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» LymeNet Flash » Questions and Discussion » Medical Questions » Brain inflammation, how long?

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Author Topic: Brain inflammation, how long?
Shahbah
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Hi
I have been suffering from brain inflammation for two years now, non stop... it is pretty severe brain swelling, head pressure, and brain fog... Has anybody recovered from this? How long did it take after you finished lyme treatment for this inflammation to resolve, if it did...?

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lymeladyinNY
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I needed IV treatment (Rocephin) to help with this. I've been on it several times. I still have brain inflammation, but it's much better than it used to be. It almost seems as if I have to be open to the possibility that I will need this type of treatment as needed for the rest of my life.

--------------------
I want to be free

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triathletelymie
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I would love to see some of the responses, too. I am in the same boat! I have had major brain involvement/issues for over a year now...with no improvement! I never had the "typical" lyme symptoms of joint pain and fatigue.

--------------------
? date of bite/no rash
10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests
CDC+ 23/39/41/45/58/66/93
currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements

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lymeinhell
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How do you know you have brain inflammation? MRA, SPECT?

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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Hambone
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I've only ever had one IV Rocephin at my doctor's office, and I can say that I felt a MAJOR difference in the way my brain was affected after the IV versus when I take orals.


After I take orals, I just feel like general crap all over.

But when I had that one IV Rocephin dose, about 20-30 minutes later I could literally feel the drug in my brain. It felt like my brain was bathed in it and was melting.

I cried all the way home from the doctor's office because, for some weird reason, that IV drip made all these emotions from decades ago come rising to the surface. I cried about my dog that died 25 years ago but at the same time I recognized that it was bizarre to be so upset about that.

This doesn't happen when I take orals.

The IV went straight to my brain.

I haven't had IV's since because of the distance between me and my LLMD ( he doesn't do picc lines ), but I could tell a big difference in how they work vs. orals.

I'm actually trying to figure out a way to be able to do IV's on a regular basis because of this brain crap. My problem is I can't travel far to find a doc who will do a picc. The LLMD I have now is as far as I can manage and he only does IV's in his office. He's 2 hours away and that's just not gonna work.

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daniel
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@Hambone strange reaction, but i dont think that "crying" is a sign of working antibiotics.. sure you have a good blood level in 10 minutes, but the antibiotic needs time too, to start work.

i had the crying episodes too, just because i realized that i was suffering so much, since i am better, i dont cry anymore.


@threat
it is difficult to say if the brainfog is caused by inflammation or by the bug. my MRI for example, hasnt showed any inflammation in my brain or cns, but i still had serve brainfog while the MRI was done..

so like i said.. you have to figure out if it is the inflammation or a not-killed-bug.

in my case, because my bloodwork is normal and my MRI is normal too, i think that the brainfog is caused by bugs, especially borrelia and bartonella i think.

greetz

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feelfit
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I caught a big break with IV Invanz. My brain felt a lot better. But, on levaquin now and it is all back..

I have had the head pressure/headache etc. nearly 24/7 for the last 3 1/2 years. Even on Invanz it didn't completely resolve, only lessened in intensity.

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Shahbah
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ok, my doc told me this head pressure can last up to 5 years... knowing that i have spoent two years, still have 3 years to go...? Argh....
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thehause
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Shahbah, i am like you. i have spent 2+ years on heavy oral abx after going about 6 years undiagnosed.

I've tried about every supplement known at the moment and more or less feel like a guinea pig for my doctor. Nothing seems to be helping the issue. I'm unsure that abx are even the proper treatment for my neuro issues.

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Shahbah
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thehause, how long have you had this feeling of head pressure?
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thehause
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since late 2004 / early 2005. You?

i saw your thread on ammonia in the guy leaking to the bloodstream, etc. Any simpler explanation of how this works or what is really going on?

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joahsark
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Omgosh, this is all seems to be such bad news for us that have this as a major symptom. This was my first symptom in 1994 and has gotten worse and worse over the years. Now I can actually feel the horrible pressure going down the back of my neck with horrible neck pain.

