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.
 

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.

JR
 

The head pain can and does go away. Has a freakin habit of coming back too.

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).]
 

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
 

don't know which is worse...what 's up wtih the lightheaded feeling??? anyone?

lisa
 

Do you have yeast?

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...
 

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.

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.
 

Try spectracef or omnicef. Take anti inflamatories too.
 

Some said that Lyme can trigger MCS
 

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
 

Thanks for all of the ideas everybody - ya'll are awesome!!

Sis
 

~~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