I would like all of you have lyme fog,disorientation,head burning,etc.etc. to PLEASE comment on it.
It is absolutely driving me crazy. Has anyone gotten their brain feeling better?
Is there ANYTHING that you do to help the feeling???
Is it worse at some times ??? Is there anything you can do to feel it just a little bit less?????
I have been treated since Nov. 07 and the fog is worse...
Also I have neuropathy
750mg zithromax Mepron-just started this week
Thanks for any input...
You are the only people that can truly understand the feeling...
Laurie
Posted by wiserforit (Member # 9732) on :
laurie!
you poor thing! I wish I had sage words, but I only have wondering words.
Can you back down to less zithromax while you grapple with the Mepron? I wonder this because it took me so long to move up to 500 mg. Zithromax.
Zith made me very spacey, depressed and head-ringy. i know that it has bothered other folks too in the ear department. BUT...it really helped me in many ways too.
When do you see our friend the LLMD next? You know you can call and inquire about meds being too much too soon. They're pretty good about letting you ramp up at your own rate.
My advice: give the office a call. AND call me any time too for schoozing and sympathy.
Hugs,
wiserforit
Posted by jentytib (Member # 14375) on :
I decided if I could trade symptoms with God, I would take anything over brain issues.
My brain is working much better now. I am amazed.
I am on minocycline, that's all. I think it is because is crosses the brain barrier.
Also, my final symptom that got the ball rolling on this Lyme mess was vertigo and migraines. They are pretty much gone now. The vertigo definitely and the migraines are very minimal.
Posted by daise (Member # 13622) on :
The brain stuff.
I did 6 months of IV Rocephen which very much helped, followed right away by LA Bicillin shots for ten months. Biaxin all the way through, then added pulsed flagyl.
I went miles!
None of it's gone, but all of it is a whole lot better.
A lot better!
Good riddance to those miseries. Goodbyeeeeeee.
I did have constant, very severe head pain, plus all cognitive junk plus Bell's palsy (at one time.)
Life does get better, Laurie.
daise Posted by laurie sm (Member # 14584) on :
wiserforit- Hi Tori! Thanks for your words even if they are wondering!
I think of you all the time and know that you are having a HARD time too.
Have things gotten any better for you????
Laurie
Posted by laurie sm (Member # 14584) on :
Daise- You went miles-that is so wonderful!!!! You have really been through alot!!!!
"Things will get better" I will keep saying it and thinking it over and over again.
Thank you for your support!!!!
Laurie
Posted by laurie sm (Member # 14584) on :
Jentytib- I have had "migraines" for 20 years-my only health issue before this.
Now they are worse. I was on mino.for 3 weeks because my ex-LLMD said it crosses the blood brain barrier.
It made me super sound sensitive and I was still foggy. I know i wasn't on it long.
Mynew LLMD took me off it for amoxy. which I had a rash from. He thought it might be an allergy so I was tested.
No-it wasn't an allergy-anyway he put me back on the zithromax and just added mepron.
Anyway-Thanks for your advice. Keep on feeling better.
Laurie
Posted by daise (Member # 13622) on :
Maybe, "Things will get better" as a mantra, because there are pitfalls along the way.
Steer your ship in the storm, right on through.
daise Posted by lymeHerx001 (Member # 6215) on :
Those are my symptoms too! I have terrible fog, neuropathy and vertigo.
At what point do you decide to do IV rocephrin. I would love to do this if it would help.
lh
quote:Originally posted by laurie sm:
I would like all of you have lyme fog,disorientation,head burning,etc.etc. to PLEASE comment on it.
It is absolutely driving me crazy. Has anyone gotten their brain feeling better?
Is there ANYTHING that you do to help the feeling???
Is it worse at some times ??? Is there anything you can do to feel it just a little bit less?????
I have been treated since Nov. 07 and the fog is worse...
Also I have neuropathy
750mg zithromax Mepron-just started this week
Thanks for any input...
You are the only people that can truly understand the feeling...
