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Posted 12/17/2021 3:46 AM (GMT 0)
On my protocol - (one week on and three weeks off.)

This is Day 4 and I am feeling crummy .
I took Diflucan and Tinidazole today

Mon, Tues, Wed was xylitol and lactoferrin
Mon and Wed I took Ceftin mino and rifabutin

Dr J had mentioned once that the lacto and xylitol was possibly the reason for herxing a few days following - they were busting the biofilms.

My back is sore and my head is fuzzy. Started yesterday afternoon.
Posted 12/17/2021 2:41 PM (GMT 0)
What has you headed back into treatment? I’m a newer patient at Jemsek
Posted 12/17/2021 2:46 PM (GMT 0)

ltc1225 said...
What has you headed back into treatment? I’m a newer patient at Jemsek

I am on maintenance - so I take abx one week on and three weeks off.
(Sometimes I go longer than 3 weeks off)
Posted 12/17/2021 2:51 PM (GMT 0)
When you mention Here we go again,”
- you expected this as I think you mentioned before?
Posted 12/17/2021 3:02 PM (GMT 0)

running wild said...
When you mention Here we go again,”
- you expected this as I think you mentioned before?

Yes - I do expect it - but I still hope that I won’t react

I’m not feeling too badly now - I guess the sleep helped.
Last day of abx today.
Posted 12/18/2021 4:17 PM (GMT 0)
Well I woke up very early not feeling well - whole body shivering and sore internally and feeling hot.
Can’t find a thermometer (we have two) to test it.
Pretty sure I have a fever.
Head pressure.

Disappointing - Was supposed to meet a friend for tea this afternoon but I can’t say 100% that this isn’t Covid. It is my usual herx symptoms but don’t want to take the chance.So I won’t be able to go.

Waiting for the rapid tests I ordered to get here so I can test just to make sure.

Hubby is over 6 months since his 2nd vax and I’m pushing him to try and get the booster. He is 62 and works on the frontlines for our Health Authority. He’s at risk.
Posted 12/18/2021 4:26 PM (GMT 0)
I’m really sorry, girlie. Maybe you can take an epsom salt bath?
Posted 12/18/2021 5:41 PM (GMT 0)

WalkingbyFaith said...
I’m really sorry, girlie. Maybe you can take an epsom salt bath?

Thanks WalkingbyFaith.

Yes I should take one - it usually helps some - for a couple hours or so - I’m so tired of this - just feel like curling up in a ball on the couch.

I’m just whining - it could be a lot worse -

Hubby offered to stay home from work - but I’m not that bad - so I told him to go.
Posted 12/18/2021 7:16 PM (GMT 0)
Have you had HLA-DR testing?
Posted 12/18/2021 7:49 PM (GMT 0)
Welcome to the forum QuantumSurge.
Posted 12/18/2021 8:09 PM (GMT 0)
Sorry you are feeling lousy Girlie! WBF has a good idea of taking epsilon salt baths. Do you have access to a sauna or have you tried burnout pinella? It is also a full moon this week, dose that normally bother you?
Posted 12/18/2021 8:49 PM (GMT 0)

QuantumSurge said...
Have you had HLA-DR testing?

I did a ton of lab work with my current LLMD.
I don’t recall that one - I would have to go through my stacks of “Lyme” papers

Oh - and welcome to the forum QuantumSurge!
Posted 12/18/2021 8:55 PM (GMT 0)

CalmLittleBuddha said...
Sorry you are feeling lousy Girlie! WBF has a good idea of taking epsilon salt baths. Do you have access to a sauna or have you tried burnout pinella? It is also a full moon this week, dose that normally bother you?

I did have an Epsom salt bath and laid down with my kitty.
I’m feeling somewhat better now.

I don’t have easy access to a sauna and I ran out of burbur and Pinella and haven’t ordered more.
The full moon doesn’t affect me.


Thanks everyone - it really helps to have a place to vent!!
Posted 12/18/2021 9:25 PM (GMT 0)

Girlie said...

QuantumSurge said...
Have you had HLA-DR testing?

I did a ton of lab work with my current LLMD.
I don’t recall that one - I would have to go through my stacks of “Lyme” papers

Oh - and welcome to the forum QuantumSurge!

Thank you!

The HLA-DR is vital when dealing with lyme, as some variants indicate a genetic abnormality wherein one cannot eliminate lyme toxins. Thus, the toxins circulate, indefinitely, causing nonstop inflammation--the symptoms being identical to lyme itself. Such persons require use of cholestyramine (or its weaker counterparts) to rid the body of the toxins, and inflammation.

It looks like you've been fighting the lyme fight for quite some time, so I'm wondering if that's a linchpin of sorts, complicating recovery.

