been vaccinated. Her throat was so sore she had difficulty swallowing and she had ear pain. But when the doctor checked her ears, they were clear. She felt and looked sick, but she did not have a fever. Her temperature was 97degF oral.

As time went on, more symptoms appeared that did not make sense. I think that is a hallmark of these infections, weird symptoms that don’t make sense and don’t respond as expected and instead of getting better, the child gets more sick. Another hallmark is when even though the child is still sick, the doctor will start saying they are “faking it” or “stressed” or “need attention”.

There was a series of diagnoses: cold -> flu -> mono -> mono w/ secondary bacterial infection -> pressure point headache -> allergies -> stress -> faking -> NDPH (new daily persistent headache). The problems never responded like expected and rather than getting better, Sarah continued to go downhill. She tried doing what the doctors told her to, she felt terrible, but tried to return to school. It only made her more sick.

What worked for her was when we found Dr. Jaller, he did the work-up and started antibiotic treatment. Improvement was seen at the end of the first week of treatment.

Improvement is much slower than other infections we’re used to seeing and can be seen over weeks/months rather than hours/days.

Please ask her and her parents to read “Cure Unknown” by Pamela Weintraub, There was a copy in the public library when I first read it. It was very good and I purchased a copy for home and for other friends who got also got sick. http://www.cureunknown.com/

View the movie “Under Our Skin”.
http://www.underourskin.com/
http://www.underourskin.com/videos/theatrical-trailer

The attached files are also helpful. Burrascano’s monograph is an excellent quick summary of Borrelia and possible co-infections. We did not do a lot of supplements as he suggested, but we did follow his instructions regarding rest, diet, exercise.

It is critical to find a recommended LLMD (Lyme Literate Medical Doctor) who other patients can tell you they have had success with. Ask as many experienced Lyme patients as possible to see who helped and who didn’t.

We take Sarah to Dr. Daniel Jaller in Germantown. He has seen her to 2 good pain free periods. We are currently trying to reach a 3rd.

They can request a list of LLMD from user support groups:
1) MD Junction Lyme Disease Support Group (Ask Group Leader BettyG)
http://www.mdjunction.com/forums/lym...rums/llmd-info
2) Lymenet http://www.lymenet.org/
3) ILADS http://www.ilads.org/ (ask Babara)

I would ask all 3 groups for their recommended LLMD list. I would talk to as many experienced Lyme patients as I could in deciding which doctor to go to. Ask specifically which doctors got their patients well and which did not.

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Scary stuff