The pressure gets so bad, I am unable to think at all. I'm just finally getting started with an LLND. My greatest fear is that medication will make it worse and unable to reverse it. It has lead me to the edge many times.

It took many years of these head symptoms before the more "typical" joint pain, heart symptoms etc began. But each year more and more come.

Hoping others will post with hope.

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payne
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you would think they could test easily the pure white mucus i have from my nose, and the ear build up, clean ears and 2 mins later the build up of dry crap comes out...
Is this candid ? haveing the head symptoms,
I think the bugs are enjoying my brain/candid as a
picnic...
the liquid nyasatin helps with my brian pressure
and Vick's greasless/lotion,
not the paste-
up my nose at night,
alittle on Q tip...
i know it has internal area warnings...
but, i had the mucus first...
and vick's has helped me with toe fungus and muscle strains... kinda my wonder drug against
Lyme..
I had 2 days in 5 months where my head went clear,
while using Buster nasal spray(a pepper natural)
about 14 bucks a bottle and brace yourself its like pepper spray police use...WOW.
as i had forgotten what it is like to be
out of the fog/pressure/sinus world,
many of us forgot what feeling normal is..

--------------------
TULAREMIA/rabbit fever ?

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ndo90
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Shahbah, I posted this yesterday about my daughter. Is this the same thing you are experiencing. Is it caused by meds? or just another symptom? She doesn't read/post any posts because she would have major anxiety over all the responses but I try to explain it the best I can.

My 20 year old daughter has had lyme for 5 years, but only diagnosed a year ago. She's currently on biaxin, Doxcy, and Plaquinil. She gets a lot of muscle spasms throughout her body but lately she has had a lot of head issues. Sometimes she gets pressure in her head that brings tears to her eyes cause it hurts so bad. I can feel the spot of pressure and it's really hot. It will last anywhere from 5-15 minutes, then she gets a headache, then is extremly fatigued for 10-30 min.Sometimes can't even lift her head.

She also gets a lot of hot flashes but only on her face and hands. Anybody out there with these type symptoms and what has helped?

IgM 31++, 39 Ind, 41++, 83-93+
IgG 31 Ind, 41+, 58+

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momintexas
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My son also suffers from frequent headaches, dilated pupils, and head pressure.

He has had things show up in his MRI.

This may sound strange, but what has helped him the most is tumeric.

Within a few days of starting tumeric, we have been able to stop the daily Motrin, his pupils are now moving again and he rarely has headaches anymore.

Cranial sacral therapy has also helped.

For him, it's made a HUGE difference. I tried to take it, but it doesn't agree with me. (no gallbladder)

It may be something worth trying -

I hope you all find relief soon.

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tick battler
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Hi momintexas,
I'm curious, how did you determine to try tumeric? I think I recall it may have an effect on babesia but I'm not sure. How much do you give him and do you just use the cooking spice from the grocery store?

We just tried cranial sacral therapy with two of my children. My daughter seemed a little grumpy the next day but don't know if it was related. Have you seen any "herx" type reactions from it or just improvements?

Thanks,

tickbattler

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mr al
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Head pressure is very a vague term on this forum sadly. Unfortunately ten different people will have ten different types of pressure and or pain/dizziness. Unfortunately I haven't seen a good way of seperating our descriptions.

Maybe you could let us all know the tests you've had and be very very specific about where (sides, top, cheeks above the neck,etc),

do you have fullness, pain, sharp pain?

how long you get it (24 hours a day, an hour at a time, does it ever go away?),

other problems with it (dizziness, twitching, etc.)

I've had every lyme symptom and my head really is the most god awful of them all. I've had it for years, 24 hours a day and it's never gone away no matter the medicine. I feel for all of you that have head problems. So far the only person that seems to be exactly like mine is the user UnexpectedIlls and I don't she got better or knows what it is either.

Hopefully we can help you.

