Saturday, April 27, 2013


One month off my Lyme meds, and my labs show low thyroid function, low adrenal function, and low female hormones. I had follow-up tests this week, to see if my pituitary (a gland at the base of the brain, that's like the leader of the hormone big band) is working correctly and if I have enough cholesterol to even make the hormones I need.

The good news from my appointment yesterday is my pituitary does not have a tumor, and it is not in any other kind of trouble. My pituitary is in fact very energetic! In Dr. Ross' words, it's  "screaming" at my thyroid, ovaries, and adrenal glands to make the hormones my body needs.

So why aren't my nice little glands doing what they should?

Cholesterol isn't holding them back. My cholesterol, much to my surprise, is high. Good high. HDL/LDL ratio as it should be, but the numbers are high! How did this happen, while I was weighing all of 112 pounds due to Cholestyramine, the horrible liver medication I was on?

Well, to compensate for Cholestyramine, I was downing the dark chocolate, guacamole, over-easies, nut butters, heavy cream from grass-fed Jersey cows, and whole milk yogurt from ditto cows, for breakfast lunch & and dinner. Six weeks ago I stopped cholestyramine and kept up the fatty foods. Should I have been surprised my cholesterol was that high? Well, I was.

Cholesterol is the raw material of hormones and endocrines. So why such scant e's &h's?

There are two options:

A) Permanent damage from Lyme
B) Temporary damage from all the Lyme meds and supportive supplements I was on.

Dr. Ross was plowing ahead with option A, ready to write me a prescription for thyroid medication and hormone supplements, when I said:

And Dr. Ross said, "Yes, come to think of it, it has only been a month since you got off your meds annd your body could just be in an adjustment phase. Let's give it more time. I'll rerun all this lab work in a month and see if there are changes in the right direction."

Phew. Because  my long-term goal is to be on as little medication as possible, in return for as much energy as possible.

For the next month, my goal is to encourage my body to balance itself. That means keeping myself in a healing state for as many hours of the day as possible. Slow breathing, plenty of rest, light exercise, happy activities (like writing and dancing!) and above all, meditation.

Monday, April 15, 2013


This is a very sad post I've been putting off writing for weeks now. The Poet and I broke up at the end of February, six weeks ago. It was my decision.

There are a thousand things to write about the break up, but I don't know what is the right one. The Poet is a wonderful, brilliant, funny, caring person. I miss him terribly. I miss the many bright and tender moments we had. I do not miss the strife and anxiety, which had come to outweigh all the good things. This past year was especially difficult between us. I had my relapse last March, I got back on antibiotics and Lyme treatment once again ruled my days and nights. Meanwhile, the Poet was facing down his own demons, of which he was the first to admit he had plenty.

He said he wanted to support me through the difficulties of my illness, but his unadmittable, understandable, forgivable truth was he couldn't. He was burned out and his impatience came through, day after day.

This past year, I was drained from what I was going through physically, whatever I had left I gave to the relationship, but it wasn't enough. I had to take medicine around the clock, packing up pills and drops and juices and powders each time I left the house for even a couple hours. From morning to night, I was trapped in a series of cumbersome tasks. Weekend trips, or anything that felt adventuresome, relaxed, or free was pretty much impossible for me.

In a sad twist, I have now stopped taking 95% of these things in the seven weeks since our break up.

When The Poet met me, eight years ago, I was much, much sicker than I am now. He supported me with humor and love through many difficult times, and I am grateful for that. But living with him was rough. I won't go into details, but I knew I was putting up with things that were not OK, that I wouldn't have had I not been sick. I simply depended on him too much and didn't have the strength to move out, live on my own, or get through the greater pain of a break up, although I was in the verge of it many times. There were many beautiful aspects to our connection, times when his love for me shone through, and those times kept me going.

That and the hope that we would work things out. Looking back, there were times when it seemed we'd turned the corner with our conflicts. We had six-month and year-long stretches that were solid, wonderful. Then things would get awful again.

I have been missing him very much in the past few days. And more than a few times I have asked the sky and the air-- would we have made it if I hadn't been sick for so long? Would I have had enough patience and wit to sooth his angst and anger? Would we have created more happy moments, and would that have lofted him away from the darkness and anxiety he carried inside him?

