posted
Hi everyone....I was searching for some info on Bart and had a couple of questions.
What is A-Bart? Anyone use Cat's Claw for Bart? Along with ABX? Anyone know if the Galaxy test shows what variety of Bart bug it is specifically?
The anxiety and terror are from the depths of he** with this bug. It's no wonder 5 psych meds haven't worked! Also, the head pressure and eye pain are awful too.
I think I got this from my cat a couple years ago from an accidental bite or scratch through play. Once he's gone, no more cats!
Thanks!
On rifampin, minocycline, zithromax, LDN, probiotics, B12, methyl folate.
-------------------- Luvmycat
A mind is like a parachute. It only functions when it's open. Posts: 268 | From Maryland | Registered: Dec 2003
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Thanks for the information Tincup. Very interesting. Although with this level of anxiety it is very difficult to read anything negative about this disease. It creates a lot of additional anxiety. It's a catch-22 situation.
My psychiatrist was extremely fascinated by this information and the fact that it caused me to be his patient. I would have never in a million years gone to a psychiatrist! Not that there's anything wrong with that but it's not something that I would have ordinarily done had this not happened to me, Bartonella that is.
-------------------- Luvmycat
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I was wondering if Dr. S. knows a way to treat cats so that lyme patients don't have to worry about getting bart from their cats.
Do you know?
Are you getting any relief yet? Hope so!
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Interesting question about cats. I had done some googling on that and the only thing I found was that cats are treated with abx just like we are. I was considering emailing my vet's office and asking how they deal with Bart. They really run a high risk of contracting it.
Yes, I have gotten some relief after only a week. 45 minutes after the first capsule of minocycline, I felt the 24/7 constant surge of level 10 fear drain from my chest. It wasn't my imagination...it really happened. Also, the constant surging of numbness/pins/needles in my calves and feet stopped. In addition to the abx, I think the folate and B12 have helped with that.
When I saw the psychiatrist and revealed all this to him he was fascinated! He took notes and asked me many questions. I was hoping I was the last pt of the day but not. Still I spent a whopping 35 minutes with him. As the abx do their job and my mental status improves my goal is to slowly wean off the zoloft. I'm already off the seroquel.
I still have a pretty high level of anxiety that comes and goes with surges and some fear that returns but nothing like before the abx. There's also a lot of head pressure that comes and goes. I read the definition of brain fog and I have that too. I just attributed that to being forgetful. These sx have been so insidious that it's easy to find other things to blame them on.
Do you know if there are members here that have only Bart like I do?
Thanks for checking on me!
-------------------- Luvmycat
A mind is like a parachute. It only functions when it's open. Posts: 268 | From Maryland | Registered: Dec 2003
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I have never met anyone who had just bartonella. BUT, now that I read what has happened to you, I really have to think about a few people I know who love cats and always have them.
Gee. Now, I'm sort of afraid to go around their cats. Also, one friend has had to go on anti-depressants. She always has cats and was diagnosed with fibro many, many years ago.
So, maybe there are lots of cat folks with just bartonella, but they don't know it. This is really something to think about!
I also read your post where you asked the vet what to do and he/she said your cat is likely a bart carrier. Wow!
Now, the good news is that the bart meds are working quickly for you. Hopefully, that means that you will get rid of it quickly.
When a person has a compromised immune system from lyme, bart can be difficult to get rid of. Perhaps with just bart, this is going to be totally different. I will be very interested to hear how you progress.
Also, I never thought of mino as a bart med. Never. Burrascano doesn't list it, and neither does the following website. So, this is a real surprise to me. Do you have any explanation?
posted
Cat owners really are at risk for Bart. Those with the health issues that you mentioned definitely should be tested!
These diseases are so insidious that in most of our cases, it's a diagnosis of hind-sight--years of it. I was aware that a bite or scratch can pass it on to a human but when I read 'ingestion' somewhere, I was really shocked.
My parents' neighbor was scratched and ended in the hospital for 4 days. My hairstylist's sister also got it from kittens adopted from the animal shelter and ended up hospitalized.
I didn't question the mino when Dr. S. prescribed it. For 'good measure' maybe...I don't know or have an explanation. Maybe it's to treat anything that didn't show up on my Lyme/Bart tests. I see him later on this month, so I'll ask.
Thankfully, I am one that does not suffer any side effects at all from any medication that I take.
-------------------- Luvmycat
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Why are you on Zithromax?
That is also not a bart medicine.
Dr. S likes to use doxy with rifampin, based on his webpage, so he may be substituting mino for doxy since we are now in sunny summer (and doxy would burn you). They are both in the same family of meds--the cyclines.
