New Here, Undiagnosed For Years, Looking For Support.

Here is what my treatment looks like:

Day 1:
Magnesium Glycinate: Start at 400-600mg/day of magnesium. Increase by an increment of 100-200mg/day until you reach one episode of loose stool. Then reduce by one increment and stay at that dosage.
(begin adding in Epsom salt baths)

Day 2:
Detox Support Supplements:
• MultiPhase Detox: 2 caps 30 min before breakfast, lunch & dinner (detox) OR Milk Thistle: 1,000mg 3x/day.

Day 3:
• Nutramedix Burbur Pinella for detox support: 20 drops in water 30 min before breakfast, lunch, and dinner. During Acute herx or worsening of symptoms take 8 drops every 10-15min for a maximum of 2 hours.

Day 5: Optional (Adaptogen): I am in the process of finding one that best suits you. I will email you once I find an appropriate one that fits best for your presentation and constitution.

Then when he emailed me he came up with Cortisol Manager, and then later emailed me saying if that isn't doing it, we can try a nervine glycerite.


IN TWO WEEKS BEGIN:

Day 14:
Nutramedix Serrapeptase: 1 capsule twice a day, 30 minutes before breakfast and dinner (addresses biofilm).

Day 16:
A-Bab: START at 1 drop twice a day 45minutes before breakfast and dinner. INCREASE by 1 drop twice a day every day as you can tolerate. Once you get to 25 drops twice a day, the goal is to remain on that dosage for a month. Increase at your own pace, it is okay to stay on this dosage for however much time you need to tolerate the increase.

Therapies:
Epsom Salt Baths: 2 cups of Epsom salts in a warm/hot bath, remain in the bath for about 20 min. Be sure to hydrate after bath.

Diet: At this time remove or reduce as much as possible sugar, yeast, and alcohol from diet. If fermented foods cause a reaction remove those as well. Drink 2-3 liters of water a day (add a pinch of salt or non-flavored electrolytes into water to increase absorption/hydration) (The Apothecary has a product called Elyte Electrolytes if you are interested).

----

I hope this is a good start and it works out. Wish me good luck!

Welcome to the forum, Forest!

Many of us absolutely have been where you are, some of us multiple times, and definitely feel or have felt how you describe. This forum definitely is a place to connect with people in the same boat of scary symptoms, low quality of life, tick-borne infections, lengthy and difficult treatments, and various types of toxicity. That's our whole wheelhouse. The good part of that is that we're good for brainstorming, sharing personal experiences, and supporting each other as we all find our (highly individualized!) paths toward healthier days.

WBF's question of where you were/are exposed to mold is crucial, as if your exposure continues, then you probably cannot improve.

It's great that you feel good about your medical team! Do you have a good LLMD? Did you find a neurologist who is supporting you with dysautonomia (POTS) and your other neurological issues?

I had most of the symptoms you describe early on in my illness, or similar ones. In my case it was dizziness, hyperacusis, retinal swelling causing vision loss, paresthesias, anxiety, and dysautonomia. I was prescribed an SSRI for migraines, and all of these symptoms got much worse after I tried that for a few months because it messed up my gut and altered my neurotransmitters. Some of these things can take a lot of time and effort to correct!

We all want to get better fast, but that's usually not how it goes. But you'll get there. Just go one step at a time, and don't try to push through treatments that feel intolerably hard on your body. Going "low and slow" is the right thing. Rooting for you!

Hi there everyone. Hard to type right now, but I will try to reply as best I can.

For one, I come from a medical background and so I know what I know, but then again with this, I only know so much. I hope you can make sense of that.

I think the reason serrapeptase is being used in the beginning is to address the biofilm for the Lyme/Babesia, as we are working on Lyme first, as this is generally the first step when combatting the entire complexity of Lyme/CIRS, etc. But feel free to let me know why you say this?

As I said in my post, I supposedly have one of the best. Their names are "Dr. Alexis Chesney" and "Dr. Frank Song", and they have been doing this for a number of years. I wanted to make sure I got good docs before doing this, due to how bad I am. Apparently, they work to make the best personalized plan they can. Dr. Alexis Chesney also wrote a book, although I have not read it. I just know that everyone in my area says she is very good at what she does, so that makes me feel better about this, being this is such a serious matter. I can only assume Dr. Frank Song is just as good if they are working together on my case. I also have a variety of other healthcare professionals working on my case.

