Tuesday, November 2, 2010

FAQ's - all your questions (well many) answered!

Just posted this as a permanent page at the top of the blog, but think enough people have asked me that I want to post it as a blog entry:

Because I get so many inquiries in person about what the symptoms of Lyme are and what the prognosis is (every Lyme patient gets chills down the spine being asked this question), I decided to make an FAQ dedicated to just those questions.

It's honestly frustrating for me to talk about in person (4 years into it), and exhausting. That's part of the reason I created the blog, so my friends and others could understand what symptoms I am feeling but that they cannot see. That way, they know my story; and I can try to live as much of a normal life as possible, focusing on other things in life besides Lyme....I don't want to act like a sick person, and talk about it all the time. I have to live as much of a 'normal' life as possible. Much if not most of the disease is completely invisible. Below is copied from the "My Lyme Story" page at top of my blog:

The answer should really be what ISN'T a symptom? This disease manifests differently in everybody and the type of symptoms this disease creates are so widespread and honestly more hellish than anything I could ever even imagine. Here's a list of the ones that plague me (and most Lymies, yes I said Lymies):
• heart palpitations that make you feel like you are having a heart attack
• chest pain, inability to breathe or get oxygen to Lyme-infected heart and lungs
(a good portion of Lyme patients, myself included, have gone to the ER more than once for the above symptoms because it literally feels like you are having a heart attack)
• bone-crushing fatigue (as in sometimes you can barely make it to the bathroom or down the stairs); on good days I can go to the store and buy myself some stuff and maybe go for a 10-20 minute walk and do some computer work as long as I slept 10-12 hrs the night before and have a nap
• dental & jaw pain to the point you cannot eat anything cold or hard for days
• vertigo and dizziness that make you feel like the world is going up, down, swirling around, and someone gave you a bad dose of some hallucinogenic drugs and the experience never ends, sometimes the ground feels like it's moving up and down
• weakness
• fevers, chills, nightsweats (80% of the time I have one of these to a certain degree)
• endocrine dysfunction, which can cause disorders of thyroid and adrenal glands
• INSOMNIA, the kind where you take 2-3 sleeping pills per night and still only sleep 3-4 hours!
• excruciating joint, and muscle pain EVERYWHERE (to the point you cannot turn a doorknob or type a word because your wrists hurt so badly and it feels like someone is knocking a 50 lb. hammer directly onto your neck and spine)
• electric neuropathic pain that feels like you are being electrocuted
• migraines, headaches
• nausea, stomach pain, organ pain, inability to eat
• auditory and visual hallucinations
• extreme noise and light intolerance (think no music, sunglasses even at night, inability to watch TV for long periods of time)
• Rashes
• memory loss, complete and utter loss of cognitive ability (as in I put scissors in the freezer and got lost when my dad dropped me off at Whole Foods once, IN the store)
• short-term memory loss, confusion, word-finding difficulties, major visual disturbances (blurred vision, even had a herx so bad where the entire house was 'cloudy' and covered in fog and all I could see out of my eyes was a thick fog vision for 10 hours straight - scared the crap out of me),
• numbness and tingling in toes and fingers, inability to feel parts of your body at times
• depression, anxiety, weird psychological manifestations of all sorts, irrational rage (yes it's real and called "Lyme rage" wanna see my break a table after someone yells at me?)
• dizziness and lightheaded-ness, especially on standing, the spins, like a hangover x 20 but for weeks at a time
• Ringing in the ears, buzzing in the ears that makes you feel like you are hearing dolphins from thousands of miles below the sea
• Eye pain and blurred vision
• Extreme intolerance to heat or cold; especially freezing hands and feet and bum for some reason
• Shaking, tremors
• Seizures - the WORST thing ever. I've only experienced these about 2 times while on IV, and infusing too fast, and it was most likely a herx (die-off reaction) or maybe drug toxicity as my doc said since I never had these before IV, but it was TERRIFYING, couldn't speak, stuttering, couldn't hear what my mom and grandma were saying, total confusion, shaking, then my body went limp and was extremely exhausted and unable to move, crying, and limp/weak for hours after. It was like I inhabited another person's body and felt I was about to die. SO FRICKING SCARY. None since then. So now I go SLOW on all meds.
•Depersonalization, feeling like you are not present or in your body

The worst part of this disease is that your symptoms and level of ability to function can literally change by the DAY, the HOUR, even by the MINUTE. Up, down, up, down.. I was on different treatment, addressing different co-infections, and when you ignore one, another creeps up. Then you need to knock that one down. Then Lyme creeps back in. You have to keep changing the game, the drugs you use because the bacteria get smart, and figure out what works.

Then the treatment itself, like chemotherapy, makes you sicker than sick. Then you feel a day or two or even a week or month of improvement. Hallelujah!! You feel good!!! At the beach, laughing with friends. Boom, then you're bed ridden for 3 days. It makes NO sense, it is not linear, and one just has to accept this as long as you know you're generally trending upwards.

I love my parents, but even after watching me battle this disease and learning all about it, they still ask me, "what happened? you were fine just 3 hours ago!" What happened? It's called Lyme. NO RHYME OR REASON.

