August, 1998  This journal is typical of the patient responses when baseline coagulation test values are abnormal and the heparin protocol is followed.   This has been reprinted with Beth's permission.

Baseline lab values abnormal. Increased fibrinogen, Soluble Fibrin Monomer (SFM), PA Score (platelet activation) & Sonoclot Rate of clot formation. It is important that the baseline values be abnormal, because the patient WILL then respond favorably to the heparin protocol.

"This will be an interesting time to try out this treatment because I'm already so tired and it will be an abnormally busy week for me.  We have guests coming on Friday evening and I have a lot to do to prepare for their arrival."

One week of placebo saline injections. No change in condition. Also no change in the patient after the course of Lamisil (antifungal drug).

Day 1of Heparin: 7/1/98 8 am, first injection. No change after my 12 hr injection. (5000 units/ml heparin, SQ, BID)

Day 2:  No change after 3rd (24 hr) injection. 30 hour mark. I think I'm feeling better but I'm not sure yet. Usually by noon I am exhausted and ready to lie down. Now I'm tired but not debilitatingly so. I worked hard all day and never stopped. I should be exhausted, however I feel quite good. I have more energy than usual. It's 11:00 pm. I rarely stay up this late. I have a headache, but that is normal for me. However, it seems to be less.

I worked hard all day and I never really stopped.  I've grocery shopped, cleaned bathrooms, done yard work, picked the garden, done five loads of laundry, babysat another child besides my two, drove a couple miles in an un-air-conditioned car to take the kids swimming and then sat in the heat watching them.  I should be exhausted.  I should have been drained from the heat.  However I feel quite good.  I have more energy than normal, and yet I've packed a lot more into the day than I usually do.  As I lay in bed, my muscles don't feel as tight as usual. Am I imagining this or is it for real?

Day 3:  It took four stabs tonight to get the syringe needle into my bruised belly.  It was difficult to overcome my fear.  I broke out in a sweat as I tried to get the needle to go deep enough into my muscle to release the plunger and the heparin.  It  hurt!  I think the main reason it is  hard to give injections to myself  is that  I can't trick myself into relaxing before the needle hits.  I KNOW when it's going to go in!

l0:l5 p.m.  I'm on my bed, ready for sleep.  I worked hard all day.  In fact I didn't stop for a rest at all!  I swept and mopped the floor, babysat, took the kids swimming in l08 degree heat, made lasagne for l6 people, and on and on.  Our company arrived at 6:30 this evening.  I fed them, entertained, and cleaned up from the meal.  I should be utterly exhausted, but I'm not!

Day 4:  I know for sure now that this heparin is  having an effect on my body.   It's late but I feel amazingly strong.  I had no headache all day--this  in itself is incredible because I have suffered from a constant headache for the past five years.  My head is clear, no fog in my brain.  My muscles are still deeply achy, my hips and buttocks hurt, as do my feet.  The muscles in my back are taut with tension.  However, one big difference today is that  I didn't feel like I was dragging my body around.   It didn't hurt to support my head on my neck and shoulders, or to stand up straight.  I feel like I have some source of new energy--which is probably exactly right!

How can I describe what I'm feeling? I think it's most like taking a warm tub-bath.  In a bath the water flows across the skin in a soothing warmth.  That's how the inside of my body feels.  My tissues feel moist, bathed in warmth.  It is a delicious sensation.  I can actually feel the warmth moving throughout my body, from my head to my toes.  So strange, yet so comforting, so moist.  Moist definitely seems to be a good adjective to describe what I'm experiencing.

Day 5: Tonight I'm aware of the feel of the bed sheets on my bare skin.  The sheets are smooth and cool and soft.  It has been years since I have noticed that!  I think my body has hurt for so long that I haven't been as aware of other sensations, especially physical pleasure.  Tonight I take joy in the simple pleasure of feeling the bedsheets draped across my legs, and of muscles starting to relax.

Day 6:  My bruised tummy hurts, but the rest of my body feels better than it has in years. (HINT: Put an ice pack on the skin for 2-3 minutes before the injection and again after the shot. This will stop most of the pain from the injections.)  When I got out of bed this morning my feet didn't hurt to put the weight of my body on them. Also, when I leaned over the bathroom sink to wash my face I didn't have any trouble making the stretch.

I should be exhausted after so many busy days and late nights, and rainy weather usually intensifies my body aches and causes my hands and feet to swell.   However, I feel real good and there has been no swelling.  Paul says I'm not as crabby as I usually am in the heat!

