(I hope) It’s Always Sunny in Philadelphia

So I pull off the New Jersey turnpike at exit 4, way down by Philadelphia, two and a half hours from home. Within minutes I am passing the new stadiums, The Home of The Eagles, the Phillie’s Citizen Bank Park, and the apparently nameless not-so-new arena where the (hated) Flyers skate. Slightly distracted, and with LMFAO’s “I’m Sexy and I Know It” blaring over my GPS, I totally missed the next turn. Damn. By the time the GPS Lady had recalculated ten minutes had past and she set me on a backtracking pot-hole riddled series of roads that wound through a series of old cemeteries, an odd collection of a half dozen groups of headstones intermixed with low brush and freeway overpasses. An ominous preamble to my Official Lyme Test.

I am in this predicament because of the fragility of the Lyme bacteria and New York State politics.

The Lyme bacteria, Borrelia, has been impossible to grow in a laboratory setting thereby making it very difficult to (a) find a cure and (b) provide a definitive test for everyone.  The standard method of diagnosing the disease is by conducting an ELISA test on a blood sample. Then, if that test is positive, a Western blot test is done. If that is also positive, doctors can diagnose Lyme disease. These tests measure the antibodies in your blood, which the body produces in response to the disease. Some people, however, don’t produce the antibodies, or not enough to show up on these tests. I am one of those people.

(I have had three separate ELISA tests and, because of the depth of my symptoms, two slightly un-authorized Western blots. In all cases the results have come back: NEGATIVE (no antibodies) or INCONCLUSIVE (some antibodies, but not enough to count).)

Well, as I mentioned in an earlier post, someone in Pennsylvania very recently figured out how to grow the Borrelia culture in a petrie dish. They are the only lab that has done this and they are making a killing, I presume. Doctors from all over the country are sending them samples of patient’s blood for testing. Doctors from every state, but New York. Dr. Morrison speculates it’s because New York wants to keep all possible revenue in-state. Awesome. My tax dollars aren’t enough, I guess.

In January I decided to go with God and take antibiotics on the presumption I had Lyme. As my chiropractor said, “if it smells like fish, it’s probably fish.” Ha. Well, a month of daily drips had little effect. In researching this after the treatment I have found that a month is not enough time, usually, to kill the damn bugs. In addition, and frustratingly, insurance companies won’t pay for drugs without a positive test result. And the drugs are not cheap.

Three months have passed and early last week I called the lab, told them my story — even directed them to this blog — offered to pay for the test myself, and asked if I could come to their office to take the test. Nope. It is not something a person can order for themselves. Weird. (It’s not like I’m buying opium flowers.) I need a Doctor from a state other than New York to order this test. So my lovely wife suggest I borrow a doctor in Connecticut (thank you Bryan Hooper) who promptly sent me a script which I subsequently lost resulting in a trip last Friday up to Connecticut to get another one. The Doctor’s office is coincidentally 3 miles from where I used to live in New Canaan, where I got bit over 10 years ago. Irony. I swear I wore an anti-tick outfit of boots with long pants and socks pulled up over my pant legs…

So today, Monday, I set out from my house in Westchester County and drove to Advanced Laboratory Services in Sharon Hill, PA. After navigating the cemeteries I made it to 501 Elmwood. It is one of those single story office complexes with non-descript dark mirrored glass windows and doors with company logos. 504 was some printing company. 503 a pilates studio. 502 a tech company (sounded tech-y, at least). At the very end, in the dusty corner of the complex, was 501, and there was absolutely nothing on the door except for the number. Weird.

And this is my salvation?

I fumbled through the address book on my iPhone and called the guy at te Lab that I had spoken to, Stu Traster. Good dude. And I was indeed in the right place. Within seconds he enthusiastically burst through the unmarked door and motioned me inside. It did not look like a lab in any way but more like an office building. People in cubicles on computers. Some on the phone. Some punching on keyboards. Some “working” on Facebook.

Stu directed me into a conference room, offered me a seat at a round table and said he be right back. He returned in about five minutes wearing a white lab coat and carrying a handful of vials and needles. He dumped them on the table next to a conference phone and some candy in a jar. I handed him the script and he proceeded to draw my blood. I don’t think it’s something he does every day because he had a difficult time getting a good flow. He apologized each time he had to manipulate the needle, twisting beneath my skin. It hurt a little but not more than my weekly acupuncture. I told Stu this and it made him feel better.

(There was a particularly awkward moment when a few colleagues entered the room for a meeting not realizing what was happening. A lady nearly put her pad of paper on the table until she saw Stu struggling with my vein. She turned white and ran for the door. I tried to break the tension by saying “Sorry! We’ll be done in a minute!”)

I asked Stu if many patients come here directly and he said no, only once in a while, adding that he likes to see the “faces behind the blood.”

