Can't detox - now what? (Also air hunger, genetics)

I haven't had any genetic testing done, but I'm pretty sure I have severely impaired detox pathways. Right now I'm trying to recover from severe air hunger after cleaning out a nasty moldy doghouse 2 days ago (with a mask, which wasn't good enough).

I'm looking at something like Microbe Formulas' detox phase 1: drainage protocol, but some of the ingredients sound pretty harsh to me.

(For background, I herxed on only one drop of Byron White formulas. I tried A-L, then Detox-1, then A-Inflam. All separately, with weeks long breaks in between.)

So I'm both scared to try something new, but desperate to. What's the gentlest possible way to effectively open those pathways without stirring up the uglies?

Would genetic testing tell me where the big roadblocks are, and more importantly what to do about it? Has anyone had success there, and with which tests? Is 23andme good enough to start with? I did try the search function but didn't get very far. It's hard to breathe.

I'm looking into mold and other toxicity testing but it seems I won't ge far without figuring out how to get my body to detox and let me breathe at the same time.

I've been taking Bioray Liver Life, milk thistle, Energetix Drainage-tone, Dandy blend, and a local herbalist's detox tincture. During this episode I've tried cautiously adding charcoal and chlorella but I worry about the latter trying to pull too much out rather than just bind & drain.

I'm also having gas & bloating, rumbling tummy, no appetite, coated tongue. Have stopped most supplements as of today. Still taking charcoal, magnesium, & CBD.

as far as the mold exposure you need to get some choropyll in you stat. 20 chlorophyll caps should really help you out.

also look into doing anti mold essential oils in a nebullizer

Please don't apologize for "rambling," leeboo. This is a fine place to vent! I am so sorry for what you are going through. I'm mostly bedridden, too, for months now, and off and on for years, and I know that it's terribly frustrating to feel like a burden to others and to be unable to care for those who depend on you. Please be gentle with yourself.

It sounds like you know a lot and do plenty of research, so forgive however much of this is repetitive for you.

You probably know that babesia also can cause air hunger, as can a babesia herx. Just throwing that out there in case that's a closer fit for you than mold. I never had any babesia symptoms (despite a positive test) until I did one bioresonance treatment that targeted babesia, and the herx was my aggravating introduction to air hunger. What an awful symptom.

One thing that helped me was a $24 pulse oximeter that I ordered from Amazon. My understanding is that most of us with air hunger are actually getting enough air, we just don't feel like we are, so being able to look at my gadget (which tells me in a few seconds what my oxygen saturation and pulse are) is extremely reassuring. I may feel like I'm unable to get enough air, but my pulse ox is almost always 98 or 99%. Being able to assuage the fear helped physically, too - slowed pulse, breathing, cortisol, etc. which are all so important. Sometimes I think the stress and trauma of this illness is worse than the illness itself!

I really do feel your pain about needing to get stronger and more stable in order to be able to handle more treatment, even just detox! A lot of people don't get it. My instinct is that there must be something different about us fundamentally, but I can't figure out what. Please keep honoring your instincts when it comes to treatment decisions. These are complex illnesses, and your doctor is a consultant, not the one in charge.

My current treatment approach is bioresonance - using sound waves to penetrate tissues and organs to kill microbes and restore normal function - using an AmpCoil device (like rife + PEMF with a biofeedback app). It's very promising and, since it's not ingested, does not rely on our bodies to process it. But it's so freaking effective that I barely can handle the low-intensity settings for "sensitive" users. People at the company and practitioners who use these devices have consulted with me about it dozens of times, and I seem to be an anomaly - this device is supposed to be so gentle! It's designed for the worst of the worst, the hopelssly sensitive Lyme-ravaged folks for whom nothing else worked. Not sure how I got so fragile. Really hope I figure out why one of these days.

I agree that a heavy metals test that involves chelators would be a bad idea for you. There are hair tests that are less reliable but won't set you back months. And maybe something like kinesiology (muscle testing) or a Zyto scan is something that resonates with you? If you can find practitioners who do those things. People love infrared saunas, but really sensitive folks feel worse after them, so there's no point (in my opinion) unless you have access to one you can use for just a few minutes at a time.

I know that basically everyone feels worse when they are using effective treatment strategies, at least for a while, and we have to push through. But it's not that simple for those of us whose herxes can send us to the hospital with life-threatening shenanigans. And whose herxes remain so intense that we can't use enough of any treatments to make progress. How do you heal from something when your body can't handle the treatment, right? I guess we just have to keep trying until we find the thing we can tolerate and keep our bodies extra well cared-for in the mean time - gut, immunity, stress, toxins, etc.

