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Posted 4/10/2013 2:13 AM (GMT 0)
My Lyme is definitely tick-borne but another way to get is through pregnancy as it passes to the fetus via the placenta. How many women don't realize they even have it thinking they have CFS, fibromyalgia, ALS, MS, RA, etc.?

Some are even asymptomatic carriers. Tons of babies have to be infected I would think.

Post Edited (ToddPaul) : 4/9/2013 8:28:23 PM (GMT-6)

Posted 4/10/2013 2:18 AM (GMT 0)
Thanks ToddPaul,
I have also heard that it could possibly be spread via saliva or sexual intercourse, but don't know how reliable the data is on that one.

One possibility (that many LLMD's believe) is a large percentage of people have Lyme Disease but it often doesn't manifest itself until something else draws it out (other illnesses).
Posted 4/10/2013 4:00 AM (GMT 0)
Hello Andy Cotton Candy, may e you can email me. I live in eastern WA too and am curious about others experience. I feel so isolated like im the only one here who has gotten lyme. The local docs dont seem to think it exists around here! Yes im a christian and i am clining to faith for strength in these times :)
Head pressure has been bad today, like my brain is going to pop out my temples this time ;(
Posted 4/10/2013 11:24 AM (GMT 0)
Has anyone here tested positive for Babesia, doesnt have the classic night sweats, etc., but has horrible head pressure?
Posted 4/11/2013 1:32 AM (GMT 0)
Well I didn't get bit by a tick and never had anything that looked like anything so I believe this lyme thing is bigger than anyone has a clue........makes me mad that we can't get any actor to promote our cause.  That seems like the only way things get recognized in the United States! 
Posted 4/11/2013 2:06 AM (GMT 0)
andy cotton candy,
I agree, something has to be done about this.
There are FAR too many people suffering from this disease. To make matters worse, many aren't able to get the help they need in order to treat the disease. Many don't even know they have it, and consequently suffer.
Posted 4/11/2013 2:13 AM (GMT 0)
Wow Aklyme I feel for you living where it is -25 below. I hope you start to warm up soon. I really think the sunshine does help not sure if it has anything to do with the lymes or just a better attitude. Do you have a blue light? It seems to help some for me with the gloomy weather we have.
Posted 4/11/2013 2:22 AM (GMT 0)
andy cotton candy,
Well, it has warmed up to -11 below today, so it's a heat-wave :-)
I've heard the sunshine really helps people with Lyme. Summer is on its way, which will be nice.
Not feeling very good this week for some reason, not sure why.......the pain and the dizziness are hitting me pretty hard.
Hitting the sack early tonight - Good night everyone!
Posted 4/11/2013 7:29 PM (GMT 0)
Has anyone had any numbness symptoms.....like parts of their face going numb?
This has been happening to me the past few days......really odd
Posted 4/11/2013 7:40 PM (GMT 0)
Sometimes 1 cheek is entirely numb, mostly the right side. It doesn't happen very often. It happens more often with one side of my torso.
Posted 4/11/2013 7:43 PM (GMT 0)
Thank you MarieLS,
I'm beginning to wonder if the numbness is related to some Silver Sol that I began taking......not sure.
The pain in my head is very severe and feels like it has spread rapidly from the back of my head to the front now...like the whole left side of my head is being affected......
Posted 4/11/2013 8:03 PM (GMT 0)
I don't know anything about Silver Sol - maybe someone else?

I have noticed though that one side of my body is always worse than the other, left side has much more symptoms than the right side...

I get relief going for osteopathy or fascia therapy. It takes away the worst tension. I take muscle relaxers too, just before going to sleep - and staying warm is also important (I see that you live in the colder part of this world...).

A long while ago I got the 'heavier' kind of painkiller (Zaldiar=tramadol+paracetamol) that is good for nerve pains. It was efficient, but I didn't use it for a long time, cause I felt it was addictive... stopped before it was too late.

