Sarah Olson: Recovery with IV Rocephin*)!*)!!

[CaliforniaLyme]

Sarah Olson: My Story (to be upddated and continued when I have time)
********************************

Ten years ago my husband Aram and I bought a new house at the base of Nisene Marks State Park, Aptos, CA. It was a bargain, an old 1940s country cottage type hose, two stories, fallen into disrepair. There had been a fire in the old laundry room and the walls were still black with soot. The livingroom had bright boudoir red carpet which was streaked with bblack soot as well. All the downstairs doors were swollen open from the rain. Transients had camped in the downstairs, including raccoons, rats and skunks. Moisture was everywhere, black mold in the pantry- and rat feces everywhere. What a gem!

And it was!

It was one of the most beautiful houses we had ever seen, with French windows on a windowseat and built-in bookshelves beneath the grime- with a huge brick fireplace and 4 bedrooms, 2 up two down.

It was on a 4 parcel lot in an ara with very high prices, yet because of the state of the house it was cheaper than just the land would be. The land was oak woodland, stinging nettles everywhere, poison oak traipsing here and there- and blackberry brambles- and weeds- and a stand of box elders down by the creek.
It was the last house at the edge of the wild going up the creek, yet the way it was situated was that it was surrounded on all sides by a regular neighborhood, 5 blocks from the beach, close to the best restuarants in Aptos. Aptos, a small suburb in Santa Cruz, California, made it into Fortunes 10 Best Places to Live in the USA List. Little did they know!

But this was before the fateful year- 2003- which was to change the history of Aptos.

Nisene Marks State Park was known pre-2003 as the epicenter of the San Andreas fault, responsible for The Big One which shook the Bay Area in 1989. We live close, have hiked there, to the actual fault- it used to get so many people- andmess up the trail so much- that the rangers used to move the sign here and there in the forest, so one weeks San Andreas would be next weeks meadow...

Anyway, I loved that house from the first moment I set eyes on it, grime, rats, and all. It was a robins egg blue country cottage set in a lovely mess of foilage all around it, wild green, room for cats. It was a magical house, the oldest house in the neighborhood, the only pre-1970's house in a neighborhood of 1970s houses. Little Lord Fauntleroy set among the Brady Bunch. After we bought it, I found that our house is famous in a quiet way. If I begin describing where I live to people in Aptos, longtime residents will instantly say, "I LOVE that house!" or "I used to dream about that house."

ANd so did I. From the moment we toured it with our realtor I begged my husband to make an offer, and we did- and it was taken. We made a back-up offer anyway. I began to dream that every night, I was standing in the kitchen, reaching out my hand in the darkness. It was ours.

I told my husband it would be ours. He laughed at me.

But one day, we got a call from our realtor. The man who was going to buy it was a contractor who was going to tear down the house and build 4 houses there and sell them. His plans had fallen through. The house was ours. There were 2 back-up offers behind us.

So I have to go pick up my older daughter Evan form play practice now- she is an OOmpa Loompa in Willa Wonka and the Chocolate Factory- Charlie rather- and take her to horseback after- and then go trick-or-treating- of course!!!

But this house was the beginning of me getting Lyme- and little did I know- but in that house- in the upstairs bedroom that my daughter sleeps in nightly, byut a 16 year old girl named Wendy Ann Hunter died
of meniingitis and "peripheral vascular collapse", the latter of which I and my daughter were to get after we had moved into that house...

Anyway, more later,
Best wishes,
Sarah

[CaliforniaLyme]

The very first time we walked into the house the realtor said "I wouldn't sit there." because on the bright red couch sitting on the bright red carpet there were dozens of tiny creatures. Dark red, tiny, tiny, little creatures. They were nymphal deer ticks. No, I'm not joking. But that wasn't when I got Lymed. The house had all its doors swollen open, would not close, and raccoons, skunks, rats, lived in the house.