But, why the zith? It looks to me like he is treating you for lyme AND bart.
Also, did the rifampin help you? From what you described, it sounded like the mino helped you within 45 minutes of taking the first pill.
That is surprising. I would have expected relief from bart anxiety from the rifampin, not the mino.
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I don't know why he's throwing all these abx at me. At that point in time, I'd take anything I could get.
But maybe because I had Lyme before, he's treating it too just in case it's going to come back to life since I now have Bart and a weakened immune system.
When I was treated for Lyme for 3 years, I took mino for over a year. He said it was best for treating the head.
Mino did help drain that fear after 45 mins. The rifampin was on b/o. I can't say why it helped.
With these bugs, I don't think there are any answers that make sense!
BUT, the Lyme test was negative and the Bart was a 'strong positive.' I think he's just covering all the bases.
-------------------- Luvmycat
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OK. I think you know that the lyme and coinfection tests are NOT reliable.
So, based on what your lyme doc is doing, I do not think that you can confidently say that all you have is bartonella.
I think that would be a very rare occurrence to have just bart. So, next time you talk to your doc you can ask him what he thinks you have.
Ask him if he has encountered anyone who had just bart.
what does "rifampin was on b/o" mean? Did the rifampin (bart med) help you? It seems so odd to me that you would have bart symptoms leave you when you take a lyme med. See what I mean?
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I see what you mean about the mino. I don't know either, but I'll take it.
The rifampin was on backorder at the pharmacy. They didn't stock it.
That's why I only took my first dose as mino. I figured that was better than nothing.
When I had my consult with him and got the test results, I really didn't know enough about Bart treatment to ask questions about any of the meds.
I only dealt with Lyme before although I was prescribed a course of rifampin years ago 'just in case' even tho that Bart test was negative.
And I do know about the unreliability of the tests. I try to impress that upon everyone I talk to about these bugs.
-------------------- Luvmycat
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The numbness/pins/needles in your calves and feet seems like a lyme symptom to me. Bart doesn't cause that symptom from what I have read. Lyme is famous for causing pins and needles. I had it.
I also got anxiety/panic attacks from lyme and had to go on Xanax for a number of years until I finally was diagnosed with lyme disease.
So, it appears that you have lyme and bart symptoms.
Also, from looking at the Galaxy website, it seems that they do NOT test for lyme disease at all. So, perhaps you will want to ask for copies of all of your tests and in particular the name of the lab that did your lyme test.
So, then, if you have lyme and bart (which is what is commonly seen in people), perhaps you did not get it from your cat at all. Perhaps you got a new tick bite or had a relapse or some other source of getting these diseases back.
Maybe you can think about it and see if anything comes to mind.
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I strongly suggest you do the Burrascano rehabilitation program to boost your immune system so that you will not relapse in the future.
He says to do one continuous hour of weightlifting every OTHER day. You use light weights and many repetitions. A full body workout each time. So, do arms, chest, back, abs, butt, and legs.
Plan on resting after you do this. I did it in the evening and in about an hour, I would need to go to bed and sleep.
I saw the same lyme doc you have. He told me at my first appointment that I would NEVER get well if I didn't do this exercise.
I had to work up to the full hour due to my extreme muscle weakness. But, I give credit to this weightlifting for the fact that I have never relapsed in 12 years since completing treatment.
I believe this will work for you also. So many people ignore this requirement of the Burrascano protocol. If you didn't do this exercise when you last treated, then try it this time. I truly believe it is essential as Burrascano and Dr. S say to get your immune system back to normal.
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Zithromax is a bartonella drug in combination with other antibiotics usually. But as you said, Zithromax and Biaxin (related) both work on Lyme too. Its win win as far as a drug. Not sure where you heard it isn't a bart drug, because it absolutely is.
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I can say that the worst part of this for me is the anxiety and over-sensitivity and having the feeling that the whole world is against me. This is so not the 'normal' me.
The fear is different.
The overwhelming fear 24/7 was so bad that as soon as I woke up in the morning, I would get up immediately even if it was 5 a.m. so that I could get busy and try to out-run it. I could not lay there even for 5 minutes.
The meds have taken the intense fear away for the most part although I do have surges of it now and then but the anxiety is there all the time.
You really have to live it to understand it. I could write one heck of a story on the mental decline that I've had.
I'm sure I'm not the only one!
The real 'work' was trying to cover it up and appear as though everything is normal.
I have walked through the market like I was about to step on a land mine---in my mind, that is. Really strange.
