Deteriorating

[outdamnspot]

I don't really understand why my condition seems to be getting so much worse, and my symptoms are so unstable.

I will have random periods of high cortisol/adrenaline (e.g. triggered when I introduce coconut oil, or when I started doing coffee enemas a few months ago) .. this isn't pleasant per se, but it allows me to cope and gives me the energy/wherewithal to get through the day; then, my adrenals 'crap out' -- like they did 2 days ago -- and I am left in a state that feels near-death .. breathless, weak, ears ringing, constantly hungry, can barely stand etc. Last time I got to this point, I thought it was the end, but the coffee enemas brought me back.

My CFS doctor gave me some suggestions last time -- methylation, probiotics etc. -- but everything I tinkered around with seemed to make the crashes worse, and I was getting frustrated that nothing even gives me marginal relief.

I think if I felt psychologically more stable, the fatigue would be something I could cope with. But I am constantly 'revved up', agitated, severely anxious etc. and don't want to keep living like this.

Stool test revealed dysbiosis (high H2S-producing bacteria), and my general bloodwork shows low Vitamin D (can't tolerate supplementation), low B12, high monocytes, low iron.

I have petechiae on my arms and my doctor decided to test me for Bartonella, but I was already tested a few months ago and it was negative.

New symptoms including orange stools and weight loss over the past 4 days (3kg), coinciding with the increased breathlessness and weakness.

It feels very surreal and scary to be trapped in such a helpless state -- I wish some doctor could just give me an answer about the symptoms like balance problems etc.

I suspect a bacterial infection of some kind and plan to try the abx. my gastro prescribed (Ampicillin and Flagyl), even though my doctor didn't think it was a good idea, but what else can I do?

 

[justy]

I'm sorry to hear how much you are suffering. I go through periods like this, and other times where I am not better but just more stable.

Bartonella testing is VERY unreliable - probably better to have a clinical dx from someone who knows what they are doing. Do you or have you had cats? flea bites?

Coffee enemas may well make you feel wired - im not sure there is really any good evidence for their efficacy. Apparently they increase Glutathione, which in turn helps with detox, side effects can be the normal wired caffeine feelings and of course more serious ruptures etc. Apparently just drinking coffee has the same effect on Glutathione.

Hoping you feel better soon. Of course if you do have an infection like Bart, the abx could make you feel a lot worse. If its for Dysbiosis why didn't they prescribe an abx like Rifaximin, which is not so broad spectrum? Flagyl can be pretty hard to deal with if you have Lyme as it breaks down cyst forms.

 

[outdamnspot]

I'm sorry to hear how much you are suffering. I go through periods like this, and other times where I am not better but just more stable.

Bartonella testing is VERY unreliable - probably better to have a clinical dx from someone who knows what they are doing. Do you or have you had cats? flea bites?

Coffee enemas may well make you feel wired - im not sure there is really any good evidence for their efficacy. Apparently they increase Glutathione, which in turn helps with detox, side effects can be the normal wired caffeine feelings and of course more serious ruptures etc. Apparently just drinking coffee has the same effect on Glutathione.

Hoping you feel better soon. Of course if you do have an infection like Bart, the abx could make you feel a lot worse. If its for Dysbiosis why didn't they prescribe an abx like Rifaximin, which is not so broad spectrum? Flagyl can be pretty hard to deal with if you have Lyme as it breaks down cyst forms.

I don't have cats but was cat-sitting for a friend for a few weeks before my CFS crash.

I can only speak to my personal experience with coffee enemas -- they helped me a lot and brought me back from rock-bottom, but now it seems I'm there again. Drinking coffee doesn't have the same effects and usually crashes me further, whereas the CE's rejuvinate me.

The problem is there isn't a lot of coordination in my health care. My regular GP is very nice but a bit skeptical about everything re: CFS. He understands it exists, but if I'm interested in trying something, he wants to know if it's 'double-blinded' and usually just tells me to rest and exercise. He's better for organizing referrals to specialists, e.g. he's referred me to the hospital for a colonoscopy because of the weight loss.

My CFS GP tells me to come back every 3 months and is nearly impossible to reach between appointments. She seems reluctant to actually be aggressive with treatment and wants me to take expensive herbal formulas from Beyond Balance for detoxing etc. Last time, she said to start with Methylfolate, then add probiotics, then add herbs etc. It looked good on paper but I couldn't tolerate 200mcg of M-Folate (or B12 at all), so then what? I just keep getting worse and can't spend months tinkering with supplements.

The antibiotics are from a gastro who is interested in dysbiosis -- but then can't comment on the rest of the CFS. Not sure why he didn't prescribe Rifaximin but it looks like it's rather expensive here. So I'm sure the abx. (Flagyl and Ampicillin) will help the anaeroboic overgrowths in my gut, but then I don't know if I'm dealing with other infections like Bartonella. But I feel like perhaps it's worth the risk -- to get worse on abx. in the hope of killing something that's bringing me down? And at least a herx might confirm a bacterial infection? Unless there is a potential danger to using something as strong as Flagyl. But otherwise I will just keep backsliding.

