I have been more then sick for many years, even as I write this I find it hard to keep my head up long enough.
Most of it has been cognitive stuff. Nobody has a diagnosis for whatever it is. I had a random psychosis episode over the summer, but nobody knows what caused it. I don't have any other symptoms of schizophrenia or bipolar. I am now on anti psychotics to prevent it happening again. All the psych doctors are "baffled". I am on a number of drugs. A lot for psychiatric issues. Valium, Fanapt, Tegretol, Effexor. None of them help. I can barely leave my apartment some days. I can no longer drive. I usually end up starving as I have no energy to buy food.
I got diagnosed with narcolepsy, although it later proved false and nobody knows why I constantly fall asleep, and sleep anywhere from 12-16 hours a day, even when I wasn't on psych meds. Or why I daze out so frequently, as if I'm having seizures or cataplexy attacks. I have never been tested for seizures.
My joints hurt so bad. Sometimes they are so bad, I cannot force myself to lift them over the bath tub. I did a trial of percocet for a week, nothing. Ibuprofen doesn't help either. It's hard to keep my head up, to sleep more then four hours at a time, because I wake up in pain from staying still that long.
I have constant twitching episodes. Things like while moving my mouse I will lift it completely off the desk and slam it back down or while eating I'll fling my fork full of food the whole way across the room. Without effort on my part. This has been going on for the last year or so. It started before the anti psychotics.
I am disabled. I got disability due my very severe anxiety. I dropped out of college when I was 19 due to the anxiety. I have consistent panic attacks that make me feel like I am dying. I have no family history of mental health issues.
Before the joint pain started a deer tick, fully saturated just fell off my head. I went to my doctors immediately, knowing that it could very well have transmitted something. I am given a strong dose of doxy-something. One dose. I have no idea if this is protocol? I am told that I have no bullseye rash, so I am fine.
Years prior to this I have a colony of feral cats that I am constantly pulling these minuscule ticks off of. So small that they fit on the nose of Abraham Lincoln on the penny. I had to transfer the care of them over to someone else, as I can barely take care of myself anymore.
The woods next to me are covered in ticks. I took a friend's dog for a walk in them. A little white maltese. I brought him home to find over 25 nymph deer ticks on the top of his head. And a few females and males too. I burned them all, but I've been in those woods far more times then just that. I've seen every part of them. I used to love being outdoors. Now I can't even get out of bed half the time.
My doctors aren't taking me very seriously. I think because I have a mental illness. My joints have become so swollen at times with edema. This is what my foot looks like normally
and then when I am covering up the symptoms with a ton of diuretics that drop my potassium levels and make my life much more worse.
The constant nausea kills me. I have tried everything from pure ginger root to zofran and nothing works. I spent thanksgiving alone in my apartment on my bathroom floor.
My hair is falling out, I am getting rashes up and down my arms. Constant, sickening headaches. I have had CT scans, ultrasounds of the veins in my legs, more blood work then I know what to do with. Ekgs, and a few more tests. I finally saw the movie "Under Our Skin" And I demanded a lyme test. My doctor told me "It's not that". I asked him if he knew what it was then? He says "no, we'll just treat the symptoms". I told him to take it. Because he's not even treating the symptoms. I walk half bent over. I feel like he just thinks I'm being dramatic. Which is annoying in and of itself, because it means he doesn't understand the pain that I am in. He told me "You don't have Lyme, your sedimentation rate was fine". Half the time Lyme tests don't show Lyme, how on earth would a "sedimentation rate" show it...
If it comes back negative then am I safe and should I go look elsewhere? I don't have the energy to fight what looks to be like an impossible battle. I'm fighting insurance companies. I am disabled and live off of just over 700 dollars a month. I cannot afford what my insurance will not cover. I am tired. I am in pain and most of the time I question if I should be here at all.
I know from this experience that our country is far from free. That we do not have a choice in the matter of whether we are in pain or not, whether we live or die. I think the difference between us and those other countries, is that we are brainwashed into believing what we have is good enough.
Posted by Larae30 (Member # 35220) on :
I am so sorry for what you are going through. I was just diagnosed with lyme last week and am having a rough time facing the fact that I may not feel better for a while. So your dr. did do a lyme test finally? Have you tried looking for a LLMD in your area? I made an appt with one and it's going to be a 2 day trip because there are none around me. I am going to have to put it on credit cards etc... but it is worth it to me to be in more debt if I have the chance to feel better. Wishing you the best. Also, I totally agree with your last paragraph.
Posted by Tincup (Member # 5829) on :
Hey Mission...
Sorry to hear you've been so sick for so long. My heart hurts for you.
Please contact the Southeast Pennsylvania support group to see if they can help you.
And at least know you are not alone. If you have questions we will try to help.
Posted by Carol in PA (Member # 5338) on :
Yep, that's edema!
You sound like you're having a miserable time of it. Many of your symptoms look like low magnesium. Lyme Disease can cause low magnesium because the Lyme bacteria use up the mag in our muscle and nerve cells.
This is something you can do for yourself...take a good magnesium supplement and eat foods high in magnesium.
DO NOT buy magnesium oxide. It is cheap, but is not well absorbed.
Another thing that should help you is Omega 3's in fish oil. Pharmaceutical quality fish oil is not cheap, but can really make a difference. It will improve the integrity of the cell membranes, so that nutrients can pass into the cells, and your brain will work better.
Country Life Omega 3 Mood is good too, and is much less expensive. Good prices at Amazon.com and at Vitacost.com.
The sedimentation rate measures inflammation in the body. A systemic (bodywide) infection like Lyme causes inflammation, and this causes symptoms like pain and swelling.
When I was diagnosed with fibromyalgia, my sed rate was very low, and then a couple years later it was 30. I've read that some people with chronic fatigue have a sed rate that's lower than normal.
Posted by MissionUnaccomplished (Member # 35289) on :
quote:Originally posted by Carol in PA: Yep, that's edema!
I ordered a magnesium supplement from Amazon and I'm already on omega 3s for other health reasons.
I see you're from Lancaster, I am from Harrisburg area, do you see a Lyme Literate doctor in the area? I emailed the runners of the board and they gave me someone in MD. I would prefer my own state, because then maybe I could get insurance to cover it.
Posted by Larae30 (Member # 35220) on :
Is it safe to take magnesium while on abx?
Posted by Tricky Tickey (Member # 26546) on :
Mission, I wish you good healing thoughts. Keep fighting this thing and continue to lean on your support system. I got a lot of good help here on Lymenet. I hope you can get to an LLMD soon. You deserve some happiness and healing.
Posted by lou4656 (Member # 10300) on :
Mission -- Please send me a message. I have a couple of names of people that may be able to help you.
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