posted
...it just seems to make sense (though nothing else with this disease does...LOL)
Anyway, if the tissue in your brain has swelled and your cranial nerves are being squished and there is not enough room for blood to flow around thru the squished vessels - then you would have constant head pain and BRAIN FOG - right?
Would this show up on an MRI of the brain? I've had 3 sets over the past 2 years which have all been 'normal' - no white lesions, no nothing.
What the heck would help with this? You know, something that would make that swelling 'go down'??? Obviously NOT IV Claforan, IV Primaxin, or Doxy as I have been on all of these with no improvement at all.
I've read that those with constant head pain have the worst prognosis with this because the head pain many times NEVER goes away. My Lyme ELISA was positive, but my WB's at Igenex were both negative (equivocal bands only) - so who knows - I sure don't remember being biten by any tick.....
Anybody else have this NASTY brain swelling and fog and horrific fatigue and actually improve? - after 2 years, my hope is fading.
I am seeing LLMD, Dr. C that everyone loves - but so far none of the abx have helped any.
Posts: 65 | From West Tx | Registered: Mar 2004
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
I have the worst fog immaginable and yet my MRI, CT, & PET were all normal. Go figure...
Posts: 1010 | From Mars | Registered: Feb 2004
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JRobin
Unregistered
posted
I felt a clearing and reduction in fog after taking Minocin/zithro combo. (only been 3 weeks, but I felt the difference quickly, and more so each day). I had the head stuff for 4 months, that I am aware of! Perhaps a friend might say otherwise!
Never felt any "drainage" or anything, but thinking seems to be clearer. I even remembered a name from 3 years ago.
These full head feelings reminded me of the "fullhead" feeling with head sinus infections.,like I was living inside a jar or can. Also, felt similar to the full body/head relief from appendicitis infection after surgery.
Dont know if one or both (mino/zithro) was responsible. My body feeling is that it is the mino, but that is just a feeling. Body likes the mino, but do not get that feeling when I take the zithro!
Perhaps just a coincidence, I really dont know. These are just my experiences.
posted
I've had encephalitis twice and a head injury froma car accident and used homeopathics to get rid of the brain swelling. One is Belladonna and the other is Apis in 30X or 30C potency. You can find both at most health food stores.
Also many people with brain swelling do well with Benadryl, especially if it's an ongoing allergic response causing the inflammation.
Jan
[This message has been edited by janinco (edited 21 October 2004).]
posted
yes, it does clear for many people, just not usually very quickly. How long have you been in treatment?
For me, amoxicillan for 3 months then Biaxin XL + Plaquenil for another 5 or 6 months got rid of the brain fog/fatigue/head misery. But that's just me/my LLMD's treatment. We are all different, but, generally, it takes some time. I know it's hard, I do.
My MRI was normal, too, at my worst. Try telling me that I was normal!!! I couldn't remember my phone number!
I think the SPECT scan tells more for us lyme-in-the-brain people. Sorry, don't have a moment to post links but search under SPECT using the search button above.
I'm sorry things seem so dire...many of us have been through it or are going through it now. It is so debilitating, I know. The pressure and pains were intense. Wishing you the best. Stick with it. Sounds like you have lyme (equivical means positive to my LLMD)
Leslie
Posts: 340 | From Harrisburg, PA | Registered: Jun 2003
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
for me the headaches finally went away after abx (had them for 3 lonnnngg years! horrible ones...but now it's been replaced with dizzyness/lightheadedness...
don't know which is worse...what 's up wtih the lightheaded feeling??? anyone?
lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Lisa,
Do you have yeast?
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
There is such a thing as fMRI. Not many know how to do it or offer it.
I know with fmers, it usally shows lesions.
I also have had meningitis,revently after mosquito bite, poss. WNV, had bout with encephalitis.
Many have neck problems,swelling,inj. Could also be part of the neurotransmitters messages not being able to get through fast enough.
Very poss. why we are off just a beat. Geting food to our mouth,balance prob.,sight changing,stubbing toe alot etc.
We have up to atleast 100 neurotransmitters that regulate the smallest thing to blinking. Such as putting hand on stove we are just a tad to late to get the message if even being burned. That is all it takes.