8:00 p.m. - My head is clear tonight--no fog.  I didn't have a headache at all today though it hurts if I touch my fingers to the scalp.  I'm tired and  ready for an early bedtime tonight

Day 7: Today I reminisced about how I felt last week as I contemplated taking heparin. I knew all the worst scenarios associated with heparin: internal bleeding, stroke, death.  I knew these things were all statistically rare.  But that's just the problem.  I'm not a statistic.  I'm me. I've never been one to be-little fears.  I've always faced them head on, talked about them, wrote about them, and taken them to God in prayer.  I faced this one, too.  Heparin.  Would it help me?  Would it hurt me?  There was only one way to find out.  I'd have to take the risk and inject it right into my body.  I was scared.  I was reminded of a Bible verse I know well:  Jeremiah 29:ll, "For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future."  I was comforted. Now that I'm a few days into the treatment, much of the fear has been relieved.  I guess that proves that it's the unknown that scares me the most.  I know heparin now.  Heparin has become my ally, my friend.

Day 8:  I didn't sleep well last night.  My right hand kept going numb and I'd wake up and have to shift position throughout the night.  I was tired and draggy today.   By late afternoon I had developed a headache and stomachache. The kids drove me crazy with their commotion and decibel level.  I was anything but a patient mom today. Tonight my feet are very painful, and my lower back is tightly sore.   I feel like my  very nerves are on edge. Am I just reacting to working hard days, keeping late hours, and exercising too much in the swimming pool?  Maybe my body is finally crashing after a very busy week.  I have felt so much better the last few days that I think I've pushed too hard, not knowing where my new physical limits are.

Day 9:  I slept a good l0 l/2 hours last night.  I didn't get out of bed until 8:30 this morning.   I am clear-headed and rested.  My muscles are not as sore and my feet didn't hurt when I first got out of bed and stood up. My body feels light. This is great!      l0:45 p.m. - It's late and I have a little headache at the back of my skull.  I'm feeling spacey,  but not too bad.  I was pretty clear-headed all day with lots of energy.  I actually feel like reading for awhile tonight but I know I need my sleep so I'm going to shut the light off.

Day 10:  I was out of bed at 7:30 this morning. Later I went  down to the Printshop and picked up my husband, Paul.  We went together to HEMEX Labs to have my blood drawn. We talked to David for awhile.  I explained in some detail the changes in how I am feeling.  I told him I've been keeping a journal and he exclaimed, "Yes!" and high-fived my hubby!  He asked me for a copy. While the phlebotomist was working on my arm, David mouthed "We've been praying for you!"  That made me happy.  Later Paul and I went back to the printshop where he works with his parents.  Paul's mom mentioned that the last few times she had seen me the first words out of my mouth were not "I'm so tired!"  I hadn't even been aware that I had done this, probably for years.  It is really neat to see that other people are noticing that I am different.

Day 11:  I was up at 7:00 a.m.  I slept real good but awakened with a headache at the back of the skull, both sides, above the ears.  My neck is also stiff.  My muscles feel hard, without flexibility.

Paul just called to tell me that the blood test results were good.  The heparin is working!  Of course I already knew that because I could feel the difference in my body.  However, it's nice to have the proof of the blood tests. I went swimming this afternoon with Paul and the boys.  I swam and exercised for at least 30 minutes.  It felt good.

8:30 p.m.  I had a headache most of the day but it's gone now.  I was too tired to cook tonight so we got Arby's roast beef sandwiches for dinner.

Day 12:  I slept great last night.  Woke up this morning feeling very rested but with a headache. l0:30 p.m.  I've had the headache all day.  As the day progressed the headache worsened.  Tonight my whole scalp throbs, it's very sensitive to the touch.  My body-aches seem to have intensified--maybe because of all the exercising I've been doing.  Paul tried to rub my legs to get my blood flowing and help me feel better, but he had to stop because I couldn't stand the pain.  I hurt from my hips to my heels and my teeth to my tailbone.   I still have that extra energy though.   I need to stop writing and go to bed!

Day 13:  Up at 8:30 this morning.  I still have a headache and feel tired.  3:00 p.m. - I've taken it easy all day, done light housework and letter writing.  My headache is finally gone.

Day 14:  I slept well last night, but awakened with both hands asleep.  The tingly-ache was painful and my hands felt huge.  I shook my hands awake until I had enough mobility in my fingers to press the trigger points on my shoulder blades and below the inner elbow.  After a few moments the tingly sensation subsided.  However, it was difficult for the first few hours of the day to do any task where I needed to grasp with either hand.  I have only a slight headache today and my muscles seem more relaxed, with less pain.