One minute you're standing up in Target (after browsing around for only 15 minutes) and 3 minutes later you are scooting on your ASS down the aisle at Target while people stare at you because you can no longer walk or stand up without collapsing from weakness and they think I look totally healthy (yes, this happened to me and I had to scoot to the front and page my mom in the store to come get me, it was like being 5 years old again). Then you're crying in the car and have traumatic memories of Target.

I'm sorry to sound rude, but this question makes us Lyme patients cringe, want to vomit in the mouth. You know, kind of like Dee, It's Always Sunny for those of you who watch that delightful TV program (that has seriously saved me with laughter). (Late-stage) Lyme is such an individual disease with no set protocol of treatment (there are dozens of Chinese herbs and more than 40 drugs to choose from and many different variations of symptoms in different patients that make each individual so unique that no set pattern or treatment protocol works for every person). Because of the co-infections (Bartonella, Babesia, Ehrlicia, etc.) AND the Lyme, it is basically like treating 4 full blown Lyme Diseases, and balancing treatment and symptoms of each tick-borne disease. Also, the more drugs patients rotate, the better. I have been on 5 different oral meds, and now that I'm on IV, have done IV Merrem, IV Clinda, IV Levaquin, IV Zithromax, IV Rocephin, IV Doxy, and probably will go through a couple more. After a drug has done its job, it's on to the next one. Kill the other bugs....so you see, there is no answer. The prognosis is different for EVERYONE.

No doctor can ever tell you with certainty WHEN you will be better or WHAT will make you better. If this uncertainty is frustrating to you as a friend, imagine living it. It is enough to cause you to want to give up on life sometimes. They estimate based on the thousands of patients they have treated, but we are all so different.

Symptoms come, go, good months happen, 10 steps forward, 5 steps back, etc. Chemotherapy is toxic; therefore, taking IV meds - basically the same principle behind chemotherapy - inevitably means getting sick before getting better. The darkness before the dawn. As long as my numbers are going down (which they are), and generally I'm trending upwards, that is good. I would have expected to be done by now, but my body is UNUSUALLY sensitive and so many meds that helped clear my symptoms and kill the Lyme damaged my organs temporarily and made my stomach so raw I couldn't eat for weeks. So I had to stop a lot of those good treatments. But my doctor told me it was necessary to keep my liver, pancreas, and stomach. I joke, but you can see how desperate you get to get the treatment in you. You almost want to risk anything.

Now you see why there is no straight answer to the prognosis question. I also believe a LOT of recovery has to do with mind-body-spirit and the emotional place you are in. Once you have accepted this, forgiven yourself for not being what you thought you were going to be at 33, forgiven the stupid doctors and the world and God and fate and the Universe and your family and whoever you want to blame for this situation, let go of the anger, sat through countless months and years of crying over lost life and experiences, then you start to see the light at the end of the tunnel. You start to see yourself as healthy, with Lyme as part of something you deal with, but not your defining characteristic. Soon, it will be a blip of my life and GONE. For now, it occupies a lot. But I don't think recovering from any disease completely is possible without examining and digging deep (and I mean DEEP) into the emotional baggage that is attached to and surrounds the disease process.

It took me YEARS to find people who fully recovered from Lyme Disease. I had to scour the ends of the Earth to find people who knew them. But they exist, and now run, go to grad school, work, run triathlons, have kids, travel, drink too much, and have normal lives. I have to believe I am one of them; I have to believe no matter WHAT OTHER stories I hear (and believe me there are a LOT of tragic stories, people being sick for 10 years, etc.), I have to believe that I am different. And I DO. Just some days, I need reminding.

All my friends and family tell me, "Mona, if anyone can beat this, you can" or "You have more strength than anyone I know and you WILL get through the other side" or "You are NOT like those other people who are sick. You are Mona, you're different."

My good friend Bryan emailed me the sweetest thing that made me have renewed faith in myself: "Like I told you, Mona, you are stronger than 99.8 % of the people out there. Things that would kill others are stuff you have the strength and determination to laugh at. I love you Mona and as much as it kills me to see you going through this, I know that it's turning you into a person that will be so special and capable of so much when this is all over. I know plenty of people that would've given up a long time ago. The things that I say to you about your strength and determination are not things that I would be able to say to a lot of people with the same conviction as I can say to you. If I were getting these kinds of emails from any number of other people, I would have serious concerns about the person's future" This makes me HOPEFUL. But wouldn't any good friend say that to you? I mean, AM I different? I'd like to think so, that I have what it takes to push mind over matter through this. But on days when I feel like a pile of shit sandwich caked inbetween two other shit sandwiches, I wonder if I am all that different, why am I still so sick sometimes? As Katherine - my dear friend says - I just feel so sick b/c there are so many of those damn little Lyme buggers exiting my body those days. I like that image.

...Post note....the shit sandwich days are the chemo-like days, the days when round of treatment is new and that's when it kicks ass, like it's supposed to. That means the drugs are working. I have been feeling pretty good the last week after getting over the hump of the first 2 weeks of this new treatment..and I infused last night!

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