-------------------- Luvmycat
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Hang in there and keep on with the antibiotics. The fear goes away over time. I remember those days well in my years before treatment. I had fears and anxiety so much a part of my life that I would feel that way every day. Now after 5 years of combo Lyme and Bartonella treatment nothing phases me. Its like Im a different person. But when youre in the depths of it those fears and feelings of dread are SO real to you, I cringe when I think of it
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I experienced anxiety similar to what you are saying when I had undiagnosed lyme disease. And, when I went through menopause, I was fearful of everything and had to see a psychiatrist and get on Zoloft. It was a white knuckle ride 24/7. No way to live!
I was fearful of the other cars when hubby was driving me down the road. I was fearful that he may have put his arm on the window lock button while driving, and then if we got hit, I would not be able to get the windows down.
I asked him to look and see that the window lock was not on. He said it was not. Still, when he stopped for gas, I had to run over there and look at it for myself!
If I got the gas and electric bill and it talked about lint in your dryer vent catching on fire, I would worry that this would happen in our home! etc.
(Zoloft worked for my menopause anxiety, and good lyme treatment worked for my lyme anxiety.)
This is a VERY hard place to be. I am hoping that this will lift for you soon. I assume you are now on the rifampin. See what Dr. S says about when you can expect some improvement:
"Expect a herx-like reaction during the first week or so; then significant progress often occurs during the second or third week on rifampin."
Have you been on it for 2-3 weeks yet?
Also, thinking about cat scratch disease, I was reading what Burrascano says about it:
Bartonella-Like Organism
"However, several aspects of this infection seem to indicate that this tick-associated strain of Bartonella is different from that described as “cat scratch disease”. (p. 24)
Here, he is saying that the bart we get from ticks is different from cat scratch disease. It is the reason why Burrascano calls bart "BLO" or "bartonella like organism."
You told about people who got scratched by their cats and had to be hospitalized. That is not normally what happens to a lyme patient who gets BLO from a tick.
So, perhaps you have BLO and this has nothing to do with your cat scratching you at all.
Keep us posted on how you are doing. We feel for you for sure!
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Here, Bartenderbonnie ended up in the ER needing IV antibiotics after her cat bit her:
So, that definitely seems to be what happens when you get cat scratch disease from a cat.
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TN, I'm so glad you posted your fear experiences. Mine are very similar.
When I drive, if I have to round a curve and I have traffic beside me, I nearly go into a panic attack. I have to sing happy birthday or something to distract myself from the panic.
When my husband drives, I need a brake pedal on my side. The 2.5 hr trip to see Dr. S. is not fun for me. I am already dreading it.
It's hard to explain to someone if that person hasn't experienced it.
I told Dr. S that even if I think, "today's Friday" I have a surge of fear go through me.
If I think I need to make a pitcher of iced tea, I get terrified. If you ask me why, I can't tell you.
I have woken up at night and had waves of terror from the depths of he** going through my body.
I have told the psychiatrist this and he gets a puzzled look on his face. No wonder!!!
And it's no wonder the psych meds don't work for this. The wrong thing is being treated.
-------------------- Luvmycat
A mind is like a parachute. It only functions when it's open. Posts: 268 | From Maryland | Registered: Dec 2003
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Yes, I know what you are talking about.
SOOOoooooo, how long have you been on the rifampin?
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Oh yes, 300 mg. twice a day, empty stomach. He said I could also take the minocycline along with it.
I take the zithromax at lunch with food as per his instructions.
I will make a list of questions for him for my next visit.
That 1/2 hr sure goes fast. My insur doesn't cover ANY of this except for the labwork if I have it done here at home in-network and the medications.
I petitioned the insur co to cover it about 7 wks ago. I believe it was ignored. I have not gotten any communication.
I mailed another one certified mail. They should have received that today. We'll see what happens with that one.
I am not a big gambler but I do buy lottery tickets weekly. Just 1 at a time. I have always wanted to start a foundation for patients with TBD's if I won big.
-------------------- Luvmycat
A mind is like a parachute. It only functions when it's open. Posts: 268 | From Maryland | Registered: Dec 2003
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Are you sure that you are to take the rifampin as you are? His webpage says to take all 600 mg at one time.
This can make a difference. Sometimes, a big dose all at one time can kill more germs than 2 half doses.
If he wrote it down for you, just check it to see. He may have modified his instructions since his first book was written.
I like the one lottery ticket a week idea!
My insurance always reimbursed me a small amount for lyme doc appointments. Out of network coverage, it was called.
It can take a few months for them to process such a claim.
