I came across an article or paper on a website earlier in the year when I was researching Lyme Disease. It is probably the greatest summary of late stage Lyme I have ever read. I know I have shared this with a few close friends and family but realized everyone may benefit from reading this. I hope you get a better understanding of Lyme and what it can entail from this. It really helped me to know what to expect...
Late Stage Lyme Disease, Patient Information
Can't lie to ya. Rough road ahead. In fact, getting well may be about the hardest and most difficult thing you'll ever do. But it's worth it! Stick with it! Never give up hope!
The first thing you should know is that it gets worse before it gets better. It can in fact get a lot worse before it gets better. It depends on how long you've had it, how much of the bacteria has built up, what strain you have, and many other factors as well.
The Lyme bacteria gives off a chemical toxin when it dies. When the antibiotics start killing them, the toxin levels in your body will soar and the symptoms can become intense. Physical symptoms include pain, numbness, swelling, tremors, and a myriad of others if internal organs are significantly affected. The toxin affects your mind as well. Typical symptoms include insomnia, confusion, disorientation, depression, anxiety and panic attacks. These will all go away as you get well!
As if the toxin affects weren't good enough, another fact about the Lyme bacteria is that is grows and reproduces slowly. At first that may seem a good thing, except that antibiotics are generally able to kill it only during certain stages of it's life cycle. The end result being that it takes a long time to get well, usually months. (Side note, I read something the other day that said to estimate 3 months of getting well for every year you have been sick. That makes my docs estimate of 3 years to hopefully be done with this about right. 3 years minimum) There have been cases of "miracle" cures in just a couple weeks, but these are rather rare. Just don't give up hope! Keep at it! Keep trying. It takes along time, but being happy and healthy again is worth it!
Of course we'd all probably like to have our mind functioning properly again as the first step in getting well. Unfortunately, that won't happen. your mind returns last, when just about all the bacteria are dead. Physical symptoms like pain and numbness go first, then the bacteria that didn't cause pain, and then, finally, your head begins to clear up. This can be very disconcerting when your body feels good but your head is still reeling. hang in there!
When you first start on effective antibiotics, you'll be in for quite an unpleasant surprise. Within a day or two you'll feel like you've been hit by a fully loaded military cargo jet flying at full throttle. your symptoms, including the ones you didn't even know you had, will flare up intensely. Try hard to tough it out. But if you find that you absolutely positively can't, and this is not too unusual, ask your doctor about lowering the dosage for a while, or pulsing on and off until you get through the worst of it. (This is why we started with herbal things first. The doc was sure I would end up in the hospital if we went straight to antibiotics) Sticking on the medication as prescribed, always taking them right on time, is your best bet for getting through it as quickly as possible. Don't give those nasty little bacteria an inch! This can be really tough, because it takes at least a few weeks (6-8), and sometimes much more to get through the brutally hard part.
If when you start your antibiotics, your symptoms don't flare severely, including ones you didn't know you had, then you may have a strain that is resistant to that particular antibiotic. Or, perhaps, your body is fighting the antibiotic and not letting it do its job properly. This is one reason that two antibiotics are often used at the same time. (Try 4 or 5) It is a judgment call between you and your doctor as to whether the antibiotics are being effective, and what might need to be done if they aren't.
Which set of symptoms, the physical or the psychological, will be the most difficult to handle is entirely up to the individual. Are you more physically oriented? Or are you a thinker? Some people are so happy-go-lucky and full of faith that nothing at all bothers them. In fact, may people are. you can be like them too. Just don't bother to worry about it! You're on the right road. The road to being happy, healthy and normal again!
Is it contagious? The answer is: no one knows. Spouses and siblings tend to all travel in the same places, so it is hard to tell if the disease was transmitted person to person or just infectious bites by different ticks. The long answer is: that since it's a blood-borne disease, as long as you don't go around biting people and bleeding on them, then not, it's not. As always though, better safe than sorry. (Everything I have read and heard from doctors says mom can definitely pass it to baby while pregnant, it is unclear at this point if spouses can pass it sexually)
A few annoyances you may encounter along the way, and should be made aware of if you're the worrying sort:
1. Confusion/Disorientation. Your short-term memory will probably be taking a nice long vacation. You may find yourself confused about where you are and what you're doing every time the scenery changes. Like when walking from one room to another, or driving. DON'T! (I don't drive long distances any more) Sometimes even when just sitting or lying around doing nothing. It could also be even more intense, with temporary bouts of amnesia. But it's a fact of life that vacations do end. This one tends to be about the most disconcerting psychological symptom for most people. Again though, it's caused by the toxin release from the dying bacteria. It will get better and eventually go away!
2. Numbness. Various parts of your body, both those you knew were infected and those you didn't, may go numb for a period of time. (Before I was diagnosed, I was at the computer and one side of face went numb for a minute or two. I thought I was having a stroke.) Quite often it's just for a day or so, but can also last for many weeks, until enough of the bacteria in that location have been killed that the toxin level finally drops. Don't panic! They all come back! The numb part that is! They'll eventually switch from numb to painful, and then finally to normal.