I'm continually frustrated that there's no support system for this. In a more responsible future, perhaps folks like us will be admitted to a nontoxic treatment center, paid for by insurance, and monitored and supported through our toughest weeks or months of treatment, by integrative and functional medicine and naturopathic and bodywork practitioners who know how these illnesses work. Or knowledgable caregivers would come to our houses and take care of us when we need it.

You will clear this hurdle. I'm not saying that there won't be another hurdle, but this particular thing is temporary. Your body is processing, at its own pace. Keep trying things, but don't push too hard. One day at a time.

Hi leeboo - welcome to our community.

Sorry you are suffering so much. I hope your appt goes well...please give us an update when you get back home.

Thanks Girlie! Sebreg, I've heard of MCAS but haven't looked into it yet. Will check out your link when I get home again - have to leave again soon for acupuncture (feeling very lucky I can get that done today, even if I can't drive).

The NP appt went better than expected. She's had personal experience with mold & air hunger before so she actually believed me, which is half the battle. I didn't expect her to go along with the Lyme/Babesia thing, and she didn't, but at least she knew about mold.

She thinks I'm having a severe histamine reaction from the mold & whatever else I stirred up in that doghouse. The gut symptoms she attributes to stress & not eating - I don't know if she's right or wrong there, but at least she didn't dismiss the air hunger as anxiety.

She's prescribed me 2 inhalers - albuterol and a steroid. Plus a nasal spray. I'm nervous about big pharma in general these days (antidepressant withdrawal, anyone?) but especially the albuterol - the NP says it can cause palpitations and racing heart, but that its temporary, like an hour or so. I already have palpitations but hopefully I can handle that much if it means I can breathe.

I asked her why my oxygen saturation is normal & she said its common even in people with severe COPD to have normal levels. Something about the oximeter showing hemoglobin levels under the fingernail which doesn't necessarily correlate with the amount of air getting to the lungs. I don't really understand it but she said the Rx will help with the latter.

She said it could take a couple of weeks or more before I feel much better and that I should probably avoid going home for now. Which is hard because my mom's about had it after only two days. Maybe if I start to improve I can get over there sooner, at least to pick up things I need. I think my home is moldy but it was the doghouse that really did me in.

Charcoal makes MCAS worse? Yikes...

jb1994 said...
Charcoal makes MCAS worse? Yikes...

Well, she didn't mention MCAS specifically, so who knows what she meant. I just read the article you linked - could very well be a factor although I haven't had the hives & swelling.

I've started on the inhalers & nasal spray and dropped the charcoal. Only using half the inhaler dose at first but it seems okay so far. Starting to add a few things back in like LDN and NAC. Going to try adding back the rest of my anti-allergy stuff: Allerase enzymes, Chinese herbs for allergies, Allegra and Benadryl. Then would like to add back my liver & detox support stuff.

Not sure this is relevant, but after the big mold exposure my first symptom was increased sinus pressure & inflammation. My acupuncturist switched me from my usual Chinese herbs for allergies to a different blend that's more for sinus infections. It seemed to help at first because my sinuses seemed to calm down a bit, but then the air hunger reared its nasty ugly head. Also, the night before the air hunger hit I had a cup of tea with a nice big sprinkle of clove and maybe cinnamon in it. Was also burning a beeswax candle, maybe too close to my face.

Today was definitely better - I dreaded having to get up and go out, but having the NP believe me & offer something helped a lot. Then my acupuncturist approved of the inhalers which helped assuage my anxiety there. Maybe it's placebo, but I will take it for now. I was even able to go home & grab some things and see my cat for a few minutes.

My appetite is coming back tho solid food is still a challenge. I think breathing through my nose is harder then I'd thought - the congestion is further back in my sinuses, not right up front, if that makes any sense. Then I actually got SIX hours of sleep, yay (I've been getting about 2-3 hours with very brief dozes in between for the past few days). The AH seems worst from about 2am -8am so I'm wide awake now, but it's not quite as bad.

My LLMD has yet to reply to my message (one time it took him 2 weeks), so I'm looking at seeing a FNP who's treated a friend with Lyme using the Cowden protocol. By "looking into" I mean I sent a message using the contact form on their website, and got an email back saying to just call the office. Ugh, then what was the point of the form except to waste time? Why do doctors do this? Anyway, if I ever do see her I will try to remember to ask about MCAS in addition to mold and the rest.