I was wondering if anyone had any good literature/articles/information on the neurological effects of lyme?
I know it sounds dramatic, but sometimes I'm convinced that I have a brain tumor. I've had pretty bad pressure behind my right eye (it literally feels like it's inflating sometimes), a dull headache behind that same eye, a creeping sensation in my temples, and severe dizziness and nausea.
I also notice myself getting really confused and forgetting things a lot of the time. It makes me want to cry because I just get so afraid.
I definitely want to go for a CT or MRI to be on the safe side, but I'm really afraid and was wondering if anyone could shed some light on this?
Thank you for your time Posts: 39 | From marlborough, ct | Registered: Nov 2009
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BEFORE you have any kind of brain scan, it would be best to look through the links in the first two threads.
If you think lyme might be possible, then it's best to be assessed by a LL (lyme literate) doctor who is ILADS-educated.
If a brain scan is desired, it's best to be ordered by, and read by someone who is LL. A LLMD will know the specifics to order and the best professionals in your area.
posted
I know exactly how you feel. I too thought I had a tumor. I did have a MRI to rule it out before I found out I had lyme.
If you want a scan and can get one, then I would do it just to ease your mind. I had all the same things as you and it was lyme..
I would completely forget what I was saying or forget the right words to use. My husband was always finishing my sentences for me.
I had to write everything down because I would forget.
With treatment, is has gotten better but I am no where near back to my old brain..
I had the dizziness so bad that I would not take a shower because I thought I was gonna fall out.
When the dizziness was really bad, my Dr. prescribed me Meclizine and that did help.
I have also found that you really just have to put your life in Gods hands. When I get anxiety about my symptoms, it just makes everything extremely worse.
Sometimes, you just have to let go of the worry because it will not get you anywhere.
However, I totally understand the worry.
God Bless You!
Posts: 137 | From Illinois | Registered: Jan 2010
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I'm pretty sure this means I am postive - surprisingly, my conventional GP was the one to diagnose me.
Unfortunately, they're all about throwing doxycycline at me to take for three weeks and that's about it.
I am really afraid to get a scan since my immune system is terrible and I really don't want to expose myself to any radiation especially because I have something called endometriosis and am more susceptible to brain cancer as it is.
I am seeing a naturopath a couple of weeks from now who has treated lyme so I'm hoping he will be able to help, or at least point me in the right direction.
willo7- Thank you so much for your insight. Knowing there is someone else out there that feels like me is enough to make me feel better.
Sometimes I say the wrong word in a middle of a sentence... it has been getting worse, and I get really upset when this happens.
I used to be such a smart, astute individual. Now I just feel like my brain is getting worse every day.
I really appreciate everyone's help and opinions - thank you for taking the time to respond!!
Posts: 39 | From marlborough, ct | Registered: Nov 2009
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posted
There is an excellent lyme doctor very close to you. Private Message me if you want the info. Just click on my name and then click "send a private message."
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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I have those exact symptoms and I too want to get a brain scan. I cannot help wondering if there is some sort of tumor. I also get numb on my right side of my body and sometimes it feels like my legs are completely disconnected from my body. Even though other people have similar symptoms and it's probably lyme, I think it would just give us peace of mind to rule things out.
Posts: 87 | From NorCal | Registered: Feb 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
cjb, what you are describing sounds like babesia. When you are treating one infection, like borellia, another one will come to the surface. Babesia is not affected by drugs for borellia. You need to take anti malarial drugs.
Babesia causes dizziness. You can have ataxia which is trouble walking; weaving from side to side as though you are drunk You can have vertigo which is violent spinning when you move your head to one side. And there is just the feeling of being completely spaced as though you are "walking off a mountain top into the clouds".
Babesia affects your ability to think, remember and concentrate. You lose your train of thought and generally feel profoundly retarded.
It causes horrible headaches. Mine were often behind one eye and I confused them with migraines.
Your feeling like you could cry and being scared are babesia related as it causes anxiety and depression. You might also feel less motivation to do anything - loss of spirit.
Other symptoms of babesia are extreme fatigue, lack of stamina,, air hunger/trouble breathing, muscle pain/cramps in the large muscles, feeling hot/hot flashes and sweating. If you have babesia duncani you do not have much, if any, sweating.
Because symptoms overlap I overlooked my babesia for three years. Also you may not have the classic symptoms, like air hunger, until you are really sick.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Wow, I've been wanting an MRI also. Although brand new to this forum, I have been researching Lyme since receiving positive Western Blot LabCorp on Jan 4, 2012. I have my first LLMD appt one week from today, and I really want him to test me for coinfections. My father was a doctor, but he is deceased, yet he has a few friends that may help me get the MRI. I am not dizzy but brainfog is getting worse, headaches getting worse, and I couldn't remember the word 'shower curtain' last week. I have to pause mid sentence sometimes because I can't remember what we were talking about. I had to look around for clues this morning to remind me whether or not I washed my hair last night. What would an MRI possibly show if I had Lyme?
-------------------- GlitchyMomma Hashimoto's Thyroiditis dx July 2003 Cholecystectomy March 2010 Vit D3 Deficiency 2011 Progesterone Deficiency 2011 Adrenal Fatigue September 2011 Labcorp IgG 23 Positive, IgM 39 Positive, IgM 41 positive January 2012 Posts: 31 | From Louisiana | Registered: Jan 2012
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posted
Hi, I am sorry. I was told if you look straight up & feel pain behind your eyes means fibromyalgia,just 1 of many headache signs goes with. M is just part of 1 many co-infections I am sure. Prior to neurontin could not say straight sentence. Now still forget simple words or speaking & it goes away(comes back later), what I was trying to say. When worked at pain clinic everyone told me even worse pain is brainfog, that bothers & embarrasses them so much. All just to sad 100 symptoms, why he inke are crazy.Hugggsss, Kerry BTW/I live in Fl unable to geteted b one & he stopped after 5 weeks,scared to go further.Yeash, so up all last night just suffer along from head to toe. You may want for peace of mind as said try it.
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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