Technical Questions about Lyme Disease
Emotional Questions about Lyme Disease
Overview:
Many people hear "Lyme Disease" and think of things like tiny ticks, arthritis, and rashes. the sad and scary thing is, there is oh so much more to this disease.
Lyme Disease can often be debilitating, excruciatingly painful, frustrating, and lonely. It has led many marriages to divorce, left many families in anguish, and many hearts feeling sad and alone. Including mine, well, all except for the divorce, and I can only pray that wont happen to me.
I have not found any statistics, or reports, but I have read many times that depression can accompany Lyme Disease, and I wonder if any lives have been lost to this aspect. I do understand the despair that one can feel, and sometimes, it feels like there is no real way out, and that your life wil never be the same, and you wonder if you are truly willing to give up the life you had before this tiny vector invaded everything that was. Lyme patients certainly go through typical greiving, which for those of you who dont know, the greiving cycle is approximately 18 months. When diagnosed with chronic illness, one should be allowed to greive for that "loss". Death is not the only greivable loss we as humans suffer in our lives. When Lyme disease takes a turn for the worse, many have need to begin a new greiving cycle, and when you are told that "you may never be cured" or that "you will never regain total normalcy" or "you will have 10% permanent damage, including some brain damage" you again, must greive because you are losing a part of who you are or were, someone that will never be again. This is all very difficult for Lyme patients, and needs to be realized by the loved ones in their lives. Keeping this in mind, please make sure that you share this page with any one you know who is trying to support a Lyme Victim, in hopes that they may gain better understanding as to who we are, and what is really going on in our heads.
The following questions and answers are based on my personal experience, and knowledge obtained from extensive research, far too much to include a bibliography. I reccomend you follow the links included, and do your own research before making any pertinent decisions. This page is just designed to give a "better understanding" of Lyme Disease, in what I would call 'laymans terms'. I am neither a doctor, nor health professional of any kind, I am just someone who has been there, and wanted to share. GOOD LUCK!
Table of Contents:
1. What exactly is Lyme Disease?
2. What do these ticks look like?
3. What do I do if I find one of these ticks on me?
4. What do I do with the tick?
5. How is Lyme Disease Treated?
6. Who treats Lyme Disease?
7. What are the symptoms of Lyme Disease?
8. Are there different stages of Lyme Disease?
9. I was bit, do I wait for symptoms before begining treatment?
10. What is "herxing" or a Jarisch-
Herxheimer (J-H) reaction?
1. I have Lyme Disease, how do I find support?
2. My Loved one has Lyme Disease, how can I support him/her?
3. Why do I feel so sad and frustrated?
4. My spouse has Lyme Disease, I have lost control of my life as well as my spouse.
Technical Questions:
1. "What exactly is Lyme Disease?"
Lyme Disease is an illness, often chronic and debilitating, usually very painful, with as many as 70 different symptoms. It comes from an organism called a "spirochete" that is transmitted by deer ticks (see previous page Lyme Disease Information Page ) who feed and aquire the organism from hosts such as the white footed mouse, deer, squirrels, and more. These tiny ticks can be carried right into your back yard...even in the city, on birds, small rodents, and even people. Noone is safe from this disease, and EVERYone should take precautions! For more innformation on this question, please use the link above and go from there.
2. "What do these ticks look like?"
Follow the link in the answer to question 1, there is a picture in that page. Be sure to note the dime next to the picture for size comparison, these things are SMALL!!!!
3. "What do I do if I find a deer tick on myself or someone I know?"
The ONLY way to properly remove a deertick, is to use a very fine nosed tweezer, for $2.00 you can buy "splinter tweezers" at pretty much any store that sells health & beauty aids. Place the ends of the tweezer on either side of the tick, press down on the skin so you can reach in very low & close on the mouth parts (they look like 2 small barbs that penetrate into the skin), and grab firm hold and pull the tick out. Check to make sure you removed the tick intact, with both mouth peices. Place the tick in a small vial or clean pill bottle with a wet cotton ball. You should be sure to treat the bite area, the tweezer, and your hands with hydrogen peroxide.
4. "What do I do with the tick once it is removed?"
This is a very personal decision that should be made by researching, calling your family doctor, or local health department. I removed a tick from my son recently; Backed with pamphlets from the Lyme Disease Foundation, and printed information from Lymenet.org, I asked the pediatrician for antibiotics immediately, and lab testing information. I had the tick tested, and although the result was negative for "Lyme Disease" (they currently do not test for any other disorders), I was advised to continue the full course of antibiotics to protect from Erlichiosis, and other tick borne diseases, and also the rare instance that the negative result could be wrong.
5. "How is Lyme Disease treated?"