Possibly. Possibly not. It's a futile question. All I know is since the break up, I am at peace in a way I haven't been for years. My life also feels empty of something beautiful and terrible, of strands of sweetness I could never sift out of all that resentment and rage, for all the years I spent trying.

Friday, April 12, 2013


I had my long-awaited appointment with Dr. Ross today to discuss my low hormone levels. He consulted with other doctors and decided he needed to run more tests. There is a possibility I have gone into early menopause. There is a possibility my pituitary gland is not working, therefore creating problems with my adrenal and thyroid function.

There is also the possibility that these problems have been caused by all the medicine and supplements I was on. Which means there is the possibility that a few weeks from now my pituitary gland will start to work as it should.

I have now cut out almost everything I was taking, with the exception of anti-yeast supplements (Candex), probiotics, the anti-inflammatory quercetin, and my adrenal/cortisol supplement (isocort). This last I have cut in half.

This week I put more pills back in bottles than I took out!
I stopped using my two biggest pill boxes, and later in the week I eliminated one more box. Plus, no injections, powders, drops or liquid medicines!

I wish I could say stopping everything else as of a week ago made me instantly feel better. It has not. It has, however, given me more time and way, way less hassle throughout the day. I am still dealing with quite a bit of fatigue. Not the crippling fatigue that had me in bed for years, but my legs feel heavy and my brain lethargic. I'm still going dancing and for long walks, as usual. I run sometimes, but for two miles instead of the four I used to do regularly. I concentrate in spurts, but I'm not exactly in the zone for writing these days, either.

And it's all OK, given there are still issues to work out and still things the tests are picking up.

Dr. Ross also told me today I also have high viral markers: CMV, EBV and HHR6. This in itself could cause the fatigue.

But the hormonal mystery comes first. I need to deal with viruses from a place of strength. I will wait a few weeks to give my body a chance to recalibrate after all the medicine, and then I'll get the tests for my pituitary, thyroid, adrenals, and cholesterol.

Thankfully, I'm still sleeping plenty these days, and now it's time to go to bed.

Tuesday, April 9, 2013


Fourth in the "Getting Off" series

On Friday I stopped taking my antibiotics and the Samento-Banderol-Teasel combination I'd been on to kill Lyme. Dr. Ross even convinced me to put away the home-made nasal spray I've using to treat my sinus symptoms. (see two posts ago.)

I also cut my supplements down to just my multi-vitamin, some anti-yeast pills, and probiotics. Since then I've slept more than I expected (seven and a half to eight and a half hours each night, plus naps) but my energy during the day has been all over the place. Swimming almost always makes me feel better, so I went Sunday. After I was so fatigued that I broke down and took some glutathione and B vitamins. They helped pretty much immediately, but Monday morning I was lethargic again.

This morning (Tuesday) was my appointment with Dr. Ross to discuss the issue of my low hormone levels and borderline low thyroid function. (My mom said she'd sit in on it, and I'd reminded her about it five times.) When the phone rang at 11:30, it wasn't Dr. Ross but his receptionist telling me Dr. Ross hadn't been able to consult with other doctors about my case yet. My appointment is postponed four more days.

Last Friday, I told myself to be prepared for a rocky transition, so why is this so hard? After all, I'm sleeping enough. Some lethargy during the day shouldn't be so bad, but I seem to have run out of patience with having low energy and no answers about it. Is it because I've dropped my anti-inflammatories? Is it yeast? Is it the adrenal support (Isocort) that I've kept taking? It is just my body going through some metamorphosis while it balances my hormones?

Not having a story to tell yourself about what you're feeling is hard. It's now Tuesday afternoon, seventy-two hours to go until my appointment with Dr. Ross.

Friday, April 5, 2013


Third in the "Getting Off" series

I had a phone appointment with Dr. Marty Ross two hours ago. I told him how much I'd cut down on my supplements and other detox activities, and that it hadn't effected my sleeping at all. Then I asked about stopping the Lyme treatment itself.