I have recently moved out of the bedroom that has mold, but I am mostly stuck in this house. Again, I think we are trying to address the Lyme/Babesia first, as this is the typical protocol.

I went through this in 2018, but not sure if that was benzodiazepine withdrawal, or was a Lyme/Babesia relapse. I was never tested at that point and got hit with the usual "somatization" diagnosis. Now they can actually see that I am pretty messed up, but at least this time I don't have 8 months straight of face numbness that doesn't stop. This time it is in my spine and right arm, but it is getting worse and extending into my left arm now. I can say that things feel similar, yet different. My eyes feel like I am stuck in another world, but it isn't quite like DPDR. Sorry, I am just ranting I guess...

You know what they say about neurologists, treat and retreat! Haha. But really, my neurologist just said it's somatization again. I found out I have babesiosis after seeing him. He is said to be some awesome guru, but he's really not that good and he is quite rude. I m seeing someone new. Also, the POTS is not really there anymore. However, I do still show signs of dysautonomia, but I wouldn't call it POTS. I don't have a name so I'll get back on that one lol.

I have every single one of those things and also many more symptoms, unfortunately. I hope I am not so bad that I won't ever get well again. :/ I may just be sensitive, and that is possible, but

It's more than likely that I got bit in 2007/2008 and I have been dealing with some harsh stuff since 2011, but at that point, it was not 24/7 like it is now. I get no breaks. I deal with at least 3-5 symptoms 24/7, and although they switch up, some things are always there like the fact that I have not been able to feel certain parts of my body for months, and it is associated with pain that has been there for many years, which I thought was simply due to fibromyalgia and chronic fatigue syndrome. By the time I was about 22, I was already diagnosed with 22 things (I am 28 years old now, for reference). Always something to chuckle at, because I had always been treated by western docs that didn't care about finding the underlying cause. I know there are so many with this, and I feel your pain!

I do have a lot of anxiety and surely, that can be the mold that has gotten into my brain. It could be the Lyme stuff. Who really knows, because truth is, there is still so much unknown about all of this. Believe me, I have already put a lot of deep research into this. Between looking at many other's posts, and looking at various NIH, PubMed, etc. posts, I have been trying to help myself by getting everything that I can. I think I need to just sit back and listen to my docs, or else I am gonna drive myself nuts.

I came off from that stuff years ago. No way I wanna go through that again! Symptoms are just like this with that stuff.

L-Theanine is in my detox supplement. I am hoping I react well with everything in it. I have not had green tea in such a long time, but that is such a small amount of L-Theanine too. But as said before, I am so sensitive to every little thing. I do eat fatty fish often though! Oh, and sleep is one of, if not the most important thing in all of this. 8 hours minimum is tough, but I aim for it. However, my body has trouble getting out the gunk, so I am hoping these supplements help address the problem so that way when I sleep, it'll come on out!

I have a brain MRI later today. Hoping for no lesions! I am really not well off, and being bedridden is even worse since I cannot exercise. Anyways, wish me luck.

One last thing - why do I feel weird after taking just 200 MG of Magnesium Glycinate? That is the only thing I am taking currently until I get the other stuff. I am really freaked out to take anything. I am certainly a mess.

I hope you are all doing well, or at least okay. I feel stuck and like I won't get better. I hope I can get there. I have done this for so long before, as this definitely is not my first run. Just my first run here. That is all I've got. Take care!

I’d find a way to get out of that house. Just moving to another room is not likely to work. My CIRS doctor tried that and nearly died. She and her husband bought a 5th wheeler and got out.

Forest - I am sorry you are suffering so much with this disease.

“ I am scared to take anything. I was on benzos for years, and if anyone knows about that, it's hellish to get off of“

I do know - my elderly father was given Benzos after a surgery and as you said it was “hellish to get off of”
In fact - he was never the same after that.

There are non pharma supplements you could try for the anxiety.

Edit: I reread your post - You are already taking L Theanine and magnesium.
The theanine helps my husband - but it didn’t work for me. But I didn’t try increasing the dose.

You may need to increase doses of some supplements - like theanine.

Sorry, Forest. I didn’t choose my words very carefully.

I want to let everyone know that I am going to try to tighten up my responses from now on. I did not realize how long that last post was. I tend to write and write. After all, it's something I do as a musician. Something that has been so hard to focus on these days. :/

“ Curious if anyone else also feels like they are symptomatic 24/7?”

- Yes. For me, it has been primarily due to mold toxins and inability to detox properly and to MCAS, the result mold and detox impairment.