I smiled.

When we finished I thanked him and told him I hope the results are positive.

He gave me an odd look. ”Positive?”

I responded. “I’ve seen fifty doctors and not one of them can tell me what’s wrong with me.”

He thought for a second, then, smiling, “well, in that case, we’ll do our best!”

Indeed.

—

So this culture grows in 10 days. If there’s nothing in 10 days then they put it in a long term growth panel for 2 months. So I should know, definitively, if I have Lyme in 10 days or 10 days and two months.

Good enough for me.

Swimming With Sharks

So no one else is in the water, just Caroline and I. No idea why, the beach was fairly crowded. The water, normally crystal clear, was a bit murky and choppy. And there was a red flag posted.

Caroline. always intrepid, went in first. I was temporarily content to do some yoga on the beach. (I was also slightly unnerved that no one else was swimming. It was bit like that scene from Jaws when the Mayor asks the Board Member who just put on sunscreen to swim with him family.) Anyway, she was frolicking about and it looked like fun so I said what the hell and joined her. The water was quite warm and it felt good on My Right Foot, but after 15-20 minutes I got a weird icky feeling we were being watched. I looked over at some coral beneath the surface and it started to move. Something large was swimming, slowly circling.

I was hoping that it was Jojo the dolphin who apparently swims happily with humans along the North shore of Turks and Caicos (Caroline had read about him at breakfast). It was large enough to be a dolphin but it just didn’t move like one. I said, pointing to the gray mass about 5 feet from us, “there’s something in the water.” Caroline, excited, looked out,”where?” I said, not at all convincingly, “maybe it’s Jojo?”

At that moment a wave crested and cleared and we could see clearly the dorsal fin of a 6 foot Caribbean reef shark. Caroline turned white and said, deadpanned, “that’s no dolphin.”

I haven’t moved that fast in 5 years. I actually beat Caroline to the shore. When I got there My Right Foot buckled and I went tumbling onto the sand but I didn’t care. I sat there, shivering with adrenaline, happy to be in one piece.

I guess I can move fast when I have to.

Maybe we should ask someone what a red flag means?

No.

No apples.

No tree nuts.

No tuna.

No dairy.

No gluten.

No sugar.

No caffeine.

No booze.

No fun.

The Hangover, Part 2

I had an IVIG last week for three days, five hours each day, which resulted in a massive category 5 hangover that has lasted for about a week. A hangover, by the way, without any of the preceding wink-at-each-other fun.

The purpose of the IVIG was, purportedly, to relieve me of some degenerative neurological symptoms. To retore my immune system. To cure me, temporarily. It turns out, however, the purpose of the IVIG was not any of these. It was actually a test.

During the administration of the IVIG the nurse, Christine San, said repeatedly that patients feel an immediate uptick. That the next morning people feel different, very different. That, for some, it is a miracle drug. She would ask me every morning how I felt, half expecting me to dance across the floor, do a spin, the moonwalk. I, of course, felt no different. Interesting.

Then there was my Doctor, Dr. Bronfin, the Neurologist who scheduled the test. I met her the following Wednesday, last Wednesday, a full five days after the IVIG. The purpose of this appointment was to make an assessment of the medicine’s effect. I told her I felt a bit stronger, that my left leg seemed more stable and that I had no problem tying my shoes and walked  with a bit more stability. I told her my speech was a tiny bit better and that I had a few less cramps. All true.

(What I didn’t tell her was that at the same time I was also on testosterone and growth hormones and also began a more regimented exercise program, all of which would have made a contribution to an increase in strength.)

Anyway, in the midst of this verbal spew, a seemingly endless slightly exaggerated list of my renewed strength, Dr. Bronfin was examining my left and right leg. She interrupted, “the IVIG has done absolutely nothing.”

“What?”

Dr. Bronfin is a no-nonsense Russian Doctor. I think she’s actually kinda brilliant. I feel like she’s on the front-end of her specialty. And when she said, definitively, the IVIG did absolutely nothing, I was shocked.

“What do you mean?”

“The IVIG. It did absolutely nothing.”

“You don’t think I’m any stronger?” I asked.

“No.”

An awkward silence.

“Um, so, is that bad?”

“No.”

Another awkward but slightly more optimistic silence.

“Why?…Not?”

“I was conducting a test,” she declared.

I looked perplexed.

“I wanted to see if you had a degenerative neurological disease.”

I looked even more perplexed.

“If you had a degenerative neurological disease, ALS or MS or CIDP, you would have gotten stronger, much stronger, with the IVIG. It would have lasted only a week or two, but you would have seen a big change.”

“Interesting,” I said.

“But there is absolutely no change,” she restated. “So you don’t have ALS or MS or CIDP.”

