posted
Please tell me what got rid of your brain fog? Its driving me nuts! I dont have it all the time but I have it often.
My head is so full of cotton and I can hardly even think through it. My ears are buzzing driving me crazy!
Please tell me what got rid of the fog for you? I hate not having the ability to think
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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posted
Mine was mostly from bart. Cipro cleared the brain fog up quite well. Rifampin did OK at it too.
Posts: 146 | From Maine | Registered: Aug 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I think the biggest thing that helped me was systemic enzymes. It reduced the headaches and the pressure feeling.
I had amazing results when I tried Resveratrol. I had just read Stephen Buhner's book and was ramping up on his herbs.
When I started Resveratrol, I had a sudden clearing of all the brain fog. Omg, I had forgotten that I used to be able to think like that!
I could think, my short term memory improved, I could do math in my head. I could hold a conversation without having to plan each sentence.
I had a pile of paperwork that had been sitting for six months, and I went ahead and took care of it as if it were no problem. But the problem was that I had awful back pain...I could feel exactly where both kidneys were located, and they hurt like hell.
So I stopped all the supplements. After a couple days when I felt better, I tried one tablet of Resveratrol and the kidney pain returned.
So...I've been afraid to try them again. All the brain fog came back.
Sigh...
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I can't think, I can't read, I can't carry on conversations... I can't remember my education, I can't remember how the laws and policies and terminology related to my former career.
I'm really scared that I'm somehow brain damaged from this illness and from taking so much xanax for the insomnia. I'm really scared. I feel so stupid all the time. Zero short term memory.
This has been really bad for several years. Started over ten years ago. Only in this last year I've gotten so bad that I can't calculate a tip in my head. I feel so lost.
I just started treating for parasites and biofilm. But is it ever possible to be smart again? To regain your intellect? To have one thought lead to another thought insead of being in a dark worldless, thoughtless stupor?
It's gotten so bad I don't feel like socializing at all. Even with my best friends I find it difficult. It' just so frustrating and isolating...
Sorry for venting but I just want to know, is this the way I'm going to be forever? Is it possible to be smart again? Even if this has been going on for such a long time?
I just want to know what I'm in for so I can adjust my life... I just want to know. If my brain is never going to work again, I want to know so I can stop making plans for "when my brain is better..."
Posts: 87 | From NorCal | Registered: Feb 2008
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posted
One more thing, is it possible to ever have access to your memories again? Memories from your life and about things you used to know? Or is it just gone, like a stroke?
Posts: 87 | From NorCal | Registered: Feb 2008
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t9im
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posted
For our daugher it was 6 months of pulsing with Tindamx. This was in combination with Mepron and Zithromax.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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dbpei
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Member # 33574
posted
From what I have read, Jalama, your brain will get better when the infection clears. There are many people that have shared testimony that their memories return and they feel normal again.
My LLNP says that IV ABX will better penetrate the blood brain barrier and recommends for neuro lyme. I haven't tried yet, but wonder if you have - or if you would consider...
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Brain fog can occur due to ammonia build up in the brain that is released as part of the "die off". Jernigan Neutriceuticals sells a product called CNS/PNS Neuro-Antitox II, which is a homeopathic formula that removes the ammonia in the brain. I found this to be extremely helpful for my brain fog. Also, keeping my diet gluten free/dairy free helps me as well.
Hope this helps.
-------------------- Shelly Posts: 73 | From New Jersey | Registered: Apr 2009
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posted
"I can hardly even think through it." "I hate not having the ability to think".. Jackie, could you share your secret with us? With all due respect I notice in one of your posts you drove 9 hours to see Dr. J in CT - how on earth did you manage that feeling so horrible? I can't even be a passenger in a car let alone drive.
Posts: 29 | From dreamland.. | Registered: Apr 2012
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AuntyLynn
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posted
IV antibiotics for neuro symptoms - best treatment.
Neuro patients needed from between 25 to 52 weeks of IV abx to get sustained relief from neuro-lyme symptoms
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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posted
BTW Jalama:
A NP friend of mine says that Xanax for insomnia is an "off label" use - which is not very effective!
[ 06-12-2012, 02:07 PM: Message edited by: AuntyLynn ]
Posts: 1432 | From New Jersey | Registered: Jan 2012
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quote:Originally posted by dsrtldy: "I can hardly even think through it." "I hate not having the ability to think".. Jackie, could you share your secret with us? With all due respect I notice in one of your posts you drove 9 hours to see Dr. J in CT - how on earth did you manage that feeling so horrible? I can't even be a passenger in a car let alone drive.
