posted
I have been using high dose combine oral ab therapy for 14 months. There has not been any recovery in my serious memory impairment up to now. Moreover, there has not been any recovery of my fatigue either. I started to think that I could not recover from this illness with the treatment anymore. Being hopeless for future is a very boring sense. I am going on ab treatment persistently. I had SPECT done and it out came normal. I am applying detoxifikasyon treatment. I am so confused about what to do. I have been suffering from lyme illness for 16 years. Co infection tests were negative. However, because of doubt(air hunger and night sweat) I have been using bactrim+ artemisin for babesia for 2 months. I have not seen any effect of this treatment yet. I had previously used various supplements for memory impairment but I had not seen any effect of them. Is there anybody who lives the same situation and gets recovery from memory impairment? Or is there anybody who has any advice?
Posts: 182 | From turkey | Registered: Jan 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
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Sorry, my memory is really bad too. There have been times I felt clearer and when I could actually remember things I felt like a genius.
Acetyl L Carnitine is supposed to be very good for your brain. It is given to people with dementia. Coconut oil is also good. Also huperzine and fish oil.
Bactrim DS helped my mental fog so maybe you will also get some benefit from it. I took it with zithro or biaxin.
-------------------- 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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posted
The drug Rifampin was what helped my hubby most mentally. The first time he took it was back in 2005 I think -- he only mananged to take 20 pills in 20 days at that time. But it was like it woke his brain up -- he almost became hyper -- he had been quiet and not his normal self since he first got sick in 2001.
He did eventually take higher doses of Rifampin and I think it is the med which helped greatly with his bartonella in combination with levaquin.
But the rifampin by itself was a great help mentally. It crosses the blood brain barrier. The drug is mostly used for T.B. (tuberculosis) -- don't know if it is available in your country.
Even if you do not have posiitve tests for bartonella most LLMD's in the U.S. will give patients a trial of bartonella meds to see if it improves their symptoms -- the tests for that infection are just about as bad as the Lyme tests unfortunately.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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For me it was bartonella. I was seriously impaired and am back to normal now.
I treated parasites when I treated bart, so that also could play a part.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nefferdun
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Member # 20157
posted
I used rifampin first but did not get any relief ao after three months I switched to Bactrim DS and biaxin. In about a month I began to clear up mentally and emotionally. Not back to normal but much better. I hope that you see some improvement soon.
Do you have trouble remembering nouns? I believe that is a big part of the memory loss. You can't remember the names of things and people. At one point I forgot my son's name for a few minutes. I was just looking at him, thinking "what the heck do I call him"!
I also forget what I am preparing to do, almost immediately. I just falls out of my brain like it was never there. Notes are of no use because I forget to look at them and I can actually prepare to write a note and forget on my way to the pen and paper.
This is the worst part of the disease for me. That and the depersonalization. But it is much better.
-------------------- 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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posted
For me, it took 8 months of babesia treatment for it to finally be defeated. However, that was probably because it was being undertreated, with low dose malarone for 5 months first, followed by 3 months of mepron + zithromax/clindamycin, with artemesinin thrown in at the end. So, maybe you need to find a different treatment. Not sure what is available in your country. Some people are having better success with lariam, coartem, alinia, primaquine, chloroquin. Maybe do an archive search for these drugs, see what experience people are having. Then check to see what you can get where you live.
But when I first started treatment, I had a spell of not being able to read, then other problems that have since decreased. Still have short term memory problems and trouble remembering nouns. The "fog" is mostly gone. This is after a lot more treatment than you have had, and some of it IV.
Any chance you could find someone who would give you IV for a while?
Often lyme patients show hypoperfusion in SPECT scan. Others have abnormal MRI (with lesions showing up), and abnormal EEG. So, you may not have had the type of brain scan that would show problem areas yet.
Have you been following the XMRV virus findings now in the news? Some people think that fatigue that does not respond to lyme treatment could be a coinfection with this virus. And there have been positive tests. For now, maybe you want to concentrate on lyme and babesia for now, before you jump into these murky virus waters.
