I am a university student diagnosed with lyme and ehrlichia by igenex testing. My symptoms have been mainly neurological in nature - moderate to severe brain fog, band-like headaches around the head, difficulty reading, etc. These symptoms have been predominant throughout - my fatigue has been mainly mental and not physical. I used to have very bad head pressure and some lyme-arthritis symptoms, but these have subsided through antibiotic treatment. My neuro symptoms only seem to be getting worse or staying bad.
I did 26 days of doxy @ 100 mgx2 and am now at 1000mg oral amoxicillin x3 I am currently under treatment with a LLMD who seems to be pretty gungho with oral antiobiotics. I am also taking herbals - samento, pinella, burbur, and parsley by nutramedix +multivitamin/bcomplex/ginko. These seem to have helped some of the brain fog but its been pretty much constant. I feel scarily disassociated from my body and what's going on around me.
I was wondering if any of you have had success with certain supplements or antibiotic approaches with these symptoms in the past. If anything, I am able to think and talk better than when I was at my worst but my reading ability still sucks. I am also wondering what I should ask my doctor about considering that my symptoms are neurological and oral antibiotics don't seem to be helping that much. Also interested to hear your perspective on exercise for these kinds of symptoms, and if any of you have been through these and experienced recovery.
Thank you. I hope to get my life back and wish you all the best. Weird to think that I felt perfectly fine 3 months ago.
Posted by Ian (Member # 24637) on :
I know exactly how you feel. I'm a college student as well. I felt perfectly fine just three months ago (well, basically, I've had symptoms for 13-14 years, when I was infected) and today I have intense pressure in my head, mental confusion, and dissociation, just as you do.
I haven't started treatment yet so I can't give you advice on abx or supplements. I'll link Dr. B's Guidelines just in case you haven't read them though. They have excellent info on supplements for those with severe neurological problems.
In terms of exercise I have done weightlifting. I'd say exercise helps, but it depends on how you define "helps". Whenever I exercise I get a fast heart rate and even worse headaches. The headaches usually last for hours after. I read that this is because exercise improves circulation. Also, it cause micro-tears in your muscles which might cause Borrelia to enter your blood stream. Exercise is still good because it forces more Borrelia into your blood, so your immune system can fight it. I just warn you: you will feel worse during and after exercise.
Are you on medical leave? If you are having severe neurological problems it may be best to go on medical leave. I was forced to go on leave last week. Now that I am out of school I can completely focus on learning about Lyme and getting treated. Treating Lyme is not a simple or short process. It is a marathon. If you are not on leave I urge you to consider it. I know you want to fight through and finish the semester, so did I. But there's a point when you just need to take a step back and focus on what's really important. Best of luck!
Posted by Ian (Member # 24637) on :
I was reading through Dr. B's Guidelines again (it always helps) and ran across the supplement that he most recommends for neurological symptoms. The supplement is NT factor. I searched it on the web and the cheapest price that I could find is at luckyvitamin.com. Just search "nt factor." You will come up with a list. "Healthy Aging with High Potency NT Factor is well-reviewed on several sites. In fact, I ordered it for myself when I ordered Dr. B's required supplements yesterday.
I'm not sure if I'm supposed to recommend particular supplements and particular sites. Oh well. Posted by stork (Member # 24167) on :
Ian, I'm glad to hear someone who is dealing with the same kind of situation but I am very sorry you're dealing with this. We'll get through it as stronger people.
Leave has not been an option because it would cost my parents thousands of dollars and treatment is not exactly cheap either. Funny how that works. I am considering dropping down to a smaller courseload for sure. I am really banking on getting better this summer, but we will see :-/ I agree that it certainly seems like this will be a marathon.
I've read the Burrascano guidelines. I will have to check out that supplement though - the two reviews I was able to find were positive.
Posted by Pinelady (Member # 18524) on :
Hey, I am also a university student. Where do you go? I started symptoms 4 months ago. I can defintley relate. I know what you mean about wanting to feel normal. Weird to think I was "Normal" four months ago.if you need anything, just private message me!
Posted by daniel (Member # 22201) on :
hi there..
im also a university student in germany. im sick since september 2008. started with treatment in April 2009. I couldn't pass any exams in my sickest time.. now im on antibiotics since 11 months.. and i wrote 3 exams in january.. i passed them all. im not recovered totally for sure.. but im improving. brain improving is a slow process.. your brain needs a lot of time to get "healthy" again. it depends on the time which you were sick before treatment. most people need something about 2-3 years to recover brainfunction. some need less.. some more.. its different.
i hope you feel better soon.. take a break von uni for 1 or 2 semesters. take care.
greetz from germany
Posted by Hoosiers51 (Member # 15759) on :
I have had the difficulty reading as a symptom, and have always had bad cognitive effects from this disease.
The thing that has helped my brain the most so far is Bactrim DS, combined with Zithromax. I believe the Bactrim DS (aka Septra DS) was the biggest factor in the improvement, but I have noticed that it seems to work best when paired with Zithromax or Clindamycin (to a lesser degree than Zith).
Zith alone won't do much for brain fog for me, but combined with Plaquenil it did seem to help my psych symptoms. Plaquenil helps Zith work better and penetrate better.
Some people find that Levaquin or Rifampin help their brain fog.
It could be from bartonella, a bartonella like organism (BLO), or Lyme itself. I think for me it was due to Bart.
Posted by Hoosiers51 (Member # 15759) on :
ps--your doc will probably tell you Bactrim doesn't treat Lyme, which it might not....it is probably working because it helps people with Lyme who are coinfected with something else like Bart.
Posted by daniel (Member # 22201) on :
oh yeah.. bactrim helped me a lot too. in 2 weeks i start my rifampin + bactrim combo.. hope it will kick *** ;D
Posted by NeuroEcclectic (Member # 17783) on :
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