So I tanked after five weeks of mino and rifampin. I am really worried because my fasciculations and muscle weakness are a lot worse now.
I was in the ER twice over the weekend. The first time I was insisting I had meningitis because of all the nerve sensations,
twitching, unpredictable weakness. Funny thing is I'm still passing these stupid neuro exams but they don't see me
when I'm totally symptomatic. They did a brain CT to placate me and checked all my vitals, did an EKG. They thought I
was fine but I was trying to tell them what was actually wrong and they had no idea what to do with it.
The second time was Sunday. I stopped abx a couple days before because I was getting to the point that I could not eat
and the nerve stuff was making me scared and panicked. I was also sleeping forever, like 20 days out of 24. So in the
middle of the night I got hungry and tried gluten free crackers and cheese. Total nausea;it did not want to stay in me.
But then I started freaking because not only was my esophagus rebelling, it started FASICULATING up into my
shoulders. It was an insanely scary feeling. Trying to get my food down I was pacing and trying to push it down with my
hands on my diaphragm, gentle rocking. etc. I suddenly felt a very sore spot on my back
When I woke up the next morning I felt the sore spot and within a couple hours I was having horrible rib spasms that
were knocking the breath out of me. I couldn't move at all without an excruciating reaction from my back. So I went to
the ER; they saw my ribs weren't broken but that my lungs weren't getting air down to the bottom. They took the wrong
MRI of my lumbar, not the thoracic; so I still don't know if it's a slipped disc or a fractured vertebrae. They gave me
morphine but no pain medicine and sent me home. I got a scrip for Zoran.
Then I slept some more; for a couple more days. Now I can't eat, get around very well, everything on me is twitching and
shaking and I'm really really worried I just permanently lost more function in my back.
I told my LLMD about this -- I thought I had West Nile Virus but that came back negative. They said it was a killer herx
and also said that if I couldn't tolerate abx we were going to have to treat another way.
I HAVE TO TOLERATE ABX. This stuff is in my nervous system and it's just pushing me farther and farther down.
Don't understand what happened. I hate all the buzzing and twitching and shaking and now my back is wrecked.I can't
eat food, I'm drinking Ensure. My pulse is jerking my head and trunk around.The convulsions from my back mean I can't
move much at all or for very long. I can get to the bathroom, up and downstairs etc but only once or twice a day.
I'm getting the chronic fatigue symptoms now; I can only hold a conversation for a couple minutes before it wipes me out.
So what the hell happened?
What do I do now?
Posted by LymeGoAway (Member # 25041) on :
Are you taking magnesium supplements? I saw in your other post that your potassium is low. If your potassium is low, most likely your magnesium is too. A lot of your symptoms sound like low magnesium--the spasms, weakness, fatigue and nausea.
Posted by Jordana (Member # 45305) on :
I've been trying to get some in and I should order more of the good anionized kind. It does seem like I have electrolyte and salt issues.
Posted by jsnyde2 (Member # 7888) on :
Mega magnesium. You'll be amazed. Twitching was my main symptom 1st time around. Magnesium, stay hydrated and detox (sauna was all I was able to do, but it helped.)
Posted by Jordana (Member # 45305) on :
I'll try it - thanks.
Posted by bluelyme (Member # 47170) on :
I had stomoch fascilations on starting riffy ..too ..not as bad but switched to a bart ..i got some mag oil and putbit on ....then when i got back from meeting ellie i went in for a mag choride push at functional doc ...i would try epson salt bath ,mag oil and chinese cats claw if you can ...do you have a vata mix or good blender ...ensure is sugar stuff..are you mixing nystatin ?...
chinese doc would say liver deficiency. ..can you handle glutithione ?...iv ..get a meyers and ask for extra mag ...for the right price some one has to help....wtf
Posted by bluelyme (Member # 47170) on :
Btw my als friend with foot drop had erlichia ..she did iv h202 and bvt .2 yrs and says she is well she is back working ..she did a lot of supportive iv and hbot too...there is no extra credit in this turtle wins the race ...my heart is going out to you..
Posted by SickSam (Member # 45330) on :
I had an extremely similar experience when I tried flagyl. Just a few days into it and I started to tank. I thought, "Oh, I'm herxing! This is good!".
I pressed on for six weeks before I realized I wasn't herxing at all. I was just getting sicker.
Turns out what I was on before Flagyl was working somewhat, and I just didn't realize it. I eventually went back to what I was on before, and sure enough I got an actual herx (a big one), followed by a little improvement.
Since that experience I can tell a little better when I'm herxing or when I'm just crashing.
Posted by SickSam (Member # 45330) on :
I lived off of Ensure for a while too. Bactrim is the antibiotic that finally resolved the stomach issue for me. I still have some stomach issues, but my stomach usually doesn't refuse to accept food anymore.
