Julie H's Story

I didn't realize I was ill. It is slow to come on, but once you are in the grips of this disease, it is very debilitating. I noticed I was so tired all the time. I was falling asleep, even while talking on the phone. It seemed strange to get up in the morning and not remembering anything. I could feel this sleepiness coming on, and would say, I have to go and my brain was just going to sleep. I rarely remember undressing and going to bed. I began taking MSM, a horse product, actually sulfur, for the pain in my joints.

I started in 1996/97 and got relief from the inflammation after just a few weeks. But the fatigue just hung on and I gained weight, my hands trembled, I had terrible sweats and flushing in the winter. Half the time I had my jacket off cleaning barn, I was so sweaty. Oh well, guess I'm just getting older and I work hard outside with horses while my husband travels often; it is heavy work alone.

In April of 98, I found a strange bruise, but it was gone in two days or less. The center was a tannish light color with a white ring around it. It was sore to touch the center of it. Then, it disappeared as fast as it came. I concluded it was a tick bite and then forgot about it. After we put up a load of hay this spring, my joints on one arm were really sore. I thought I forgot the MSM. By this time, I was forgetting everything -- sleeping in my chair all night and running out of ambition in the day time.

The joints just got worse every day. Then other things started to show up. I couldn't remember feeding the steers, or a phone call. I forgot to pay the bills. I forgot to send out information on horses or potential breedings. I went shopping and didn't have a clue why I was there. I'd go in the parking lot and forget where my truck was. I couldn't think things out or reason. I was having trouble writing. I was mispelling and making errors typing.

I would mention to my husband, Jeff, that I had to call so & so; he would tell me you called them already. I would ask Jeff if he put hay out, and he would tell me, "You did it, don't you remember?" How embarrassing! What is wrong with me? After a few weeks, the pain in all my joints from the waist up got worse each day. Then stiffness in my neck and back, along with swollen glands. Next I was complaining about my hips, knees, ankles and feet. I could barely walk when I first got out of bed. I would wake up at night with horrible gripping pain in my hands and wrists. The pain would last from 7 to 10 minutes without relief.

But the clincher was falling dead asleep after supper for the night. No memory at all of what went on after supper; barely remembering eating, then forgetting my afternoons. I was having trouble thinking, losing my thoughts, and music was hurting my ears. I also had a sore throat, headaches, and my jaw ached. My grandkids came the 4th of July weekend and said "you are always sleeping, Nana." Several people suggested earlier to check for Lyme Disease and said "get to a doctor."

I called the doctor immediately after that weekend, for the pain was now so bad, nothing relieved it; and I had trouble getting my clothes on and off. My hand actually got tangled in my clothing and I didn't have the strength to get it out for it hurt so much to pull on it and I was getting so weak. I found myself crying from the pain, and so depressed with fatigue. Everyday a new symptom was showing up and the previous one got 50% worse. I had an appointment for the next morning and hoped I could wait that long; just a simple 24 hours.

I checked the Internet and found a site for Lyme Disease. I looked for a symptoms list. To my amazement, there are 38 symptoms. I had all but 8 of them. I took this list to my doctor with all the ones circled that I had; and the ones I thought were starting, I put a line in front of. She said she didn't know some of these were symptoms. They pulled blood but the tests could come back negative, even though she felt I definitely have it. She gave me antibiotics and said "don't forget to take them." I sat in the room waiting for the nurse and looked at the floor.

The rug was moving like water, as if I was in a boat -- goodness, vision troubles. If I would have waited even one more week, I could have had all the symptoms. It was being very aggressive and I was totally spent. That night I started with chest pains. Within 36 hours of starting on the medication, I noticed I was mentally alert, something I hadn't been in almost a year. I was wide awake and thinking again; it was like night and day. Then I found some papers from a lady that called me almost two weeks ago and I forgot to send it. I called to apologize and told her my troubles. She said "you sound so good, much better," (I can't imagine how I sounded before, scary) and that she totally understood.