Posted 4/11/2013 8:11 PM (GMT 0)
Thanks MarieLS,
It's really bizarre because I don't have any pain in my body.....everything is centered in my brain/head. The frustrating part about it is that I've taken a lot of different medications in the past (18 or so over the years), but I know they are addictive. Now, it seems like I need something stronger than the seroquel I'm taking (160mgs) at night to put me out.
Not only do I live in Alaska, I now live in a remote village with only 350 people....talk about being in isolation. At this point, I am in too much pain to go anywhere, and and have temporarily been staying with my folks while I try to get through this health crisis. They don't really have any idea what the pain is like, so they say things like "well maybe get a good nights sleep and tomorrow you will be able to go for a snow-machine ride." lol

I sure wish a good night's sleep would take care of it! :-)
Posted 4/11/2013 10:00 PM (GMT 0)
Aklyme you sound like me......everything is in my head and I am numb from my nose down to my chin it gets worse with my anxiety which has been my worse symptom. I don't remember things and I can't read more than a paragraph or two........my life is not my own anymore......I know I look forward to going to bed to put me out and hope that tomorrow will be the day its all over!

I keep praying for us all to have healing. Keep up the faith.

There is this quote True faith is trusting in God when you don't know the answers.
Posted 4/11/2013 10:27 PM (GMT 0)
andy cotton candy,
Thanks for the information - I'm exactly like you in the respect that I can't read more than a paragraph or two. I sure hope that my long term and short term memory comes back - It's scary when your memories start to disappear, I almost feel like it is some type of early onset dementia, that's what it seems like.
How do you get through your day-when you are dealing with your numbness and anxiety? This is what I am having the hardest time dealing with. I am too sick to really function at doing anything, and when I try to concentrate on something it's almost like it makes it worse. So, my life revolves around being on the computer for a few minutes here and there, or trying to push the negativity from my mind. I was on an antidepressant before, but have weaned off of it. Sometimes I think I should try another....but they've never really helped me before.
Do you have any symptoms of agoraphobia, or not wanting to go outside and be around other people? This is one of the hardest things I am dealing with - I don't want others to wonder what in the heck is wrong with "that" person.........lol
Posted 4/11/2013 11:00 PM (GMT 0)
I just ran across this article on rhodiola rosea. Not only is this herb supposed to help with depression and anxiety, it may help with Lyme Disease

http://www.foxnews.com/health/2012/03/07/rhodiola-rosea-natures-anti-depressant/

He recommended it to his wife, psychiatrist Patricia Gerbarg, M.D., who at the time was suffering from a particularly debilitating case of Lyme disease. Soon after she began taking rhodiola, she noticed significant improvement in her condition. As she continued her daily rhodiola regimen, her strength returned rapidly until she made a complete recovery.


Edit: I just purchased this online from Amazon
http://www.amazon.com/Rosavin-Electrolytes--Siberian-Rhodiola-V-capsules/dp/B00074JNVG/ref=sr_1_1?ie=UTF8&qid=1365722212&sr=8-1&keywords=rosavin+plus+with+electrolytes

Post Edited (aklyme) : 4/11/2013 5:17:31 PM (GMT-6)

Posted 4/19/2013 11:39 PM (GMT 0)
Hey Aklyme how are you feeling? Did you head pressure get any better? I still feel like I am in a fog and going crazy it is worse for me in the later afternoon. Hope you found a good Dr.

Andy Cotton Candy

Posted 4/20/2013 12:38 PM (GMT 0)
Hi All,
Sorry I've been MIA for so long, life can sure get busy!

I wanted to contribute to this thread though - Aklyme, are you detoxing well? The head pressure can frequently be caused by ammonia in the brain, due to toxins (specifically ammonia) beginning to overwhelm the body.

about Babesia, I came across this statement from Dr. James Schaller - a Lyme Doctor and Researcher:
"No blood smear will be positive for Babesia unless you have a profoundly massive number of infected red blood cells, which is rare. Therefore, no blood smear should be considered negative unless it has been examined for thirty minutes." www.personalconsult.com/posts/babesia-checklist.html

I too had serious brain issues - short and long term memory loss (to the point of no working memory), serious cognitive function issues (couldn't follow very simple patterns) and even speech issues (stuttering & more), yet all of that has gone away with the right treatment, detoxing, eating right, and exercise as tolerated. So hang in there and find a treatment that will work for you.
Posted 4/20/2013 12:40 PM (GMT 0)
Oops! I forgot to mention that we really, really need to start a new thread here!!! We can't allow the threads to get too long as it's hard on the servers.