Posted by Jordana (Member # 45305) on :
Thanks guys. I think I had an ms-style demyelination episode. I thought I was herxing from killing pathogens but I sure missed where anyone mentioned that as a side effect.
Band 31 might not be as straightforward to treat. I was thinking about going to ask my neuro for copaxone.
Stomach fasciculations has to be the scariest thing I've ever experienced.
In bed now six days wondering what's going to come back.
Posted by bluelyme (Member # 47170) on :
10 days of bactrim killed so much sctuff i think some irriversable nerve damage occured thus the muscle wasting ...some twitching has gotten better with high dose biotin, lions mane ,and efa ..and magnesium!
Posted by TNT (Member # 42349) on :
quote:Originally posted by bluelyme: Btw my als friend with foot drop had erlichia ..she did iv h202 and bvt .2 yrs and says she is well she is back working ..she did a lot of supportive iv and hbot too...there is no extra credit in this turtle wins the race ...my heart is going out to you..
quote:Originally posted by bluelyme: 10 days of bactrim killed so much sctuff i think some irriversable nerve damage occured thus the muscle wasting ...some twitching has gotten better with high dose biotin, lions mane ,and efa ..and magnesium!
Blue, the thought occurred to me recently that you might have Ehrlichia or Anaplasma yourself. The fact the Bactrim caused an extreme worsening for you is very interesting and dovetails what is in the literature about Bactrim making Anaplasmosis worse.
Alinia is a strong antiprotozoan as well (like Bactrim) and you don't tolerate that well, either. No amount of anti-malarial-type meds will ever help an Anaplasma/Ehrlichia infection....only make it worse.
It's a thought....
Posted by Jordana (Member # 45305) on :
Agree with TNT. I've thought that too blue.
Posted by Jordana (Member # 45305) on :
Although I have to say that I thought I was being extremely intelligent embarking on Ehrlichia treatment. Before I knew about Lyme (and even when I suspected it) I had taken Bactrim and always got better fast from whatever symptoms I was having.
So once I saw the Ehrlichia Chaffeensis in my PCR I thought okay there's the key right there; it's untreated and chronic from the Bactrim, go get it. There is no other treatment but tetracyclines or rifampin. Not BVT or Biaxin or tinidazole, nothing else hits it.
Five weeks later I'm in ScaryWorld. But I really thought that was it. I mean I know it's part of it because HME can't even be diagnosed half the time without PCR; it won't show up, but it did for me.
So did I just hit my chronic Ehrlichia or was it something else coming out with scary impunity, or is this the worst Lyme herx ever?
Where the hell is the answer key to this test .
Posted by TNT (Member # 42349) on :
Jordana, I agree with you that these infections can be SO confusing! I'm sorry to hear you are doing so poorly. You'll find a way. I haven't seen any indication of you being a quitter.
It's a common misconception that what shows up on a test is the main problem. That's not necessarily the case. And, even the LLMDs are guilty.
So, if Bactrim helped you before and you haven't tried it recently, I would give it a shot. It's very possible protozoans are your issue (even though no test thus far has picked them up).
Posted by Jordana (Member # 45305) on :
This did cross my mind today. I actually also had it in the back of my mind that *after* i hit those rickettsias and was sure they were clear I could go back on sulfas.Knock maybe a little Lyme down on the way. i figured it would be four months to do that.
This did not go as planned.
Posted by bluelyme (Member # 47170) on :
Thank you ..i see your smears of infected neutrophil look similiar to mine ..i will have to do more stains ...dna connex came back neg for erlichia(doesnt mean much) ,but pos for bart baciliformis ...what is tx for anaplasmosis?
Posted by Jordana (Member # 45305) on :
Bacilliformis? Peru?Colombia?
We have the weirdest health system, they think you can only get that in South America. I have no clue what you'd have to show them to get treatment for that and your face would have to fall right off or something.
All those in that group seem to respond to tetracyclines only, and no pulsing. So if you get tricky with meds and pulsing regimens right away seems like you could miss them.
Posted by Jordana (Member # 45305) on :
Update -- it's been about a week since my last ER visit and ten days since my last med.
I am sort of getting back to baseline upset instead horribly upset. That's longer than I expected but at least it seems then none of what I was experiencing was permanent.
Gonna try to avoid that in the future Posted by me (Member # 45475) on :
Progress. Keep fighting, gal. You've got this. Hugs.
Posted by bluelyme (Member # 47170) on :
Holy herxing ?...i was bit by a columbian dog and been to mexico but ya ...ankles and wrists falling of and they still wont treat
![[Smile]](smile.gif)
I'll try it - thanks.