Day 15:  Today marks my second full week on heparin.  I hope I'm at the halfway point.  The doctor thinks I will need a month on the treatment, but we don't really know since this is experimental. I am definitely feeling better than I did two weeks ago.  I have much less fatigue, am sleeping well most nights,  and have more energy and stamina.  I have almost no fog in the brain, less headache, and no night sweats.  I also think my muscle aches have diminished slightly.

Day 16:  Today was blood day at HEMEX. On the way home, after I had picked up my boys and their cousin, I became aware that I am not being bothered by noises and commotion as much.  I had three pre-teen boys in the car, jabbering and laughing loudly, and the radio blaring.  Instead of the noise being physically painful, I was enjoying myself!

Day 17:  I was tired most of the day.  I had a slight headache on the back right side.  Not bad, just annoying. My body ached all day, too, but not severe. The boys and I went swimming and I spent an hour in the pool this afternoon.  I couldn't believe it!  I enjoyed playing with my sons, doing laps, and exercises.  Exercise has become fun again, instead of a burden.  It feels great to stretch my muscles and have a good workout. This evening I feel tired, but in a good way.

Day 18:  Paul said to me this morning, "Your skin feels different."  I've thought the same for a few days now, and it's neat to hear him say so.  My skin seems softer, silkier.  It's lovely!  My muscles have relaxed more in the past 24 hours, too.  My fingers are no longer stiff.  My legs don't feel so tight, my feet don't hurt.   My body feels fluid and sinuous, light.  I like it!

Day 20:  I feel better today, though still tired.  I don't feel spacey or disconnected.  My brain is clear and the headache is gone.  My feet hurt, especially the bottom of the soles, near the toes.

This afternoon I swam and exercised for 45 minutes.  It felt good.  While in the pool I realized that I have been putting my head down, and my ears under the water when I swim.  This wouldn't be significant except that I haven't been able to do this for many years, unless I had earplugs, because when I get water in my ears I have developed earaches.  (I have worn earplugs in the shower for the same reason.)  I also am susceptible to earaches when my ears are exposed to a cold wind.  A number of times the ache has been so painful that I have had my ears examined by a doctor.  Each time the doctor said the ears were not infected.  I'm wondering, now, if it's possible that the water and the wind set off trigger points in the ear and that's why I had earaches.  Very interesting!  Anyhow, every time I've been swimming the past few weeks I've put my ears under water and have suffered no pain.

Day 23:  I went to HEMEX and had my blood drawn. Paul and I talked to David Berg for a few minutes.   In a simplified manner, for the benefit of my understanding, he explained that my  condition is like having a teflon-type coating on my blood vessels (fibrin deposition).  The blood can't get through the teflon-type coating and therefore can't provide my muscles and tissues with the nutrients that they need.  The very tissues of my body have been starved.  It's a fascinating word picture because this is exactly how I have felt!

Day 24:  No headache this morning.  I feel good.  Dave called today. He told Paul that yesterday's blood tests showed no change from last week.  He was hoping for a continued 5% reduction of the different clotting factors every week, so was a little disappointed that there was no change this week. When I heard the news I was initially disappointed, too.  It took time for my FM to get really bad, I know it will take time to get better. When I stop to think about it I KNOW that I continued to improve this past week, especially in the area of muscle mobility and flexibility.  The changes have been slight and gradual but they are changes nonetheless.

For example, I move faster:  I get up and down quickly, in and out of bed easily, from a seated to a standing position without pain.  I kneel for longer periods of time.  I lean over to pick things up off the floor and it doesn't hurt.  I hold a position longer, without having to stretch the kinks out.  I raise my arms outward from my body to fold bath towels and bedsheets, and my shoulders don't ache when I do it.

I sleep better.  Most nights I get a good night's rest.  My energy level is definitely much higher than it was before heparin.  Over the years I had to learn to set boundaries to protect myself and my low energy threshhold.  As much as possible I would plan only one or two "major" tasks or outings a day.  For example, grocery shopping and a trip to the library.  I would consider this ideal, knowing I would probably not have enough energy to do more.  I was almost always exhausted by lunch time.  As often as possible I would stop after lunch, take a nap, or at least put my feet up.  In comparison to the past ten years, I am now packing my days with activities.  Basically I'm busy all day, something that a normal healthy person always does.  But I haven't been normal or healthy for a very long time, and a heavy schedule used to completely deplete me, both physically and emotionally.  I learned to compensate by avoiding a full schedule whenever possible.  Now I no longer think about it, I just do it.  My life is returning to normal! These changes might not show up in a blood test, but I know they are significant changes.  They are changes in my lifestyle.
 

The above journal represents one patient's viewpoint.  We are starting an indepth, one year study using the same protocol on patients with abnormal baseline coagulation values. For more information, please contact us.

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