So please start a "part 2" to this thread! :-)
Posted 2/15/2017 12:03 PM (GMT 0)
Hi my name candy I'm 44.6 yrs go I started have pains in head.i did fink it was the flu.but took ages for it to go .so bk 4wood to dotor hospitals. But no think. So they fault give me more dose on anitdpresents then stop me then put me bk on .6yrs latter I find out on er wat I've read I got same bk to my crap doctors said look wat I've got .gave me lamotrigine. Ant done nothing really.side my braine burning moves round to .only bit I ant got it in is one spot on the right side.im suffering so bad.ive ad 3jobs in 2moths lasted a day .coz my braine hurts .can't talk to long wiv out it hurting.6moth ago my sleeping bin so bad .takes me 4yrs get sleep my husband on safa to let me sleep.now sum times my legs go stiff my arm bk my skull. It's weirdest thing.i was told on a health Web site from a dotor last night .have I bin checked bye Lyme Disease. I've booked appointment in 2wks at Hampstead Lyme Disease hospital. Sound same but not lot says bout the burning. I'm so glad there is more like me I don't mean that in eny arm coz this bloody burning braine is a braine killer.yes I'm sceard to deaf .6yrs of not noing I got to 3moths ago planning my funrle. I was put in hospital 6weks ago .not 4 burning braine. But the mess up wat the doctors have done.keep stopping my anitdpresents. Mess my mind right up.but in a way mantle hospital got my tablets right .but I shount of bin in there in 1st place.dotors. I got don't no wat to do .is there eny help I can pass on to my crap doctors. I don't want to die .but God sick of this Hillnes. I've lost me I don't go out coz of this .sorry to er u all bin in same way fingers crossed we all get a cure a.fanks candy
Posted 2/15/2017 2:11 PM (GMT 0)
My symptoms were mostly cognitive problems, headache, neck pain, and pulsing/throbbing of the veins around my head.

It was so bad that I once asked a coworker to drive me home, and I couldn't remember the direction to my house. At times, I didn't know what day of the week it was and showed up for appointments on the wrong day. Talking, reading and writing was really difficult.

I started to feel better on the 8th month of treatment, 2 months after I started on doxy. I am on IV rocephin now, and I've been asymptomatic for 10 days. It's not a lot, but I've never had 10 good days in a row before treatment.

The only thing that calmed it down was a prescription medication called Fioricet.
Posted 2/15/2017 2:51 PM (GMT 0)
Candy,
Can you explain the Hampstead Lyme Disease hospital - where it is? From what I'm finding - it's not a good place to go, but I may be looking at the wrong place, so I wanted to ask.

Also, you should know that this is a really old thread. Old threads get resurrected all the time here, but I just want you to be aware that those that posted before you may not be around any longer (other than me - LOL! I'm a near permanent fixture here!)

The burning brain is actually fairly common for those with chronic Lyme. Sometimes it's from the toxins that build up, sometimes it's the infections, and sometimes it's a combination of the two.

What you need is treatment, not counseling or cognitive therapy.
Posted 2/23/2017 9:10 AM (GMT 0)
Hi Clint. My name candy I'm 44 now 6yrs I've ad burning brain.left side braine on fire burns so bad . presure in head.but dotor dint no wat was .until late 6yrs latter I find it on ear wat I got .so crap doctors put me on lamotrigine 50.but I'm now taking 100 a day now.it helps but God I fill like I'm dieing .I can't lay on my head .it messed me up in life .can't work now coz I get all hot in my head .my head fogy .doctors put me on sum vitamins and I must say I bin 3 of burning for 4 days .it's still there but it's on paurs. Burning brain 4 6yrs as done my sum damage. It's a sceary filling 6 yrs of not noing wat u got.god I've gone through pain .I said y I ant got it in my leg or eny other parts.but the braine God. I fill for u .but try rest stay calm. I'm now taking one day at time .I'm sick of dotor hospitals and still no 4wood.if u do get a cure let us all no.im on ear just 4 burning braine fankgod.im not alone wiv this killer deases. Stay strong got to a .candy
Posted 2/23/2017 9:19 AM (GMT 0)
Hi Candy - just wanted to let you know that Clint hasn't been on the forum for about 4 years.

I'm sorry for all your suffering.

Did you go to the Hampstead Hospital? Were you tested for Lyme disease?
Posted 2/23/2017 2:00 PM (GMT 0)
Candy, the only med they have you on is an anticonvulsant (lamotrigine)? If that's the case, no wonder you feel so bad. You need antibiotics and healing therapies, not anticonvulsants. At least not alone.

But, in order for us to be of help to you, we need to know more about you. You've posted a lot about your burning brain - and although I do understand how scary that is - we really need more information to be able to help you.
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