Topic: Need help figuring this out -- new symptoms
CD57
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posted
I am on one IV med for bart, about 5 days in this time, and had taken it for 2 weeks before also, doc told me to take a break. I am also on Tindamax and mino. Buhner herbs for bartonella, new protocol.
Hideous new symptoms have appeared and old are much worse: the 24/7 tachycardia is back, stunning headaches are trying to return, I'm getting hot flashes at night (new), lymph nodes filling up, shaking chills, terrible crying and hopelessness (that had mostly gone away), leg and hip pain, terrible foot and pain behind eyes. I am a mess. Upper back is back. The DP is constant. Mouth sores are viscious.
Is this a herx? Oddly the first 3 days of this IV med (not something any of you may have heard of) I felt very good....my leg edema disappeared, I was in a great mood, pain disappeared. Then, as classic with me, the med seemed to stop working that way in about 3 days and it seemed to stop working and is now eliciting this response. Or could it possibly be just progression....which is what it seems like, but seems impossible?
Could I perhaps have knocked down bart and babesia is flaring? We haven't treated babesia long term with me as I didn't seem to get much in the way of a hit after 3 weeks of alinia/malarone, so it would be dropped. I also did 3 months of MWF pulsed Mepron, zith, and IV clindy, 2 weeks out of the month.
My doc at the time said I probably didn't have babesia bc I would have gotten sweats and fevers (I never get fevers).
Nothing is clear with me, and I feel like I'm just circling the drain. Help!
Posts: 3528 | From US | Registered: Apr 2007
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BoxerMom
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You know I think you have Babs. Still do.
Your Babs' treatment to date would not make a big enough dent for you to notice a difference, with either herxing or improvement.
Not everyone gets sweats and fevers. Those were never herxing symptoms for me!
If you have 49/50 Babs' symptoms, you don't need that number 50 for your doc to be convinced. Where do they get this stuff?!!
You could always wait to see if the fevers show up. I didn't get fevers til my immune system started to recover. That was after maybe 3-4 years of consistent treatment for Lyme, Bart and Babs.
posted
In my experience, improvements when taking a new drug/protocol, followed by returning old, new, or increased old + new Sx's means that it's working. If it were me, I would stay the course.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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GretaM
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Hi CD,
Sounds like a Bart herx.
Your symptoms are bang on for my Bart herxes. Pain in my middle back that was kinda OK-back in full force.
Pretty much everything you describe I can relate to and go through the same. It hits me on Days 5 and Days 6 the worst, on my abx pulse.
The mouth sores I don't get. I've been reading about SJS... Has me freaked out about mouth sores.
Have you had mouth sores before? When you weren't on abx? Can you read about SJS to be sure you don't have that?
Anyways I can't offer any tips, struggling myself currently, but wanted to offer empathy and let you know we must be on the same team on the field-cause your herxes are nearly identical to mine.
Dang Bart. Terrible
Hope you feel better soon. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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CD57
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posted
UGH! I just don't know what to think. I'll try to get treatment for babs, Boxer, but they just don't seem to want to do it. What would you suggest?
I'd like to treat bart and babs at the same time. What about getting them to drop the Tindamax and add malarone?
My herxes never seem to yield improvement!
Greta, I've had mouth sores on and off for years, I do not tie them to SJS at all.
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CD57
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posted
Let me add: cycling jaw and teeth pain, stabbing wrist pain, ocular pain and pressure, icy hands and feet.
YIKES. I am worried that this is the new normal.
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CD57
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posted
and a stiff, sore neck.
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lax mom
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CD57
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i think so, plus lyme
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CD57
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posted
what do people do for this tachycardia? it's incredible, can't sleep
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BoxerMom
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posted
All the symptoms you added are Babs for me too.
Tini hits Babs, but not as strongly as Malarone. Can you drop Tini for Malarone, Zith and Art?
The Malarone/Art combo would rock. And both are easy to adjust to herxing tolerance.
You had a weird dosing schedule before. The kind that creates resistance. I doubt you took Malarone long enough to develop resistance, but it's something to keep in mind.
Since you're on IV, could you do Clinda? Do you have a PICC? That would hit some Babs!
surprise
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posted
Did you start everything at one time?
By your first description post, my thoughts were: Wow, you are on a heavy load,
sounds like classic 'day 4' hit, and, it sounds like too much/ hard on you,
maybe drop the Tindamax to add back in to pulse when you settle.
Hang in there--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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CD57
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posted
yes, hawthorn, sea salt, and a beta blocker help...a little.
I did start everything at once, as usual having underestimated things.
Is that a heavy load? I don't know. The dr didn't seem to think so.
When I first was sick in 2007 the first LLMD put me on artemesinin, but not pulsed, and I got massive bruising and tachy from that as well. When I tried art again, nothing happened, so I think the babs must have developed resistance, is that right?
How about this: my IV med, mino, and malarone, while continuing the Buhner sida and crypto and other stuff?
Posts: 3528 | From US | Registered: Apr 2007
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surprise
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posted
I can't answer about the babs meds, but yes, it is a heavy load if you started it all at once!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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BoxerMom
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posted
I think that combo is worth a shot. Just make sure there are no contraindications.
I doubt you're resistant to Art either. So that can be on the back burner.
Catgirl
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posted
You have overlapping co infections, but IMO, you're missing proto (protomyxzoa)--the most easily missed co infection of all. People think their bart symptoms are all bart, babs symptoms are all babs and lyme are are all lyme (mistake). This is why proto is so easily missed. Those of us who have it (and know we have it) recognize it in others, similar to recognizing lyme in people who don't know they have lyme. Change your diet. It's the easiest way to tell.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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CD57
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posted
I do have a proto also, it has not been identified as FL1953 though. It could be babs hanging out in there with the coccobaccili from my slide.
However, I'm still not clear on what people are using for this....I did pulsed Ivermectin, which did not yield improvement. Perhaps I should add that back in. It did not feel systemic, only that it sat in the gut.
what are people using for "proto".....Dr F uses malarone I believe. So in theory malarone would cover it.
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Catgirl
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posted
No pill alone covers it. If you want to feel better, you have to change your diet (no choice).
Dr. C has found some things that help her proto patients (on another thread). You can take every pill and/or formula on her list, but you still have to change your diet. Fat, animal products, and mag feed it. The more it grows, the worse you will feel.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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Whoops, forgot to mention that if you pulsed iver, it's possible you weren't taking enough. And if you didn't modify your diet (cutting the fat, arginine, mag) the iver alone wouldn't do much for you because it would have to battle the massive biofilm that proto produces. The way around this is to change your diet (knocks proto back).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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