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Lymetoo
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quote:
Originally posted by Shahbah:
ok, my doc told me this head pressure can last up to 5 years... knowing that i have spoent two years, still have 3 years to go...? Argh.... ]

-
Shahbah.. I'm sorry I haven't been paying close attention .. but are you being treated for TBD's right now??

--------------------
--Lymetutu--
Opinions, not medical advice!

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momintexas
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Hi tickbattler,

I had read about tumeric on here but never really considered it for a child until both my LLMD and our local immunologist suggested we start using it for him.

I needed to give Motrin very often and they both said we needed to back off of it and to try the tumeric.

I was having trouble finding just tumeric in the pill form that didn't have any additives so I bought Organic tumeric as the spice and put it into capsules myself.

I give it to him twice a day.

We just had a follow up with our immunologist and he said we could give him medicinal tumeric so I don't have to put it in capsules myself plus it would be stronger that way, but

what I'm doing right now is working so I'm sticking with it as is..... [Smile]

The effect on his pupils with cranial sacral was immediate and he was very sleepy afterwards. In the beginning there was a time or two that he was grumpy afterwards too.

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Lymetoo
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Cranial sacral is great stuff!

--------------------
--Lymetutu--
Opinions, not medical advice!

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payne
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they just had a recall on tumeric... to much Iron or something...
can't take - do to coumadin reacts
thins blood... but, when i did take it -
it was good on my symptoms for the GI

--------------------
TULAREMIA/rabbit fever ?

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momintexas
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It's the Target brand that was recalled.

http://www.foodsafetynews.com/2011/04/turmeric-recalled-due-to-excessive-lead-levels/

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bcb1200
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I had / have brain inflammation as confirmed by my Brain spect.

I haven't done IV, but have gotten great progress with high dose doxycycline.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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lymeinhell
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Shahbah, how did you determine you have brain inflammation? What test determines that? MRI? Spect? MRA? What would the test results say to indicate such?

I'm with Mr Al - there are so many causes and types of head pressure, and they do seem to get lumped up into one here.

Here's my experience:

I truly thought I had an aneurysm or something, my head hurt so bad for so long.

And when I went to my LLMD and said I thought my brain was swelling, she laughed.

And had me walk through the past few months to figure out where the pain came from.

And then she poked a knuckle around on the back of my skull and said 'Does this hurt?" And lo and behold, my 'brain swelling' was a giant muscle spazm on the back of my skull - actually there were a couple of them. When she pressed on that area really hard, only the spot she was pressing on hurt and my 'brain' pressure was gone. She explained to me what referred pain was and got me pain free for the first time in a year.

Many of us are deficient in magnesium, which leads to these spazms that DO NOT GO AWAY ON THEIR OWN. They must be addressed by trigger point injections, prolotherapy, or cranial sacral massage.

And then they must be prevented by restoring your magnesium levels.

Payne, your issues really do sound like Candida fungal infection. Never ever ever put Vicks inside your sinuses - Topical camphor absorbed through mucous membranes or broken skin also can be toxic. That's why you should never put VapoRub in or around the nostrils particularly a small child's nostrils. If you are doing it for the menthol effects, this can be accomplished safely by applying a drop of Peppermint Oil above your upper lip.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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thehause
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I had it determined via a SPECT.
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thehause
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What are TBDs that Lymetoo is referring to?
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marypart
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TBD= Tick-borne Disease

--------------------
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.

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Lauralyme
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[QUOTE]Originally posted by Shahbah:
[QB] ok, my doc told me this head pressure can last up to 5 years... knowing that i have spoent two years, still have 3 years to go...? Argh....

That doesn't even make sense for a Dr to say that
How does he come up with the number 5 years? That is nonsensical and pessimistic

I am fine now after three years treatment. With the proper treatment and diet the head pressure goes away

--------------------
Fall down seven times, get up eight
~Japanese proverb

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thehause
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Does anyone else suffer from the symptoms of having trouble producing deep thoughts - finding the "meaning" of things and having poor judgment?