Another silence.

She wrote on her chart, stood up, moved some things around. She was wrapping up.

I didn’t say anything for a few minutes.

Then, ”so what do I have?”

“I have no idea,” she said.

Awesome.

She tucked my chart under her arm and then said, “let’s take a few more blood tests and see what we can find.”

“Ok,” I said.

“And… there’s no reason to do another IVIG,” she stated.

“No, I suppose not.”

And just like that, she left.

It looks like I need to take some more tests.

I hope they won’t give me a hangover.

Iceman mummy may hold earliest evidence of Lyme disease

Leap Day Itinerary

I certainly took advantage of the extra day.

7am Hepatik, Renalin, Aquavit drops

7:30am Magnesium infused nutrition shake (Plant Fusion Vanilla Bean flavor, avocado, peanut butter, coconut milk, ice)

8am Metro North train to NYC

9am buisness meeting with one espresso

10:30am appointment with Dr. Morrison (Lyme), including a PC push and testosterone shot

12:30pm appointment with Dr. Stefanik (chiropractor)

2pm lunch at Bar 6 on 6th Ave, egg white omlette with breakfast sausage and bacon

3pm appointment with Dr. Bronfin (neurologist)

5pm appointment with Dr. Pai (acupuncturist)

7pm dinner with my lovely bride at Zocalo in GCT (Enchiladas de Carne, plus a Don Julio on the rocks)

8pm Metro North train home with free margarita roadie, courtesy of our waiter (delicious)

9pm couch time with Caroline and our two dogs

10pm Hepatik, Renalin, Cerebretik drops, plus 2mg of LDN, plus an attempt at a self-administered human growth hormone subcutaneous injection (it fell on the floor and rolled under the stove and when I fished it out the needle was bent and there was muck on the plunger…)

10:30pm bedtime OUT COLD

The Blood of a Thousand Men

I woke up yesterday, Saturday, with a terrible, debilitating hangover. A swirling, pounding, don’t-open-your-eyes headache. A dead-man’s mouth, dry and crusted. A tongue the size of a small pillow. A sweat-soaked shirt that I had to peel off my body. Shivers. Shakes. Nausea. We’ve all been there, at least I have, many times before.

The only difference this time is that I didn’t drink any alcohol. None. Not for an entire week.

What I had been doing, for the previous three days, was an IVIG. It’s a curative serum for a number of maladies such as immune deficiencies (me), autoimmune diseases, and acute infections. The serum, most interestingly, is extracted from human blood. To be precise, the blood of a thousand humans. Damn.

(To be even more precise IVIG is the pooled plasma from a thousand humans.)

My neurologist, Dr. Ludmilla Bronfin, prescribed me this treatment. She suspects I have chronic inflammatory demyelinating polyneuropathy or CIDP (or my favorite spelling: chronic inflammatory demyelinating polyradiculoneuropathy, ha). It’s a slow degeneration of the myelin sheath (the fatty covering that insulates and protects nerve fibers) of the peripheral nerves. With CIDP immune cells, cells which normally protect the body from foreign infection, begin to incorrectly attack the nerves in the body instead. Replacing or repleting the immune cells with new or normal immune cells is the point of an IVIG.

Dr. Bronfin thinks I might have CIDP but she isn’t sure. It’s one of those diseases that’s not well understood (like Lyme…awesome). One of the things that helps mitigate CIDP symptoms, even cure them, is an IVIG. Ergo, the treatment.

So it’s a waiting game. If the symptoms get better then I might have CIDP and will do more IVIGs. If there’s no change then I continue the Lyme/gluten/metal poisoning treatment I am already doing simultaneously.

For now, I’d like to thank a thousand people for their polyvalent, IgG (immunoglobulin (antibody) G)s.

The Cane Club

Yesterday I walked down the semi-treacherous stairwell into the Subway 6 Station at 28th and Park. The initial descent isn’t too bad, there’s a railing on the right, but the bottom is an entirely different matter: no railings; slippery, metal steps; people rushing, up and down. I usually aim for the middle of the 10 foot wide step because there’s less interaction with the maddening commuters.

This time I carefully navigate down the four steps, two feet on each step, just to be sure. I successfully make the landing and there, at the bottom, is an old man. A spitting image of Blue from Old School. The guy is fumbling with some papers and coins and cash in his right hand, and in his left hand, a cane. As I shuffle towards him a Metro Card comes flying out of the paper-churning and onto the floor in front of me. I stop and pick it up, assuming it’s what he’s looking for.

As I hand him the ticket he looks mildly appreciative until he notices the cane in my left hand. Suddenly and unexpectedly he breaks into this big broad smile. It’s awesome. I smile too.

“Thank you, sir!” he says.

