Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I've got no definitive serology at all and my blood is negative for all coinfections.
But I know I have at least Bart; and my low white blood count tells me I have Babesia,
The Bartonella seems to be the real actor in a lot of my symptoms; at least my discomforts; also I responded to Bactrim within eight hours of taking one pill.
Meaning: I felt like there was something in my bloodstream that was attacking me and I had those terrifying vibrations; which were not as bad as the vibrations I had in the beginning, but sort of worse because they were accompanied by sheets of sweat and vertigo.
Anyway, all gone in eight hours with one dose of Bactrim. Then, later, about ten days later, I got crystals in my bladder and my body temperature started to plummet. Weird tingles on my fingers and extremities - I got scared.
Anyway because of this I am thinking that along with the mino I'm taking I want to add Sida Acuta for Bart. I can't take Levaquin.
But I seem to be reading here that people aren't treating multibugs; they seem to be doing more one bug at a time?
Is it reasonable to try to hit more than one bacteria? I want to treat the Lyme but the Bart appears to be the one making me the most miserable.
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posted
Hi! I'm treating Lyme, Bartonella and Lyme all at once. Even though I did treat Lyme for almost 2 years before Bartonella came up positive on a test.
Like you, I just knew from the beginning that I had Bartonella and Babesia. The longer I was treating Lyme the more the other infections started coming through.
I still do not test cdc positive for Lyme and Babesia. I do have cyclic drenching night sweats, air hunger and fatigue.
I get a strong herx from media and herbs for those infections, so that only confirms that I'm killing something off.
I take Sida Acuta and other herbs Buhner recommends. My herx is always terrible anxiety.
With Babesia meds and Cryptolepis, I get overwhelming fatigue and depression. Artemisinin though doesn't cause a herx. It makes me feel better and have less pain...therefore I don't know what kind of effect it has.
All I know is that it makes me feel better than anything else I've ever taken.
It is really hard to treat all infections at once. It was easier treating just Lyme.
The added herxes really makes life tough. I really had to slow down with the herbs as I just could not live being so fatigued and have so much anxiety and pain. I'm only able to titration one drop of one herb per week.
I have 3 young kids and just need to be able to function. At this pace, it will still probably be a long time before I get better...
Hope this helps... Let me know if you have any questions
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Hi and thanks!
I don't have babies to take care of, and I'm actually pretty much disabled ( yes I can walk and make food for myself but can't work or think past my shoelace).
Do you think it would have been helpful for you in the beginning if you had tackled all these ***holes at once or do you think it worked out better to hit the Lyme first?
Or:
If you had to do it over again without the added responsibility, would you have multi-treated?
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Hi! Well, if I tackled them all from the beginning, I might be closer to feeling better now.
I just really don't know if I would have been able to handle the herx from all three. Just the Lyme herx was so horrible in the 1st year or so. I wasn't detoxing at the time though as none of my Drs. Ever mentioned it.
Even with detoxing, I still herx a lot from the methylation problems I have. If you don't have methylation issues, it would probably be easier on you.
I would definitely have wanted to start treating all the infections as early as I could. I just feel if you treat just one, then the others just keep getting stronger. It's just a question of how much your body can handle.
If I didn't have kids and could just focus on getting better and detoxing, I probably would be further along. I often have to slow down with my treatment because I need to function for certain events involving the kids. My hubby works all the time so it's just me taking care of them.
Best of luck to you!
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Jordana
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Member # 45305
posted
Yep, I took it for ten days and the first five days seemed like a miracle. Then I started getting this sparky feeling on my arms and face and fingers; ended up in a walk in clinic for the worst bladder pain, bilirubin in my urine and uric acid buildup. I thought it was a UTI but my body just couldn't handle the drug I don't think.
The hot flashes stopped, I was freezing all the time, then nauseated.
That was Christmas Day, hooray!
I never had a problem with Bactrim before but I had to stop, the sparky feeling freaked me out the most.
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I have a borderline positive ELISPOT LTT from Germany.
I knew that if my immune system was not responding to any simple infection,such as a septic gallbladder, it was probably not making antibodies to anything. I got my test from Armin labs. My original WB had IgG only, 41 and 66 KdA. My second WB now has double 41's, IgG and IgM.
The reason I took those tests is because of the Bell's Palsy and meningitis I had a year ago, in addition to continuing symptoms such as the loss of the use of my left hand, neck pain and on and on and on.
The reason I am pretty sure I have Babesia is because I have a low grade fever every day and sweat all day and all night when I'm symptomatic. When I took Bactrim for ten days my bladder started throwing hyaline casts.
The reason I think I might have Bartonella also is because of the shaking, trembling, and inner vibrations along with the symptoms I described above, in addition to unrelenting GERD, and secretory diarrhea. Those symptoms are described in a lot of the literature about Bartonella infections.
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm going back to your original post...
It may be reasonable to treat more than one infection at a time... Depending on the patient needs.
We are all treated differently based on our individual needs and unique collection of infections. What I needed to address first may have been different than what you need to address now.
Also, the doctor considers our state of health. Such as: can we tolerate the necessary treatment, do we need further treatment to support adrenals, liver, kidneys first; do we need further testing for hormones; for heavy metals... You get the idea!
Once your body is ready, you should be able to treat more than one infection at a time.
Also, you mentioned wanting to treat Lyme, Babesia, and, Bartonella. Please remember that there are many other coinfections that you may be tested for and may also require treatment too.
It's horribly hard being sick. There is no quick or easy answer with Lyme disease, it is a complex of multiple infections and and health complications.
I just hope that you can find a doctor that you trust.
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TNT
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posted
quote:Originally posted by Jordana: The reason I am pretty sure I have Babesia is because I have a low grade fever every day and sweat all day and all night when I'm symptomatic.
I'm not sure this is a good sign of Babesia. Babesia doesn't cycle daily. Sweats are also a symptom of Brucella, and Brucella does cycle (reproduce) daily (every 22-24 hours). So, the daily low grade fever and the sweats make me think Brucella more than Babesia.
Just a thought.
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Jordana
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posted
Thanks Sammy. I hope I can too.
TNT; were you the person who mentioned Brucella to me on another thread? I had never even heard of it until I started coming to Lymenet.
Is Brucella immune suppressive? I've never been tested for it or for B. Duncani; but the unresponsive WBC and neutropenia really worry me.
I do have an appointment with a hematologist in a few weeks.
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TNT
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posted
I'm not saying you have Brucellosis. I'm just throwing that out there as a possibility based on some of what you said.
I believe you have an appointment with Dr. J very soon. He will be able to order tests and make clinical observations. This might be something to discuss with him. I hope your appointment goes well.
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Jordana
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posted
Thanks very much, I hope so too.
Posts: 2057 | From Florida | Registered: Feb 2015
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This thread got flagged due to attacks going on. I deleted the attack posts. Please continue to discuss without attacking one another.
Also, it seems clear to me that Jordana has some positive tests - looks like the Ellispot test is positive, band 66 is a positive band, Bell's palsy is a Lyme presentation.
Also, Jordana, I understand you're going to see a doctor soon. So maybe be a little more patient here - we are not doctors here - and you will hopefully get some more answers soon. Thanks -
[ 01-17-2016, 09:20 PM: Message edited by: Robin123 ]
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thank you moderators .
It took me a year from the onset of symptoms to circle back around to Lyme. Once it dawned on me that there was no other possible diagnosis, I've been going crazy trying to find out as much as I can; but also as you know there are very few places to discuss these things in the Regular World.
I realize moderating a board of thousands of sick people has got to be quite a challenge and I appreciate very much what you do .
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