This is a very loaded question. The answer depends on many things, when were you infected, what symptoms do you have, what other health problems do you have unrelated to Lyme Disease, what other medication you are taking, are you pregnant or breastfeeding, who is your doctor, and many more. The usual treatment is with antibiotics, strong ones, usually oral to start with, and depending on how you do from there, there are intravenous antibiotics that are much more effective in treating this very stubborn organism.
6. "Who treats Lyme Disease?"
Many people think that since I live in Connecticut, I should have the very best treatment right in my back yard, close to where the tick was found.......WRONG! I am not saying that all doctors in Connecticut are incapable of treating Lyme Disease properly, just that for my situation, and based on referrals from the Lyme Disease Foundation in Hartford, CT, I am being treated by one of the top Lyme Disease experts in the country. This, like other things, is a very personal decision, and may depend on things such as insurance, where you live, and financial situation. It may also depend on how you do in your treatment, and you may start with one doctor, and find need to switch. If you are looking for a referral, try The Lyme Disease Foundation , and send a message to their e-mail link.
7. "What are the symptoms of Lyme Disease?"
Another loaded question. There are several listing on the internet, many on the links on my Lyme Disease Information Page , but I will list as many as I can, just so you have an idea of the total body involvement that this disease can take. I am listing "symptoms" and "manifestations" as some things are not really a symptom, but a result of the organism/illness's effect on a particular part of the body. Please see question #8 also, for a description of the "Stages of Lyme" that also have to do with which symptoms are most prevelant.
symptoms and manifestations of Lyme Disease...
fatigue, stiffness, arthritis, headache, migrane, flu-like symptoms when no flu is present, nausea, rollercoaster appetite, hypoglycemia, heart problems, short term memory loss, loss of libido, irregular menstrual periods, loss of menstrual periods, hair loss, numbness or tingling in extremeties, bells palsy, twiching in muscles, loss of dexterity, irritability, depression, anxiety, exacerbation of other illnesses such as asthma, heightened paranoia or phobia (like a sudden increase in an already exhisting fear of heights), motion sickness or increased occurance of motion sickness, tactile sensitivity, light sensitivity, sound sensitivity, taste sensitivity (no we are NOT just picky people!! LOL), increased and often extreme sensitivity to heat and cold (house HAS to be set at 72 degrees, no more, no less, or we lose our minds!), vision impairment, irregularities in hearing, pressure in spinal column, EM rash...often diagnosed as eczema or an allergic reaction (this is a circular rash that usually grows in diamater and has a central clearing. It usually does not itch or hurt or feel hot and is NOT present in all cases of Lyme Disease. The CDC estimates that "maybe" 50% of all Lyme Disease Patients have had an EM rash), but you should check their site yourself for more current statistics.
8. "Are there different stages of Lyme Disease, and if so, what are they?"
Most experts break Lyme Disease into three (3) stages as follows:
Stage 1 or Early
This is often thought to be the time closest to actually contracting Lyme Disease. There may be a rash, but no other pertinent symptoms. If treatment is begin now, the odds are in your favor, and you may spend one to two months taking oral antibiotics and not have to worry about any further complications.
Stage 2 , sometimes known as "acute Lyme Disease"
This is when sypmtoms have taken place, usually in the first year of contracting the spirochete organism, from my understanding, symptoms in this stage can be more vague, and mimicing other illnesses, and usually not debilitating. If treatment is begun in this stage, it is not always as effective as early treatment. It can take longer and can be more difficult and costly. The prognosis however is usually a good one, but you should discuss this with your doctor.
Stage 3, aka "Late or Advanced Lyme Disease"
symptoms have become severe, and possibly debilitating, prognosis is not as good if treatment is not begun before this point. Although many doctors are hopeful for a positive outcome even when starting treatment at this point, the road is long, possibly difficult, and often costly and frustrating. I am not positive, but I think that all late stage patients have central nervous system involvment, which means that the organism has entered the brain, and cerebral/spinal fluid. I once read the term "Lyme Meningitis", not exactly sure what it means, but just makes you think....this IS serious! These are the people who need the most support, in any way that friends and family can give.
9. "I was bit by a tick, do I have to wait for symptoms before I do anything about it?"
First of all, refer to questions #3 & 4, and also follow the links and do some research. You should also consult your physician for his/her opinion. My personal beliefe, is that an "ounce of prevention is worth a pound of cure". If you have what is known as a "High Risk Bite", you have nothing to lose by getting antibiotics for 4 - 6 weeks. I personally know people who did not do this, and knowing that Lyme Disease was very possible, the symptoms were very vague and tests did not come back positive until long after the disease had invaded the whole body. The financial, physical and emotional cost of Lyme Disease is far more than the tiny risk and inconvenience involved with a short course of antibiotics.
