quote:Originally posted by Hoosiers51: When I would feel totally "out of it," I would get this thing where I would feel like my eyes weren't focusing well... I would be worried my eyes were crossing inwards
Yeah, I have that.
quote:Originally posted by Hoosiers51: But no double vision or swirls, just sort of a fuzzy-ness, but it was almost like I was perceiving the fuzzyness via my brain, not because my actual vision was off.
Visual snow? That's something I experience.
quote:Originally posted by Hoosiers51: People who knew me really well and saw me often did say that sometimes my eyes would look "glazed over" like I was on drugs or something, and I think that those were the times I was experiencing that weird sensation where I felt like the eyes couldn't focus.
People have said the same thing to me! I think in the near future I'll perform a Bactrim run; I'll find a way to get the stuff. Thanks!
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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Try Rifampin and Zith combo for Bartonella. That's what cleared my head up and also helped alot of people on this board.
Posts: 770 | From USA | Registered: Jul 2006
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posted
I have an apt. with the same doctor on Thursday. I'll ask about what type of tests she's waiting on. Anyone else want her opinion on something?
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I think I was on Zithromax with Bactrim DS, when it was working really well for me.
Didn't get "visual snow"...it was moreso just the feeling like your eyes are crossing, and that makes things not really come into focus well. Though keep in mind my eyes weren't literally crossed, just felt like it.
Another thing that helped my brain was Zithromax with Plaquenil. Plaquenil helps Zithromax penetrate better. There is a study on that, I can pull it up if you'd like. Or you could search "hydroxycholoroquine macrolide" on this site.
The Zith/Plaq helped my psych symptoms (get agitated easily, fly off handle at people, irrational thinking, neediness). But I think it's worth a try for people with suspected Bart even if they don't have those exact psych symptoms.
The Bactrim DS/Zith is what helped my brain fog, DR type stuff. I think Bactrim was the main player in the progress, but I felt I should mention I was on Zith with it too, in case you have the opportunity to add that one as well.
The combo might be more effective than just Bactrim DS. But if Bactrim DS is all you can get a hold of, better than nothing, for sure.
Right now I'm on Bactrim DS with Clindamycin (which is kinda sorta similar), and the Bactrim still seems helpful, but I do think the Zithromax gave the Bactrim more of an effective edge.
Also, just because this worked for me, doesn't mean it'll work for you. BUT, I think it's worth a shot. If I would have only tried Rifampin, I would have missed out on a lot, so in my case, the experimentation was worth it. Likewise, there may be something else not mentioned here that is the "right" drug for you.
Honestly, I would try both combos at some point...Zith/Bactrim and Zith/Plaquenil.
I would have never believed the brain fog/DR could go away until I stumbled upon something that actually worked for me. Then I was like, "Holy crap, it was a bacteria the whole time."
For me, Zith alone was not effective.
Also, I didn't have success with Rifampin. Haven't tried Levaquin yet but plan to eventually. Cipro didn't help much if at all.
Another thing to keep in mind is that if you're dealing with actual Bartonella and not BLO, you should see progress within 2-3 weeks, 6 weeks max, because the reproductive cycle is fast. Can't comment on BLO, that's a different ballgame.
I get the sense that Levaquin and Rifampin treat BLO, and that Zith, Bactrim, etc treat actual Bartonella (the kind that has been studied for awhile...cat scratch fever....also now known to be tick born). That is based on reading Dr. B's guidelines, Wikipedia, and my own experience.
This is all stuff I just typed on someone else's Bartonella post, but I figured I'd repeat it here.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
ps--just saw you said you treated "bartonella" with rifampin and cipro. Haha...read my above post carefully in that case, especially the last 1/3. I tried both of those before I found something that actually worked, so don't loose hope.
You may actually have Bartonella and not BLO, and that's why those meds didn't help you.
If you are interested in herbal tinctures, I also herxed like heck right away on a tincture called "BLT" that is for Bart and Lyme, all herbal. PM me if you want the number of the doctor that makes it. Lots of West Coast Lyme patients take it.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Some people who have been tested have posted here: http://forums.aboutmecfs.org/forumdisplay.php?f=57 at least one with chronic lyme. She has been to a LLMD and been treated for lyme for a long time but it did not help.
Could be XMRV lowers immune system so it does not control the lyme despite antibiotics. There is some speculation about such a thing.
Posts: 366 | From Europe | Registered: Nov 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by StephenC: I have an apt. with the same doctor on Thursday. I'll ask about what type of tests she's waiting on. Anyone else want her opinion on something?
Hi Stephen,
I have an appt. in mid-Jan and would like to be prepared, esp. on the thyroid issue. Knowing Armour Thy. is no longer an option and finding that Naturethroid and Westhroid are also in that same catagory, what is your docs take on the best course of action?
I really need the thyroid meds and want to avoid synthetics if I can. Any suggestions of what I can research / do before my appt.?
Much thanks to you in advance.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm not sure why everyone is having such a tough time getting the Amour Thyroid. Walgreens has been filling it for me this entire year, including this month.
Very strange.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I saw Dr. S. again today. I think she's waiting on an NIH endorsed test; something that will be available in Feb. or Mar. of next year. I'm going to wait until then to get tested.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Seek, 60mg
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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