And then has anyone gotten better from this symptom set?

I've been stressing over my symptoms for quiet awhile... Getting to a limit I feel like.

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nefferdun
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Brain function is my worst symptom. I often feel like I have dementia. It has gotten better with babesia treatment. I think you have to hit all the infections because they can all affect the brain.

Hopefully I will have "the answer" someday.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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payne
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lymeinhell, sorry it took so long to find my way back here..
Thanks for the heads up on vicks-
STOPPED COLD TURKEY...
I will only say that 2 days ago was the best day i had in a year..almost 100% symptom free..!!!
Got out side for hours, lots of movement...
slept 8 hrs and the next day was horrid, probably due to just overdoing a spring day.. CRAP..
I have many meds to filter through and am always
trying to ween more pills outta my day and get organic and naturals...
Lemon water / tea has been helpfull.. in small ways..
i do alot of cherry juice too..
I been on coumadin for a month or 2 now, weening supplements like CoQ10 and my old favorite lorcet & amoxillion...
I feel alittle bit of perhaps i am winning as a few of my first symptoms are returning...leg cramps and pains..
Slow and sure wins...
Gee, i think i forgot what is was to have a good day... where i hardly thought of LYME.

--------------------
TULAREMIA/rabbit fever ?

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chiquita incognita
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Above and beyond treating the infection, which is first and foremost....

This is for adjunct support:

My LLMD said that tocotrienols, especially alpha tocotrienol, is helpful with brain inflammation

I also do lecithin (he said to do phosphatidyllcholine, which is triple strength lecithin)

And fish oils, Metagenics makes a concentrate

Coconut oil as topical rub has helped me a LOT, I rub it all over my body. I particularly make sure it is getting to the nerve root, along both sides of the spine, neck, etc. Can be used internally too for nerves support (tastes greasy ugh, you could buy capsules)

I don't think it's necessary to do *all* of the above, in fact it would be nauseating/hard on the liver. I would select a few of the above. Myself, I am doing the tocotrienols and cutting out the coconut oil at this point, taking lecithin, and fish oils.

Really helping me A LOT!!

I agree with the magnesium suggestion above. My LLMD said that most lyme patients are magnesium deficient.

Vitamin B 12 is also a nerve anti-inflammatory. USed as injection with MS patients according to one of my holistic health reference manuals.

Best wishes, CI


The above information has not been evaluated by the FDA and products above are not intended to diagnose, prevent or cure any disease.

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Shahbah
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http://www.mcknights.com/brain-inflammation-treats-not-causes-alzheimers-disease-research-suggests/article/156124/

But again when i read this, I am lost... if brain inflammation is a good thing, that means as long as we have it, there's still some work to be done in there... So if we supress it, those that mean we're openning the door to more serious damage?...

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thehause
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It makes sense that a thickening of the cellular wall which results from inflammation is meant to prohibit the spread of disease - in my head.
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Shahbah
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huh? thickenig of what?
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thehause
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Inflammation, which causes decreased perfusion, does so by causing a thickening of cellular walls - sort of like scar tissue, no?
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jmb
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hambone and daniel. After the first infusion of Rocephin, I experienced the same emotional explosion hambone mentioned. Sans the dog sorrow.

Since then about an hour after infusion I have had similar emotional explosions on a number of occaisions. I have transitioned from morning to evening infusion, so I go to bed just after. No emotional explosions since.

I think you are both right. It is in the head.

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enjoy the day.

-jmb

Posts: 208 | From Maryland | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
lyme in Putnam
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Have had confusion since 11/09 depersonalization with few breaks. Had spects done 2005/2006, hypoperfusion, mri 2009, lesions, new mri tomorrow. Feel like losing it. Joint pain, twitches, ocd through the roof, trying to hold whatever I can with psych meds, but hard. Hoping all clears soon for all. This is no way to live. Feel well.

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He took u to it, He'll you through

Posts: 2837 | From NE. | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
   

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