Laurie ]
Posted by laurie sm (Member # 14584) on :
Lymeherx-I am at the point where I will try anything. Up to now my LLMD wouldn't give me IV abx.
Besides the pain and fog I feel so SICK.
I still don't understand he whole Herx thing.
I feel SICK every day. Is it a reaction to the abx.and/or mepron or a herx???
I have no clue but I don't know how long i can keep feeling this way.
I have no choice....
"Life will get better" I wish I could see some improvement. I didn't know it was possible to feel so ill constantly.
Laurie
Posted by hcconn22 (Member # 5263) on :
Have had brain fog and cognitive issues since getting Lyme 10 years ago, just found out from LLMD that I have babs and bart.
Now after 3 months of treatment Mep/zith three months for Babs and now 1 month of treatment for bart-- the fog is lifting.
The interesting thing about the fog and cognitive issues is that -- at least for me they came on slowly and I became stupid without really knowing or acknowledging it. Otherwise I was becomming retarded, but did not notice.
I knew I was not allright, but did not know or care why, as the fog basically numbed my feelings to care about anything.
Have you been tested for Babs/bart. These can cause mental cognitive issues. If your getting Mepron, you must be getting treated for Babesia.
If so your fog can go away over time.
Posted by NanaDubo (Member # 14794) on :
Hi - I'm am looking for answers to the same question but can't read everything. Has ANYONE been helped by mep/zith? I was on doxy for 6 weeks and have started the new combo a week ago. I feel SO much worse! Constant headache and heat. It used to come and go but since starting Mepron and zith it hasn't let up. Is there light at the end of the tunnel? I can't even function right now which I was at leas able to do on doxy. Any help out there?
NanaDubo
Posted by TerryK (Member # 8552) on :
I've been able to keep pretty good brain function. Some things to look at are:
excess ammonia - caused by spirochetes and causes brain fog
increased quinolinic acid - also caused by infection - causes brain fog - look at buhner book on things to use to fix it
acetylcholine - affected by lyme and can be severly affected - especially by die off
Search here for all these things. They've been discussed several times. To get you started:
excess ammonia to remove excess ammonia try l-ornithine or yukka
Lyme spirochetes make excess ammonia. It is a toxin. If your gut is not working properly or you have a genetic mutation that inhibits your ability to remove ammonia or for some reason your body can't keep up with the excess due to die off etc., you can end up with an excess which can affect brain function causing fogginess.
Something I wrote in another thread: You may want to look into quinolinic acid and ways to ameliorate it. Apparently some of the confusion/memory problems that are caused by lyme may be caused by the production quinolinic acid. Some things that Buhner (healing lyme book) claims help with that are: resversatrol melatonin copper/vit C selenium
acetylcholine http://www.townsendletter.com/FebMar2006/lyme0206.htm Dietary Supplements in Lyme Disease One of the known actions of the Lyme spirochete toxin is to diminish the release and availability of the neurotransmitter acetylcholine, a simple organic compound (see above for chemical structure). This substance is biosynthesized by the body as required in nerve activation and transmission.
Supplementation by the precursors of acetylcholine synthesis would be of value to Lyme patients since they have a deficiency of this substance. (See Listing 1.)
Listing 1: Dietary Supplements Increasing Acetylcholine Synthesis Improving Neurologic Function
I am not a doctor. Just relaying my research and experience.
Terry
Posted by TerryK (Member # 8552) on :
NanaDubo, You might want to start another thread to ask your questions. You'll get more answers plus it won't interfere with this thread.
There are lots of discussions here about babesia herxing so you could do a search to get lots of info.
Many people experience what you are experiencing. Babs really affected my ability to control my body temp. It will get better. Hang in there. Be sure to mention all of this to your doctor. It helps to keep notes so that you can see your progress AND your doctor can get a better idea of what is happening.
