Someone new to Lymenet asked for a list along these lines for newbiesbv; I hope this helps. [Editing to say I probably should have posted this in general rather than medical. Oh well]

Lyme disease and the tick-borne coinfections affect most aspects of everyday life, sometimes in subtle ways. Or ways that aren't subtle, but that you don't associate with Lyme and Co. So here's my list of what changes: I'm just going to say ``Lyme'' for short, but truly I mean all the tick borne diseases, since Bb all by itself seems to be pretty rare in chronically ill patients.

This is my opinion only, based on my own years of experience with LD, and that of friends and the folks I've met on the internet.

Exercise. Effect: reduced stamina and interest, ``air hunger'', and increase in pain. Suggestion: Slow down, focus on breathing, stretching, and gentle muscle toning, and watch out for the high-impact workouts:

--Lyme induces it's own brand of exhaustion because of its physiological effects, including hypercoagulation, toxins released by the bugs, impairment of the nervous system and the brain, and the effects on the hypothalamus, pituitary, adrenals, and thyroid. On top of that, your body is using a lot of its resources to fight infection. Lyme can cause severe damage to cartilage.

--Some antibiotics -- in particular, the quinolones -- can cause severe tendon damage. It's important to know if strenuous exercise is contraindicated with any treatment you're on.

--Lyme does poorly in well-oxygenated blood and endorphins help with pain control and in reducing depression, so exercise is a Good Thing. Exercise modalities that go well with Lyme are swimming, warm-water aquacize, yoga, tai-chi, cycling, and walking.

Work. Effect: loss of ability to concentrate, think clearly, remember, articulate, and stay awake. The anxiety and rage that Lyme can induce can be a real workplace problem. Suggestion: Cut back in hours if possible; eliminate every ``extra'' that you can. For example, fix the simplest possible meals, let the housework slide, limit your social engagements.

--For the most part, people at work really don't understand chronic illness and don't particularly want to. In fairness, the way we're set up in this country, it's not their problem--you can get the job done, or not. But don't expect a lot of empathy or accommodation over the long run. Find out what our medical leave options are, in case you need them.

--There's a tendency to plunge into projects when you're feeling good, and of course the deadline hits when you're having a particularly lymie moment. So monitor yourself carefully, and realize that if you're herxing, or your changing meds, you're liable to have unpredictably diminished capacity at critical moments. Allow yourself more time than you used to need....

--Some folks have accomplished remarkable feats of working or going to school despite Lyme. But this is not a contest -- do what makes sense FOR YOU, and keep in mind that you ultimate goal is to HEAL -- after that, you can go on and do what you need to do.
Emotions Effect: Lyme can make you anxious, enraged, impatient, scared, and libidoless. Suggestion: Realize that you are truly not yourself. Don't rush into fights.

--There's a lot of info on lymenet about managing anxiety, depression, aggression, and insomnia. Read up on it.

--Some of your feelings of wrath, fear, etc. are justified. Some are really not, and are purely a product of Lyme. I've said some horrid things, and had some horrid things said to me by my Lymie husband, that would never have been thought, let alone said, if not for lymeheadedness. Be ready to apologize after you've lymified someone, and get your family and friends to read up on Lyme if you can, so that they understand what it does to your brain and moods.

--Get some sleep, even if it's chemically induced, and some antidepressants if you can find some that work (including natural ones). And realize that the mood and brain problems do go away with effective treatment, and that what you feel is as much a real symptom of Lyme as your headaches, fevers, etc.

--Lyme can cause some majorly weird brain stuff, including hallucinations and seizures. Also autistic-like behaviours in children, dementia-like behaviours, bi-polar like behaviours, compulsive/obsessive behaviours...you get the picture. These do resolve with effective treatment. Just be warned so you don't totally freak if this happens to you or the lymie in your life. Google on "host management" and "parasites" and you'll come up with some fascinating research by zoologists, especially on toxoplasmosis and schizophrenia.

Family/Friends: Effect: Rages, anxieties, resentments, loss of libido, inability to do basic things that you always used to for your family (like keep the checkbook balanced or put meals together). Suggetion: Get the info for caregiver support groups for your family, have the LLMD talk to the family, give them the info on Lyme, be upfront about what has to change, and find a counselor to help you and them.

--Family stuff can be pretty awful. Most people really don't get it, and many Lymies feel very betrayed by the very people they thought would support them through their ordeal. There's the whole issue of wage loss, dealing with children, the horrendous expense of Lyme, and massive changes in everyday family life. And, let's face it, Lymies can be pretty hysterical and cranky to deal with. Come vent on Lymenet or wherever when you need to.