Also, for the doc appointment, I always recommend that a person put their questions in priority order so that the most important questions are listed first. This way, if you run out of time, at least you got the most important questions answered.
I would be very interested in the subject of BLO versus bart. Does he believe that the "cat scratch" disease is different from what we get? And, if your cat scratches or bites you, will you get the true cat scratch disease and have to go to the ER?
If so, then your cat is not guilty at all !!!!
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The bottle on rifampin says "take one capsule by mouth twice daily as directed."
If he said to take them both at the same time, then I missed that. But the above sounds like one at a time.
I will be sure to ask him to differentiate between "cat scratch" and other BLO's.
I do have my signed copy of his book.
Going to consult it now.
-------------------- Luvmycat
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Just read the label the pharmacy put on the bottle when they filled your prescription. You will see your name, doctor's name, name of med, and instructions all on that pharmacy-applied label. That is where you will get the instructions from Dr. S.
If there are instructions automatically printed on the bottle, ignore them. You want to take the Rx as it was prescribed by Dr. S.
If Dr. S is saying to take one twice daily, then that is a change from his book. See p. 255 of the book: "600 mg once a day after the first week."
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I am reading the pharmacy label. I also checked his sheet of notes and it says the same thing. Take 1 per day for a week and then 1 capsule two x per day.
Apparently, there's been a change since his book came out.
Is there anyone else on this site recently treated that would know for certain?
It sure sounds like 1 - 2x per day though.
-------------------- Luvmycat
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Bartenderbonnie
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Hey,
I take rifampin 300mg twice a day for bartonella.
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Rumigirl
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Rifampin can be an awfully hard med to handle, at least until you get used to it. It can raise or lower the availability of many other meds that you are taking, including thyroid meds.
It can also, of course, create hefty herxes, esp psychological effects (as it Bart weren't bad enough in that regard!!). When I've done it before, I had to ramp up very slowly.
I also learned from a webinar with Dr. M from Galaxy that Rifabutin, which is in the same family, is more effective for Bart, and it also does not affect the levels of other meds quite as much.
Have any of your doctors tried anti-anxiety meds for you in the meantime? Maybe so, and they weren't effective. Plus, unless it's a very small dose on and off, you wouldn't want to go down the road of regular benzodiazapines.
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I took 1 Rifampin capsule for a week, then 2 per day which is my current dose. No problems so far.
As far as the anti-anxiety meds....I have been on Lexapro, Buspar, Zoloft (currently) and Seroquel.
None of these meds worked making me think I had a worsening case of treatment-resistant anxiety.
I have been prescribed Ativan and Klonopin (at different times, of course).
They really don't help much at the prescibed dose BUT I believe a larger dose than prescribed would help. NOT doing that at any cost!
I don't need a crystal ball to see where the benzo road leads. Won't go there.
I'll hang in there till the abx kick in and hopefully relieve the anxiety in time.
-------------------- Luvmycat
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Bartenderbonnie
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luvmycat,
I would NOT survive this horrible disease without Xanax ! No if's and or doubts ! I don't know how others suffer so horribly without it !
I tried Buspar, Lyrica, and Clymbata (not sure of spelling.) They were mind alternating garbage drugs. Made me feel even worse. Doctors gave me whatever new drug they were getting kickbacks from. Dope me up and get rid of her.
I had/have such SCARY Neuro symptoms. Lost use of my legs, tremors, seeing ghosts, crawling things on my legs, bugs flying in my eyes, yet wide awake to have to experience everything. Anxiety was just AWLFUL.
I was prescriped .25 mg. of Xanax which I take as needed. Some days I take half, some days I take nothing, some days I take full dose.
I don't get panic attacks anymore and I m able to remain calm and ride out the storm when I flare or herx. Plus it helps me sleep, which is so important to heal.
Not much I can control. But this I can. I won't let Lyme take every waking second from me if I can help it.
It is literally saving my life right now. This is my experience with it.
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I have Bart, babs and lyme too, and struggled with fear, doom, anxiety... gross feelings... panic... sensitivity... etc. AWFUL STUFF!
I have found L-Arginine, taurine, l theanine, and zinc, and magnesium to be helpful!
It seems when you dump a bunch of calming supplements on top of each other, it can eventually make a difference!
If you wanted to try a drug, you could try gabapentin?
Don't try l-arginine though if you have an ACTIVE viral infection like shingles or herpes.
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oops, nope... I go to Dr. J. ahh well... keep treating the nasties!!! make sure you hit babesia as well!
That one can cause emotional problems too! That is the one I struggle with! Grrr very hard to get on top of for me! Feel for you!
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He prescribed Neurontin to me too. 
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