posted
Hello, I have been being treated for 14 months. POS IGG test, but neg IGM test even though I had Lyme 17 years, I went back to LLMD 14 mos. ago due to symptom relapse or re-infection, not sure. Was very careful, but did acquire in the past 5 years a female stray cat. Also had been treated for Babs which was POS by LLMD after years of antibiotics and saw dramatic improvement.
My new symptoms were shaking, (not chills),weird dreams, difficulty concentrating, tingling arms and fall asleep quite a bit.
Started meds and all new symptoms appeared. Severe burning pains like hands and feet and bones on fire literally. Panic attacks, heart racing, difficulty swallowing, wake up real fast and terrors, eyes hurt and burned, light sensitive, every muscle and bone hurt. fever, severly swollen glands. It hurt to touch anything. By coming to the site, I realized I might have Bartonella, so I asked for Bart treatment and had Avelox for 4 months or so with doxy, and then Ketek, Sulphur, added Plaquenol about 2 months ago. I also had another combo, but can't remember, something in penicillin family.
Long story short, LLMD wanted to stop Sulphur and add high dose Amox with Ketek and Plaquenol. Got severe diarhea and tested POS for C-diff, so now on Flagyl only for 10 days.(This is my fifth day)
My glands hurt and sting under armpits really bad, burning in my hands and now my feet, chest stiffness, all bones hurt again real bad. Eyes are killing me. Can't taste a damn thing, and have no appetite, no libido, I am doing probiotics I buy from LLMD, nystatin pills, yeast free diet,but still a little yeasty.
I am at my wits end. This is constant daily. Haven't worked for a year now, my business has gone to pits.
I can't tell if symptoms are Lyme or Bart. I don;t think I have babs anymore. Never tested POS for Bart either. I also just went to gynecologist since I have pain, and I am doing a saliva hormone test next cycle. Depression is terrible, and I feel very hopeless.
It seems that a lot of people had relief from bart with Rifampin? and mino together? What do you do for the Lyme other forms? I have not had Rifampin yet, but I will try anything at this point.
Thanks for any help you can provide. This is an excellent forum.
Posts: 38 | From New York | Registered: Jul 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
you can get a herxheimer like reation with bartonella, similalry you can have a lot of lyme like symtoms from bart. You did not mention if the things improved after the latest abx (before flaygl).
Did you get any scratches from the cat that looked like they became infected? This would be a classical cat scratch disease infection.
Some Dr's beleive that the most potent drug for bart is levequin. Rifampin is also ok but interferes with the other drugs so makes them less potent. Doxycycline works also but may interfere with the babesia meds..
Lymph node swelling is a classical bart sign but it can occur with all sorts of other diseases also. Was there any acompanying fever with these increase in symptoms?
Also What precipitated the latest flare up, did you have a particulalry stressful period, change in lifestyle etc?
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Wow -- you are going thru h_ll right now! I'm so sorry!!!!
A lot of that does sound like it could be bartonella-related, though as we all know, it can be hard to parse out what is lyme and what is other infections. Negative serology tests don't amount to much, really -- the testing is innacurate.
If I were you, I think I'd take Ms. Kitty to the vet and have her screened for bart and other illnesses. She may not have been the source of infection (a lot of folks get bart without having a cat at all) but, if she is, you want to get her treated so you don't get reinfected from her. Also, pets can carry ticks and other parasites (mites, fleas, etc.) which can be vectors for illness -- it is debatable, but some of the non-tick parasites may even carry lyme based on certain studies.
I'm of the mind that it generally doesn't hurt to try treating for a condition based on symptoms alone -- if you get results, then you've accomplished something.
Don't forget to address nutritional, detox, and yeast issues -- yeast can be tough to get rid of when on abx -- sounds like you are doing what you can to fight it. You may want to talk to your doc about a stronger anti-fungal than nystatin.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Mtg, several things struck me in your post:
First, I also had a slew of new symptoms surface when I was finally dxed and started taking abx.
I also had a cycle of new symptoms about 6 mos into treatment. Based on them (a lot of numbness and neuro stuff), I was diagnosed with Bart and put on Rifampin. A lot of things have improved, and just last night, I noticed that a pesky, always-swollen lymph gland had finally gone down.
