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Feel like I’m dying...LLMD has become non-responsive

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Posted 1/13/2020 8:34 PM (GMT 0)
For me, pale/greenish stool always mean liver issues - usually from overworking my liver - as I have Gilbert’s Syndrome.

Activated Charcoal actually makes my stools darker and is more likely to cause constipation than anything.

I couldn’t make it with out AC & Epsom Salt Baths.
Posted 1/13/2020 9:42 PM (GMT 0)
Agreed re: charcoal usually making stools darker and causing constipation.

Any chance you drank grape juice? That makes stools green.

Liver and gallbladder issues can make stools pale, as can dumping high numbers of white blood cells. My stools have been pale before, and I've never known exactly why. It happens when I feel overloaded and awful, like maybe my liver decides to take a couple of days off or is somehow clogged? I don't know enough about the liver. By the time I am well enough to go to the doctor (heh) my metabolic tests are all fine. Sigh.

You are right, there's always something new and upsetting to figure out! But you're not alone.
Posted 1/14/2020 4:33 PM (GMT 0)
THE MISSING LLMD HAS RETURNED!!!

Just heard from my LLMD. No explanation. She wants to prescribe me Azithromycin and atovaquone for babesia. And something for sleep. Last time we spoke we didn’t think Babesia was an issue because I had no air hunger or night sweats. I have to assume this is based on my 2 days of air hunger last week.
I told her I was off the antimicrobals and was going to focus entirely on detox for the next weeks. Correct move?
I’m also requesting a liver test given everything I was taking, the Rifampin and my greenish/grayish weird smelling stool.
I no longer have diarrhea but the color and smell is still weird.
Am I on a good path here?
Posted 1/21/2020 7:03 PM (GMT 0)
Update...Well I’ve been off the anti-microbals for over a week now and generally feel a fair bit better. Some of the most disturbing and painful symptoms have eased slightly. LLMD did prescribe mepron and azith for Babesia due to the air hunger episodes. I have not begun these yet. I’m still taking supplements.
I’m not sure how to interpret all this. I don’t feel good but I do feel better off the abx and herbs. I still have very sore thumbs and fingers which are twitching plus my calf has been tightening up on me pretty badly. However I do not feel like I’m going to die at any given moment. I’ve had some mild air hunger but not like 2 weeks ago. I’m just not sure whether to lay off everything longer or to re-start the Rifampin doxycycline combo or begin the mepron and azith. I’m glad I’m feeling a bit better but the limits on my hands with twitching in thumbs and fingers with cramps is still disabling.

Btw, the green stool must have been related to charcoal, it ended when I stopped the charcoal. I’m also on Ambien which has let me get more than six hours of sleep for the first time in 2 months.
Posted 1/21/2020 8:08 PM (GMT 0)
Be careful if you start azithromycin. I've heard it can cause long QT syndrome. I'm not exactly sure what that is, but when I was on it I started to get irregular heartbeats when I tried to swim or do anything a little bit strenuous.

I think it did help the babesia somewhat though.
Posted 1/21/2020 9:04 PM (GMT 0)
You can get an EKG to check for Long QT - as your risk could increase on azithromycin if you already have the Long QT.
Posted 1/21/2020 9:29 PM (GMT 0)
Also, generally twitching body wide is greatly reduced. Not gone but reduced. Still twitching in thumbs and fingers but even these are a bit better. Still feel super weird.
Posted 1/22/2020 4:50 PM (GMT 0)
As soon as I write that I was setting myself up. Last night woke up with pain all on my right side, from the mouth to the hands to legs, alternating from freezing cold (confirmed by fiancé) to sweltering hot...very bad night. Today, not great increased twitching all over. No idea what is going on. Scared.

Post Edited (HumanConclusion) : 1/22/2020 9:56:56 AM (GMT-7)

Posted 1/22/2020 5:13 PM (GMT 0)
Recovery isn't linear and setbacks are to be expected, but I know every flare is scary and demoralizing. It hasn't been that long since you stopped the antimicrobials, so it's still possibly a lot of those endotoxins working their way out and causing neuro inflammation along the way. Any chance you are under stress or ate something unusual, or started or stopped a supplement in the last few days? Do any short-term things help to calm neuro issues for you, like CBD and essential oils?

There are small home EKG units you can buy, maybe not as sensitive as the ones doctors use, but they can test for long QT syndrome, if that is a concern for you.
Posted 1/22/2020 5:59 PM (GMT 0)
I don’t know what long QT is???
The only thing I started was a new Vitamin B complex. It is such a dramatic setback after a good stretch very disheartening. I really haven’t noticed much helping the neurological issues one way or the other, perhaps CBD oil.

