Sunday, October 12, 2008


The first thing I felt when I went on Heparin three years ago was a warm, tingling feeling in my legs. Soon after that my body felt pleasantly heavy and my thoughts slowed to a drift. I felt sleepy, so went to my bed and took a nap. If you have Lyme, then you probably don’t take sleep for granted. For the past nine years I have fought tooth and nail for every inch of sleep I get, so to lie down and drift effortlessly into sleep was like the gentle rain of mercy falling down from heaven.

Within a few days of that first heparin dose, I noticed that my legs no longer ached when I walked or stood up. I tried a few short walks, just a block or two, and I was OK. If anything happened afterwards, it was only the heavy tingling washing over me until my energy returned. That is to say, for the first time in years my body actually recovered from walking. If I stood up for too long or walked a half block too far, I was no longer spending the rest of the day on the couch, my body a dead weight and my mind a little kaleidoscope of despair. I still got tired, but if I did, I rested and the rest did what it was supposed to.

And so started my love for Heparin. From the beginning, the good things were clear. One moment I remember in particular: I used to live on a street lined with picturesque bungalos, each with a pretty garden, and a view of the lake behind them. I used to drive by them on my way home, and think “One day, I will walk down this sidewalk and truly enjoy living on this street.”

After a couple weeks on the Heparin, I took that walk: three blocks out and back—unimaginable before then. As I turned to head home, I cried for joy.

And there was another benefit—the things that no longer happened and I didn’t miss at all. For example, before Heparin I went out with friends and acquaintances to a book reading. Afterwards, it was generally decided that we would all go get a drink at a cafĂ© a few blocks away. Only I couldn’t walk there. “I can’t go, I’ll wait here until M. comes to meet me,” I told my friend Ghusun, who was standing beside me.

Thank heaven for Ghusun: she promptly offered to drive me.

“Drive to Zaina? It’s three blocks away!” someone who didn’t know me exclaimed in disdain. I pretended not have heard, but I was cringing inside. “She’s sick,” someone else whispered. They all left on foot while I waited at the corner for Ghusun to get her car and pick me up, wishing all the while I could disappear.

I have not been in a situation like that in the past three years, and I hope never to be again.

But all loves have their give and take, and Heparin is not without its downside. Aside from the most obvious—having to give myself an injection every day—the big one is the bruising at the site of the injection.

The bruises were small at first, no bigger than a dime. But over time they accumulated and never entirely faded, so that my belly has a permanent gray-brown tinge. At one point, after a year of two injections per day, I had nowhere left to do the injection. I tried putting the needle into the fatty spot in my inner thigh, but it was too painful for me to bear.

So I switched to taking the Heparin sublingually. I filled the syringe, then squirted the medicine out under my tongue held it there for about ten minutes as it slowly absorbed through the membranes of my mouth. The effect of the medicine was dulled, and my legs started to shut down if I walked too far, but I could still go for short walks and do everything I needed to around the house, and the bruises on my stomach began to fade.

For the past year I have found this middle ground: one injection per day, one sublingual dose per day. I inched the sublingual dose up from 6,500 units to 6,700 units, with a go ahead from my doctor. My belly is still bruised and swollen. I wish I didn’t have this little pot belly, but Heparin trumps vanity.

In fact, Heparin trumps almost everything. I don’t want to imagine what my life would be like without it, as I have been reminded in many ways this week.


On Monday morning I called Key Pharmacy to get my Heparin prescription refilled. I had a handful of such calls to make that day, and I don’t like doing it. Key was last on my list, and I almost put it off, thinking there would be no harm in waiting a couple more days, my supplies would last.

“Come on, just do it now,” I told myself. “You’ll feel so much better having gotten all your calls over with.”

A few hours later I got a call back from the pharmacy. Debbie told me quite casually that there was a nationwide recall on the type of Heparin I have been using. There won’t be anymore for a few months at least, and did I want to put my name of a waiting list for when it gets in?

The other option, she told me, was Heparin with preservatives in it.

Um, no. I feel like I’m suffocating when I’m around someone wearing hairspray. My mind turns to mush for half a day if I eat food with additives. Injecting myself with preservatives? No thanks.

I hung up the phone and sat very still for a few minutes, quietly panicking. Then I called the Poet, at his day job in corporate software. As soon as I heard his low, rumbly voice I started feeling better.

“There’s no Heparin left!” I blurted out. “I’m going to go back to the way I was when you met me…. I don’t know how I’m going to get through my antibiotics.”

“Calm down, sweetie, it will be OK. I never heard of zat—za drug can’t disappear completely. Zere has to be Heparin somewhere. All you have to do is find it. You can order it from Canada like you did wis your oser medicine.”