So the weekend before the house was supposed to close we got a call from Bank of America saying they could not approve the loan because they had gone out and looked at the house and the roof was so bad they couldn't put a loan on it without a new roof. Luckily, my husband Aram had many friends, one of whom was a roofer named Beau. So he called Beau and Beau- and Josh and Johnny, an accountant and a bouncer, came over that weekend and they and Aram roofed the house themselves. Beau showed them how. So the hosue was ours, with last second scariness. There were 3 back-up offers behind us by then!!! It was a real deal. In this area a house with that much land and bedrooms would have been $450,000 at the time- even. This was just $200,00!!! (And now it's worth a million just for the land!)

ANYWAY, we got the hosue, wich was a wreck, adn the grounds, which were overgrown with blackberry bushes, stinging nettles, and oak trees everywhere except down by the creek where the box elders stood.

My husband began working on the house, which was rat infested. Our two cats, Christian & Latte, had work cut out for them. We couldn't afford to live anywhere else so we had to live there while we fixed it up. The cleaning took weeks, one room at a time. Furniture had been left- and some rooms had the roofs fallen in. We slept with lights on and the rat traps went off all night long- the rats would scream and my husband would vanish to kill them with a shovel. ugh. Our cats were afraid, the rats were so big!!! I was scared of them.

We shaved down the doors so they would close. We took out whole walls and floors. We vanquished
bad smells, rot, mold, rat droppings. lead paint... the whore red carpet... I washed the fireplace in bottles of Coca cola- gets rid of soot stains- and slowly a gorgeous house began to emerge- and what energy we both had- throwing ourselves into each new project- oh the day- we got silver-white carpet for the livingroom and dining room - and the walls were cream colored- and the whole place looked like a fairytale (silver white carpet with a toddler, 2 cats? ah, what naivete! It lasted a year!). Oh- except our daughters room- didn't have white carpet- she wanted purple carpet and bubblegum pink walls (ouch, but she loved it).

And then I decided to tackle the grounds. My husband was working on shoring up the foundation with cement pilings because the corner of the house had fallen in the earthquake in 89.

I decided to clear the land, 4 parcel lots of brush, at the bottom of Nisene Marks State Park, Aptos, California. I went out with no clue about ticks. In the year 2003, the Journal of Medical Entomology would publish a report of state parks in Santa CRuz county, showing that in all of California Nisene Marks State Park was the very highest of all, with 17.8% in adult ticks, and nymphal ones possibly 4 times higher. But I didn't know that. Nobody knew.

I cleared the land, went out for a whole week and a half, every day, tore up blackberry brambles, carefully plucked stinging nettles, cleared cleared cleared weeds weeds weeds- and on about day 6 I was taking a shower in the working bathroom when I came upon, with soap, 3 strange bulbous things attached in the crevice of my buttocks. I had not even taken a shower the night before, had fallen into bed exhausted
with having worked all day outside clearing brush. I popped one and drew my hand up to see blood all over my hand, a lot of blood, a real streak of it, like a fat mosquitos worth. Another I managed to get somewhat out whole and looked at it- and it was one of those strange red creatures from the couch that had been inside... A nymphal deer tick, but fattened. I squashed the third quickly, grossed out- and scrubbed myself.

I told my husband about it, how gross it was. Ew! EEeeew!!!

Never thought about it after that until later that week, 3 days or so later when I was dressing and my husband said, "Something's on your bottom- you have a rash!"

I needed a mirror to see it.

Right there where those damn things had bitten me, on the left side, there it was, a big red rash, about 4 inches wide. It was bigger the next day. Embarassing. Yuck.

How embarassing. Yuck!!! Ew.

That was what I thought. A tick rash. Ew.

Then, I didn't know anything about Lyme disease. I never thought of it. Had never even heard of it.

The rash was bright red. And it didn't go away.

[CaliforniaLyme]

The very first symptom was that rash. When my husband told me about it, and I peered into the mirror to see it, I was fine. I wasn't worried. Just grossed out. It was bright red, and itchy- and it grew and stayed, not an EM but an ECM, Erethyma Chronicum Migrans. It would stay for 7, 8 months... It's center was one of those three tick bites- the other two had no rashes. But it began that week, I remember walking with the strolelr down the beach and suddenly, I felt so tired. I had never, ever felt so tired in my life with the exception of having malaria in India, during the recovery from that. Just tired. I barely was able to walk home, I felt almost narcoleptic with the urge to sleep.

