I Need Support

well been there or just as absent ...couple things ya dsf has a really long half life so it may be a while . the taurine though supplying energy may contribute some to the anxiety. holy basil helped deal with the bartonella jitters a lot. much of it was lack of micro perfusion and gut disbiosis. activated charcoal may be a good neutral binder and dry you out less than bentonite. if you are not hydrated the clay will stop u up. i do the bentonite in baths or as clay packs with great relief . u aint alone ; it wasn't till i did loads of treatment and some neural resetting that i began to feel like myself. the thing is the pain and detachment had been going for so long it was hard to re-learn how to listen to the subtle signs of the body after spending so much time ignoring them. hope this helps , keep us posted

So sorry you are feeling this bad bryguy27007. I know depersonalization is the worst symptoms for me as well. I think that the foggy out of body feeling is from toxins building up in our bodies. Do you know of you have the MTHFR mutation? I think detoxing is very important especially for heavy metals, using a sauna helps or even just epsiom salt baths. I hope this helps a little.

Hello again. For my depersonalization I have good days and bad days but I cant seem to pin point what I do differently on the days that I feel bad. I have realized that the full moon affects me alot though. I have heard of the ammonia idea and it dose nake sense, I think a few people have tried LOLA. There is so many supplements, I just started taking dandelion root to see if that will help my liver. I do suspect bart because I also have a lot of neuro symptoms and foot pain. I used to use a sauna at the ymca but since they closed from covid I purchased a portable one on Amazon for under two hundred dollars. What helps you most when you are feeling bad?

Yes, please let me know how the LOLA works, I hope it helps you. Generally I do not get any head pressure, mine is more of a spacey feeling. I was never checked for EBV,mwhat symptoms do you have with that? I hope the CBD helps you too,mif it dose then it's worth the costs. I have spent a lot on trying to get better as well, I hope it pays off.

Hi, Bryan. Sorry you're going through such a rough time. I'm sure you'll find a path to a better place.

You might be right about heavy metals, but I'm not that familiar with those, personally.

In your situation, my first guess would be that mold and MCAS (mast cell activation syndrome) are issues for you. You have done loads of antimicrobial treatment, so it makes sense to explore other avenues now. Chlorella mobilizes mycotoxins (from mold) therefore could cause serious symptom worsening as it binds to them. Bentonite clay could do the same, or any other binder, so definitely start very slowly with binders. With any binder, make sure you do whatever it takes to keep your bowels moving completely every day so that you don't end up recirculating all that waste in your body (whether it's metals, mycotoxins, or other toxins).

Mold is very good at causing the neurological issues you describe, and folks with a history of Lyme often find that they are more sensitized to mold than other people. In addition, Bartonella and mold symptoms can be indistinguishable. An ERMI test of your living space (such as from Mycometrics), the standard CIRS bloodwork (https://www.survivingmold.com/diagnosis/lab-tests), and a mycotoxin urine test (such as from Great Plains) might be good ways to start figuring out how big a role mold is playing for you. Another option is to stay with your partner or anywhere other than home for 2-3 weeks and see if any of your symptoms abate, but I know that could be tough to do safely due to the pandemic. A lot of people don't explore mold for a long time because the first step in getting better has to be stopping exposure, and remediation and moving both can be disruptive and costly. But they really do not get better unless they get away from the exposure.

MCAS also could explain some of what you describe. Have you looked into this at all? Brain fog was by far my worst and most debilitating MCAS symptom, but it resolved with the right supplements and a low-histamine diet (especially the diet). People with MCAS tend to herx much more strongly than other people and for longer periods of time because their bodies are primed to over-react to toxins and cause more inflammation than they should. Anxiety, allergy-like reactions, skin issues, and digestive issues all can come from MCAS alone. Avoiding triggers is necessary for a while to get your histamine response to normalize, even with meds and supplements. Mold is a common MCAS trigger, also high-histamine foods, stress, heat, cold, abrasive fabrics, environmental toxins, airborne irritants and allergens, poison ivy, etc. Treating it can be fairly straightforward, though, so it's worth exploring. There are lab tests, but they produce mostly false negatives because they have to be done right when the body happens to be reacting to something. My LLMD didn't bother with lab tests for me because I had an immediate flare of symptoms after drinking my beloved kombucha (which, like all fermented foods, is very high in histamine).

Check out Neil Nathan's book Toxic if you have not already.

Sounds like you are on some good supplements already. I agree that CBD is worth the price if you're feeling bad! I might add curcumin to help with inflammation, and maybe an adaptogen like ashwagandha (or whichever adaptogen works best for you). Also low-histamine probiotics, or fermented foods if you don't have MCAS. ;)

I know this is a long, hard road. We all hit patches that feel pretty overwhelming and hopeless. Right now things feel especially dire with the world the way it is! But keep reaching out. This is temporary!