An elderly neighbor by her mother's died of it and they found Lyme in the autopsy. I mentioned that a friend of mine said a younger person had it and it affected his heart; he needs a transplant. I don't think there is a limit to what this disease can affect. In thinking back over the last winter/spring, I believe I'd had it a couple of years already; the fatigue/sleepiness - joint pain - the sweating, weight gain that plagued me all winter of '97. The MSM held the pain in check until I got a second bite this spring, sending me spiraling downhill at a terrible rate. Below is the check list.

If you have any of these symptoms that are long lasting, please check with your doctor. Don't wait to get help. A friend of mine mentioned she has it and it re-occurs every 3 years! Left untreated it is dangerous and can be deadly. As horse people we are outside for hours during the tick season. Learn to check yourselves in the mirror for strange "bruising" or marks with rings around them. You don't always have the mark from the bite, but the symptoms will give it away.

SYMPTOM CHECK LIST

Do you remember being bitten by a tick? No__ Yes__

Do you remember having the "bull's eye rash"? No__ Yes__

Any other rash? No__ Yes__

Have you had any of the following?

1.Unexplained fevers, sweats, chills, or flushing

2.Unexplained weight change--(loss or gain)

3.Fatigue, tiredness, poor stamina

4.Unexplained hair loss

5.Swollen glands: list areas____________

6.Sore throat

7.Testicular pain/pelvic pain

8.Unexplained menstrual irregularity

9.Unexplained milk production; breast pain

10.Irritable bladder or bladder dysfunction

11.Sexual dysfunction or loss of libido

12.Upset stomach

13.Change in bowel function--(constipation, diarrhea)

14.Chest pain or rib soreness

15.Shortness of breath, cough

16.Heart palpitations, pulse skips, heart block

17.Any history of a heart murmur or valve prolapse?

18.Joint pain or swelling: list joints

19.Stiffness of the joints, neck, or back

20.Muscle pain or cramps

21.Twitching of the face or other muscles

22.Headache

23.Neck creaks and cracks, neck stiffness, neck pain

24.Tingling, numbness, burning or stabbing sensations, shooting pains

25.Facial paralysis (Bell's Palsy)

26.Eyes/Vision: double, blurry, increased floaters, light sensitivity

27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity

28.Increased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness

30.Tremor

31.Confusion, difficulty in thinking

32.Difficulty with concentration, reading

33.Forgetfulness, poor short term memory

34.Disorientation: getting lost, going to wrong places

35.Difficulty with speech or writing

36.Mood swings, irritability, depression

37.Disturbed sleep-too much, too little, early awakening

38.Exaggerated symptoms or worse hangover from alcohol.

Update August, 1998: In July, my doctor gave me antibiotics for two weeks, then said, "if the symptoms come back, call me." Well after two weeks, the symptoms didn't go away totally. I waited to see if they would cease, but no, after a week off the meds, they started to return. I noticed the second week it was getting worse, and by week three, I was back at square one. My muscle pain is such that I can't use my right arm and the left is getting worse.

It is a burning type of pain as if the muscle is tearing. I can't cut my meat, carry a purse, or open a door. The pharmacist said two weeks isn't enough, that I should be on antibiotics for two to three months until all the symptoms are gone. Today, I started my second batch of antibiotics and will call my doctor when she gets back and see if we can stay on them for three months. I don't think many doctors know how to treat this aggressively, and how will I explain to a doctor what a pharmacist thinks?

This disease is very demanding and needs immediate attention. Since I wrote an article for a horse magazine, I have had several people call or email that they think they have this problem. I had one desperate person call and ask me how I got my doctor to believe me, and treat me. He has gone to three so far and nobody will do anything. He has had Lyme for over two years and is getting desperate. I have no solutions for this type of trouble; I simply suggested he call every doctor in the phone book and ask "can you treat Lyme?" If not, call another doctor until you get an answer.