I take ativan to help clear up my head. Also, I had my father inlaw and my husband with me who did all of the driving to see Dr. J Also, my brain fog like I said comes and goes but when its here it is INTENSE. I cannot even think!!
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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Catgirl
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posted
Mine is slowly going away with babs treatment.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Carol in PA
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posted
I think there may be different ways to clear the brain fog. As I wrote, it cleared completely in a couple days when I began taking Resveratrol.
By the way, my poor reaction (intense kidney pain) does not seem to be common...only one other person at LymeNet has said that it also happened to her.
Reducing the body's inflammation will help. Inflammation prevents the red blood cells from circulating properly, and the brain cells do not get enough oxygen and blood sugar.
When any cell is starving from lack of nutrients, it does not function well. The brain uses most of our nutrients, it takes a tremendous amount of power to run.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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canefan17
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posted
Pinella by Nutramedix (Cowden) is specifically used for ammonia and brain fog and CNS involvement.
I've never tried it.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Maya12
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posted
Have you guys looked into kpu at all this seems to cause issues with detoxing so you get a build up of toxins in the brain like ammonia
Posts: 1632 | From Canada | Registered: Feb 2012
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Lymedin2010
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posted
I had the worst brain fog, headaches, head and neck burning. So bad that I could not walk and stand for long. Could not even stand to take a shower and had to shower laying down.
It felt like a fire cracker had exploded in my head and as if something was lodged in the center of my brain and the pain somehow radiated from the center outward.
I would lay in bed in agony and thought to myself there is no way I could go on living like this, I would have no choice.
IV Rocephin gradually improved my head and neck symptoms and got me 90% better. I slid back after that and not until Biaxin and Doxy did I get better, better than IV Rocephin for head and neck. Not to say I was anywhere close to cured, since I had developed so many more symptoms along the way.
When I remove the Biaxin I get the return of symptoms and when I substitute Doxy I get a return of symptoms, nowhere near what it was, but I am sure can get to that point if treatment stops.
So if I had head and neck issues and major brainfog, I would take IV Rocephin, Biaxin, Doxy and Flagyl or Tindamax. The latter two for cyst busting.
Be prepared that Doxy causes increased intercranial pressure and you will feel worst and as if it's not working and then better as the BB enter into cyst mode. I felt as if I was regressing initially with doxy and then gradually the symptoms in the head and neck melted. Took about 3 weeks.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
IV Rocephin cleared my brain fog. i was on it for 6 months. Unfortunately it came back within a few months but never quite as bad. I kept on treating and treating with orals for Lyme and Co.and then saw the biggest improvement AFTER 8 months of Bicillin IM injections,Flagyl and Malarone. And lots of supplements.
I felt like I was never going to get my brain back or read,concentrate again. I felt so spacey and it was AWFUL And I also had brutal headaches and neck aches on most days of the week. My brain feels totally normal now.
It will get better. It takes a lot of time and persistence.
Good Luck!
Posts: 256 | From long island, new york | Registered: Feb 2008
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nefferdun
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posted
You have to get rid of the infections causing it. Babesia turned me into a complete idiot. I could not follow a train of thought or remember anything.
Now I am treating protomyxzoa which can also cause brain fog but I am much better than I was. I still struggle trying to learn something new.
The metyl cycle mutations have shed a lot of light on my brain fog as well. The CBS mutations causes it so getting rid of ammonia should help. These things just don't turn around over night. It takes a long time.
I tried all the supplements ever mentioned to help brain fog without any success. I don't think a supplement is going to do anything until you get at the source of the problem.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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AuntyLynn
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Lymedin2010: If you don't mind my asking - how long were you on IV Rocephin?
Laurie sm: Also, if you don't mind ... Did your doctor assume you were well at 6 mos. IV? Or did he treat w/IV for another 2 months AFTER you felt well? (As is the current protocol for neurolyme.)