Personally, I found this out after getting treatment for CIRS after living in highly toxic, mold-ridden housing. I was put on cholestyramine, after moving out, and experienced a severe reaction after a few doses. My hands and wrists clawed up like a praying mantis, I felt like I was slipping out of reality (depersionalization), and I experienced electric shock sensations up and down my spinal cord and through my limbs.

Some digging on the issue brought up discussions by doctor's who treat such conditions, and identified the brutal reaction as a pathognomonic reaction, of sorts, to lyme-based CIRS. Later testing confirmed I didn't have the expected HLA-DR pattern of susceptibility that would indicate an inability to excrete mycotoxins. Instead, it showed one of the 2 possible patterns (15-6-51) representing an inability to clear lyme toxins. This led to eventual lyme treatment on clinical grounds, as I've had several known tick bites and live in a highly endemic area.

Doxycycline and Tinidazole were used, and much herxing ensued. Improvements were felt, but there was an overall plateau effect that could not be overcome. Repeated administration of cholestyramine led to improvements, after first worsening symptoms.

Further revisting the topic since has led to deeper and more involved research. There are some exceedingly comprehensive research papers delving into the issue(s), but the overall message is simple enough: some people cannot detox lyme toxins on their own. I've seen the number estimated to be around 20% of cases.

Whatever the case, it seems to be a highly brushed-over topic, and one that could be a missing piece for many people.
Posted 12/18/2021 10:54 PM (GMT 0)
Thanks for sharing your knowledge, QuantumSurge.

I will try and find all my lab work I had done after my initial consult with Dr J.

I have to admit I have been slack on the detoxing end of things and try to be more disciplined.

I don’t know if I have detox issues - as the herxing does abate quite quickly most of the time.
I’m feeling much better now - in fact my upper back pain is very low/ almost nonexistent right now.
Now I’ve jinxed myself.

My head is still a bit “fuzzy”
Posted 12/19/2021 7:19 AM (GMT 0)
You're welcome--glad to share knowledge.

More data is always good.

It's east to get a bit lazy with detoxing. The whole process is so taxing, and herxing is a full-time job to address much of the time.

I'm you aren't swearing too much, that could be an indicator you're detoxing pretty well. I recently had absolutely drenching nughtsweats a few nights in a row after killing too quickly. As in soaking through 3 comforters, sheets, and 2 shirts in 1 night. Sweating is the body's bypass to overburdened detox pathways, so it can be a useful guide. My doctor said slow down and detox/bind.

Glad you're symptoms improve quickly.
Fuzzy head sounds like it could be ammonia.
Have you tried L-ornithine-L-aspartate (LOLA), and/or lactulose?
They've cleared my fog when herxing
Posted 12/19/2021 8:19 AM (GMT 0)
Yes here we go again Girlie, sorry about that...
and anyway Welcome QuantumSurge, I have to agree about Cholestyramine--I was able to stock up on it, given one very understanding nurse-practitioner but I must have a 5-year supply because I can only take about a half scoop at the most, at a time; it so powerfully sequesters the bile toxins... (one half scoop is about maybe 1.5 grams or 1500 mg's). I take it with food, or sometimes without, and I feel it makes a difference with me anyway, really feel it clears things out, many others attest to it working for them as well...I must have that genetic mutation/small intestine with methylation problem...

And Girlie, I hear you about treating this again...it's good to stay mindful of doses, how you feel and toxin load...but I don't know about you but I feel I really have next level PTSD from treating and more than few bad experiences (with the doctors/system) now...

I think my kidneys are hurt and/or my back/spine, from trying to do too much and being painfully bedridden the next day...and body/muscle damage from new exercises/exertion (I'm told it was rhabdomyolisis) doctors mostly ignored chronic infection as a (known and legitimate) cause.

last thought--I was reading (3 free articles) at The Atlantic about COVID- variant Omicron, and the way they describe it (newly Dx'd with COVID, and "long haulers") it is so uncanny how similar the symptoms are to tick-borne complex illness, mold, PEM, ME, CFS, Fibro. and it's hard not to think "well I've had that (literally every one of the symptoms, including the weird smells or phantosmia...for many years now..."

it would have been nice to get some better diagnosis along the way than overprescribed mostly the wrong pills...and yes...here we go again...

p.s. due to being isolated and lacking documentation/real support I am being pressured into a psychiatric diagnosis and I am pretty scared and sad about it sad

sry to whine about myself though,
but yeah any magnesium supplement seems to help me (sulfate such as epsom salt bath) or magnesium citrate (take a few 2-3 grams at a time ie. one teaspoonful) --my supplement bag is running low due to lack of funds... but I still have some L-Theanine and Taurine for calming down and also Omega-3 fish oil...that's all I got!
Hope your maintenance doses have you feeling better eventually smile

Post Edited (borrelioburgdorferii) : 12/19/2021 1:26:13 AM (GMT-7)

Posted 12/19/2021 12:37 PM (GMT 0)
hello and welcome QuantumSurge

can you share your sources for this - i would be interested to read

QuantumSurge said...

