Jordana
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posted
So herxing for me has been like this sort of endless descent into a weird private misery that -- at this level anyway -- I was prepared for since I've done nothing but read about Lyme since I got sick.
I knew it would be bad. I've seen *really* bad and this, you know, it's bad, but I'm not in the hospital or on oxygen, I can see and eat food -- could be worse.
Thing is, something is wrong. I'm shaking from head to toe most of the day ( that I figure is a herx) and it's uncomfortable. There's some increased neck pain, tender jaws, wriggly feelings all over but then there is this OTHER THING that I do not think is Lyme.
My head is always feeling like it's wobbling and my eyes too. I don't have nystagmus. I do have a little vertigo but I think that's the mino. Again, I can deal.
But this wobble. It's not the kind of exaggerated tremor you sometimes see in Bart patients; it's more like my neck wants to move my head around in a tiny imperceptible circle. Also now when I lie down at night it feels like there's almost some kind of blockage in my cerebrospinal fluid at the back of my neck and then a release, like my head is on a wave.
What the hell is it?
I think it's a coinfection but I can't figure out if it's bart or babesia. No doubt I have both but the question is which one is on top?
Head and neck symptoms that aren't Lyme -- I've read that's Babs.
All the shaking, vibrating -- bart.
I'm treating both herbally while I stare down the minocycline beast. But if it's babesia I'm wondering if I should be doing more to try to knock it out.
Posts: 2057 | From Florida | Registered: Feb 2015
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me
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For me, Babs caused a swimmy head feeling, vertigo-like feelings, feeling off balance, increased neck and back pain and tenderness. I was increasingly weepy. Muscle soreness/aches/weakness. Ouchiness in larger joints.
Bart herxes made me get suddenly depressed and irritable.
My LLMD described it very simply: Lyme causes more neuro symptoms; Bart causes wackiness and anger; Babs causes weepiness. Of course, he explained them in deeper detail as well and said they can overlap.
It's different for everyone. So we can all play guess the coinfection game. Wow, what a fun game.
Hang in here, Jordana. The longer my treatment has gone on, the less I herx ( generally-there are always "fun" surprises"). When new meds were added or tweaked, herxes increased. The beginning of treatment was awful, to put it in very mild, sweet terms.
Treatment is, again generally speaking, not near as bad now. Keep fighting. We're here for you. And great job continuing to educate yourself.
How do you retain the info? I read and read about Lyme and cos but have so much difficulty retaining the info. It's so frustrating.
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bluelyme
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posted
Ya good job retaining jordana ...has the chinese cats claw helped with the shakes? My herbalist gives it to all his Parkinsons patients...
i havent told him all them and his fibro ,artheritis and ms patients all have lyme..
anyway i too have been playing the guess the coinfection game...i am trying to psyche myself up to start this rifampin and ordered some rocephin ...
i love lymenet ..i have scoured what people did and didnt do what worked and what doesnt...
i did some "testing" with this guy..he said a blo ,rmsf and myco were ahead of lyme and cmv...and through my research it seems like bart and myco are the ones jacking with my nerves ...im even thinking it may be immune response to pissing bart off...didnt yours start with a abx too?
so at practioner c, when i hit bart frequency my ears rang i got flush little palps etc etc...practioner a gave me script for rifampin said dont worry bout orange pee, and i see practioner b next week...
So the buhner crash course said calm cytokine storm, iv curcumin ,phentonal (from port) and unticaria rhycophyllia helped. That herbalist has a half kill half build formula ,and been trying to up fats, flax and monolaurin i know you dont like fish oil jordana but i do like mylein sheith.
my iron is really low , my heart and head are effected but im not out for the count ,neither are you , My guess is bart and another for you ...they team up quarum sensi bio filmy bs ..
the other could be proto, erlichia ,rmsf ,cpn ,mycoplasma (4types maybe more)..and of course babs..i wish i could do fry or galaxy labs ...who does myco? Have you tried ivermectin? ..what your diet like ?
