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» LymeNet Flash » Questions and Discussion » Medical Questions » Really down...any recent successes/brain fog symptom relief?

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Author Topic: Really down...any recent successes/brain fog symptom relief?
triathletelymie
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I am having a really down day! :-(. I was reading the success stories but they are from two years ago! Any recent successes? I have been in treatment ten weeks today with absolutely no improvement what-so-ever...probably worse...thinking that I will have this psych stuff/drunk feeling brain fog 24/7 and short term memory loss for the rest of my life...and I am only 48!
Any encouragement is appreciated! And...how long did it
take to see any improvement after starting the antibiotics? How long is the "feeling worse before you feel better" supposed to take/last? This stinks!!! :-( :-( :-(

--------------------
? 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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Lymetoo
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Took me more than a year to feel any better... on to about 2 yrs before I turned the corner. Sorry to say!!!

Encouragement?? You have found the problem and are IN treatment. Some can't say as much about their own situation!

Plus... you are going to get well!! [Smile]

 -

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

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wealdsteve
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I have been on treatment for 5 months and i can say progress is very very slow. I have lost a couple of symptoms but developed others. Always questioning whether i really have it or not, but i know i do. Keep at it.
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Haley
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Hang in there, it's a long road. I have been treating one year. Brain fog is by far my worst symptom. I call brain damage rather than fog.

I thought that it would never lift, that somehow once it was in the brain there was not a lot of hope.

After one year of treatment I feel that it is starting to lift a bit. For me I think the key is Babesia treatment. Mepron, Malarone, Artemisinin and Zith. I don't have a positive test for babs.

I probably am not the best example because I really didn't have an LLMD for the first 6 months. I've bounced around from one med to the other. It may go much quicker for you.

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triathletelymie
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What is ASD?

--------------------
? 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

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
triathletelymie
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I thought brain fog was due more to bartonella...not babs or lyme...thoughts?

--------------------
? 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

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
stork
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Just did some google searches on ASD and found the same identical "testimonial" about it. Also - all information about the product is originating from the same author. Unfortunately such products are guilty until proven innocent.

--------------------
long road since 2010
abx got me over the hump
diet, detox, and herbs have got me to heal

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stork
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Triathlete, I have had success in combating Brain Fog through the use of Biaxin as well as Diflucan, although not at the same time. Although I've been told Biaxin suppresses neuro lyme but cannot easily eradicate it, it certainly helped me turn a corner in my treatment.

Diflucan has great brain penetration - although not extensively proven, it is believed to weaken the lyme spirochete and will also help prevent candida. Some docs won't combine Biaxin with Diflucan because of risk of drug interaction, although I believe it is pretty minimal - that's one you should talk to your LLMD about if you're interested.

Biaxin will give you strong neuro herxes and might make you feel worse for a while. Stick with it and be sure to be taking a good probiotic. Because you were diagnosed 5 months after your bite and have neuro lyme you have a long road but you will get better. I was where you were several months ago and I am steadily improving - cognition and memory are a lot better now.

--------------------
long road since 2010
abx got me over the hump
diet, detox, and herbs have got me to heal

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Lymetoo
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Beware of new posters hawking "new" products.

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

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Lymetoo
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quote:
Originally posted by Haley:


After one year of treatment I feel that it is starting to lift a bit. For me I think the key is Babesia treatment. Mepron, Malarone, Artemisinin and Zith. I don't have a positive test for babs.


Triathlete... Does this sound familiar!? I think this may be your problem as per my PM.

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

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Haley
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Yes, Triathelete. I have read and been told by LLMDs that brain problems are usually Bart. Bart may be contributing to my brain fog (as I do have a positive Bart lab) but I am convinced that the antimalarials are hitting my brain problems.

I recently went to a seminar that had Dr. B and all the important LLMDs there. There was an ND there that decribed a case history of a Lyme patient that spoke 7 languages and was very bright. She could not remember anything and "felt stupid all the time."

Dr. A. treated her for Bart and Lyme for 2 years but it was not until he decided to treat her for Babs that her cognitive ability began to improve. The other thing I found interesting is he mentioned that Babs usually has a different type of headache. Usually in the back of the head, described as a pressure or odd sensation. I have had an odd sensation at the crown of my scalp since I was bitten.

This is not the case with everyone but I believe that it is my case.

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bcb1200
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My brain fog is a lot better / gone. (knock on wood.) I'm 7 weeks into treatment. Most of my symptoms are improved and I was infected for over a year without any symptoms. I crashed hard in Feb 2010 with malaise, fatigue, brain fog, dizziness, tinnitus, full ears, blurry vision, floaters.

I've done 6 weeks of Doxy and Flagyl and have just switch to Biaxin and Amantadine. Still have some symptoms (Mainly ear full ness and ringing), but other symptoms are gone or much improved...including brain fog.

I still sweat an abnormal abount. Babs?

--------------------
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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Andie333
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I had been a journalist, and when I was first diagnosed with Lyme and Bart, I found myself unable to write at all. Words were confused for me; I no longer understood the fundamentals of grammar. I had severe brain fog.

It took quite awhile for those symptoms to lift. I was thankfully able to work after being on antibiotics for two years, but I struggled each day with significant brain impairment.

In just the past year, I've noticed discernible cognitive improvement.

I'm still on antibiotics--five years now--and still working (though no longer in journalism). I had a lot of severe symptoms initially, but the brain fog was probably the thing that scared and frustrated me the most.

Stay on course and be patient. Give yourself the time to become one of the success stories!

Andie

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triathletelymie
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Up

--------------------
? 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

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
lyme987
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I had severe brain fog , dizziness, and intense pressure in my head. I had all coinfections and started feeling relief very quickly on rifampin.