Terry
Posted by trish4 (Member # 14156) on :
I, too have the horrible brain fog. It feels like Im floating on a cloud-and things seem unreal. I have problems focusing my eyes and a lot of the time I dont make sense. That is my most worrying symptom. A lot of my vocabulary words have dissapeard (i would be writing much different a year ago before all this brain stuff started).
But so far my LLMD has been right. He said I would start feeling better but my brain symptoms would be the last to go away.
My horrible horrible headaches that plagued me everyday are now gone, my stomach problems are gone, the twitching has lessened, the horrible neck pain/stiffness is gone (it comes back maybe once every couple weeks for a couple hours but Im assuming thats the herx) and a bunch of other things.
Now I have to get rid of my worst symptoms-the fatigue,neuro, and flu-like feeling. But in time with the right treatment im confident they will go away as well.
We will all get better, at least to some degree now that we know what we're fighting =)
Posted by daise (Member # 13622) on :
Hello Nanadubo,
Oh my gosh, you poor thing.
I just read another post of yours. I'll print it:
"I'm sure there is a post on this subject but not seeing well today. I have had a headache and fire in my head for three days.
I don't see my doc until later in the week. I am only on Doxy right now and wondering if this is the cause or if I need to be on something else. " ________
First, I want to welcome you. OK? You are hurting badly and I HEAR YOU!
Our signs and symptoms are hard to live with--I know. We have pain, grief, and brains that don't work well. We know all about that. You're in good company.
So how can we use our brains to think, to understand what's going on inside our sick bodies and brains? Answer: we use our brains painfully slowly and it somehow gets comprehended.
There is a lot to try to comprehend with all of the information about Lyme, babesia ("babs") and bartonella ("bart.")
Then there are ... herxes, when antibiotics make all your signs and symptoms worse. Yes, we take our meds so that we can feel worse! Because we know when we come out of the herx we'll feel better. Yes, Lymeland is goofy, in that regard!
Well, we need to welcome you properly. I have an idea. You can start a new thread and others here will come to help you. It will be a proper introduction.
We don't want to leave anybody behind here. Please let us welcome you properly!
Just go to near the top of this page and click "Start New Topic." Name your new thread carefully with your topic, so we can try to answer your question(s) best.
I saw also that you posted, seeking an LLMD. Terrific!
Welcome nanadubo! I'm glad you found your way here.
daise
[ 24. April 2008, 04:46 PM: Message edited by: daise ]
Posted by lymeHerx001 (Member # 6215) on :
This is how I feel too! I have trouble focusing with my eyes and I feel hungover all the time.
What the H*LL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
quote:Originally posted by trish4: I, too have the horrible brain fog. It feels like Im floating on a cloud-and things seem unreal. I have problems focusing my eyes and a lot of the time I dont make sense. That is my most worrying symptom. A lot of my vocabulary words have dissapeard (i would be writing much different a year ago before all this brain stuff started).
But so far my LLMD has been right. He said I would start feeling better but my brain symptoms would be the last to go away.
My horrible horrible headaches that plagued me everyday are now gone, my stomach problems are gone, the twitching has lessened, the horrible neck pain/stiffness is gone (it comes back maybe once every couple weeks for a couple hours but Im assuming thats the herx) and a bunch of other things.
Now I have to get rid of my worst symptoms-the fatigue,neuro, and flu-like feeling. But in time with the right treatment im confident they will go away as well.
We will all get better, at least to some degree now that we know what we're fighting =) [/QB]
Posted by atheana (Member # 14273) on :
Guys, I sometimes don't want to post because my brain fog is so bad,as well as my grammer and spelling. You know that show "Are you smarter than a 5th grader". I could'nt even get on a show called "Are you smarter than a 1st grader". But what the heck,I'll be well soon,ha,ha! Atheana P.S When I get well(positive thinking a must). Please don't show me any of my old incorrect posts,ha!ha Posted by lymeHerx001 (Member # 6215) on :
Its more like are you smarter then a cotton ball.
When I type I just watch myself. I dont feel like im connected to my body. And this is in a super BAD way. Posted by Tracy9 (Member # 7521) on :
Lymeherx,
Hubby and I are laughing our arses off! That was SOOOOO funny~!
