Amy Tan on her Lyme Disease

http://www.amytan.net/LymeDisease.aspx
Amy Tan on Lyme Disease

I have late-stage neuroborreliosis. I have had this disease since 1999.

My case is in many ways typical. Like many, I had little awareness of Lyme disease, for I did not live in what was considered the tick-infested hotbeds on the East Coast. I am a Californian -that’s where I file my taxes- and I live among the hills of San Francisco with its tick-free, concrete sidewalks. For a good long while it did not seem significant that I also have a home in New York, that I weekend in the country, and my main form of exercise is hiking. In addition to trekking in the woodlands of Mendocino, Sonoma, and Santa Cruz counties in California, I have also sojourned to leafy spots in Connecticut and upstate New York. I once loved to sit in the tall grass next to the river, and lean my back against a shady oak tree.

I passed off my early symptoms -a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder- as the unpleasant aftermath of too much airplane travel. I was often tired and jittery, but that, I reasoned, was the consequence of an active and exciting life. Who was I to complain? I had a wonderful life, a great husband, lovely homes, a successful career. I was rarely sick and went to the doctor only for my annual checkup. Even when I came down with the fever, aches and pains of the "flu" earlier in the summer, I had managed to beat it back without developing any of the respiratory sequelae. What a great immune system I had!...(more@link)

necessary to tell the public? Or the Congress?

Remember that Pretzel incident? From what Amy Tan says she was having all kinds of weird hallucinations and was striking out at people.

I saw the Bush/Lyme disease post...but didn't pay it much attention to see that he had it for a year.

he's WAAAY deep in neuroborreliosis, like end of life stage.

one article that said he had the bull's eye rash. I would think any doctor that sees that would start antibiotics right awayl.

When they saw the rash they treated it. It's just that he never told the public and it just came out now, a year later.

nevermind.

(Maybe I should stop tuning out whenever I hear his name on the radio or T.V.)

It came out now, a year later, because he had his annual physical and the info was on the report.

It should be required reading for all physicians in every state. It's only a matter of time before a case pops up in Montana, too.

I was "lucky" when I had it. I had pulled off the tick, developed the characteristic "bull's eye" rash, and spiked a temperature to 104. I got rapid and appropriate treatment, high doses of antibiotics for 3 weeks.

Personaly, I think at least the Western Blot should be required as routine patient screening, especially in New England, but certainly wherever ixodes scapularis and ixodes damini like to live.

Most people will never see the tick. They're pretty small and drop off when engorged. Unlucky people will never have the rash.

Untreated Lyme can be devastating. Screening really needs to be expanded.

and was treated immediately with an appropriate antibiotic. I never saw the tick, and never got ill in any other way, so I was very lucky that I also recognized the rash and got to the doc before it faded or got worse. Amazingly, my Western Blot came back negative -- the doc treated me anyway, saying I had a textbook Lyme bullseye rash, and he wasn't taking any chances. Bless his little heart.

I am curious

good read and scary too

insurance, like me. K & R

There must be more research into this devastating disease.

He mainly works in the Canadian Arctic, but teaches at City University of New York. Unfortunately they didn't catch it soon enough, and he ended up with severe physical aftereffects that may put an end to his field work.

Rash, dementia, extended symptoms?

One of the best vets in N. California took forever to figure out what was wrong with my dog.

Lyme is one slippery disease.

KnR

I would assume the rash appears right away from the bite, not sure about that though.

the doctor.

I doubt it would take months to see a rash.

One sign of Lyme disease is a rash, which may appear 3 to 30 days after a tick bite.
http://familydoctor.org/online/famdocen/home/common/infections/common/bacterial/257.html

Wikipedia said incubation period is 1-2 weeks but can be shorter or much longer.

She says she was uanble to write for a very long time because of the "brain fog" the disease caused.

If abrilliant person like Tan couldn't think clearly and suffered from hallucinations, mental confusion, and anxiety attacks from the disease, can you imagine how it could affect a simpleton like Bush? The Republicans gave us a president whit Alzheimer's and one with Lyme. Republicans seem to think that actually having a functional brain is just not a requirement for the job.

turned into MS. The brain lesions and the neuropathy made it so she woke up one morning and couldn't walk. She takes antibiotics like tetracycline on a monthly schedule. I believe it is a source of Multiple Sclerosis.

legions on the brain (lyme) vs. legions on the spinal cord (ms). interesting. I wish I knew more about the body. :(

by the time they figured it out and started treatment, she was pretty bad off and died a yr later. Really really really pissed me off, let me tell you.

than we were finally told he has had it.