This is not the solution to a serious disease, and to somebody who is getting progressively worse without help. By the way, my tests were negative even though I have a rather serious case. I hope this gives insight -- I have no solutions. I, like so many others are swimming and looking for help. Sounds desperate. Yes, it is a painful situation and some days, I can't do anything. The other day my hips were really painful. I mis-stepped and knocked down part of a display in the store. Lucky I was with my daughter and fiance, Sean. I grabbed his arm before falling and got my balance. My daugher picked up the items for me; I could not get down to do it. It is very embarrassing! I hope I can get ahead of this.

September, 1998: After being on doxycycline for the last few weeks I am feeling so much better. I still have a month of medicine and hope to get ahead of it. I have had many setbacks. When overtired or stressed, so many symptoms come back -- the worse is overtired. I also have small bouts with joint pain, numbness, muscle spasms, and several other troubles. The best advice is to convince your doctor to keep you on antibiotics until the pain is gone. Then you have a chance. I still won't know until I go off medication if it will come back, but for now I feel good and am tired all the time, but not in horrible pain.

December, 1998: I managed to get refills on my doxycycline until December 7, when I used the last one. I seemed okay, I was almost pain free and many of the symptoms were gone or greatly reduced. The profuse sweating was totally gone; not even a hot flash. The only slight pain or discomfort I had was in my left hip joint. All other joints were good. For one week I seemed stable and then the reverse started. By Decenber 21st, I am losing ground faster every day. The sweating is starting ,and the pain in my shoulders wakes me up at night.

The overall body fatigue, stiffness, and sleepiness is all returning. My hands and wrists are very sore, and shooting pains have returned. My feet are getting stiff, and going up and down stairs is painful. I have tripled my MSM and aspirin, and not getting much relief from it. I have a call into my doctor. The last time I talked with her, she said she suspects I have arthritis.

February, 1999: I have an appointment with a new doctor; my doctor is not going to extend any more antibiotics. I am going backwards after ending my medication on December 7, 1998. I have had several updates on Lyme on line; one associating this illness with MS disease, (isn't that what I thought I had in the beginning?) and another with Parkinson's or Lupus? I found yet another site saying the government is going to finance a 100 million dollar grant to study this disease.

There are a couple doctors that are in the lead with blood tests that are tracing though tests which bacteria you are suffering with. This is experimental, also timely. Check with your local chapter of the Arthritis Foundation for doctors that treat Lyme, for the best results. I call and ask, "Can you treat Lyme?" If the answer is NO, then I call another. I also tell them "if you can't manage my disease, please say so." I know this sounds short, maybe insulting, but I am in need of immediate treatment that works. I can't afford to go endlessly down the road of no knowledge on the doctor's part.

If the Federal Government is going to get involved, then it is best that anyone with Lyme contact their representatives and tell them that this illness isn't a joke anymore, or a money maker for grants. Get busy Mr. Feds. If this is related to Lupus, Parkinsons, or MS, we are in deep trouble, and our lives are at stake; not to mention heart disease, and who knows what else? This disease is out of control. Best to move quickly -- call or write the reps for your area. Thank you!

May 1, 1999 - I have been on Doxycycline since March 6th and feeling better. I actually rode my mare, Rosemary, for 15 minutes last weekend, and my joints didn't hurt. My muscles, did, for I am getting very weak from lack of exercise. And with all the pain I had, I couldn't do much. I have lost a little of the 20 pounds I gained. I still have good and bad days, shakes when I am tired, and falling asleep.

If I overdo or stress, it gets a lot worse. I have to take naps when really tired or I will be sick literally for a couple days. I have enough medicine for a couple more months, then I will ask for another Western blot test, or maybe by then they will have the new test available. I don't want to go off medicine again until I am clean of bacteria.

Everytime I go off medicine, I notice it takes longer to recover, or that a certain symptom is retained longer. I have had noticable racing heart, pounding heart, and high blood pressure, since going off in December. Thank you to all those that wrote to me -- I appreciate hearing from you. To anybody with Lyme, be persistant; better days are definately coming when these ambitious doctors release the new bloodtest.

Julie Heise

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