posted
hi all. I read the post on seeking a doc that I should post a bit about myself so here goes.
I am confused about something though, it seems like there is a almost a lyme conspiracy. Can someone tell me whats up with that and why LLMD have to be secret? If not here I understand, you can email me.
Well, I'm 27, married and we have a 3 year old. I have felt like crap for a while, but I just thought it was tired from being a mom, stress, smoking, so forth. I had some random things pop up that I'll talk about later, but I ignored them. Until I had my first real neurological attack over christmas break....maybe some things are TMI but I need help and not sure what to think.
It started around dec 15. I was at the store and I got vertigo, dizzy and saw spots. the lights were really bothering me. I left the store and blamed it on tiredness again. It wasn't the first time I had visual disturbances. Little lights at the corner of my eye, dancing dots, blurry visions sometimes, double when waking up occasionally.
So about 4-5 days later, inbetween I remember being so tired. As usual, but worse. Well one day I woke up and I couldn't urinate. My bladder was full, but I couldn't go, had to force. I went to ER thinking stone or UTI? (history of stones) My blood and urine and CT were fine. I also had the usual pain around ribs that I always associated to stones. I was sent home and was totally confused.
next day woke up and couldn't urinate again, then all day and all night I was urinating like every 15-20 minutes. Insomnia...
Next day, woke up and could go, but went to lay back down. From the waist down I went tingly-prickly numb feeling. I described it as numb because I had the sensation my legs and stuff wasn't there, but it was more tingly. it went away after about 20 minutes, and I went back to sleep.
when I woke up I had terrible balance and coordination. This lasted for weeks, and I still have this problem although it is better than it was. a 3 week period I could not even function. I kept dropping stuff, and I was sooooo tired. I then begain twitching for a few days, whole body twitches, or the feeling of a bug under my skin.
The worst of it wrapped up around the 27th or so. I now feel not all there. spacy, irritable (this isn't new) tired very easily, nervous, balance and stamina are worse since the attack.
I did much researching and have ever symptom of MS, but also of Lyme. My neuro is not a good one unfortunately..
My radiology report states I have lesions and abnormal signal in periventricular white matter. one is 9mm, one is 7mm near ventricles, two 2mm and a 3mm abnormal signal. I had this done about 12/30.
But my neuro never told me this. He said I have a 'few dots the size of the tip of his pen that he thinks are normal' He doesn't think I have ms and he isn't very thorough or acts like he cares. I am 27 years old, you don't just wake up and all this happens..
I do remember a round rash around 8 mths ago or so. I thought it was ringworm and I used antifungal cream. It took a while to go, but it eventually did. It could still have been ringworm and I might have something going on in my brain like MS or something. Doc says doesn't think it is MS bc of normal MRI, yet doesn't explain to me why there is such a huge difference between their reports.
ANyways sorry so long. I am so depressed and scared and feel alone. My husband tries to understand but he doesn't help. I know he gets stressed to, but I'm tired of being told to push thorough it (get over it). I begin student teaching next week and my cognitive ability has worsened.
So that's my story if you read it, thanks and hope to ttys.
Posts: 2 | From wheeling | Registered: Jan 2009
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I'm sorry you are having these problems. My daughter and I both have Lyme.
My daughter has the problem you describe - the urinary problem. She has a full bladder - but can't empty it completely.
When she can go, it is only a couple tablespoons worth and so she is up (especially at night) every 15 minutes or so.
Needless to say - she gets no sleep, especially the very important REM sleep necessary for healing.
This is the activity of Lyme. It will likely come and go, but sysptoms will show up else where as it migrates and moves about.
What makes you think you had ringworm? Did one of your pets have ringworm? It is not common for a healthy adult to get ringworm out of nowhere.
I wonder if you had an EM rash. I do think you should see a LLMD (Lyme Literate Medical Doctor) as soon as possible.
8 months is enough time to experience the neurological and physical problems you describe from Lyme bacterial infection.
Don't be concerned about the conspiracy stuff at this point, just get yourself looked at by a LLMD and tested and treated.
The vertigo stuff can be serious, so be careful with that - no climbing ladders or trees - okay?
Good for you for doing your own research.
You will find this is just the beginning and you will fair well if you constantly learn and educate yourself on Lyme and possible co-infections.
Good Luck and Best Wishes -p
Posts: 641 | From So. CA | Registered: May 2008
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bettyg
Unregistered
posted
jesse, what a wonderful, informative post, and don't worry about the length, and BIG THANKS for breaking it up for readability/comprehension!
if you go to my newbie package, read table of contents and look for CAMP A VS. CAMP B, IDSA VS. ILADS.
now WHY NO NAMES AER POSTED OPENLY, go to ACTIVISM forum, read at the top about DR. JONES, OUR NO. 1 KIDS LLMD IN USA, and his beginning his 3rd year of MONTHLY HEARINGS costing him/us $100,000/MONTH OUT OF POCKET !!
it will tell you what our llmds/us are up against.
bottom line, when you got lyme disease, you are now in a LYME WAR CONTROVERSY that none of us asked for.
glad you found us! we're hear for you
IP: Logged |
posted
Hi Jesse - there's a lot to learn about Lyme and how to treat. Bottom line is you need to get to a Lyme-treating doctor.
A few aids to help with the understanding:
There's a new movie out about Lyme disease, called "Under Our Skin", from www.openeyepictures.com. It's available as a DVD and will be coming out in general theaters maybe by March.
There's a new book out, "Cure Unknown: Inside the Lyme Epidemic", by Pam Weintraub, that can explain some of what you're asking about.
Treatment for Lyme includes efforts to kill the organism, and counter its impacts in the body by detoxing and strengthening our biochemistry.
We all try various remedies to treat our symptoms. I'd like to say that for the eye symptoms you mention, I've found that a juice called mangosteen juice is able to stop all my eye symptoms.
The juice is an anti-inflammatory juice. There are lots of varieties available in healthfood stores, online, one sold multilevel. I drink the Ultra variety, which I order online. If you try it, go slow and drink a lot of water, as it can be powerful.
Take your time to learn about it all and to make choices about what you'd like to try. You need to cut yourself a lot of slack here and go gentle on yourself as a mom and teacher, since we have an illness we have to treat.
Take care - Robin
Posts: 13117 | From San Francisco | Registered: May 2006
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Welcome Jesse! Glad that you're here on Lymenet.
One of the first things I did after finding this site was to find the closest LLMD and then I went from there.
This is a wonderful site for different types of information on traditional and alternative medicines.
Read up on stuff in the newbies package. It's got great info in there.
Also this site has pretty good search capabilities.
Best of luck to you on your road to recovery.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6161 | From Columbus, GA | Registered: Jul 2004
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