 

[justy]

I know first hand how frustrating this can all be - stuck between a rock and a hard place most of the time. I hope something comes good for you soon.

 

[caledonia]

It sounds like you may have adrenal fatigue. Are you doing electrolyte support for that, such as magnesium, potassium and sodium (salt)?

Magnesium and GABA or theanine can help with anxiety. Avoiding glutamates in processed food can help too. There are also some natural glutamates - tomatoes, mushrooms, Parmesan cheese and one more I can never remember.

Some people do well with adrenal cortex extract. I found that overstimulating. During periods of extra stress, a 1/4 or less of a Dr. Wilson's Ardrenal Rebuilder works well for me. More than that is overstimulating. Otherwise I just do electrolyte support.

You can increase glutathione with vitamin E (the natural kind) and vitamin C. Milk thistle also supports the liver.

I googled orange stools - it can range from you ate a bunch of carrots or took certain medications, to IBS, to low bile flow from the gall bladder.

 

[erin]

Orange stools I have too. It could be the remnants of bile apparently.Or liver, gall bladder and other digestive organs not working properly, not enough enzymes released so undigested fats will come out with the stools. This also irritates the intestines very painful and causes itchy bum too. It is beyond annoying, some kind of torture.

 

[Silence]

These same symptoms of anxiety, breathlessness, more prone to crashing, weakness, and ear ringing did not stop for me untill the inflammation and excitotoxicity within the brain was slowed down. I did this with LDN- low dose naltrexone and valium( benzodiazapene), also avoiding things that are excitatory, usually amino acids like glutamine and aspartic acid, also avoiding proteins in any form helped me.

Omega 3 fish oil by nordic naturals helps with brain inflammation for me.

Are you on any medications to help with neuro inflammation?

I also have yellowy stools caused by secondary bile acid problems which i have not figured out yet

 

[alice111]

Sorry if someone already said this, but have you tried LDN? For me it really evened things out physically and mentally. I also have a friend ho had the same results! You might want to give it a try, just start low go slow. 2.5mg is my sweet spot

 

[actup]

@outdamnspot, please consider orthostatic intolerance if you haven't already. I've come to believe that it's usually missed in the majority of autoimmune illnesses and causes many of the symptoms you described. Sitting bps don't reveal this problem. I've not had any of the "feel like I want to die" crashes since starting midodrine to increase my standing/sitting bp and decrease the accompanying tachycardia. I've gone from needing to lie down maybe 80 % of the time during the day to about half of the time. I still crash but not as severely. Oddly flu symptoms are decreased as well. Hope you feel better

 

[Sushi]

Rifaximin but it looks like it's rather expensive here. So I'm sure the abx. (Flagyl and Ampicillin) will help the anaeroboic overgrowths in my gut, but then I don't know if I'm dealing with other infections like Bartonella.

Not sure what country you are in but in the US they only have the very expensive brand name version--but you doctor can fax your script to a Canadian pharmacy where the generic is quite reasonable.

There are many strains of Bartonella and you can easily get it from insect bites--most commonly ticks.

Unless there is a potential danger to using something as strong as Flagyl.

We all have different drug sensitivity but Flagyl really set me back. I won't take it again.

 

[outdamnspot]

These same symptoms of anxiety, breathlessness, more prone to crashing, weakness, and ear ringing did not stop for me untill the inflammation and excitotoxicity within the brain was slowed down. I did this with LDN- low dose naltrexone and valium( benzodiazapene), also avoiding things that are excitatory, usually amino acids like glutamine and aspartic acid, also avoiding proteins in any form helped me.

Omega 3 fish oil by nordic naturals helps with brain inflammation for me.

Are you on any medications to help with neuro inflammation?

I also have yellowy stools caused by secondary bile acid problems which i have not figured out yet

I did try LDN but it seemed to make my adrenal issues worse. I only gave it 3 days -- maybe I should have stuck with it longer. But I have read about others on here having similar issues. I'm not on any medications for inflammation since I can't seem to tolerate anything anymore (supplements, etc.).

 

[outdamnspot]

Not sure what country you are in but in the US they only have the very expensive brand name version--but you doctor can fax your scrip to a Canadian pharmacy where the generic is quite reasonable.

I'm in Australia.

There are many strains of Bartonella and you can easily get it from insect bites--most commonly ticks.
We all have different drug sensitivity but Flagyl really set me back. I won't take it again.

In what way did Flagyl set you back?

 

[Sushi]

I'm in Australia.

There are some online chemists that will fill a prescription for the generic rifaxamin.

In what way did Flagyl set you back?

In many ways--gastric, energy--looking back (it was a long time ago), taking Flagyl seems to have been the beginning of many CFS symptoms for me.