I hope you have success in finding a treatment regimen that works well for you. These are such difficult diseases to diagnose and track!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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liz28
Unregistered
posted
Sounds like classic bartonella. Toss the sulfa and the plaquenil, keep the ketek, add rifampin. It's okay to ramp up slowly, since just a smidgeon sends bart sufferers through the roof, but eventually you'll have to bite the bullet and do the full dosage. Some people get by with just a little herxing, others can have mega-herxes that last over a month.
The combination of rifampin, ketek, and vinpocetine, and of course liver support for breakfast, lunch and dinner, cured my five-year case of undiagnosed bart in five months. Rifampin reacts temperamentally to nearly everything, proving it really is a cat disease, so take it on an empty stomach, three hours away from other antibiotics and supplements. It peaks quickly, though, so you can chow down regular meals. If you ramp up, you can usually avoid the stomach problems people get if they start on the full dosage right away.
Watch out for the flagyl, it can suppress bart symptoms without curing the disease. And if you don't have bart, rifampin probably won't have much effect, so you can consider a seven-day course as an unofficial bart test.
Here's the bartonella symptom list:
Neck glands swollen like a water balloon Sore joints and bones Rashes Splitting headaches Scritchy red eyes Green Goblin mood swings Anxiety Insomnia/oversleeping Chronic bloody noses
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posted
can you get bartonella from a tick or mosquitoe bite without ever being near a cat? radha
Posts: 392 | From New York | Registered: Dec 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter has Bartonella only. We acquired a stray kitten 10 years ago...a Siamese..they love to give "love bites", and his back feet still have claws. He tested neg for Bart, but our LLMD is positive he has it anyway.
We are in AZ, so it is not a big tick infested area. But, there is a bit of standing water for mosquitoes. We also made annual trips to Oklahoma.
So, wherever she got it, she has all the symptoms mentioned in this thread. Yesterday, her eyes were in so much pain she couldn't open them. Her feet and hands were killing her and her neck lymph glands were swollen. Then...her entire body swelled up. She said she felt like she was going to burst.
It's awful, and you don't know what to do. I gave her a Zyrtec, because it looked like her body was having an allergic reaction to something. I think the Bart gets in the tissues, then they swell up. She looks like a big puff all the time.
She is on Rifampin and Zith. It's a slow go. She takes a couple of days off because the pain and stomach problems get so bad.
Don't know if she is making progress, but something is doing something.
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Radha
Bartonella has many strains, more are being discovered all the time, that is why the tests are so bad.
Cats carry only one the the strains, fleas and body louse are known to carry others. Then there is the whole question of bed bugs, which are blood sucking insects that infest bedding, even in good hotels. I don't think anyone really knows the full impact of this insect for a number of blood bourne diseases, including things like HIV.
As far as mosquitos goes, the generalization that is used to determine infectivity is wheter or not the infection can be passed from the insect to the larva. This way the disease can exist in the insect resouvoir is maintianed and multiplied from one generation to the next. This generalization does NOT consider the case where an insect bites twice and transmits the disease on the second bite. The reason this is excluded is that the probability is small. Still the posibility exists.
Bartonella lives in the soil so it is also possible to become infected via a cut if you are digging, say in a garden.
So the quick answer to your questions is "yes".
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Thanks for all your contributions. I am scheduled to see my doctor this week, so I am going to ask for the Rifampin and Ketek. I did notice that I sometimes feel better on the Flagyl, and did not realize that it could be suppressing the Bart. Some days the pain comes back, and sometimes it disappears, during the course of the day, and then returns. I was confused if the Flagyl was doing something, killing cysts? But it is always the same pain and the same places.
If I am understanding you correctly, I should start the Rifampin and see if I have improvement in a week? then add the Ketek in?
As far as Ms. Kitty, I have not had the energy to go to the vet, and to be honest, I don't want to worry about it. I have been seriously considering placing her for adoption because mentally I attribute her to my illness. Whether she gave it to me or brought the tick in with her, I just don't care which is unlike me since I love animals. Hubby thinks I should wait to see if I improve before doing anything rash. She has not had a tick on her at all this season, and seems to "know" something is amiss, as she stays in mostly all day.