The HLA-DR is vital when dealing with lyme, ....... it showed one of the 2 possible patterns (15-6-51) representing an inability to clear lyme toxins. .

Posted 12/20/2021 3:58 AM (GMT 0)

Garzie said...
hello and welcome QuantumSurge

can you share your sources for this - i would be interested to read

Here's a link to a web document:
https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.survivingmold.com/docs/HoffmanEssay1.DOCX&ved=2ahUKEwjqj_OSv_H0AhVDbs0KHTKFCEkQFnoECCAQAQ&usg=AOvVaw3Gc7Zi0bKbFAfBgx3NKDpR

If you feel uncomfortable blindly downloading a link, you can find it by searching the following in Google: "15-6-51" cirs lyme
Make sure to quote the "15-6-51". It should be the second search result.

Otherwise:

https://www.optimusmedica.com/cirs-chronic-inflammatory-response-syndrome/

https://www.treatlyme.net/guide/mold-toxin-illness-lyme-toxin



QuantumSurge said...

The HLA-DR is vital when dealing with lyme, ....... it showed one of the 2 possible patterns (15-6-51) representing an inability to clear lyme toxins. .

That got quoted weird, haha.
Posted 12/20/2021 4:13 AM (GMT 0)

Girlie said...
“ Have you tried L-ornithine-L-aspartate (LOLA), and/or lactulose? “

After my initial consult with Dr J I had to do a ton of lab work. (2018)

One of the tests was ammonia. Mine was slightly high - like the range was something like < 60 and mine was maybe 69.
He had me take L-O-L-A

When I retested a few months later it was a few points higher.

I have not tested again. My “regular” Dr here told me that my numbers weren’t anything to worry about.
She sees ammonia numbers in the hundreds.

Maybe next time I go to DC I will retest it.
I can’t get it tested here

Yes, those numbers aren't too concerning. Might still be nice to have some for heavy duty herxing to deal with ammonia surges, but probably optional.

Have you tried taking Biocidin LSF with antibiotics? It's supposed to kill lyme, break down biofilm, and block microbes efflux pumps (so they can't eject the drugs). I had the idea when taking antibiotics (supported by my doctor) so as to synergize with the drugs, leading to needing to take less--good for preventing extended exposure that can cause dysbiosis and candida blooms, and limit drug resistance. I think biofilm reducing products like Interphase Plus might help, too, but I'm not sure how systemic they are, if at all.

If you aren't able to Sauna, and don't have B'Pinella, maybe try some modified citrus pectin to bind lyme toxins.
Posted 12/20/2021 4:25 AM (GMT 0)

borrelioburgdorferii said...
Yes here we go again Girlie, sorry about that...
and anyway Welcome QuantumSurge, I have to agree about Cholestyramine--I was able to stock up on it, given one very understanding nurse-practitioner but I must have a 5-year supply because I can only take about a half scoop at the most, at a time; it so powerfully sequesters the bile toxins... (one half scoop is about maybe 1.5 grams or 1500 mg's).

Why is half a scoop your limit? I'm just wondering if your experience is similar to mine.

I was hitting the CSM hard today (4 big scoops: 1.75+ tsp, per), and felt good shortly after each, followed by body aches and fog around 30-60 mins after, then up and down after that. After dose 4 I took a nap, and had pretty bad sweats. Woke to body aches, and arthritis type pain everywhere. Lots of fog, dull and blurry vision, and depressed feelings.
It's improved a lot, but is still there. I guess it fits with my HLA-DR pattern for taking CSM if lyme toxins are present. Improvements, followed by intense symptom worsening as more toxins are dumped from fat cells, and before they end up in the bile/liver.
Posted 12/20/2021 6:27 PM (GMT 0)

QuantumSurge said...
Why is half a scoop your limit?



I've been off antibiotics for quite some time now, likely still living in very mold-y house...
And I can feel the infections and all the other "gunk and crud" in my system, if that makes sense for lack of better words..

I just know from before it has "mobilized toxins" as they say, and I need to go "low and slow" because of it a very STRONG binder...get really terrible depression and neuropsych. issues if not careful..

I do seem to get those "clear" days after it so I keep using it, wisely hopefully thx for your reply

and thanks these links are VERY relevant to this conversation:

https://www.optimusmedica.com/cirs-chronic-inflammatory-response-syndrome/

https://www.treatlyme.net/guide/mold-toxin-illness-lyme-toxin

Post Edited (borrelioburgdorferii) : 12/20/2021 11:40:55 AM (GMT-7)

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