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Struggling, advice needed on what to do please

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Posted 9/20/2021 11:52 AM (GMT 0)
Hello everyone,

I’m going from bad to worse on herbs, probably because I can’t get the doses up due to such psychological flares/herxing and panic.

I was having a lot of weakness and fatigue, brain fog, stabby sensations in fingers, sides of and backs of knees, underneath feet and eye problems. Thats now gone but has been replaced with old symptoms that went away after 3 weeks of Doxy. Crushing front head pain, palpitations that make me rock, anxiety and panic, but a new one is tingling underneath my scalp which moves around and has become permanent. I often wake up with sweats no matter the symptoms and have pain underneath my ribs.

I can’t see a proper Lyme doctor for another couple of months as we only have one decent one in the U.K. and his waiting list is huge. A friend managed to get me 3 months worth of Doxycycline, I know it’s not enough by itself, but do you think it’s worth me taking it in the meantime due to obvious neuro involvement? I have no clue what to do. I could try and incorporate some herbs along the way.
Posted 9/20/2021 12:22 PM (GMT 0)
Which herbs are you taking?
Posted 9/20/2021 12:33 PM (GMT 0)
For heart palpitations consider upping your potassium intake. Avocados, bananas, leafy greens, mixing potassium chloride in with your table salt. Make sure you have enough magnesium also; most people don't. It will help with many things, including muscle pains and the panic.
Posted 9/20/2021 12:43 PM (GMT 0)

Bailey said...
Which herbs are you taking?

Crypto, Jap Knot, Skullcap Black Wallnut. None at particularly high doses. I tried Sida and almost lost my mind.
Posted 9/20/2021 12:47 PM (GMT 0)

Paul B said...
For heart palpitations consider upping your potassium intake. Avocados, bananas, leafy greens, mixing potassium chloride in with your table salt. Make sure you have enough magnesium also; most people don't. It will help with many things, including muscle pains and the panic.

Thank you Paul. I do take a good quality mag x 2 and bananas every day. Tons of supplements.
Posted 9/20/2021 1:06 PM (GMT 0)
I’ve never trie skullcap but I read it can drop your bp. That can exacerbate palpitations. You probably have bartonella if sida was hard but you tolerate crypto. I wonder if you could try bactrim…. It’s a pretty old cheap med for Bart and babesia. It can break biofilm. Cost of buying it with no insurance is pretty low here in us so much that pharmacies sometimes offer it for free here.then again you might have a strong reaction to it. It’s another option though.
Posted 9/20/2021 1:29 PM (GMT 0)
We don’t have it in the U.K. I’m lucky to have the Doxycycline. We all have to fly to Ireland to see a proper Lyme doctor at Dublin hospital. It’s the only way to receive proper meds. I went to hospital a few days ago and they pretty much told me to piss off, there’s nothing they can do for me. I’m getting so sick I’m not even sure I’d make it to Ireland at this rate.
Yes, I thought Bart too. I had all of the body weakness and fatigue etc for ages, it seemed Babesia like. As soon as I started messing with Sida it all went away and the psychological/head stuff started happening.
Posted 9/20/2021 2:31 PM (GMT 0)
I’ve never tried it, but people say houttuynia is good for bartonella
Posted 9/20/2021 2:45 PM (GMT 0)
You mentioned scalp. I have had scalp burning at times. I think the worst was when I started sida acuta. Sida is used for both babesia and bartonella. I am not sure which caused the scalp burning.

You might try treating MCAS and see if that helps any of your symptoms.
Posted 9/20/2021 3:00 PM (GMT 0)
I haven’t taken Sida for a few days now but it continues to get worse. Is the Doxy completely pointless then? I was wondering if it might keep me healthy enough just to get to Ireland in a few months.
Posted 9/20/2021 4:15 PM (GMT 0)
I would take the doxy
Posted 9/20/2021 4:16 PM (GMT 0)
Doxy isn’t pointless. It treats lyme and babesia a little.
Posted 9/20/2021 6:48 PM (GMT 0)
from your posts it sounds like you have a lyme diagnosis from a LLMD

but not tested for or no positive tests for co-infections

i would start with the doxy - its a very safe drug - its also active for several of the co-infections - which is one of the reasons its the first choice antibiotic for lyme - dose is usually 100mg 2x a day - sometimes 200mg 2x a day

flares of symptoms when taking herbs or antibiotics are common
usually increases in your normal symptoms - but often new ones as well
the disease also causes variable new symptoms to crop up from time to time

when you are stable on the antibiotics you could then try adding some of the herbs 1 at a time - a week apart - that way you will be able to tell how they each effect you

then gradually work the doses up at a rate that you can tolerate

the strong antimicrobial herbs are
sida
crypto
black walnut
be careful with these - many people react strongly to them - esp at first

the more anti-inflammatory herbs
knotweed, Chinese skullcap, cats claw, cordyceps, red sage root - are generally more easily tolerated - but everyone is different so be careful at first
Posted 9/20/2021 7:18 PM (GMT 0)
Hey Garzie,

I tested positive for all three B’s, Mycoplasma and viruses.

I took the Doxy. It’s been a very different experience to last time though. Immediate pain behind one eye and brain fog. I didn’t think you could herx so soon, unless it’s some kind of histamine reaction. Previously I was somewhat rough in week 1, felt great in week 2, and had a humongous herx for 2 days in week 3. One day after stopping treatment symptoms flooded back and ever since I’ve been faffing about with herbs.

I don’t suppose anyone knows how to treat histamines without antihistamines just incase it is that? I used to be able to take them before I got sick, but now they make me very ill.
Posted 9/20/2021 8:04 PM (GMT 0)
Vitamin c is a natural antihistamine. Dao is an enzyme that breaks down histamine. Armour thyroid med helps keep my histamine load down because it lowers my estrogen
Posted 9/21/2021 9:55 AM (GMT 0)
interesting

this is not too surprising, rapid and clear response to abx is more common earlier in lyme disease - later on progress is often slower and herxes tend to be more severe and in general the longer we are ill the more sensetive to drugs, herbs, stress etc we become

also lyme does not multiply quickly - so is not supposed to bounce back quickly after abx - leading to a need for another mechanism for that.

bartonella is known for rapid relapse after abx - but also doxy is somewhat anti-inflammatory and so some people think the anti-inflammatory actions of some abx also suppress symptoms and this wears off within a day or so of stopping

its possible its a histamine like reaction - various forms of immune dysregulation are common in lyme and co - there are various anti-histamines that you can try - but it sounds like its most likely just a herx like reaction to abx - in my own experience i felt moderately worse for about 6 weeks on doxy before feeling somewhat better

some find some relief from herx like reactions from
-alka seltzer gold ( its the bicarb that helps)
-epsom salt baths

i think if it were me i would stick with the doxy if possible and see if any of the herx reducing things help - and see how i feel in a couple of weeks with regard for next steps
Posted 9/21/2021 11:44 AM (GMT 0)
Thank you Girlie and Bailey. Garzie, that literally explains so much! You guys are bloody brilliant, I don’t know what I’d do without this forum sometimes.
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