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
I feel the same...dumb, dumb, dumb. I had a day today where my brain felt better than it has in a long, long time. It was wonderful - so absolutely wonderful to have my thoughts straight and to be able to think/reason! I've had to take a leave from my teaching job because of this illness - the physical part is hard enough to understand, but the mental part is SO confusing. We think we're nuts. My doc said, "Of course you feel that way. The bacteria is literally in YOUR BRAIN, but there's a light at the end of the tunnel". I'm on plaquenil, cefdiner and zithro now. I was on doxy for a month before this. I have a ways to go though and will be changing meds I'm sure.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
AuntyLynn-I didn't feel well after the 6 months of IV Rocephin but much improved. I would have stayed on it longer but my arm was getting infected at the picc site and i was getting horrible gallbladder attacks.
I was on ceftin,Biaxin and then Doxy for a while. But i still had many symptoms and my brain was still not right. I noticed the most improvement after the IM Bicillin,Malarone,pulsed with Flagyl.
After I stopped that regiment I treated with a kinesealogist with homeopathic remedies. I refused to give up even though I often had little hope for recovery. I felt so sick and in so much pain every day.
JLF2012-I too had to quit my teaching job. And people don't understand that Lyme and Co. affects your brain. They think we just have sore joints and we are depressed and crazy! This site and an understanding LLMD are very helpful!
Posts: 256 | From long island, new york | Registered: Feb 2008
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Lymedin2010
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posted
I reaped the most benefit from the first 3 weeks in regards to head and neck pressure. �By week 3 I only had 10% of brain fog and all else gone. �Thereafter each week I would get a new symptom, from ear ringing, stiff jaw, stomache muscles burn, pins and needles. �Pains at various parts of my body, and visual disturbances
So after almost 4 months of IV Rocephin, each week I would get new and worst �symptoms. �My head and neck symptoms started to return slowly with continued IV. �Month 5 I tried Ceftin, which is the oral cousin of Rocephin, and still declining.
Then month 6 I did Doxy and Biaxin. �It felt like I was doomed and I could feel the bacteria scatter and crawl/vibrate in my head. �In order for someone to feel that, �there must be a huge load. �I have heard of at least 2 other people who felt the same in their head.
Doxy calmed all the symptoms down, most all head and neck and muscle burning.�
I've gone off this combo, to try new ABX, only to find a return of symptoms and some new ones too. �Now back on it and on track once again.
I think it must be working against Lyme and other coinfections well for me. �Maybe Bart, Fry bug, or even parasites?
Posts: 2087 | From NY | Registered: Oct 2011
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AuntyLynn
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Laurie sm - Thanks for that info! So sorry you kept getting PICC line infections - but this is not the norm. If you look at the Stricker study above, you will see that treating with IV until symptoms are gone, then treating for an additional 2 mos. before stopping IV is the new protocol/recommendation.
Have you seen the recent post by Guido entitled "Gemofloxacin from Mexico"? This is an oral abx which Guido says is used in Europe and is much more effective at crossing the blood-brain barrier than most orals. I wonder if this might be the answer for folks with neuro-lyme who cannot tolerate IV.
As many have observed on this site, successful treatment is very individual - I wish you the very best for a return to good health!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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Lymedin2010 -
Thanks for your response!
I have to ask ... what makes you think that your "new" or "worse" symptoms were a sign that the IV or Ceftin were making your infection worse?? I would read those symptoms as a HERX reaction!
And your comment that "Doxy calmed all the symptoms down" -- gives me the impression that the Doxy was NOT as EFFECTIVE at hammering the bugs!
Now you are "back on it" - back on what? The Doxy or the IV?
Stricker (study link above) found that neurolyme patients needed a MINIUMUM of 25 weeks on IV to feel well - that translates to over six (6) months on IV!
I agree that it makes sense to check (or treat) for coinfections, as for so many here, these treatments seemed to have opened new doors for improvement.
My loved one received 1 gm of Rocephin (I think they are using 2 gms now) for 28 days - she didn't show any signs of Herxing at all (just napped more in the fourth week)... and she is NOW LIVING in an Alzheimers Unit with absolutely no say over her own life! I am convinced she had Lyme for at least 15 years before diagnosis. I am fighting legal battles with family trying to get her the right help.
Therefore, I agree with the ID docs who say that this infection is nothing to treat lightly; and probably needs treatments that are just as agressive as those for Syphilis or Tuberculosis.
I wish you nothing but the best for a return to good health.
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With all due respect I notice in one of your posts you drove 9 hours to see Dr. J in CT - how on earth did you manage that feeling so horrible? I can't even be a passenger in a car let alone drive.
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