You could get a spooky and it has a diagnostic tool that give feedback when it feels you hit a #,see a kinesio,art,chi ,tester,get some expensive blood work or try n fry with herbs meds til ya hit..
and its like oh i feel worse must be good ,i dont get it but thats game we didnt sign up for...what a ride ..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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posted
What's really frustrating is that I've done so much conventional testing. Armin labs found nothing. Igenex found nothing. I did a babesia FISH - nothing.
But there is something else in there obviously.
How am I retaining information? I have no idea. I know I'm fighting for my life so I try to hold on to what seems important.
Actually my real symptoms started with an absolutely unmistakable round of second stage neuro symptoms -- meningitis, stiff neck, tremors. Not that anyone told me that at the time!
When I first signed on here in Feb last year I described what had been happening and basically everyone who replied said yep, Lyme. I tried two weeks of minocycline back then and ended up getting sicker and sicker.
When I tried vitamin c to bowel tolerance my whole body just flipped out.
In other news, I lasted 3 days on a 300 mg dose of minocycline. Then I passed out and woke up 20 hours later.
So apparently, I'm pulsing.
I'm taking a lot of what you are blue but I have no idea if any of it's working.
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me
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posted
There are over 100 species of babesia, even though many are known to cause babesiosis in only animals at this point. A FISH test may not work with species of a genetic makeup that isn't known yet.
This is why my doctor did a blood smear--that is the only way mine showed up.
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bluelyme
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I dont know who will do a giemsa stain here..maybe cheeper to get a scope and try to learn how...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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I was thinking the same thing, just get a microscope. Then I can see if anything I'm doing is working and also try to get a look at what else is in me.
Posts: 2057 | From Florida | Registered: Feb 2015
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TNT
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Member # 42349
posted
Giemsa stains are very easy to do....if I can do it, anybody can.
Concerning Bart smears, you have to be scrupulously clean with your slide and stain, and even if you are, it may be hard to completely rule out contamination when viewing what appear to be Bart bacteria. That said, you can usually discern if objects are contamination or precipitate.
On the other hand, if you see the tetrad ("maltese cross") or classic signet rings, you can be certain you are seeing true infection (Babesiosis), since that cannot be contamination. Things like Anaplasma cannot be contamination either.
These things are very easy to see with a half-decent scope. A scope equipped with plain brightfield can be had very cheaply. That is all you need to view Giemsa slides. Phase contrast and darkfield come in handy when viewing live specimens. Phase contrast is a bit pricier than brightfield, but if getting a scope I would recommend one equipped with this too.
I can direct you to some free and very easy to use (ready to use solution) Giemsa stain when you get a scope. Just PM me at that time.
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WPinVA
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I don't understand why you don't try another drug. You have said you feel awful on Mino, time and time again.
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Jordana
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It's one of the only ones that cross the blood brain barrier. I think I'd herx on any antibiotic but this is the one I'm going to do my best not to fail.
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Tincup
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posted
Mino can make you loopy, screwy and ditsy, Lyme or not. I can't use it at all, even in super tiny doses.
J said.. "Also now when I lie down at night it feels like there's almost some kind of blockage in my cerebrospinal fluid at the back of my neck and then a release, like my head is on a wave."
Very possible that is exactly what is going on. I've experienced it too. Got so bad that when it "cleared" up sometimes it sounded like someone squirting catsup from a bottle. You know that sound.
It was said to be the sound of the fluid being forced thru a swollen/ infected/ inflamed narrowed area.
To fix it, a chiropractor would help release the tightness there so the fluid can pass thru and symptoms lessen.
Jordana
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posted
Wow!
I never even thought of that. But I do have a seriously messed up cervical spine. I kept reading though that getting your cervical spine worked on with Lyme can "make symptoms worsen."
Ohhhhh....I read too much Internet...