Posts: 38 | From New York | Registered: Jul 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
mtgebrkr,
Remember that these are all people's opinons and not a doctor's advice. There may be reasons your LLMD is choosing specific antibiotics for you.
As far as somebody saying to stop Plaquenil, I think that depends why you are on it. Plaquenil decreases my pain and stiffness in my hands so I remain on it.
Flagyl is known for causing severe pain herxes. I can't quite follow if you said the pain got worse or better since starting the Flagyl. If it got worse, that's probably why.
It could be that you were never fully cured, and not that your kitty is making you sick. Can your husband take your cat to the vet to get the bart test?
If you do give the kitty away, you probably want to make sure it is tested and treated first anyway, so nobody else gets sick. Or find a shelter that will test it. And I ask that you please find a shelter that does not put unadopted animals to sleep.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Remember that these are all people's opinons and not a doctor's advice. There may be reasons your LLMD is choosing specific antibiotics for you.
As far as somebody saying to stop Plaquenil, I think that depends why you are on it. Plaquenil decreases my pain and stiffness in my hands so I remain on it.
Flagyl is known for causing severe pain herxes. I can't quite follow if you said the pain got worse or better since starting the Flagyl. If it got worse, that's probably why.
It could be that you were never fully cured, and not that your kitty is making you sick. Can your husband take your cat to the vet to get the bart test?
If you do give the kitty away, you probably want to make sure it is tested and treated first anyway, so nobody else gets sick. Or find a shelter that will test it. And I ask that you please find a shelter that does not put unadopted animals to sleep.
Thanks, I realize these are people's opinions. I have enough experience with this thing though that sometimes you have to be pro-active with what you ask your doc for. They have always listened to me in the past, and we work on solutions together. Right now, I don't know what's causing what (Lyme, Bart) and from what I have seen, some Bart patients only find relief with Rifampin or combos. I was reluntant to take the plaquenil initially, but when I did, it helped me also. As the levels increased, it also kicked up the antibiotics as well. I am not taking anything posted as gospel, but suggestions and information posts are extremely helpful. Thank God for this forum.
As far as the cat, no one can tell me where I got this, but I am going to get her tested. I own a house in Floridain the panhandle, and I found out fleas are a huge problem there. Who knows, I could have been bitten there. I have spoken with my vet about it already in the past. From what he told me there is no positive or negative. Just rather a graph, and by examination. We're just going to treat both cats. We didn't in the past due to the other had medical problems that prohibited us from giving him antibiotics. But now, we can treat both simultaneously. n the meantime, we clean out hands after touching either cat. As far as finding a home for Ms. Kitty, the jury is still out on that one. She is a timid cat, bonded with us, and I feel horrible about removing her.
Posts: 38 | From New York | Registered: Jul 2005
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posted
The pain I am having on flagyl is tingling and numbness, burning of the extremities. My skin also hurts. Eyes sensitivety. That's it basically on the pain front. I have lots of twitching, muscle stiffness, some difficulty concentrating, but not as much as on other drugs.
I am going to go back to B-12 shots and see if that helps with neuro stuff and start a new post about that because I read in Db. B's protocol that urine should be red, and I never had that with the B supplier I am getting mine from. Wonder if my LLMD should be switching labs. The one they script for is is in Alabama.
Posts: 38 | From New York | Registered: Jul 2005
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liz28
Unregistered
posted
Hi, just saw this post. I didn't realize you might be on plaquenil for arthritis, as that's rarely the context listed on this board.
Sorry, my comment was only in regard to bartonella antibiotic treatment. If you are using plaquenil as your anti-inflammatory, that's a whole different story.
However, you might want to do some fun weekend research (when you are a Lyme patient, it seems like the research never ends!) on the plaquenil side effects. It can cause vision problems, and hemolytic anemia in people with G6PD deficiency.
I was on it for two years while living with Lyme, bartonella, and babesia. Because plaquenil is a weaker cousin of chloroquine, and systemic inflammation was a constant problem, it did make me feel a little better. But in the end, the bart responded to the stronger medications, and the babesia to the stronger cousin, chloroquine. That's part of why I suggested tossing it--there are more effective drugs out there for what you seem to have. Just one opinion
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I have lots of twitching, muscle stiffness, some difficulty concentrating, but not as much as on other drugs.![[confused]](graemlins/confused.gif)
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