I have been off antibiotics for 4 months - but have to go back on because cognitive status is declining quickly. My llmd is putting me bactrim and erythromycin. Anyone else that has had cognitive problems from lyme have suggestions or thoughts ???
Posted by baldone (Member # 43172) on :
I would be really suspicious of a CO.
Babesia in particular really raised hell with my vision and made me dizzy(feel like I am falling down to one side).
That on top of the brain fog made life really miserable.
For me the turning point has been Artemisinin.
I was positive for lymes 2 years ago and never tested positive for Babesia even though I had most of the classic symptoms.
Long term Doxy kept me functional but never cleared the cognitive/neuro.
On my own I decided to give Art a go as the ID doc I was referred to is a non believer of Babs without a positive test.
I did a 4 day on 3 day off taking 200mg 3x a day. The first cycle after day two was complete misery but after the 4th cycle things were improving quickly.
After I ran out of Art I decided to try Crypto and Sida Acuta but did not see much change after three weeks on it so I went back to Art and now after three more cycles the Neuro symptoms are gone(knock on wood).
I will probably keep cycling on Art for a few months and see what happens but right now for the first time in almost 3 years I feel normal.
Posted by Lymetoo (Member # 743) on :
Have you been treated for coinfections .. especially babesia? Being in MA, you are almost sure to have it.
Posted by marypart (Member # 27012) on :
Baldone,
Is the brain fog gone?
Posted by baldone (Member # 43172) on :
Pretty much.....I am actually suprised.
After battling it for 2+ years I was beginning to think it was something I would just have to live with.
I was pretty sure it was Babs due to air hunger and all the neuro issues but all the tests were negative(could not get a doc to sign off for a FISH). Started the Art 4-on 3-off cycle and felt like I was hit by a truck about day 3. Slow improvement with each cycle and now after 2 months feel pretty decent.
Do you have any other classic CO symptoms?
Posted by Nancy L (Member # 42733) on :
baldone, did you have any peripheral neuropathy? Like fingers/hand numbness/tingling/loss of sensation?
I am taking ART for Bb now (not babesia), and amygdalin foods like apple seeds for brain fog.
The seeds helped the brain fog before I started ART. But I think my eye symptoms are a bit better since ART, and my balance/weaving is a bit better.
My left hand neuropathy may be a tad better, but not much.
When I started the ART a new symptom started. Along my upper spine, a small spot would ache, and it would move up or down about 8-10 inches, depending on when I took ART. Now it comes and goes, with some hours not there.
I think I am killing spinal column area Bb. I understand that medicines move more slowly through the CNS system.
Have been on ART maybe 10 days. Think it is working.
My understanding is that you should skip a week after 3 weeks. How did you hit on the 4on3off cycle?
Posted by LisaK (Member # 41384) on :
I was on bactrim and erythromycin for a few months, and no other abx. I still had much "fog".
I am off all abx now and have been treated (and supposedly cured) for babs.
while I stil get brain symptoms, I have greatly improved and got some IQ points back. I still have lyme and RMSF and Bart, so the jury is still out.
I must say that I have days here and there with neuro and brain issues, but they all(diseases) seem to contribute to this from what I read anyway.
what I am trying to say from experience to you is that I don't personally think from my experience that the combination of bactrim and erythromycin are going to help much with your brain issues.
this is only my opinion and I am not in medical field. just a lyme and co sufferer of 16+ years