“No problem,” I respond. Then I raise my cane. “We gotta stick together.”

He laughed, loudly. And then raised his cane, in response.

This mutual recognition has been happening to me quite a bit the last month or two. I don’t know why. I’ll be sitting on the Subway and across the aisle is a man or woman with a cane and they give me a little nod and then a raise their cane. I return the favor. It has even happened on the street a few times, as we pass each other, walking. A nod. A smile.

A shared struggle, appreciated.

A piece of art (canes and gasoline hoses) I made 10 years ago. 7 years before I starting walking with a cane.

Park Avenue Hazing

I am rushing from Dr. Morrison’s office at 18th and 5th Ave to the 6 Subway entrance at 22nd and Park and it’s raining.

Photo I took of Park Ave grate, sliced, re-ordered

The last time I rushed from this location to that location and it was raining I slipped on one of the air vent grates that run up and down Lexington and Park Aves, parallel with the train. I was carrying a bag full of glass detox/vitamin drop bottles and a giant plastic tub of protein powder and I was trying to catch a train. Some dudes in suits were in a similar hurry but coming towards me in the opposite direction and they forced me to veer off the cement part of the sidewalk and onto the metal grate and, well, My Right Foot lost its grip. Fwoop. Straight out in front of my body. The bag I was carrying sailed out of my right hand and into the street. My body slammed down hard on my right ass. My left knuckles hit hard too, wrapped tightly around the handle of my cane. The glass bottles clanked loudly on the asphalt, I thought they shattered, and the tub rolled a half-block down the street. I sat there, embarrassed. The suited gentlemen had passed and were probably laughing or oblivious or whatever. And I still sat there, for at least a minute.

Eventually a nice French couple crossed Park Ave ran up to me and helped me up. They picked up all my stuff (the glass did not break) and brushed some dirt or mud or something off my back. Whew. I thanked them, assured them I was ok, and then continued on to the train.

Anyway, last night I was (smartly) moving more cautiously along Park Ave and was mid-block when I decided to cross the street. It’s normally a safe bet, as safe, if not safer, than crossing at the end of the block. When the traffic stops at the signals it typically leaves busy Park Ave in a surreal state of temporary inertia. Not this time. I got halfway across the street when and a cab turned left and headed straight for me. I stopped mid-cross, protected by a planter (there are thousands of them on Park Ave) and waited. For some reason, instead of flying past me, he stopped. I saw that his light was ON and I assumed he was wondering if a guy hobbling with a cane needed a lift. I didn’t, of course, because I was a half-block from the subway, but he didn’t know that.

I waved him on. ”No thanks” I yelled (as if he could hear me).

He flashed his lights.

I wasn’t quite sure what a light flash meant in this instance.

He just sat there. For what seemed like a minute.

I made the assumption he was telling me to cross in front of him so I did so, as fast as I could. After passing him I turned and waved a hearty thank you. It was a nice thing for him to do, although it would have been much less awkward if he simply drove past and I crossed behind him. Anyway. It’s New York. Youneverknow.

Then, after passing in front of him, he pulled up alongside me and rolled down the window. At this point I assumed he was going to say something nice like “take care of yourself” or “have a good night” or maybe even offer me a free ride, so I stopped, turned back and walked up to the open window.

He leaned over and yelled “stay out of the fucking street!”

He then took off, speeding gleefully away only to slam on his breaks at the red light at the end of the street. Odd. I stood there in the middle of the right lane, transfixed, watched the light turn green and then this cab move forward very slowly, sheepishly. Weird. A manic-depressive cab driver, I guess.

Now, of course, as I stood there traffic from down street barreled towards me with horns blazing and I turned and rushed to the sidewalk. Sheesh.

Only in New York.

A Perfect Storm

I had my big appointment with Dr. Morrison a few days ago. It was amazing. He was the first doctor who found tangible diagnostic problems.

Here’s what I learned.

1. I have a gluten intolerance, probably have my entire life, ignorance of which (i.e. eating wheat) has stressed my immune system. It’s one of the reasons I have such bad allergies (to food, in particular) and in general why I am not as healthy as I should be. This cannot, however, cause my neurological problems.
2. I have toxic levels of mercury and lead in my tissues. This is shocking to me. 5 years of top doctors always suspecting this but never being able to confirm. It was a special test I did. This can definitely cause what’s happening to my leg. I have this, probably, because of the pressure gluten has put on my immune system.
3. He confirmed that I was bit by a tic 5-10 years ago because I have a confirmed non-Lyme non-threatening tic born bacteria (phagocytophila). He could not, however, confirm I have Lyme. He suspects I do. He’s 80% certain. Good enough for me.

Lyme on top of gluten intolerance and heavy metal poisoning is, in his words, a “perfect storm.”

Indeed.