Jordana
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Past week or so:
Nightmares Head, neck and arms vibrating ( very bad and distracting, wakes me up) nausea vertigo ( like mal de barquement almost) All over body shakes (but not continuously, head vibrating almost continuously), spine shakes too. Body buzzing. heavy sleeping 10-16 hours Drunk feeling Bladder irritation Weird psychic stuff like dreaming my (deceased) grandma is calling me on a broken cellphone some sweats but mostly chills no fever but fevers in previous week Feel like I'm in a dream
There's absolutely no serologic evidence I have this but I've been off meds for two weeks and this is what I ended up with. I also ran out of CSA and have been off that for two weeks.
I'm thinking it must be. Maybe bound up in the biofilm I just blew up and now circulating?
Posts: 2057 | From Florida | Registered: Feb 2015
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sammy
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A few of your symptoms do sound like they might be from Babesia. Your doctor may need to address that after you get stabilized on your antibiotic protocol again. Maybe try some Malarone then.
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me
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It sounds like a combo of the Big 3 to me: Lyme, Bart, and babesia. All my labs came back negative for babesia. It showed up clearly under a blood smear. Bart didn't show up on anything but i was diagnosed with it clinically.
You do have some symptoms that pertain to all three IMO.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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me
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Are you having severe anxiety, depression, "weird" thoughts? More of what most consider "psychiatric" symptoms? Sore soles of the feet? If so, this could be indicicative of Bart. Although Lyme loves the bladder, so does Bart.
The drunk feeling, sweats, fever, vertigo are more indicative of babesia. If you get weepy easily, that is another big clue that babesia is lurking around.
At the same time, all of it could be Lyme or something else. I wish I could be more helpful.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Jordana
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It's not you -- this is all very puzzling. I have symptoms I can't find anywhere on the internet sometimes even if I ask about them specifically.
I thought for a while I escaped from Babs but now I'm not so sure at all. I was just watching Bryan Rosner saying "symptoms of Babesia are usually very dramatic. "
Yeah the bladder thing is nearly nonspecific. Psychiatric...well...it depends on the perspective. I guess total obsession with symptoms is OCD but I don't know how I could *not* be obsessed.
More weepy than anxious, but then again I've been increasingly sick for two years. Two weeks ago I was having the sensation that there were bb pellets shooting down my legs and fireworks going off in my arms. It gets to ya.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
It certainly wouldn't hurt to try a babesia drug and see what happens!!
I have symptoms that I can't explain and nobody has them either and I have Babs.
When I told my Dr. my head/brain symptoms, he shook his head and said, I know you aren't making this up, because you can't describe this very well!
I feel for you!!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Jordana
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After the last round of abx I'm hesitating to try anything. But if it's there it has to be treated.
This stuff sure keeps a person busy.
Posts: 2057 | From Florida | Registered: Feb 2015
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me
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Babesia can make you cry at the drop of a hat and for "no reason at all." But it's hard not to cry when times are tough.
However, if you have the weepiness symptom that often accompanies babesia, it can be almost impossible to hold back tears at times, no matter how hard you try and no matter where you are.
I think it's "normal" to be obsessed, so to speak, with what in the world is going on. We are fighting for our health and if we don't fight for ourselves, who will?
It sounds like you went through a tremendously rough patch recently. Maybe your body needs a little more detox before trying anything? Idk. I'd definitely look into the Babesia though.
Oh, do you have air hunger? That's another biggie that goes with babesia.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Jordana
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Yeah I have, a little, the past couple days. Nothing really uncomfortable but just the sense I couldn't get enough air when I was lying on my back.
But my lungs collapsed two weeks ago too. Hard to call when all my issues have multiplied.
Posts: 2057 | From Florida | Registered: Feb 2015
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dbpei
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So sorry for everything you are going through Jordana. Lyme can also cause your mood to be very unstable and cause you to cry at the drop of a hat. To have been going through all you have been, I think the tears would flow easily whether caused from lyme or anything else!
Last year, before I went on IV rocephin, I had been crying very easily. One of the changes I noticed, soon after taking the IV rocephin, was that my mood improved and I wasn't crying on most days anymore.
So my hunch is that Lyme may have been responsible for my unstable mood, since the Rocephin seemed to help that.
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MannaMe
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Do you have access to a rife machine? For my hubby, rifing babesia made a difference in a very short time.
His biggest symptoms of babesia are feeling tipsy and muscle aches.
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Jordana
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I haven't tried IV or rife and I'm still not sure what I'm treating. I was thinking about trying Buhner's whole protocol for babs to see if I had a response.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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Alinia maybe?
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Jordana
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Maybe. A little gunshy at the moment...
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana, I'm so sorry. It really does sound like things have been EXTRA hard for you recently.
If I remember right you were hitting it pretty hard with ABX and bee stings? Right? My memory may be off. Maybe you were treating too quickly?
Patience is not a strong suit of mine and I just want to be better NOW!!, but I think slow and steady wins this race.
Hang in there. I wish I were more helpful except to say I'm sorry. Being chronically sick STINKS and my heart goes out to you.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Jordana
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You know, when I read about what other people are doing for their Lyme what I have done seems really inadequate, like really just not enough at all. Especially since I keep losing neck and shoulder strength and my whole left side.
So I probably blew up a bunch of biolfilm with the bvt and the mino and rifampin went after it and put me in the ER.
But I just can't see how I was treating too quickly. I mean, these things have to DIE, not get mildly annoyed. How am I ever going to do that if standard abx doses put me in the hospital?
Posts: 2057 | From Florida | Registered: Feb 2015
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I had a hard time getting on ABX with my first LLMD. I just kept trying and failing. I switched LLMD's and he was able to get me on several.
I'm starting to see SOME VERY SLOW gains. Not fast enough for me... but I'm doing my best to see the good.
I've had to 'work my way up' on some of the meds.
I'm so sorry.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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me
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Jordana, HW88 now sees the LLMD I see. Everyone who I have referred him to has been pleased.
TF has tons of info on him and patient testimonials. I'm just concerned you are not getting what you need, but I'm not a LLMD, so I don't know. I am just so saddened by how much you are going through.
Just putting the thought out there. And remember, Phoiph has offered to help guide you through mHBOT, also.
I wish there was something I could do.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Jordana
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Your empathy means a lot. I don't think anyone quite gets how bad I am except other Lymies.
I'm still mostly too wiped out to think about what to do next.
Posts: 2057 | From Florida | Registered: Feb 2015
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me
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i understand. You rest up and we will help you through this.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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bluelyme
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Tnt and i maybe are seeing a protozoan under the scope ..did you get back on the csa ?
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Jordana
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Waiting for a new batch. I've got the whole protocol coming. No treatment at all for two weeks: just binders, red root to clear lymph, and mega curcumin.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
It sure sounds like Babesia recurrance symptoms to me. I had similar when I was stopped on Mepron a few times. Now Im just back on mepron basically always and the symptoms are gone
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Jordana
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Thanks Christopher. Gonna try to treat it a little and see what happens.
Posts: 2057 | From Florida | Registered: Feb 2015
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I have insurance. Never had a problem filling it. Its not even on the highest tier anymore now that theres a generic. And even my highest tier isnt that expensive. Got a good employer health plan. Good luck Jordana! Batter the babesia every day with the mepron. Most of those symptoms will go away.
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