She has gone to highly regarded medical clinics/physicians in Phillie, D.C., and several other states. She was told she had fibro-myalgia and several doctors blew her off as a hypochondriac - one female doctor was particularly nasty. Finally my dtr. took herself in for the kind of massive thorough testing which the wealthy routinely get on an annual basis at places like the Mayo Clinic. The tests just came back last week and revealed not only the 2 strains of Lyme (at least one probably going back to her undergraduate Army ROTC summer training program), but also a whole host of related health problems. She is on massive, painful injections of antibiotics and a host of other expensive drugs. Even though she has what would be considered a good health insurance program, she pays 20 percent of her RXs, and that meant she paid $200 for one month supply of 1 prescription alone. She has had to pay $2,000 of her own money so far. But the very worst thing is that she has felt like crap for 15 years, when her doctors should have and could have ordered the right test and spared her all of that. I don't know how she has managed to work at her very stressful and physically demanding job all these years. At least now she can look forward to regaining her health - hopefully it will only take six months to get most of her medical condition under control.

Don't let the medical establishment bullshit you. Do your own research of symptomology on the web and demand appropriate testing.

And by the way, she and I were amazed to learn that Lyme disease can be a sexually transmitted disease. Yet another reason it should be tested for regularly.

I bought her book, The Opposite Of Fate, for my girlfriend for Christmas 2005...

After it initially manifested itself as meningitis, I took the round of antibiotics they recommend and have had no other symptoms. I guess I've been luckier than some.

Did you get it in the woods in Missouri?

uppity! Amazing how the best doctors can overlook something as known as "Lyme Disease".

I live in upstate New York and there seem to be more than a few people around here with Lyme's.

Poor Sweetheart Amy Tan..I'm glad she finally got the proper diagnoses.

'superior' health, I wonder what else they're hiding?

They had to travel to Illinois (grandparents lived there) to even get tested since it is known that Lyme "doesn't occur in AK". Another friend had to go from WA to CA to get tested/treated for the same reason. It is a nasty thing to have, tests don't always show the right result, treatment can be non-working for a long time. The classic bullseye rash doesn't always show up either. As a health care provider, I cannot tell people to lie, but sometimes this is what it takes to get tested and/or treated.

They're both in elementary school. One has had it for two years, the other's blood test was positive last month. This is bizarre, to say the least. But my sister and her family go camping in what is known to be a hotspot in Canada, so presumably they were both infected there, and the younger child got bit quite some time after the first. Neither had the classic bullseye rash.

The medical profession in Canada has adopted the same stance as in the US (although in the US it is a result of pressure from insurers facing long medical and disability claims and the like, and this is far less of a factor here). My sister travelled to the other end of the country to have the first child examined by a doctor who recognizes and treats Lyme ... and who is currently facing being struck from the rolls of the college of physicians because of this.

At one point she was at a world-famous children's hospital here, where the child was to be seen and tested by some new specialist, and when she mentioned Lyme, the nurse's file snapped shut and she walked out. My sister subsequently learned that the next step in the policy there was a report to children's aid and an investigation for Munchausen by proxy if she did not sign a statement recanting her belief that the child had Lyme.

Treatment for the first child was thus delayed, interrupted, and overall only given because my sister made a career of getting it, and only considered in the first place because my sister had done the research herself after months of all the assorted strange symptoms, and suggestions that the child hated school or was being bullied and was therefore inventing things like joint pain. At age 7. (It turned out she also has bartonnella, cat-scratch fever, one of the common accompanying infections, and she has been getting treatment for that.) Then a couple of new doctors arrived on the scene, recent immigrant residents who didn't seem to have been given the North American party line on Lyme in time, and both kids are being treated, and the older one is finally recovering.

One hates to think how widespread the disease might actually be.

I can see being skeptical, but that is just too much. I'm glad that they are getting treatment and hope they recover without longterm damage

They do seem to be doing well. Fortunately, both are gifted, and they have a teacher who has expertise in gifted kids, and a mother who's no dummy and not backward about being forward, so they're excelling at school despite all the time missed.

My sister's assessment is that Bush is in end stage, as the cause of his rising (declining?) dumbness. She is also firmly convinced that the spread of Lyme is due to biowarfare research ... and I just reserve judgment on such things.

I assume we've all seen this:

I was up in the Eureka area, and out in the woods. The tick bit me on the neck, and my friends removed it. Fortunately, I had no other problems.

Or at least I don't think I had any problems. There are lots of warnings about Lyme disease here, as well as warnings about getting the Plague from rodents. Other exciting diseases are things like West Nile Virus, and Valley Fever. Maybe we are just more aware of this things...?

Her problems were Lyme's.

Doctors, including leading specialists, said "No, you live in California - the tick doesn't live here" She found it hard to get tested.

Took her dogs in for routine checkups. The vet said to her - "We are running Lyme tests on dogs for any owners who want us to. THe Bay area is suffering a contagion of Lyme's!"

She said "Sure Go Ahead. Test 'em"

WIth that information she went back to one of the specialists and finally got the verdict - she had Lyme's.

only substitute the word Lyme with the word Lupus, and you have my horror story and shitty immune system.

I just realized after reading through this thread, I actually had lupus in my mind. They ARE similar. My heart goes out to you lala.