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Posted 3/12/2018 2:25 PM (GMT 0)
I've been treating Lyme for a year and a half and suddenly I'm hit with a lot of the symptoms from when 3 years ago: dizziness, muscle twitching, pins and needles, shakiness, anxiety, neck, back and head pain, extra blurry vision. I was tested for ms at Stanford and they didn't believe I had it. My llmd thinks it's Bartonella, but I was on doxy and azithromycin for a year wouldn't that hit Bart too?
Posted 3/12/2018 3:47 PM (GMT 0)
Did you take anything else specific for bart? Usually you need rifampin or rifabutin (or specific herbs - houttuynia, sida acuta, etc).
Posted 3/12/2018 3:54 PM (GMT 0)
No i didn't. Do you think Bart mimics ms?
Posted 3/12/2018 4:26 PM (GMT 0)
Tonya - although I’ve kniwn a few people who did treat their supposed Bart without Rifampin - they all started treatment within months (less than a year) of symptoms starting.

As k07 mentioned - Rifampin/Rifabutin or fluoroquinolones are usually required.

Lyme/Bart can mimic MS. MS is one of the misdisgnoses.
Posted 3/12/2018 7:22 PM (GMT 0)
I've been off all my antibiotics for over a week and my whole nervous system is just not calming down! I tried the klonopin and it seemed to make my panic worse. I am so lost I don't know what to do!
Posted 3/12/2018 9:23 PM (GMT 0)
I think since your symptoms seem systemic (sounds like the ones you listed above are similar to what you first experienced?) that it is not a true MS (whatever that is!).

I did a lot of research when I first had symptoms because my PCP thought I could have MS. When I dug into research, usually the MS symptom correlates with a lesion on the brain. I had bilateral numbness in hands & feet, along with other areas. Early on in MS, it is pretty unusual to have lesions on both sides of the brain in the exact same spot (left and right hands correlate to different spots in the brain). Or at least this is what I gathered from hours of research. That is why most with MS initially have a symptom like one numb spot or vision problems or one weak leg, etc. Down the road, the symptoms definitely compound as more lesions occur.

Also, did your symptoms go away on abx and return off abx? What treatment combos have you done?

I would try taking some epsom baths, meditation (if you do that), anything to try and calm your nervous system. It might take some time.
Posted 3/12/2018 11:20 PM (GMT 0)
I came off doxy, malarone and BLT because we were hoping it was a herx, but it's not letting up! It's beyond weird too how it comes in waves all throughout the day, sometimes I'm super shaky, or blurry vision, loads of pins and needles, panic or anxiety, chills and head, neck or back pain, and then there are periods where I feel ok! I've had plenty of herxes or flares but nothing quite like this! Seem like my nervous system is having a short circuit! I don't know whether I should start back up and add rifampin and continue to wait and hope things calm down! I did first experience these symptoms but not like this. I totally appreciate your input! I feel like I'm treading water and it's getting harder and harder to stay afloat!
Posted 3/12/2018 11:30 PM (GMT 0)
The atovaquone in the malarone has a half life of 2-3 days.

If you took it daily then it builds up and when you stop it will still be quite high levels in your system for several days (more than 2-3 days)

I would hang tight and not start anything now

Do Epsom salt help relieve the nerve symptoms? They do for me. I have several nerve symptoms - shivering, nerve pain - used to have a lot of twitching and also tremors
Posted 3/12/2018 11:38 PM (GMT 0)
I can relate over the last year many of my symptoms have been the same. I was just looking @ Ms as a possible cause. I think it is Lyme because like clock work every month around now I get increased nuero psych problem s as well as tingling in my hands and feet. Afull panic anxiety with scary rage. It does increase after about an hour or two of buhners Bart protocol. Last month I jumped out guns a blazing and on the 12 the of February I was hit with these symptoms bad. It is now the 12 th of March and the thoughts and nuero stuff is cooking up again with in a hour of ingesting the herbs. I wonder if these herbs hit Lyme besides knotweed? I do feel better when not herxing or flareing? I am getting better or these bugs are getting better at hiding. I tell you what I been detoxing like hell and will see what happens in the next few days. I see an llmd in June.
Posted 3/12/2018 11:39 PM (GMT 0)
I also decreased my dose considerably scince last month.
Posted 3/13/2018 7:05 AM (GMT 0)
They told me it was als /ms ...so i used ms treatment to get the lyme bart off my nerves (bvt)and rocephin rifampin hh2 and allicin and alinia and rife and oil of oregano and iv silver but iv mag got the shakes to stop with kilos of royal jelly. ..ur on the right path and time is of the essence .
Posted 3/13/2018 12:20 PM (GMT 0)
I went down the road of wondering about ms as well, but my own research brought me to the same conclusion as k07. My symptoms were bilateral and consistently waxed and waned in what seemed like perfect sync, so ms did not make sense. The neurologist I saw didn't think so either. All he could come up with was idiopathic neuropathy.

I never had the tingling, but I did have those really weird days of shakiness you mention - random out of the blue days where I felt all hyped up and vibraty inside. Those actually went away quickly after starting lyme treatment with doxy and amoxicillin. I'm now treating bart after a lot of there things cleared, so I think my shakiness was more lyme or something else those abx hit.
Posted 3/13/2018 1:28 PM (GMT 0)
I've already done a year and a half of treatment for lyme and about 7-8 months for babesia so that's why I'm feeling extra frustrated and scared...why are these symptom symptoms back?
Posted 3/13/2018 4:02 PM (GMT 0)
Hard to say. Sounds like you have not done any specific treatment for bart, so perhaps some of the things you were taking in the past was keeping those symptoms suppressed. The 3 year mark you mention strikes a chord with me, as that is time between when I first started having symptoms such as muscle twitching, cramps, dehydration and some other sensory things. At the time I was diagnosed with BFS, but while worrying about MS/ALS I had some of the other symptoms you describe that were anxiety driven. Not saying that's what's causing yours, but in my case some were. After a few weeks all my symptoms went away completely for 3 years without doing anything, only to return last year with a host of others.

Doxy works on bart, but not sure about azithromycin. I took amoxicillin with doxy for lyme and it never knocked out my bart symptoms. Not until we dropped amoxicillin for bactrim did I feel we were really starting to hit it. I took A-Bart for a while but that only seem to piss it off. After adding the bactrim is also when the muscle twitching seemed to completely died down. I think the co-infections have some similarity of symptoms and we hear one will flare when another is brought under control.

Your LLMD may have it right with bart.
Posted 3/13/2018 5:57 PM (GMT 0)
Thanks mudshark! That's what my llmd is thinking too. A lot of my symptoms seem to be related to my neck, seems like whenever I have any type of trauma or adjustment to my neck my symptoms get stirred up again. It's almost like the bugs are hiding in my spinal column and will come out and have a party! I too spent the first few months of my symptoms back in early 2015 thinking I was dying and fearing greatly ALS, we had a friend die from it and i think it has to be the cruelest disease! MS is scary too, but at least some people seem to manage there symptoms. Lyme and company is a not a picnic either as we all know!! But there are those people who seem to get better, I just hope we can all be there too some day in the near future!!
Posted 3/13/2018 6:56 PM (GMT 0)
If you are going to treat bart pharmaceutically - you should think about Rifampin or Rifabutin paired with another antibiotic.

(not just doxy or azithromycin)
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