Posts: 2057 | From Florida | Registered: Feb 2015
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Carol in PA
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What are you doing for liver support?
Magnesium and fish oil are two of the basics that should help reduce some of the herx symptoms.
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Phoiph
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Jordana...
For me, there ended up being no point trying to play the "match the symptom to the pathogen" game. It is too complex, and everything overlaps.
I had the extreme neuro head and neck involvement too...and believe it was a result of inflammation of the nerve roots, which can affect corresponding areas of the body in very strange ways.
You already know what worked for me, so I won't repeat that...but in the meantime...have you tried crainial sacral treatment? It may help the flow of spinal fluid, help balance your body, and reduce the severety of those symptoms.
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bluelyme
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I just booked a crainial sacral appt for Saturday! ...i am having the what do i spend my time savings and liver bankroll on.?....atlas orthologonal chiropractor helped some for a little bit too...
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Jordana
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Um, burbur, pinella, mag, milk thistle, cholestyramine? I know I probably need more. But I also feel like the mino is bringing out something else.
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Jordana
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Phoiph I'm really interested in everything you say about HBOT. What I wonder is whether you think the antibiotics you took helped at all.
I'm not skeptical at all of your story but it does seem like anyone who has an alternative story about what finally worked for them were first on high dose abx; then they moved on to the final permanent fix.
What do you think?
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Jordana
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Yeah my neck is really symptomatic. It has been since the beginning.
But so is the rest of me, lol.
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Phoiph
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quote:Originally posted by Jordana: Phoiph I'm really interested in everything you say about HBOT. What I wonder is whether you think the antibiotics you took helped at all.
I'm not skeptical at all of your story but it does seem like anyone who has an alternative story about what finally worked for them were first on high dose abx; then they moved on to the final permanent fix.
What do you think?
I will preface this by saying that although this is what happened to me, it will not necessarily happen to you. I'm not trying to scare you or influence your decision at all...I just think it is important to hear different people's experiences, so you can make an informed decision.
What I know, is that for me, the 9 months of antibiotics I took worsened my condition to the point that I became homebound in a severe state for the following 5 years.
I was told during that 9 months of antibiotic treatment that I was "herxing", but I never came out of it...for me, it was a continual spiral downward. I intuitively knew that this was what was happening, but continued on anyway, until I was deemed an "antibiotic failure" and dropped by my LLMD.
During the 5 years following antibiotics, I attempted other treatments, but I had become chemically sensitive from the antibiotics, and was unable to follow through with any treatment except homeopathy(which wasn't successful). I was in a very grave state mentally and physically, and continued to decline.
Also during that time (i.e., years after antibiotics, but before mHBOT), I continued to test positive for active Lyme (Garinii strain), Babesia and Bartonella (via blood smear), plus multiple viruses. I was down to 5 foods, and my gut profile was so bad they retested me, thinking there must be a lab error. I was extremely symptomatic and knew I was losing the battle.
So...this is the state I was in when I started mHBOT, and how I know that antibiotics were not helpful in my case.
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Jordana
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Thanks phioph.
Sorry I missed this before.
It's a stunning story and I just have no idea how you made it through that. Obviously everything you had was resistant to everything they threw at it.
I wonder what we'd have to pay to get LLMD's to tell us how many people out there were genuine "antibiotic failures." I would really really like to know that answer.
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Phoiph
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You're welcome, Jordana...thanks for asking.
This is just the tip of the iceberg, and why I am so passionate about mHBOT, as I wasn't a mild case; but actually given up on by many LLMD's.
It would be wonderful to have statistics on cure rates for all the different treatments (like they do for other diseases), wouldn't it?
I believe it would help a lot of people in making a decision about what treatment route to take...
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bluelyme
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Did abx kill it and then mhbot fix the immune response ?...calm cytokine storm then worry bout ketes and friends...
jordana are you getting any further testing done...? Does rocephin help against anything other than lyme?...
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So apparently, I'm pulsing. 
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