My bowels had become loose before that, I had some kind of gastrointestinal flu. I was sure it would go away soon. I thought maybe I was tired because of that.

I turned around and strollerd home and slept the rest of the day. I was fine the next day and it wasn't until two or three days after that when I was walking down to the beach again and something was making my neck and back of head ache with pressure. And the pressure feeling went down to a pain in my left shoulder and arm. And walking I suddenly hit with a feeling that it was spreading, whatever was in me, through my body.
I had the rash on my buttocks, but did not connect it to what was happening. But I had the sudden sensation that something was IN me, somethign was SPREADING through me. It scared me.

But the intestinal flu did not go away.

It was days later that I suddenly, about a week and a half after tick bite, had a 104 fever for 4 days. I refused to go to the hospital, because I believed in healing "naturally" at this time.

Then my vision blurred, suddenly, when I was walking, and another day my hearing dimmed. My guts had not returned to normal and I was running a constant fever all the time.

I went to my local primary care physician, told him about the tick bites and showed him my rash.

"Doc H, blah blah BLAH!" I said. showing him the rash.

And he smiled and said he would test me for Lyme disease, it had a very reliable blood test.

I got a phone call.

'BINGO!" said the voice.

"Hello?" I said, not sure who it was.

"Your test for Lyme, your ELISA, came back positive!" said Dr. H. "I'm sending you to a Rheumatologist, Dr. M, for treatment."

To this day, I am the only person I know who has ever gotten a positive Lyme ELISA from UNILAB.

(to be continued)

[CaliforniaLyme]

So I was sent to Dr.M, MD, of Santa Cruz.

He seconded my PCPs diagnosis of Lyme disease. He gave me a prescription for 30 days of Doxycyline.
He told me, when I described symptoms I was having, "Lyme can do ANYTHING."

Then he went on a long vacation.

I had never heard of Herxing. I didn't know anything.

All I knew was that after I started the Doxy, I got WORSE instead of better. I thought I was having an allergic reaction and almost stopepd taking it. I called his office frantically but he was on vacation. he didn't reply, nor did his answering service.

But my bowels cleared up. I stopped having 104 fevers. And within those 30 days, I was almost completely well. I didn't have that pressure in the back of my head and neck. My shoulder and arm pain went away. I felt almost compeltely normal again. Almost.

I went for my follow-up appointment and asked for just one more week of Doxy. I said I was almost well but that I was still unusually tired and didn't feel QUITE normal yet- although CLOSE.

He said, "You don't have Lyme disease anymore."

I said, "I don't?"

He said, "You have Post Lyme Syndrome, that's anything leftover after Lyme treatment."

I said, "But I'm not WELL yet."

He said, "You just have to learn to live with it. More antibiotics are too dangerous."

So I said, "Oh. Okay."

I didn't know any better. I thought there was just this tiredness, and maybe, just maybe, it would go away.

[CaliforniaLyme]

But I was wrong!

[CaliforniaLyme]

Instead, I began to get worse again. The blurriness in my eyes came back. The dimming of my ears. The pressure and pain in my head and neck and shoulder and chest. And more came. Pain in my knees. Piercing, sharp pains like knives. Pains in my fingers, flashing through. Pains in my ankles, quicksilver then gone. And the waking- I began to wake every night at exactly the same time and be unable to fall back asleep again. I can't remember what time it was now but let's say 2:34. It was exactly the same every night, the same minute. Boom. I was up. Awake.

And my PCP quoted the Rheumatologist. Antibiotics were to dangerous. I had POst Lyme Syndrome. I just had to learn to live with it.

I didn't have the INternet. I didn't know anything else.

SO I began to live every day in pain, and more pain, until every day had pain. Until every day had pain all day long. And then the pain began to be worse.

Days and then weeks and then months began to pass-

I haven't drunk or taken a drug since April 16, 1990, and I didn't start then. I knew I couldn't take just one pain pill. I'm not made that way. So I took nothing, not even aspirin.

I waited for it to go away or for me to learn to live with it. I prayed a lot.

I became very spiritual.

Life became horrid.