Diet: Effect: You probably need to make some major changes. Suggestions: Experiment and keep a journal. And discipline yourself to knock off the stuff that you knew wasn't good for you even before you had Lyme.

--Lyme has so many effects on the stomach that your ability to absorb nutrients and abx may be seriously impaired. And your stomach may hurt tremendously and cause eating problems. It's imperative that you eat as healthily as possible, and pay attention to any sensitivities, like gluten and dairy. It's a really good idea to do a good food allergy test, like the one the Great Smokies Lab does, and to check for Leaky Gut Syndrome. Many lymies experience hypoglycemia, and changing your eating patterns can make this a more manageable problem. Read up on your meds and find out what foods are contraindicated (as in, no dairy within 2 hours of doxy), and what has to be taken on an empty stomach.

--Be aware of the yeast overgrowth problem that abx users experience and adjust your diet (low carbs and sugar). You might need to eat more frequently to reduce stomach pain from meds. Drink a lot of liquids and stay away from alcohol, which puts an extra load on the liver and can promote yeast.

--Many Lymies experience weight gain. Some of that may be from the inflammatory and stress response; thyroid and adrenal dysfunction; reduction in physical activity; and who knows what all else. I found that drinking liquids, especially green tea, can help reduce weight gain to a degree.

Smoking: Effect: Aside from all the run-of-the-mill problems with smoking, it creates a lyme-friendly environment. Suggestion: Quit.

--This is not a knee-jerk reaction against smoking -- smoking really is a problem if you have Lyme. Smoking provides an environment in your blood that is very comfortable to Borrelia and other pathogens. It messes up an already messed-up stomach, and compromises your immune system.

--Lyme complicates the quitting scenario, because Lyme can induce compulsive behaviours, which smoking certainly is. In addition, the nicotine really does help improve cognitive function, but it's a small improvement for a huge price. And if you think non-lymie people who are trying to quit smoking are grumpy....well, the grumpy effect is supercharged for Lymies.

You and the medical profession and social services Effect: Loss of trust, confusion about who to believe and what to do, treatment paralysis, fear. Suggestion: Go to a real LLMD recommended by other lymies, explore all your treatment options (alternative and otherwise), talk to other lymies as much as possible, research, research research, and be your own advocate.

--You'll spend more time and money thinking about this disease, your health, and every aspect of your life than you ever wanted to or believed was possible. You'll spend anxious hours looking for doctors, hating doctors, sitting in waiting rooms, figuring out procedures. You might end up spending time in the ER with frightening symptoms and doctors who have no understanding of your illness or treatment.

--It's a good idea to keep a list of all your meds, your LLMD, and your protocols with you to take to the ER. Parents of Lyme children have a particularly hard time with hospitals and the interference of the medical establishment. Look this up on lymenet and be prepared.

InsuranceEffect: You may find your meds aren't covered, disability is denied, and the bulk of your LLMD costs are not covered. Suggestion: Find out everything you can about your health plan, document everything, and keep copies of your doctor's notes and your test results.

--The insurance question can be brutal. I can't emphasize enough how important it is to document every little thing. And the insurance issue can be a huge stressor when it comes to the decision to keep working; many of us have had to work way past the time we should have quit just to keep our insurance.

--Also, keep fighting for coverage if you're denied -- it's amazing how many people don't do this. Often if you fight long enough, they insurance companies find it easier to pay up than fight a lawsuit. There's quite a bit of collective wisdom on Lymenet about how to deal with insurance companies.

--For disability, it is critical that you keep documentation of everything; that you are specific about your FUNCTIONAL impairments. It's depressing and time consuming to do this, but it's necessary. If you're early in the disease, still do this -- you may recover beautifully and never have to apply for disability, but you don't want to try to start putting together all this information AFTER you're really sick and your brain is fried. Here's a link with some useful info about handling disability insurance: http://flash.lymenet.org/ubb/Forum1/HTML/027533.html

Income Effect: Lyme can wreak economic havoc on your economic situation. Suggestion: Cut down on expenses as much as possible now, and put away every dime you can.

You can party when this is over, but you may need that latte money for your doctor, your meds, or your rent. As for people who've already hit the end of their financial ropes, there but for extraordinary good fortune go all of us. Some help is available through community services and churches -- somewhere in General, Rita did a great post on this.

--This is one of the reasons I'm such a fanatic about promoting reforms like the OPMC bill--if only diagnosis good treatment were readily available and affordable, so many lives would be less damaged in so many ways.

Okay, that's all I can think of tonight. If I don't post this now, I'll forget.