Girle - I definitely have a lot of fillings - I seem to have poor genetics so whether it's cavities or physical injuries like shoulder or knee injuries from sports or detoxing from lyme I seem to be worse than average at getting over it - I don't know how to tell if they are mercury or not though. My mom is actually a dental hygenist and I asked her about it because I was weary of mercury and I think she said they don't have mercury but she didn't seem sure. I searched it and I think I mostly have the ones that are tooth colored and not metal so from my cursory search it seems like maybe I don't have mercury? That would be amazing!

CalmLittleBuddah - I ordered l-ornithine and l-aspertate in a blend together (it was like $8 instead of the $60 bottle I tried to ordered yesterday but they canceled it because it was out of stock) and also some additional l-ornithine - I also got milk thistle, molybdenum, l-lysine, yucca, and activated charcoal - I'll let you know if any of those seem to work for the brain fog/depersonalization. They were all less than $10 a bottle so should be accessible for others depending on their situation.

Saraeli - Wow, that was a lot of information, thank you. I've never heard of MCAS so I'm going to have to spend some time researching that now. I have heard of those mold tests but I'm actually trying to sell my house right now so I'm not sure if it makes sense if I'm only going to live here for another couple of months but I was thinking about paying for them for whatever house we end up considering buying together. Thank you for the names of them though. You said supplements can help with the MCAS? Do you have resources for what supplements help it? If you don't have the capacity right now I can search around so don't worry about it. I'm not feeling great but better than yesterday so I should be able to find the information on my own. I did order the CBD. I have no affiliation but the brand I have found to work best is Bluebird Botanicals - I have tried a number of different companies but Bluebird is the only one I can actually notice a difference with. I told my doctors office about it like 5 years ago and now he has all his patients take it (wow how far has the CBD industry come in 5 years, there only used to be like 2 options when I first started taking it). It's expensive but they're doing 50% off now. Like I said I don't get any kickback but I'll delete that if brand recommendations aren't allowed.
- I just searched the mold test you linked and for the ERMI test you swab it yourself and then send it in? That's interesting, is that what you did?

BB - ALCAR has been helpful for me, I just ran out but I want to order more, same with NAC - those two are a great combo for me. I've never noticed a difference with l-glutathione - I just tried a bottle from my doctor and didn't notice anything. I haven't tried the IV vitamin C but I definitely would, just don't know where to do it. The one I haven't done on your list is the lithium orotate - I can ask my doctor about that next time I see him.

Thank you all for the support. I was feeling really scared yesterday and it was nice to post the thread and get responses. I'm still feeling physically crappy but more like I'm able to handle it now. I was being passive in my treatment and got kicked in the face and remembered I need to be active and be my own doctor like we all do.

My partner is actually a scientist/researcher and she is really frustrated with the lyme world being so inconclusive and treatments being so bad and seeing me struggle so she's started emailing doctors/researchers to get their data and is going to try and get a grant to study lyme. She's so intelligent and driven that maybe she'll find something the others have missed and I'll share it with you all!

Post Edited (bryguy27007) : 8/23/2020 10:53:23 AM (GMT-6)

Re: mold, yes, probably no need to bother testing your current house if you're about to move, but definitely a good idea to test the new place! Skip anyplace with a finished basement, wet basement, history of roof leaks, or known water damage. I used the ERMI dust sample option, and just swabbed the cloth in obscure nooks and crannies in the rooms I spent the most time in. Very informative. Oddly, my house had lots of molds but none of the species that produce the mycotoxins found in my urine test! So the mold affecting me was from past exposure, but I moved anyway, threw away a bunch of things and cleaned my belongings with an extensive mold-safe protocol, and had the new place fully remediated. If you want to rule out mold, then the urine test and basic CIRS bloodwork are good information to have. Nothing is foolproof, though, unfortunately.

Re: MCAS remedies, I have found that a low-histamine diet is far and away the best treatment for me, even though it's pretty restrictive, on top of my other restrictions. Fermented foods (which I love!) are the worst MCAS culprits in my case. If I am doing well overall, then a little histamine in my diet here and there won't bother me. But if my "histamine bucket," if you will, is close to full because of heat, stress, and airborne pollen, then I'm more likely to react.

Aside from diet, I also take quercetin, bromelain, and curcumin to stabilize mast cells. Prescription mast cell stabilizers are ketotifen and cromolyn sodium. People also take DAO and stinging nettles. Over-the-counter drugs include H1 and H2 blockers, meaning the antihistamines for sinus stuff (like Claritin) and the antihistamines for reflux (like Pepsid) depending on the types of symptoms you have.

Looks like you are getting lots of good replies here! Hope one of us is able to shine some light and not just overwhelm you!

Might be worth joining the Andy Cutler Chelation group and ask about your reaction to Chlorella.