My hands began to swell up. I developed a malar rash, bright red, across my face. I began to have a splotchy rash spread out all over my body. I had a constant fever of 101. I began to have attacks of severe nausea if I smelled anything strong, llike perfume or paint or cleansers. If I got near anything like that, I would get pale, clammy, faint and have to throw up. I would run to the shower and vomit convulsively, shuddering, clammy, shaking, my head agonizing.

I began to get sick at Safeway. Somethign baout the flourescent lights triggered my feelings of sickness.
I would literally have to leave. It made me sick.

One day, I was standing in my kitchen, when suddenly I noticed urine all over my clothes and legs. I had not
felt it coming, just the wetness. Incontinence. It was horrible. I was afraid it would happen again, afraid to leave the house.

Every day I was so tired. SO fatigued.

THEN, one day, my husband was out in the yard doing yardwork and he came in the house with a funny look on his face.

"Sarah," he said, "Sarah, get it off me."

He lifted up his shirt and there was a tick on him, up under his arm. He had done a tick check and found it. It was attached. The next day he felt sick. He went to our PCP. He got 30 days of Doxycycline and in the next few weeks he had horrible flashes of joint pain (which had taken me months to develop). At the end
of that month, he said he was 100% well. He was fine again.

But from that time on, we never once again had sex, for the next 3 years.

And then forever.

[CaliforniaLyme]

And life went on-

[CaliforniaLyme]

But I'm jumping ahead.

MOnths after I had been diagnsoed Post_lyme Syndrome, I was getting very depressed. There seemed to be no end to the strange new symptoms appearing every day, every week. I was progressively getting worse, not staying static. I was scared.

It was coming up on a year after I got sick that my doctor changed his mind. It was clear I was getting sicker and he had been referring me out for various specialists all the time. He said, "I know Dr. M said no more antibiotics, but I've thought about it and I'm okay with you having more orals."

He wrote me a script of Doxycycline. And you know what? I didn't get worse and then better like before. Nothing happened. Nothing at all. (Except sunburns). So I thought that Dr. M seemed to be right- there was no treatment for Post Lyme Syndrome.

A friend of mine who was a nurse called me on the phone one day. She was one of my old running partners. We used to run 3 times a week on WestCliff and around the WestSide, miles and miles.

I hadn't run since I got sick. I couldn't. I was too tired. Too much pain.

She had been taking a patient to x-ray, leafing through her file when she came upon a phrase, "recovered from chronic Lyme disease." She excitedly asked the patient- was this Post Lyme Syndrome? Yes! So she got the name of the doctor this woman had seen ten whole years before, a Dr. Raphael Stricker of San Francisco.

She called me, she told me, I wrote it down next to my phone. But I didn't try to call San Francisco for information for his phone number. Ten years ago! And who knew if he was still treating. I just felt hopeless. BESIDES, that week I was being driven up to SF to hear a lecture being put on that another
friend had told me about- a lecture by Dr. Anthony Lionetti brought out by Karen Forschner of the LDF.
I thought if there were Lyme doctors, I would find one there- but I did not believe it was true. My doctor
had TOLD me that Post Lyme Syndrome was untreatable and we had tried again with Doxy to no avail.
You just had to live with it.

Then my husband drove me to the lecture. I was so groggy and fatigued- it was hard to stay awake.
In fact, I fell asleep several times while Dr. Lionetti spoke.

But amazing things had begun to happen before he spoke.

The person sitting to my left was a woman named Lorie Goudie. Before the lecture started we introduced ourselves and much to my astonishment I discovered she lived in Aptos, 7 blocks away from me!! She had Post Lyme Syndrome, which she called Chronic Lyme, and she was almost well! Her pain was gone. Her fatigue was gone. She told me about two other TBDs I should know about, too, Babesiosis and Ehrlichiosis. Ehrlichiosis I had heard of- my PCP had been so proud of himself for testing me for it because I had come back positive for HME.

Everyone in the audience was introducing themselves to their neighbors- and she was literally my neighbor. We decided then and there to start a support group. It seemed like fate.

Then I leaned forward. There was a man in a 3 piece suit in front of me, animated and intelligent looking.

"I'm Sarah Weiss." I said.

"Doctor X." he said.

And I was overcome. I almost started crying. I blabbered out how I had heard of him just two days before from my friend Sheila and how his name was by my phone and I asked him tremulously, "Would you treat me? Please?"

