by: Julie Heise
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 I didn't remember 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 tiredness 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 and 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 forgot where my truck was. I couldn't think things out or reason. I was having troubles writing. I was misspelling 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 griping 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 remember eating, then forgetting my afternoons. Having trouble thinking, losing my thoughts, music was hurting my ears. Sore throat, headaches, 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 Lymes 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 Lymes Disease. I looked for a symptoms list. To my amazement, there are 38 symptoms. I had them all of them but eight.
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. A elderly neighbor by her mother's died of it and they found Lymes 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 had it couple 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 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____________
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
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
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
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 pain as if the muscle is tearing. I can't cut my meat, carry a purse, 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 Lymes 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 Lymes," 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 progressive 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 finance Sean. I grabbed his arm before falling and got my balance. My daughter 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 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 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 December 21st, I am losing ground faster every day. The sweating is starting, the pain in my shoulders wakes me up at night. The overall body fatigue, stiffness, 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 asprin 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 Lymes on line, one associating this with MS disease ( isn't that that what I thought I had in the beginning?) and another with Parkinson or lupus? yet another saying the government is going to do 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 Lymes for the best results. I call and ask, "Can you treat Lymes?" 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 doctors part.
If the Federal Government is going to get involved, then it is best that anyone with Lymes contact their representatives and tell them this isn't a joke anymore or a money maker for grants, get busy Mr. Feds., if this is related to Lupus, Parkinson, MS , we are in deep troubles 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 your 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, yes 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 over do 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 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. Every time I go off medicine, I notice it takes longer to recover or that a certain symptom is retained longer. I have had noticeable 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 Lymes, be persistent, better days are definitely coming when these ambitious doctors release the new blood test.
JUNE 1999: I woke up one morning in June and realized my prolapse finally stopped and my heart is beating normal. In May I asked my daughter Kelly to take my pulse. She couldn't count it. My heart stopped anywhere after 3 to 12 beats and restarted itself. It is scary to lay in bed and listen to it, especially when I am alone. My blood pressure has been up there all along. 178 over 110, but Kelly also took my blood pressure in June and it is down to 138 over 80. That is more in line to where it should be although I usually had 120 over 80. Considering how high it was in March when I first went to the Doctor, it is much better. My heart no longer races around all over the place. It is August and I am still on Doxy. I feel rather good. I get tired very easy and sometimes my symptoms are annoying. When over tired I shudder, I still have muscle twitching where my legs or arms jump out of control. I have troubles thinking and speaking also and my memory is very poor. But I can deal with this compared to summer of 1998. I do have some joint troubles in my hands and feet. Seems this is going to stay with me for now. I don't know if any of the weakness will go away since I can't put much strain on my joints. My muscles are all very soft and I have lost a great deal of strength. I don't know if I can regain it that easily.
I also take vitamins that seem to help. Garlic has done very well, I take five 450mg tablets twice daily, along with A & D gel for muscles. I don't get the charley horse cramps in my legs and feet anymore unless I forget the A & D gels. I take two or three daily. I take 600 mg. of Calcium daily which has helped with the bone pain I had last year. I am still on MSM, the anti-inflammatory sulfur product and aspirin daily. Since my memory is so poor, I started taking Ginkgo Biloba daily and I have noticed a difference. I can recall small things better and I notice I have to think, yes think! This is a disrupted function from the Lymes and needs to be worked on. I am so use to forgetting everything as soon as I hear it, I have to practice recall. But it is improving unless I get tired or stressed.
APRIL 2000 - after several set backs, I am still suffering from this disease. My doctor is not up on treatment for the level of infection I have. I can't get ahead of this on the small dosage of medicine he gives me. When I asked for the amount I should be on, he didn't give me that only half of what I need. I have found that my horse vet and dog & cow vets are better informed and equipped to treat lyme disease than human doctors. I also found out that ALL ticks carry this disease not just the deer tick. Many deaths are now associated with lyme disease. For more information on different treatment for Lyme check out some of these sites.
JANUARY 2001---I am finally on a regular dose of antibiotic instead of double strength. I live on my vitamins and herbals. Along with what I mentioned above, I also take Echinacea, at least 3400mg a day, Glucosamine, 6000 mg. a day and OneSource mega vitamins/minerals - 2 twice a day. It has really helped and I feel good. I still have major troubles with my joints, especially my wrists which can take no pressure at all. But I am not down and out like the past few years. I can stay awake evenings unless my stress level is up. Things are looking better.
AUGUST 2001 - I am off antibiotic since July 2, 2001. We shall see how this goes. Right now after one month, I can't tell if this is in remission or not.
By October 2001 it was all coming back, frustrated I turned to Chinese Herbal Medicine, and that is working. It is not as effective and I have days where I am very tired, but I am not on perscription drugs. I take more than the recommended dosage but I have a condition that normal daily intake measurements can't handle. I visit Young Again and order what I need and they are here in a day or two. It is effective for me and over the counter. I am in control of my own health again and I can live on this for the rest of my life if I can't beat it. It is now March 2002.
JUNE 2002 - I have had great success with Garlic, it is very high in allicin which is a natural foreign bacteria fighter. I take two a day or three and feel great.
August 2003 - I now have been able to cut down to 1 garlic capsule a day, and maintain. I have also cut back on the minerals and supplements I take as too much is not good in the long run. I am extremely lucky in treating myself for my needs and not allergic to minerals or supplements. I am not recommending this as a cure. Garlic is a natural food source and fights foreign bacteria naturally.
June 2004 - I am feeling good!! Lyme Disease is becoming the number one disease in the United States.
December 2005 - Check out this website which has excellent information. Lymebook.Com - From the first page: What is Lyme Disease? "Lyme Disease is caused by Borrelia Burgdorferi, a spirochete bacteria similar to the bacteria that causes Syphilis. Lyme Disease is known as the “Great Imitator” – It can masquerade as Attention Deficit Disorder, Chronic Fatigue Syndrome, Fibromyalgia, Obsessive Compulsive Disorder, Alzheimer’s Disease, Schizophrenia, Depression, Multiple Sclerosis, arthritis, heart conditions, and more.
This is from Les Roberts:
I have written the first novel to deal with the horrors of Lyme Disease..."The Poison Plum".
The book is of course of interest to Lyme victims but the target audience is the general public who enjoys mystery/thrillers, government conspiracies, etc.
Warm and fuzzy it is not but it gets the message across..
© 1998-2019 - Julie Heise