I’m planning on starting the Mepron and azith tonight. Those were the last suggestions from the LLMD and though I’ve lost confidence in her I don’t really know what else to do.
Posted 1/22/2020 6:07 PM (GMT 0)
humanconclusion do oy still feel likeyou are dying? I totally do right now from suffocation. sad
Posted 1/22/2020 6:22 PM (GMT 0)

HumanConclusion said...

The only thing I started was a new Vitamin B complex. It is such a dramatic setback after a good stretch very disheartening.

Do you have an MTHFR mutation? It's going to mess with your detox ability, and make the B vitamins useless (or even harmful) if your body isn't using them. If so, treating it and detoxing via sweat and IR sauna can be a total game changer!
Posted 1/22/2020 6:40 PM (GMT 0)
Flowergarden, the air hunger just started two weeks ago and pops up at night occasionally. It’s not as bad as being suffocated but it’s frightening enough. I haven’t treated Babesia yet and the LLMD is guessing that’s a cause. So I’m going to try the new meds.

Babs, gosh I have no idea. I didn’t even know about that until you wrote that. I did notice my urine was a neon yellow this morning. I don’t know if that means it’s not being absorbed. Started the new B-complex last night. Prior to that I’d only taken B1 and B12/adensol.
Posted 1/22/2020 7:04 PM (GMT 0)
The neon yellow pee is from the B vitamins.
Posted 1/22/2020 7:07 PM (GMT 0)
Should I stop the B vitamins? Or is that okay?
Posted 1/22/2020 8:02 PM (GMT 0)
https://www.mayoclinic.org/diseases-conditions/long-qt-syndrome/symptoms-causes/syc-20352518
Posted 1/22/2020 8:30 PM (GMT 0)
Thanks Girlie. I have no heart issues that I’m aware of. Frightening though. Lord I don’t know what to do.
Posted 1/22/2020 9:33 PM (GMT 0)
I'm sorry, I posted a reply but it never showed up.

Yes, B-vitamins always make your urine yellow. You don't have to stop unless they make you feel very bad or if you do some research and suspect you have other symptoms of MTHFR. Then you should wait until you can get tested by your doctor.

I don't want to freak you out, but rather help you - if you DO have MTHFR, your body isn't detoxing all the dead pathogens that the abx are killing off, making you feel much worse than the average herx. You're also not processing the B vitamins properly, so it's a waste. Discovering this gene mutation and treating appropriately can be a game-changer in your treatment. Detox like IR sauna and sweating can help.
Posted 1/22/2020 9:46 PM (GMT 0)
Thanks babs, ive been doing the sauna pretty much daily for 3 months now. How do you discover this mutation? I’ve often wondered if I have detox issues.
Posted 1/22/2020 9:50 PM (GMT 0)

HumanConclusion said...
Thanks Girlie. I have no heart issues that I’m aware of. Frightening though. Lord I don’t know what to do.

I took azithromycin for awhile...with no issues.

It's not a common issue... scary though, I know. I don't know of anyone who did get it from azithromycin.
Posted 1/22/2020 9:56 PM (GMT 0)
I don't know much about MTHFR because I have recovered steadily without checking - I have no reason to suspect I have detox issues. But I do have friends with it telling me how much it affects their lyme journey. Search this forum for "MTHFR Lyme" and you will find a wealth of info from people who know it better!

And I don't mean to say you must have it - I don't, and still hit plateaus in treatments, thought I was dying, and had to change protocols. Your journey sounds like all of ours. Just that you mentioned B vitamins, and I was under the impression they made you worse, but I hadn't read the whole thread. Just raised a flag in my head, and MTHFR is definitely something anyone with chronic lyme should know about!
Posted 1/28/2020 5:23 PM (GMT 0)
After a brief respite off the antimicrobals, I started the Babesia meds. Do not feel well these past few days. I don’t know if it’s a herx or just all round deterioration. I’m going to see a new LLMD out of state soon. Hopefully for more thorough treatment and care of the neurological symptoms.
I’m in a very dark place, I know others around here can relate and appreciate everyone’s support. My legs have started to tighten up and walking is becoming more difficult. In addition to the difficulties using my hands, it’s hard to dwell on ALS. I’m trying to push through.
Posted 1/28/2020 5:55 PM (GMT 0)
Thanks for updating us, HumanConclusion. I was wondering how things were going for you. I know how dismal life can feel when your mobility is reduced. I don't know about Babesia meds except that they can be heavy hitters. This is a hard road, and it's almost always a serious slog ... until it's not anymore. That day will come. One minute at a time.
Posted 1/28/2020 7:05 PM (GMT 0)
The other new thing that is weirding me out is my feet and hands have been getting super cold and difficult to warm up. Not always but daily now for about a week. Anyone else had this?
Posted 1/28/2020 8:23 PM (GMT 0)
Having cold problems now and I do get this problem in episodes every few months. I'll be sweating in a sauna at 140° and my feet are still ice cubes. Just part of the cycle.
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