We have long way to go to undestand the neurotransmitter disruption. Not that long ago they docs even knew about neurotransmitter. Lets say in Parkinsons & dopamine regulation to control
I think for us stem cell research will be important.
There is also the Chiari theory, in neck. No doubt there is a link...
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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Have you called Dr. C's office? I'd get on the phone with them ASAP and see what they say.
Unfortuntely I think this goes with lyme. At times I've had horrible headaches for a long period of time then one day they disappear.
It's very frustrating.
Hang in there! Soemone said the yeast can do this and I agree. The less yeast I have the better my headaches and fogginess seem to be.
Posts: 738 | From Colorado | Registered: Oct 2004
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
I use plain asprin to cut down menengitis swelling a bit. It helps. NOT motrin or tylenol- just plain asprin. Sometimes even a half one a day helps if the swelling isn't too bad.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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lhm312
Unregistered
posted
After suffering with intense head pressure, feeling like my brain was exploding, I broke down and added yet another med to my program, started on Neurontin, only 300 mg at night.
It's been about 3 weeks and has made the difference between pressure that was unbearable to a dull pressure. It's still there, but there are days I can function and forget it.
My LLMD also just increased my abx back up, so I am hoping to eliminate more pressure. If not, I will ask the neurologist about increasing the Neurontin.
posted
My llmd had me take gingko extract. There's a kind called "Gingkgold" that's available many places. I started with 1 tab twice daily, and varied it, observing the effect. It took several days to kick in, but I noticed big improvements in head tightness and pain. DaveS Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I had lyme induced encephilitis abx that helped was dynabac super raging headache pressure then went away.You may still be able to get dynabac at some pharmacies but the manufacture stopped making it so to make sex drug.
Try spectracef or omnicef. Take anti inflamatories too.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I wonder if environmental triggers can exacerbate the swelling. Whenever I'm around allergens, heat, chemicals or perfume, my fog gets worse.
Some said that Lyme can trigger MCS
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
SisterSue2, I'm sorry for your pain. I can really relate. It is an awful torture to go through.
Don't give up hope, though. I have suffered with what feels like inflammed and swollen brain for 2 years. FINALLY doc gave me neurontin. It helps a lot with the nerve pain associated with the pressure. Also I take Sinemet and B12 injections with help with neuro symptoms as well.
I HATE medications but I'd rather live so I am taking them. Can't believe the relief I have gotten from the neurontin. Hoping it lasts.
Stick with your treatment and stick with your doctor but try to find some relief from the pain so you can make it through. In my opinion it is the hardest part. Good luck, Cathy
Posts: 71 | From Warren, Mi, USA | Registered: May 2003
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posted
Nuerontin.....hmmm, I'll have to ask about this one. What are the side effects? I'm very unbalanced and fatigued, does it make these things worse?
Thanks for all of the ideas everybody - ya'll are awesome!!
Sis
Posts: 65 | From West Tx | Registered: Mar 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Sister Sue,
~~quote~~ Anyway, if the tissue in your brain has swelled and your cranial nerves are being squished and there is not enough room for blood to flow around thru the squished vessels - then you would have constant head pain and BRAIN FOG - right? ~~~~
What happens, is if the tiny blood vessels, the capillaries, are inflamed and swollen (from the Lyme bacteria and its toxins), then the individual red blood cells have trouble passing through in single file.
As the red blood cells pass through the capillaries, they release molecules of oxygen, which pass through the capillary wall and into the cells of the brain.
The mitochondria, or powerhouses, of the cells use the oxygen to make energy to power the cell.
So, if the capillaries are inflamed and swollen, the red cells can't travel through properly, and the cells don't get enough oxygen.
Your brain cells use alot of oxygen, as they need alot of energy to "do their thing." Low oxygen levels means decreased ability to think properly. BRAIN FOG!
An MRI won't show this decreased perfusion, or blood flow. However, a SPECT scan will.
Antibiotics not only kill bacteria, they also reduce inflammation. So they can improve the brain fog.
When I had an MRI this last summer, my continuous headaches STOPPED. Although I still had memory problems, at least I could think.
Unfortunately, the headaches gradually returned after 4 or 5 weeks. Sigh....
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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