Posted by Windmill (Member # 15404) on :
Hi Laurie,
I really wondered if my brain symptoms would ever improve but over the course of abx treatment (20 months worth) it slowly got better, I think what really helped was IV doxy but even since then its continued to improve. at first i could read books again, concentrate on tennis on the tv etc now i can study and retain information and am learning to drive a stick shift car, (tricky even for people with good working brains!) its amazing really how it slowly improved. it will happen for you too, though it doesnt always seem like it when ur suffering with all this stuff. good luck, i really hope you see some improvement soon!
Posted by richedie (Member # 14689) on :
I feel so bad for you and at the same time I wonder why I don't read about more people getting better. I always hope that if someone goes toa good Lyme doctor, they will get better. How long were you sick prior to starting treatment?
What is the head burning? I notice sometimes when I walk, I get a pain or burning sensation up the back of my head, is that it?
I don't really have much brain fog, I work fine, seem to function just fine. I do notice some occassional short term memory things though or issues absorbing things at times.
Posted by onthemend (Member # 13454) on :
My LLMD has always said that the brain is the last to come back. He's been specializing 15 + years.
Neuro was my worst. Physical things improved very quickly for me. 14 mos 400 mgs doxy and last two months 200 mgs mino. AT LAST my brain is coming back. Higher level thinking is almost there. Processing/executive function still lagging, but GETTING BETTER. Also, the concept of momentum - having thoughts & actually being able to follow through or execute them, or figure out a next step - that has been missing for so long for me, but it is AT LAST coming back.
It has taken a long while; my brain issues are improving/resolving at last.
otm
Posted by richedie (Member # 14689) on :
I started having a ton of physical problems in Ocotber. Should I have seen more mental or brain issues by now? Could they still come later?
Posted by Geneal (Member # 10375) on :
Brain fog....it does get better.
Mine was so bad prior to treatment.
I felt like my life was like a dream (er...nightmare) where I could see and hear things,
But couldn't process it. I hated it.
I've done 21 months of treatment for Lyme, babs and bart.
Currently on my 3rd babesia treatment and probably on to my second bartonella treatment next.
The brain fog has definitely improved, although at times I still have it.
Sometimes it is just the overwhelming fatigue that makes me feel foggy.
The diflucan protocol (200mg of diflucan daily for 60 days) has really helped with this.
I am on my 3rd run of this. I take a 2 week break between diflucan treatments,
But so far (knock on wood) my liver enzymes are good.
I still have speech issues, short term memory issues, etc.
These have also improved, but aren't completely gone yet.
Good news is the joint pain rarely happens anymore.
Hugs,
Geneal
Posted by tickfighterstl (Member # 11947) on :
I notice my cognitive issues become worse in the Summer. The sun, and the humidity that traps the car poop kicks it off I think. I feel much better staying inside with the AC going.
Also coffee seems to help a bit.
I know we are not suppose to have coffee, but I think if we drink a lot of water with a cup of coffee I think we are OK...
These abx's seem to work for my brain fog. But honestly any abx seems to make me feel better.
But these seem to work the best for me.
Biaxin, Tetracycline, Amoxicillin, and some anti malaria worked also. others did help, but these were the best I'd say.
It took me a few months but I'm back at work and have been working feeling 70%-80% better now for about two years.
Give it time and don't get frustrated. That will only contribute to brain inflammation.
Try to eliminate any thing that can cause brain inflammation like looking at a computer screen for to long, TV, Stress, noise, sun, etc..
Posted by richedie (Member # 14689) on :
Is it possible to have Lyme or Bartonella or another coinfection without much brain fog for a while?????? My symptoms are pretty much all physical.
Posted by djf2005 (Member # 11449) on :
yes it is richie i wouldnt be worried man you have your brain still be happy you do!
some people start w losing mental skills, others physcial.
hold onto what u can and keep treating.
for me it was all mental first, physical stuff came later.
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