When Lyme disease becomes a nightmare | May 2, 2012 | Almanac | Almanac Online |



News - May 2, 2012

When Lyme disease becomes a nightmare

Locals tell of years of elusive diagnoses and painful symptoms

by Kate Daly

Sherry Cagan of Portola Valley says she nearly died when she ended up in the emergency room with the systemic MRSA staph infection last year.

This story contains 1619 words.

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Posted by sarah
a resident of another community
on Jun 5, 2012 at 8:51 am

this lyme disease story (when lyme disease becomes a nightmare)is so touching!

i suffer from lyme as well, i am 20 and got disabled by lyme.
i hope that one day lyme disease will be acknowledged as disease and properly treated.

thanks and blessings.

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Posted by Carol Crane
a resident of another community
on Aug 30, 2013 at 10:13 pm

I hve almost same story, saw doctors in Los Angelo, Holtorf medical Group.Thought it was mold and sold my home in Tahoe thinking I had mold . I was always sick there, came down with numbess, fever and could not move legs. Ended drinking to move and so far have 18 years of sobriety. Went into to study ortho for spine since my back was mess up. Doctors assume it was my back,Been threw ten surgerys, sold my home and finiance died unexplained in Tahoe. When I went to Physical Therapy Assistant School the teacher saw me on my baack to et threw class and they postpone surgery till after school. She said I could never do it. I did and so grateful. This disease as made me more compassionate and helpful

I hd so many spinal shots the third one cause so much pain and my back was on fire . Went to school and miss sking I did acpunture. My teacher said should drop out. I finish. If diagnose with lyme, I believe I would have never had back surery the third shot threw my spine into hypermobile and discs were mosing. Dodtor made mistake and had to fix surgery..If propery diagnose I would have never had this awful things happen in medical field.
Cme off antibiotic and predisone for sinus infection and felt like screw driver was going threw brain and head titled back. Went in to ask for DNR , doctor put me on muscles relaxers and klopin and I put myself on weeks of Zithromax, I got threw it. The doctors said brain tumor, MS or tape worm. MRI show nothing. I knew that nasty lyme was still there. Palo alto group threw me out.
I took cipro and knee froze up and took doctors 6 weeks for MRI saving in my head. Show torn meniscus with bad tear where joint locking, recently had surgery and left reactive arthritits . I use to dance and try I miss it so much. On antitbotics still and that has help.

That is why I want to use dance, it saved me and wanting to go on with this nasty disease. I beautiful dancer but too fatigue now. Hoping to raise awareness and have medical license, and medical professionals willing to help volunteer

I fight to work, sometimes throwing up and headaches. My work was close, now praying for something close by.
So went down to be treated for mold and found out it was lyme, all the co-infections. Ran out of money to do oral. Ended up emergency so many times from thyroid storm to unbelievable pain and fatigue. I know it affects our system, thyroid, adrenals, thick blood requiring heparin and we feel better.
Want to do awareness at Cheryl Burke Studio for education and awareness. I have some medical therapists and nurses wiling to help promote this. I am in fifth month of Zithromax and having hard time. Had knee surery that never got better. Mri show reactive arthrititis and western doctors refuse to treat with antibotics. Dr. Metzger started me on it and swelling went down. Everything in body auto-immune, Epstein barr to babesia, bartnella enrichal etc.

I want to try to promote dance awareness welling tickets where when you buy ticket you have to educated and pass brochure on. Want to bring lyme patients, some in wheel chairs so everyone gets to dance no mateer what . We are going to shine for one night and educate people and praying medical community listens. See patients going misdiagnose.
I can barely get out of bed, my thyroid is very hyper so crashing and trying to work. Some days I am in tears and going to AA meetings. 18 years off alchol use to help with back pain and numbess, could not move legs
Tired and will clean this up, thankyou. There is a group and I have beenreally educating people and therpists. doctors do not want to listen but therapist and nurses. do
Thankyou so much for being out there finally
Please call I want to help and maybe I can get help with this dance awareness thankyou

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Posted by Carol
a resident of Menlo Park: other
on Sep 1, 2013 at 8:29 am

Hi, wrote the other ay but never realize do to fatigue it was going on line. Wanted to clean up spelling, pretty fatigue but glad to see Association, first step for help
What I wanted to say , is why is the medical system allowing this. We all same story at least thirty doctors. Only wealthy population can get treatment which requires IV antibotics.
This disease is affecting a large portion of people and see it, MS populations where patient lived back east, where families are affected. See patients suffering from this and doctors are looking the other way. Why, Insurance is not helping us unless it is expensive insurance. By the time wwe get diagnose forty thousand dollars later we can not afford treatment. It is sad. Our country would rather treat HIV or hep c but why are we ignore.
This disease affects joints, blood coguation defect, arthritits of all kinds, cognitive abilities, auto-immune. Lets get help to treat problem and make treatment available to all. It would cost system less in long run.
All lyme patients do not know what is happening at first, fatigue and pain starts not to mention headaches.The doctor sys it is in your head and take something which makes us worse. It is on the raise and medical community is looking the other way. Unless you have money to see lyme doctors, or have good insurance, most of us are not cover What is up with that?
Been thrown out of doctors offices asking for iv antibotics. A doctor takes an oath to help not hurt. So hoping to educated and teach at a dance studio where my dancing has been affected.
Lets get help to everyone and glad you started this
People with diagnose MS, ALS and parkinson's should get ignex test run. Why doctors ignoring this? We are on our own and some of us ordering antibotic's threw internet. Why do doctors throw us out or say disease to complicated to treat.

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Posted by anne
a resident of another community
on Sep 1, 2013 at 2:47 pm

My friend has been affected and she went from this happy go lucky person and a skier, too we do not see each other anymore. She never feels good. I do not understand this disease but it seems to ruin people. One hears about it but never figure it hits close to home. Believe we have problem here in the Bay Area. Please lets get help for this and funding for people that are affected.

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Posted by Cindy
a resident of Menlo Park: Allied Arts/Stanford Park
on Sep 1, 2013 at 2:54 pm

HI everyone; FEW of us are getting together to write. We want answers to why people have to see thirty doctors. This disease did not hit me, but affected a family member and same story. Why is government not helping, why are they not checking blood banks, My friend got sick after blood transfusion. Weird cycts in glands to bleeding disorder. Right after that blood transfusion, she was never the same. Healthy before. It is our responsibility to help and not by pass people like we did with aids. This thing is bigger then aids.
Prayers and Blessing

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Posted by mayra
a resident of Atherton: West of Alameda
on Apr 1, 2014 at 12:34 am

i know who she is! very kind person.