I had lyme for over 20 years so there is hope!

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Hoosiers51
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I have posted about my experiences a LOT, so I feel redundant, but I will repost, just really simply since I'm tired....

Bactrim DS with Zithromax seemed to help my brain a lot. I basically got to a point on those drugs where I felt like I was living completely in my old brain again.....no derealization, no brain fog, "sharp as a tack."

I haven't been sleeping as well now, and I may need different Bart treatment, so I'm not quite as great as I was brain-wise when the abx were really helping me....but I would say my brain went from 5% of old self, to 20% over time and treatment....then with Bactrim, it jumped to like 95-99% in about 2 months.

Now I may be back to about 85-90% brain wise, but I've been playing around with some meds, not sleeping well, etc.

So I think that if your brain fog is due to infection (as opposed to bloodflow issues, toxins, etc etc).....eventually you'll find the right drug for what's going on, and when it's working, you will know within a couple months, I'd hope.

I haven't posted in success stories yet about my brain improvements, but I will at some point.

Rifampin helps others, and Levaquin, others. For me it seemed to be the Bactrim.

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Geneal
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Actually, doxy helped initially with brain fog.

It was biaxin and diflucan (together) that really got rid of that for me.

It is slow improvement though.

Sometimes hard to define.

Little bit day by day.

My brain fog didn't just "disappear".

Hugs,

Geneal

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pj1954
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zithromyacin,artemesinin,malarone,flagyl and minocycline all have helped me with fog but have to say zithromycin did it best for me !

I have babs !

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triathletelymie
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Up

--------------------
? 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

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
triathletelymie
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up

--------------------
? 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

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
kday
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You can get ASD from Russian Pharmacies. Unfortunately, to find real information about it, you have to translate Russian sites.

It does have some interesting history behind it, and I read some really interesting information from Russian websites.

I believe there are atleast 2 or 3 pharmacies that still produce it.

That being said, I'd order it straight from Russia before buying it from some dishonest hack trying to market it for Lyme.

http://translate.google.com/translate?hl=en&sl=ru&u=http://lib.rus.ec/b/159016/read

Shopping: http://www.google.ru/search?tbo=u&tbs=blg:1&source=og&q=%D0%90%D0%A1%D0%94-2#q=%D0%90%D0%A1%D0%94-2&hl=ru

It looks like it's roughly $4.40 plus shipping.

I believe the Russian Government no longer recommends it be used by humans but it is given to farm animals to treat a variety of diseases (some malignant). I am not one who listens to the government.

Note: I have never used this product and don't plan on using it.

[ 11-09-2010, 11:42 AM: Message edited by: kday ]

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Marnie
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Brain fog has many causes.

Often yeast is the culprit.

Have you been really really good about pumping in probiotics when on abx.?

You might find avoiding foods that are high in histamine may HELP, not cure, but help. Lists of the foods and beverages are on the internet.

Scroll down to "brain fog" here for a primer (see "caused by"):

http://www.nutritionreview.org/library/allergy-immune.php

We need histamine (from histidine) at certain times, but it must be used and then broken down via DAO.

Vitamin C and B6 (take the sublingual form - PLP/P5P from Source Naturals) support/increase activity of DAO.

Vitamin C comes in gelatin "timed release" formulas too (easier on the stomach). SunDown makes one. I get it at my grocery store (Publix in Florida).

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nybasketball212
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As you know we're in the same boat Triathlete. I honestly believe we need Babs treatment, whether a positive Babs test is produced or not. Keep me posted on how you're doing!
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triathletelymie
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Up

--------------------
? 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

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
lauirel
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Triatheletelymie,

I think it was mentioned here about yeast as causing brain fog and then a statement about many things being able to cause brain fog.

It has been my experience that toxins, as Lyme is a biotoxin disease in its own right, is the main cause of my own brain fog. Yes, I have yeast, and other co-infections, but its the toxins produced from these that I attribute to my own previous brain fog.

Addressing the methylation system of my body has been the single most helpful thing for helping to clear most of my brain fog, improve my memory and attention span.

I think Marnie also mentioned histamine. Histamine is a big player in the methylation system, and when a block occurs due to the toxin exposure from Lyme and then damage ensues from the block, then histamine can no longer be broken down in the body. (reductase)

I think many notice an improvement of brain fog with detoxification measures.

Laurie

--------------------
Never doubt that a small group of thoughtful committed citizens can change the world; indeed, its the only thing that ever has.

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DJP
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T,
I had neuro lyme with similar symptoms, brain fog, memory problems, concentration, word finding, using the wrong words, excruiating headaches, nauseau, dizzy, ear noise...the list goes on and on...
Anyhow, I did oral antibiotics for about 18 mos and did see improvements in other symptoms, but the neuro once seems to be getting worse, other than the brain fog which lifted a bit.
I saw a Lyme neuro and did 6weeks of IV along with Rifampin. I did doxy for a month or two after that and I think Medpron was mixed in there.
The doc was treating for Bart along with the Lyme.
I think the IV and the Bart drugs are what finally pushed me over the plateau.
I had been off antibiotics for over a year and doing great. I've even returned to work part time. I didn't ever think I would get to this point! It is an extremely long, up and down journey. If you are a triathlete, then this may be the hardest on yet, but you have the strength within you to do it!
I used to be a runner and that is the only thing I haven't been able to get back at this point. I end up with those horrible headaches, but I'm ready to try it again.
I just started to take doxy for something else and it is causing some herxs and flares, but nothing compared to how sick I was!
Good luck!

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