Your post was absolutely EXCELLENT! Thanks for taking the time to write this up. Very helpful information for all. I've been looking at my lymeheadedness! Thanks for the reminder. We're lucky to have you in this community!

Thank you!

I just read part of this post and will go back to read more. But, I was thinking what a great idea as I was reading this.

I had a co worker tell me I needed to learn to slow down and move slower when this first hit.

(I think she has lyme but is refusing to see my LLMD. She is going with the CFS/fibro dx by local docs)

The point is...she was right. I am still relearning but it does certainly help me if I don't try to function at the speed I did before lyme and take things slow and easy. I usually can get through something then.

Then the big truck ran me over. I wasn't sure what hit. I did have a bite with a ring around it on my arm.

It is a whole new ball game now. I don't know if I have what it takes right now to take this post a step further for those of us who need in home health care and are functioning much lower.

Perhaps someone will come along who is having one of those windows of opportunity where he or she is able to function higher.

Mobility or lack of it:

Move the computer next to the bed and lay in bed as you type.

Use a power chair or have someone push you in a wheel chair.

When able to walk...keep it short. I find that I can do two 10 minute walks a day at times whereas some days I will go for 20 minutes and then be down for several days.

When using the power chair to get out and about I can go for an hour a day if I have a down day in between normally.

Keep things simple. When going to the grocery store, just keep it to a few things on those days you are able to shop.

It is the turtle that won the race not the hare.

Bathing...try taking a short bath in epsom salts every other day if possible. I no longer can shower and dress everyday.

Conserve energy...if you use it for one thing you will most likely not have it for something else.

You need to do what is the most important thing for you first since it may be all that you will be able to do that day.

Listen to your body. I have tried to over ride it and paid for it every time.

When things get overwhelming and frustrating...start to think of the good things you have going for you...don't focus on the negative.

Well...my brain is telling me it has had enough for now.

that was wonderful!

Uhm... could I possibly put this on my website? With a link to here or to your website if you have one?

'Cause I forgot to mention that aspect -- the huge loss of self confidence and concurrent increase in feeling fragile and vulnerable. There are many people on this board that conciously practice kindness in responding to posts; I wonder if you know how much you help others through those awful moments of feeling completely worthless. (And for those who feel like the anonymity of the 'net excuses you from the common courtesies -- SHAME ON YOU)

Kam, you've been so incredibly strong and resourceful. You're right, there does need to be a write up on how to manage when you're severely disabled and home bound. Your suggestions are great.

i never knew another lymie! to feel so alone and different. i don't feel like that anymore. whenever i'm really feeling like poop i log on...i instantly feel connected. i'm not a medical freak and cast away anymore. i have a lyme family that props me up without them even kowing it - just as you did right now.

I tried to watch and listen to the lighting of the Christmas Tree at the White House on the computer last night.

I had technical difficulties....a few words would come on and then cut in and out....now words although I know there were words there...so I should say no sound...then a stream of about 5 words in a row and then again cutting in and out.

I thought...that is how my mind works at times with lyme!

And yes....I too wanted to mention how I have noticed how difficult this is on the self esteem, how vulnerable we feel at times, etc.

You did a good job of explaining this too.

People see us for a few short minutes and some of us are able to fake normal during those times.

What they don't see is all the times we are not normal.

I tried to go to the local coffee shop today. It was a mistake. The owners said she had never seen me that bad as if it was a new thing.

It was a very normal thing for me. I just tend to stay home when it is like that. I would not have gotten out and about today if I had known.

But, since I had been down all day yesterday, I thought I would be OK. Wrong.

Paisley,

It is nice to know we are "normal" so to speak in the lyme world and other invisable disability worlds. Especially since this is such an isolating and misunderstood condition.

Caat...great website. I would really like to do something like that myself someday...only on travels. So those of us who are armchair travelers can travel with me.

It seems since I have come down with this, my mind travels without my body a lot.

It is not people I miss, but places that I have been that my mind recalls.

This is not the first time. When I was working 14 hours a day 7 days a week...my mind would take mini vacations to the mountains or the ocean and other places of nature I had been. I always appreciated those mini mind vacations.

I wish I could say that about myself, but I certainly can't. I'm just not very good at emotional support & don't always add common courtesies. I forget who's who sometimes too. I hope I haven't hurt your feelings or insulted you.

Thanks for permission to use this. It really is wonderful, I'm not just saying that, I mean it.

Thanks Kam I think that travel site is a great idea. A lot of us "travel" on the internet when we can't otherwise. I hope you're energy increases soon.