Posts: 8430 | From Not available | Registered: Oct 2000
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Before, I used rifampicin and moxiflokasasin for 3 months with the suspicion of bartonella. I think if it was bartonella there would be decline in anxiety and panic attack. However, that did not happen at that time.
Depressive thought, anxiety, air hunger, leg pains and sweating make me think about babesia. However, the fact that I have not seen any response from bactrim and artemisin treatment for 2 months shows that I am resistant to these drugs or I do not have babesia.
Now, I have ordered quinine from the abroad and I have an intention of trying clindamycin+quinine treatment.(if I could tolerate) When I previously used clindamycin by itself(2x600mg İM), it caused prominent herx reaction. Maybe I can get response to this treatment.Ahmet
Posts: 182 | From turkey | Registered: Jan 2008
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nefferdun
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Actually when I started bart treatment I had an increase in emotional problems, not a decline - at least not for several months, so maybe you need to give bart treatment longer.
However Bactrim DS will get after both babs and bart. Use it with a macrolide.
-------------------- 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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posted
Good luck. You probably know that quinine can cause hearing loss and tinnitus. They say it is reversible, but you would need to be alert to this possibility. One abstract I read said it was dose dependent.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
i began to use rifampin 3 days ago. my anxiety and panic feeling increased but my depressive feeling and memory impairment and fatigue partially decreased.
i suspect bartonella but i am not sure
Posts: 182 | From turkey | Registered: Jan 2008
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nefferdun
Frequent Contributor (1K+ posts)
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posted
Hang in there. The herx you get when you attack bart is very emotional. It is really good your mind is clearing some already.
-------------------- 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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quote:Originally posted by sixgoofykids: I treated parasites when I treated bart, so that also could play a part.
what was your parasite protocol?
-------------------- We will win Posts: 135 | From California | Registered: Jul 2010
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Andie333
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I had severe cognitive impairment and never thought I'd be able to work again. I've been on abx for the past 5 years and have seen incredible improvement.
I've not only been able to work again, I'm in a managerial position in a high-stress, corporate environment. I feel I got the most improvement from a combination of rifampin and regular (weekly) acupuncture.
For me, the cognition problems were the most horrible, so I completely understand your concern.
Send me a pm if you'd like more information.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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I am using xanax 2-3 mg everyday after begin to rifampicin because of increased anxiety
I hope this emotionally herx subside soon
Confusion is a very bad thing. Moreover, if there is not any scholarly doctor to guide you. (there isn t LLMD in Turkey) Anyway, thanks to God this forum very usefull.
After I had used rifampicin again, I began to believe more and more that it was bartonella. I used rifampicin in January too. Emotional herx emerged at that time. However, after I gave up using rifampicin, my memory got worse and I forgot the benefits of rifampicin when I used it. When I looked at my daybook, I remembered the things that I lived at that time again. . 8 months passed and having regard to the fact that the borrelia bacterias loading decreased with the treatment during that time, I think that dramatic response to current rifampicin in 3-4 days is somewhat related to regress of lyme. Of course, I will see whether this response will continue or not in the upcoming days.
When I added doxy to rifampicin in January, I stopped it for 3 days as doxy made me feel depressive and I could not tolerate it. But after April, I used doxy for a long time and I did not live herx like I lived in January
Because of air hunger, I still doubt that I have babesia. But I have read that there is also oxygen deprivation in bartonella and I think that this air hunger can be related to it. Bactrim that I used because of the doubt of babesia did not cause any reaction similar to herx except from temporary fatigue. However, fatigue emerged at three days every week I used artemisin . I am still so confused with babesia. But as long as I know, even though i have co infections two of them(babesia and bartonella), bartonella is the first to be treated. I am thinking of stopping artemisin that I use together with bactrim( I have not seen any improvement with babesia treatment for two months) and go on a treatment only for bartonella. I will go on the treatment rifampicin by adding macrol(2000mg) or doxy(600mg)
Posts: 182 | From turkey | Registered: Jan 2008
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