I know that I've been a bad blogger lately, but I've had more than one good excuse for the dearth of posts.
For one thing, I am currently in a MAJOR battle with Anthem Blue Cross....they have denied me treatment with intravenous Rocephin, which is an antibiotic that is good at penetrating the blood-brain barrier and is the preferred treatment for people with late-stage neuro-Lyme (like me).
And this is only one of the huge issues that are now currently consuming my life. Another big problem is that we are losing our home...we have already started the short sale process and have found a place to rent near the coast (beach town). The coast is the preferred destination because of my extreme sensitivity to light and heat, due to my lupus and Lyme disease and Babesiosis (a Lyme coinfection). We hope it will be cooler and cloudier there, which will help prevent frequent lupus flares. So I'm trying to pack to move in less than two weeks (AAAACKKK!!)
Lyme disease is definitely a good topic for this blog; Lyme disease generally causes gluten intolerance so, just like people with celiac disease, Lymies should avoid gluten as well. In fact, it is best to be low-carb, grain- and sugar-free if you have Lyme disease, because carbs/sugars feed the little buggers.
Without further ado, I will reproduce a wise and wonderful post by Minoucat from Lymenet; it explains all about how your life changes if you have Lyme disease. Even if you DON'T have Lyme, but are chronically ill with lupus or MS or CFS or some other nasty autoimmune disease or syndrome, you will probably see yourself and some of your daily problems in this article. The original post may be found here
Lyme and everyday life — what changes?
Someone new to Lymenet asked for a list along these lines for newbies; I hope this helps.
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.
--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 behaviors in children, dementia-like behaviors, bipolar like behaviors, 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). Suggestion: 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 behaviors, 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.
Insurance Effect: 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
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 on Lymenet 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.