A few words from the Poet were all it took. I was calm and resourceful again. And also I began to remember things—like I had once been on a brand name of Heparin called Lovenox. It was insanely expensive and tore through my meager insurance prescription coverage in a month—so I had switched to the generic I was on now.

I wrote down “Lovenox” in my notebook. This would be my last option, but if I had to, I could turn to high class prostitution to get it for a few months.

Then I called Carolyn, who suggested Rex Regulat, an over the counter enzyme that Dr. Dietrich Klinghardt uses and is similar to Heparin. While I was talking to Carolyn, I remembered that I used to have my prescription filled by a compounding pharmacy in Arizona, before Dr. Busher switched me to Key Pharmacy.

In a few more minutes I had found the Arizona company on the internet and was talking to Courtney in Scottsdale. She pulled my name up on the computer and told me they could get me preservative free Heparin. All she had to do was call Key Pharmacy and get my prescription transferred from them.


The strangest thing about this illness is the way it vaporizes my time, as if making a few phone calls and looking one or two things up on the internet creates a wrinkle in the space-time continuum, and suddenly the afternoon is gone. Whenever anyone asks me how I spend my day I’m at a loss for what to say. “Oh, I take two naps a day and I also take a lot of medicine, and that uses up most of my time.” The usual response to that is a polite nod. They’re not getting it, I think to myself, and I don’t know how to explain it any better.

When I got off the phone with Courtney it was close to 5 and I was tired, but relieved. I had meant to spend the afternoon writing, but so it goes. It would be time for my Heparin injection soon.


Jerri said...

I feel for you and am glad you have found the heparin. I was diagnosed with Lyme Disease but went to Sanoviv in Mexico. They recommended the hyperberic oxygen chamber which I did for 10 sessions of 1 hour. My doctor here in Oregon (who diagnosed the Lyme Disease) has since told me that 97% of the strains of Lyme are completely cured by 3 times in the Hyperberic Oxygen chamber at a certain pressure. Hope you can check that out and be free of the Lyme forever. Grateful in Oregon

Sonya said...

My doctor wants me to start 5000 units of heparin twice daily only I have a picc line so he said I can do it IV (pain free). He said it helps the antibiotics work better because it breaks up the biofilm.

In regards to someone else's comment about HBOT working after 3 dives.... I know people that have done 40 plus daily dives with varying improvement or no improvement. Do you know what exact pressure it needs to be at? Thanks!

Naomi said...

I'd say you have a good doctor. Heparin has been a godsend to me throughout my treatment. Helps me sleep, helps me recover from exercise. Now that I am done with Lyme antibiotics, I am still on it to help with the toxin clean up. I am sorry, I don't know anything about the oxygen treatment. Good luck, Sonya. I hope you recover swiftly!


Anonymous said...

I have suffered from Chronic Fatigue / Fibromyalgia for years and years and have seen doc after doc, and I am only getting worse.

I also have severe panic attacks, depression and muscle weakness.

Recently, I was going through some medical records from 2008 and found that my CK was 286, but also a d-dimer test was 2364. After doing some research, I found that high d-dimer is an indication of THICK blood. I also found a test under Coagulation Studies called COL EPINEPHRINE that was 300, which is high.

My muscle weakness has severely increased and I am getting twitches in my muscles. I am getting heart palpatations and tingling in my head. I am worried that if I don't get some help soon, that I could have a stroke.

I just went to my MD a couple days ago, and she is going to re-check my CK levels. She told me that the d-dimer is not a good test, and that she was not going to re-check it.

Does anyone out there know about the d-dimer test ? Is it a bad test ? What about the Col Epinephrine test ?

What blood test is the best to tell if Heparin would help me ???

Thank you !!!

Naomi said...

Thanks for your post, Anonymous! My heart goes out to you. I know what you are going through and how frustrating and frightening it is.

Please get to a doctor who can assess you for Lyme disease SOON. I went for eight years with the diagnosis of chronic fatigue syndrome before I was diagnosed with Lyme. Another friend went just as long with the fibro myalgia diagnosis. She has been on Lyme meds for a few months and just emailed me that she is feeling better than she has in years! (See the last paragraph of my post on May 17, 2012.)

Depression, panic attacks, muscle weakness and heart palpitations are classic Lyme symptoms! (I have had them all.) Thick blood can also be an indicator of Lyme. If you don't know of a good Lyme specialist, please look up Marty Ross, contact his office and ask for a doctor recommendation in your area.

And note: even if you have already been tested for Lyme, that is no indication you don't have it. The standard Lyme test is VERY misleading.

The test I do for heparin is at the HEMEX lab, but right now I am more concerned about you getting an accurate diagnosis of what is the root cause of your illness.

Good luck, and I would love to hear an update from you.