- The most beneficial things that helped stabilize my symptoms were: getting away from exposure, Rx antifungals, TUDCA, and Zyrtec.

Thank you both very much for the replies. Right now I barely have anyone in my life and I lie in bed nearly 24/7 so it sucks. I used to just be tired for years but now I really am in bed for a good reason.

WalkingbyFaith - I am sorry to hear this. Today I blocked off the room completely and sometime this week, my family and a friend are going to go in that room and really deep clean it with a mixture I made of vinegar and tea tree oil. I am going to be in another room while every item is hand cleaned, one by one, that way everything is as clean as it possibly can be. Any little bit helps. You can't see the mold, but it's in there and it's attached to things for sure. I do have a HEPA filter in that room for now (this is now my old bedroom), and in this room (my new bedroom) I have a Molekule, as the reviews seemed good and it was affordable with the current discounts. So far, so good with it. The air smells similar to how my local hospital smells like. Not sure what to think about that lol. Anyways, I am not sure how far along you are in your journey and what you had/have now, but I would love to hear the improvements and what actually makes you feel some relief. Nothing has given me relief. The very closest thing I get to it is when I am lying down and I still get vertigo, anxiety, etc. No matter what I eat or do. I am really in it, I guess. :/

Girlie - That is truly great to hear! I am so bad currently. I am terrified to even start the A-BAB and Serrapeptase. It's hard for me to even know when I am herxing, or if the symptoms I have are just my symptoms. It's crazy how I am new to this world, but I have already gone through the trauma of this beforehand. It's weird because the only thing I used was CBD a few years ago. I wonder if that was enough to kill whatever, at least for a bit. It was used 2-3 times a day for months, so I can imagine it could have had an effect. I only took it because I thought it might benefit my brain health since it is neuroprotective after all. I don't remember getting any relief from it either. But between diet and that, maybe I knocked it down until the rest of it stayed dormant.

I remember going through the same process. I am not sure if I mentioned this before, but I am 28 so this is all quite a lot for me being that it all started before my 20s. I worry that I have had it for a long time and will be stuck, but reading your post gives me better hope. It's really great that you are on here sharing this and taking the time to help others. Some only stick around while they are suffering. I can't wait to be able to walk around again and enjoy such simple things, like the sun, and even eating. I hate feeling like eating is a chore. Every 10-15 minutes after and I begin to feel the anxiety set in. Then the symptoms hit worse. The fact that I am not even actually treating this yet really scares me. I can only hope that taking it will either do the opposite or maybe I won't actually feel a difference. I will say I would ABSOLUTELY take no energy over this overstimulation I am stuck in ANY DAY!

I am also thinking about doing Biomagnetic Pair Therapy. I might have mentioned this, but who knows, might be worth a shot. I know someone in my area who says she will work with me on price. She went through it and she said it was the only thing that really worked for her. She also said she had the same doctors as me too, and that we are all different, and trying multiple things might be what is necessary to treat this. That makes sense, being there are things of the unknown out there. It's more reason to do natural treatments, considering the wide array of plants out there that can do what many drugs cannot do. We just don't speak on it and a lot of it is still being researched to this day. Hence the CBD in 2018. I would try that again, but I get extremly anxious taking it this time around, so it's a no go.

I am a bit worried about taking things. I still have yet to take the Bubur Pinella. Does this help anyone else? I am trying to get a hold of myself and it feels near impossible. I think the support is helpful but ugh, it's like this feeling like no matter what I do it doesn't help, then again, I feel like there may be something like possibly the Burbur Pinella, but the fear is so bad I don't wanna try that or the Kelmerite Glycerite. I do, but I don't.

Did you (or anyone here) get exasperated panic/anxiety when they herxed? I have not stopped having extremely severe anxiety (I always feel on edge on panic) in many months, but I am curious about others' experiences. Clearly, I am really bad in the anxiety department, but I DON'T get the flu or anything. Why is that? I mean, it's weird how I don't feel that way. I don't get that feeling of my head getting hot and me feeling unwell, but it's like that all of the time.

I have heard that once I start treating this, through time, I will notice my symptoms getting better. I just find it hard to believe. Bleh!

Have you ever tried either arteminisin or mimosa pudica? They really knocked out my babesia infection cold.

I didn't notice too much herxing, except the artemisinin made me extremely tired and sleepy.

No one really mentions them a lot to treat babesia, but they really helped me a lot.