3. Pain. Same as 2), but may be sporadic pains instead of numbness.
4. It's in more places than you know. While you are on effective antibiotics the bacteria are NOT spreading. never had a problem with your back, but now it hurts? Forearms maybe? Wrists? They hurt now because the bacteria were there all along, and now that they're dying they're releasing toxins. It's the toxin from the dying bacteria that causes the numbness and pain. Dead bacteria is a good thing!
5. Insomnia. And not just at night either. you may find it impossible to nap during the day at all. you may get to enjoy every last minute of the worst part. As the toxin levels fall though, you'll be able to sleep better and better.
6. Hallucinations and voices. These can occur during times when your mind and body are exhausted but the toxins won't let you sleep. you may be trying to rest, but your brain gets stuck halfway between sleep and awake, dreams and reality mix. (Haven't really had this problem but my dreams are CRAZY!) Better sleep at night, along with less activity during the day, should help these symptoms disappear. Ask your doctor about sleeping aids you can use if necessary. However, if you get these symptoms while you're wide awake and have gotten reasonable sleep, consult your doctor immediately.
7. Tremors, shakes, and spasms. Can occur in various places to varying degrees. The length of time they last varies as well. These may be caused by bacteria dying near, and hence irritating, a nerve which controls motion.
8. Sweats, hot, cold, day, and night. Get used to them. You might consider adding just a bit of extra salt to your diet so you don't become salt/sodium deficient.
9. Fireworks, popcorn, or pin-cushion pains. These tend to feel like someone has picked a part of your body and decided to jab it with a pin a few times. Then they go and pick another spot. These are probably just irritations of pain nerves, or perhaps bacteria dying inside a nerve itself. You might notice that they tend to occur in your most affected areas, and that more effective antibiotics cause more of them.
10. Heart palpitations or irregularities. Notify your doctor immediately so that they can determine if the irregularities are severe enough t be dangerous. In some extreme cases, people have been put on a temporary pace maker until the worst of the symptoms have disappeared.(I hate the heart issues. I knew I had a high heart rate since at least high school but it wasn't bothersome until more recently. Would love for it go away when this all done.)
11. Dizziness and Vertigo. It's everywhere else, why be surprised that it's in your ears? Symptoms here can range from a feeling of "walking through jello" to complete loss of orientation.
12. Temporary Amnesia. really this is just an extension of memory loss symptoms, except that instead of just losing your short-term memory and sometimes long-term memory can go for a hike as well. These symptoms can last anywhere from just a few minutes, to a few weeks, and will probably only occur during the first month or so of treatment.
13. Aliens Under My Skin. Usually felt in the forearms or shins bun can occur anywhere, this feels for all the world like little turtle-shaped aliens crawling around in the affected area. (I call it the creepy crawly feeling, below the knees and in the forearms for me) These are actually associated with an attack by your own immune system against the bacteria and are probably the result of localized swelling and toxin releases from the bacteria dying under the attack.
14. Sudden bouts of weakness and symptom flares. Your body is fighting the bacteria alongside the antibiotics. But your body isn't always a nice steady predictable stream. Occasionally, and even frequently during the first cycle or two, your body will attack. Sometimes with an all-out-vengeance that will literally leave your knees weak and you panting for breath. In extreme cases, this can actually cause fainting. This can be very disconcerting if you are not expecting it. As long as your heart rate and blood pressure are OK, the you're probably fine. go over your drug allergy checklist and consult your doctor if you think it might be a delayed reaction to antibiotics. Normally, this feeling will drop in intensity within a few minutes.
15. Headaches. Can range from not at all if you're really lucky, to some really intense head-splitters. Do whatever you can to survive them.
16. Disconnection. Close your eyes, now where is your arm? OK, look at it now. Doesn't really feel like it looks where it is, does it? The extreme of this symptom is a complete out-of-body experience. As toxin levels fall, you should become more and more re-connected to your body again. An there you were thinking that you were just getting really good at your Yoga exercises...
17. Panic Attacks. you don't want to get these really, you don't. It's a feeling of "Oh my gosh, I'm going to b like this forever, I can't take it please, somebody just kill me and get it over with..." The only possible good thing about this symptom is that it goes away.
18. Bright Colors. Your pupils may dilate a bit. Indeed, you may find yourself wearing sunglasses, inside!
19. Hypersensitive Hearing. your ears may become hypersensitive to sound. In extreme cases, sound, even very quiet ones, can become painful.
20. Mood Swings, Irritability/Short Temper, Erratic Behavior. Again, all due to the toxin's effect on your mind. These will all clear up as you get well. These symptoms can be especially difficult for those around you to deal with. (Ask my husband about this one)
21. Yo-Yo. You'll be feeling like one. Up one minute, down the next. You might wake up feeling great one day, only to find that a couple hours later you're back feeling horrible again. Up, down, up, down, all around. Slowly, month after month, the downs will stop being quite so low, and eventually go away.
22. Whatever Else. Everyone is different, and the disease is quite well known these days for just how differently it affects different people. Any other significant symptoms that you are concerned about should be discussed with your doctor.
I decided to cut this short. The rest goes on to talk about some of the treatment and general things to help like diet,stretching, etc...and how to chart symptoms. This at least gives you a good idea, if you didn't have one already, of what this disease can do to you. I have had some form of I think everyone of those symptoms (except maybe the hallucinations) and some other ones. It is certainly a crazy ride. I guess that's it until I figure out something else to talk about.