For the past several weeks, each time I counted out my thirty drops each of Samento and Banderol, and my twenty-five drops of Teasel, and every time I got ready to swallow my giant Biaxin tablet, one thought popped into my head:

"I don't want to take this anymore. It's making me feel bad and I don't need it."

And today when I asked Marty what he thought of stopping these things, he was all for it.

I'm still feeling some fatigue, at this point it's not clear what's causing it. It could be that all the stuff I'm on is putting my body into a tail spin. The best way to figure it out is to just stop.

The Lyme might be gone. If it isn't, symptoms will come back six to eight weeks from now.

There is also the issue of my low hormone levels, which I mentioned two posts ago. Marty said he will consult with doctors who have more expertise than he does on these issues, and he'll tell me what he finds out in an appointment next Tuesday.

Meanwhile, I'll continue to eat well, meditate, exercise, and just not worry too much about anything. (Let's see if I can manage that last one!)

Tuesday, April 2, 2013


Dr. Mahat called me a few hours ago to say my CAT scan showed nothing abnormal, except for a small cyst, which is usually due to a clogged mucous gland, and which Dr. Mahat said should cause no symptoms. To which I say, phooey. And also, I will not be deterred.

I'm not saying the cyst is the problem. I am, however, taking the test results with a healthy dose of cynicism. Anyone with Chronic Lyme knows medical tests are not always 100% accurate.

What I do know is that three weeks ago I took matters into my own hands, medically speaking. Into a teaspoon of water I dissolved two pills: my antibiotic Biaxin, and my antifungal ketoconazole. Both are supposed to help with any sinus infection I might or might not have. I poured the resulting liquid into an empty herbal tincture bottle, adding in a couple of drops of Teasel because it also had a good effect on the (possibly real) sinus infection. Lastly, I screwed an old nasal spray top onto the herb bottle, and voila! I had my own sinus spray. For three weeks I sprayed the liquefied pharmaceuticals into my left sinus, then lay on my left side and carefully angled my head until I felt the spray dripping down into the itchy, back passages of my sinus.

Here's my DIY nasal spray, in a handy spot on my desk.

So OK, this was my idea, not a doctor's. However, I ran it by Dr. Ross two days later, saying I planned to keep going with it, and he didn't tell me to stop. I also told Dr. Mahat about it in my appointment yesterday. He did not say "bad idea."

Empirically, my DIY approach has been working. By the end of three weeks, my sinuses felt better. Less fluid filling up that back passage by my ear. Less runny nose. I actually had no need to stuff my pockets with Kleenex every time I left the house. I was no longer waking up in the morning with my sinuses filled with fluid. The coffee grinder no longer sounded like an airplane lifting off.

I stopped the nasal spray two days before going to Dr. Mahat. I didn't want it interfering with his diagnosis. And now, on day four off the spray, my symptoms are coming back.

Dr. Mahat might have been a strike, but not strike three, and not the third out. As Yogi said, it takes a fat lady, and she's not on stage yet.

I have an appointment with a different ENT on April 24th, to get a second opinion. Meanwhile, I'm going to restart the sinus spray. Maybe I'm crazy, and I don't have an infection after all. Or maybe, just maybe, my own crazy home brew will kick this imaginary or un-imaginary sinus thing in the butt.

Monday, April 1, 2013


I went to the Ear Nose Throat doctor this morning, in order to see if I have a chronic sinus infection.
His name is Dr. V. Patrick Mahat, and he's here in Washington DC (I am staying with my parents for a little while). He was recommended to me by the coordinator of the National Capital Lyme support group. I liked him! He was friendly, attentive, asked detailed follow up questions and showed no skepticism when I said I had chronic Lyme patient.

For more than a year it's certainly felt like I have a sinus infection, one that's hung on despite the Biaxin and the Teasel, the herbal nasal spray, the neti pot, and all the massages to get my sinus passages to drain.

Dr. Mahat sent me off to get a CAT scan immediately after I left his office. He said they send him the images at the end of the day and he'll call  me about them tomorrow. It's that old familiar feeling of desperately wanting the test to come back positive. Please, let this be the missing piece of the puzzle!