"Of course I will!" he said.
And he gave me his card.

[CaliforniaLyme]

There is a man named Jim. He lived in Nisene Marks State Park, Aptos, CA,where I live, the #1 hotspot for Lyme in all of CA. He lived there for over 20 YEARS. But this was before that was published in 2003. He had a positive ELISA, positive Western Blot and a positive LP, a spinal tap.

He was due to start Iv antibiotics on a Friday.

Thursday night his doctor called him.

"Jim." she said, "I'm sorry but I can't treat you. I've thought long and hard on it and you must have false positives- there just isn't Lyme disease in California." She told him she would not see him again, "Goodbye!"

At the time he had general non-specific symptoms.

He went on to get diagnosed MS.

He went on after THAT, because he was a smart guy, to find Dr. X, my doctor, and get IV antibiotics and get completely well. Bless him.

[CaliforniaLyme]

The worst doctor I got referred to in that year of getting worse was Dr. R, Rheumatologist in Santa Cruz, California. Why was she so bad? Just remembering makes me feel hate.

My doctor, after I had been diagnsoed Lyme and then Post-Lyme with no further recommendaiton for treatment, decided to send me other places. The first palce he sent me after that was a psychiatrist, who decided I didn't need one thank god. The second place he sent me was an ID doctor who treated me awfully and who is now head of our local hospital. The THIRD doctor he sent me too, I believe in a sincere effort to get me help, was ANOTHER Rheumatologist, a woman, Dr. R.

She was very nice and she was Indian. She shared a name with a famous Indian poet. I lived in India when I was little and am prejudiced toward people of Indian ancestry becasue of it. Anyway, I liked her. She was sympathetic. She did a full physical and diagnosed me fibromyalgia. I explained my history and she kept acting like she didn't HEAR what I was saying. It was very strange.

I went to see her every so often. She told me to exercise. She told me it was clear that I had a "progressive multi-system neurological disease triggere dby Post-Lyme Syndrome."

I asked her if she meant ALS, MS or Parkinsons.

She said it could be any one of those things but was taking time to clearly define itself.

I begged for further treatment. By this time I had heard of IV treatment from somewhere. So I asked her for it. IV treatment for Lyme disease.

She whispered to me, nicely, furtively, although we were alone in her office. I wish I was kidding. I don't know if she thought I might have brought a tape recorder as some patients do or if she was just paranoid.

"Sarah, I know you have Lyme disease, but I can't treat you."

I said, "You mean you won't."

"That's right."

So it's funny, because the other doctors at times had been rude in intimating they thought that anyone who didn't recover from Lyme disease in 30 days of Doxy might have a mental problem, espeically if years and years earlier they had been held up at gunpoint (!!) BUT she KNEW. SHE KNEW. And I hated her for it. I still have to pray for her whenever I hear her name, because I don't believe in hating people.

Over the years, as a support gorup facilitator, I hear stories from pepole who see her.

I remmeber my first appointment after I found Dr. Stricker. When I told her about it, she said gleefully, almost girlisghly, "Oh Sarah- I am SO glad you are pursuing that! I wish I could have done it for you."

Yeah, too bad we had to take out $50,000 cash from a second mortgage instead of going through insurance like we would have if she had backed us. Yeah, just too bad for any other folks she saw who didn't have $50,000 to take out.

But over the years I have heard from her Lyme patients voer and over again similar stories, "It was weird, when I told her I started seeing a Lyme doctor she said, 'Keep pursuing that- I'm happy for you!" yet diagnosed people with, inevitably, at the least, fibromyalgia. In one case she had even dropped hints that she had heard tell there were whacko Lyme doctors in San Francisco... and that that patient should htink about finding one...

Later, when I got copies of her notes, one made me furious. It said, at maybe my third appointment with her, quote: "Cognition remarkably altered."

I udnerstand the idiots who don't know any better, but she, to this day, KNOWS. How does she go to bed and wake up and go to work, KNOWING that she lets patients decline who otherwise who do well?

I ended up going into dementia, a thing I wouldn't wish on anyone, even her, with her horrible, calm notation- "Cognition remarkably altered."