10. What is a "Herx" or a Jarisch-
Herxheimer (J-H) reaction?
This is basically the body's reaction to the breaking down or killing of the spirochete, in reaction to the onset of antibiotics. The symptoms of Lyme Disease worsen, sometimes symptoms that were not seen can emerge. Occurance is usually with-in a few days of starting, increasing, or changing antibiotics, but sometimes can take longer to occur. The reaction can last for days or weeks, and usually begins to cycle (ie: every 4 weeks). Often, each subsequent cycle is less severe than the previous. For much better information on this subject, click over to What is a Herxheimer Reaction in Lyme Disease , on Donna Herrell web site.
Emotional Questions:
1. "I have Lyme Disease, how do I find support?"
The following links are a good start, and the links on my " Lyme Disease Information Page " are also a very good source. If you are on AOL, please try:
Lyme Disease Chat room, on wednesdays at 3pm.
or Monday 8pm Lyme Chat followed by Monday post AOLyme private chat...9pm .
the Lyme Disease message boards... Lyme Disease , Lyme Disease#2 , Lyme Disease#3 .
If you can access IRC (Internet Relay Chat), you can join "#Lyme" on the starlink server, Tuesday & Friday nights at 10pm EST (sometimes there are people there a little earlier). You can also get on a very large Lyme Disease e-mail list, which has been an amazing source of information for me. For more info on that, please e-mail me at pmsinct@aol.com .
2. "My loved one has Lyme Disease, how can I support him/her?"
You have already made a GREAT start! Keep going, and you too can look into the many links I have above and on my Lyme Disease Information Page . My biggest piece of advice.....dont ever stop supporting this person who needs you now, more than you know!
3. "Why do I feel so sad and frustrated?"
Good question, and the answer? "LYME DISEASE" As you read through my pages, you will notice, that lyme disease takes away a lot of who you are, and also takes such a physical toll on your body, and emotional toll on your mind. Just look at the long list of symptoms in technical question #7. From loss of sexual interest, to extreme chronic fatigue, to short term memory loss....you certainly have a right to be sad, and frustrated. The best thing you can do, is to validate your feelings, acknowledge that it is ok to have them, it is only normal, and you should worry more if you dont have them, because then you are probably in a severe denial. Once you have acknowledged them, it is time to evaluate the things you can do to help ease them, like taking regular naps, doing things to help you feel better about yourself, like volunteer work (if you are able) or getting your hair done or a facial. Little things mean a lot, and can be the digfference between a short bout of feeling sad, and a long road of depression. Not that if you are depressed you can fix it by getting a perm, you cant. Real depression needs real treatment, and saddness can (in MY opinion) lead to depression if left unaddressed. Sometimes taking a quiet shower, and a nap will make a long impossible day, turn into 2 easy managable sections. Do you really pick up a foot long grinder and tackle the whole thing at once? Not usually, it is much easier to cut it in half and even take a little break in between, have a glass of juice or something...right?! Ok, I think you get my point here. On to the next question...
4. "My spouse has Lyme Disease, and now I do EVERYthing, and I feel like I am losing control of my life. I also feel like I have lost my spouse, he/she has no intrest in me except to help with his/her medications."
WOW, this is so hard for those supporting Lyme victims. Like I said, there have been many divorces as a result of the "loss of spouse" that Lyme brings. For starters, you obviously love him, or you wouldnt be looking for help. You can help by reading and understanding how he feels as well. He feels like he has lost control, because instead of taking care of the family, the whole family is now taking care of him. How humiliating this is for us as Lyme Disease patients. To not even be able to get the top off of a tube of toothpaste, well, you get the picture. And for those who are even more disabled, it can be worse, and sometimes, you withdrawl even more, because you feel the burden you bring, and therefore, you pull away, so they dont see or feel your emotional heartache. The best thing I can say, is to elicit help from extended family, and close friends, and talk to people who know about Lyme Disease, and/or your rabbi or minister for guidance, and/or a councelor who can help you deal with your own loss. Yes, the greiving is not only for the victim of Lyme Disease, but also the people that they depend on and who depend on them, who have lost the person that "was", and now have to deal with someone who is ill, tired, and needy.
Finally a piece of advice.....
COMMUNICATION is the key to any good relationship. If you or someone you love is suffering from the effects of Lyme Disease, make sure you talk about it, what you are BOTH feeling, and how you can deal with these feelings and the situations in your lives that have become more difficult. Obstacles in your life can be overcome, and victoriously at that, you just need to work at it.
Return or GoTo Lyme Disease Information Page
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