Vertigo - Herx? Something else?

Hi All,

I was treating lyme and bart for about two weeks on an herbal protocol from a homeopathic doctor.

The regimen is pretty intense but I was doing well for the first couple weeks. I was home for the holidays at my parent's house and some of my symptoms seemed to subside. However, I returned to my apartment in California a few days ago and I've been struggling since then. I'm experiencing pretty intense vertigo and feel extremely dizzy when walking around and laying down.

Could this all be herx? The doctor suggested I stop treatment for now, which I did a few days ago but I'm still super dizzy. I have an appointment with a functional medicine LLMD a week from today, so I'm holding on for that.

I'm suspicious that my apartment might have mold or something because my symptoms flared up almost immediately after returning. I'm supposed to move in a few weeks but I'm not sure what to do in the meantime if environmental factors are contributing.

Looking for any guidance. I was encouraged by my improvement at first but now I'm worried again.

@ Lightlife - yes, I flew cross country from PA to CA on 1/3. Could that have set it off?

Ps. Sorry that reply was confusing.

I bet it’s a Herx. Detox as much as you can. Good luck

WalkingByFaith -
I stayed with a friend for a couple nights and I’m going to check into a hotel for a few days to see if it alleviates some of my symptoms. Will have to figure out what to do for the rest of Jan if it seems like mold is the problem.

Seeing a lot of mixed opinions on purging belongings. If mold does end up being a factor, I’m hoping my new functional MD can help advise on that front.

Just FYI vertigo is a common symptom. What are the reasons you suspect mold? I know mold can be a real possibility as I myself deal with mold issues but I really think flying plus Lyme/ treatment is the most probable.

There are mycotoxin tests you can do. If need be.

I believe in general vert takes awhile to resolve and may come on again .. cluster. But may not.

Blue if u read- I had both vertigo as a symptom as well as boat rocking sensation do you guys think that clear indicator of Bart?

Lightlife - I was already suspicious of environmental factors at my apartment in the fall, when they started doing construction (sandblasting old paint, scraping old wood, resolving termite damage, repainting). My symptoms worsened immediately after that, and any time I was away they seemed to lessen slightly. I get way more rashes, particularly after bathing, when I’m at home. I also experience severe body vibrations/buzzing that only seems to occur at home. I’m currently staying at a hotel for a few nights to see if anything subsides.

The vertigo is still going strong as of today. Any additional tips to get rid of it? I went to the chiropractor but it didn’t help. Have an acupuncture appt on Monday. Would infrared sauna help? I haven’t done that yet but there’s a place I can go nearby.

Oh my goodness, with the construction project Mdestefa describes, I'm definitely changing my vote to mold. Holy moly.

Sauna might make you worse for a while, but it helps to mobilize the toxins out of your body. So yes, go to the sauna, but don't expect symptom relief from it the first time.

Binders! Use an air purifier that purifies to 0.01 microns if you need to be at home. Move ASAP and get rid of as many porous things as you can. Definitely get rid of mattresses, pillows, comforters, and upholstered furniture. Get rid of books and papers if you can. Clean everything with vinegar solution and let things sit in the sun if possible. Unpack boxes outside and wipe everything with vinegar again at the destination before bringing it inside. Don't bring cardboard in the house. Change the soil in houseplants and let them be outdoors in the sun if you can, or possibly re-home them. I know it's a ton of work, but mold and mycotoxins are tenacious.

Just an FYI for everyone: the boat rocking sensation is called MDDS (Mal de Debarquement Syndrome). The only doctor who treats it is at Mt. Sinai in NYC, but I'm not sure if his treatment works for MDDS caused by infections or not. There's no diagnostic test for it.

Use binders. If possible, do a Great Plains mycotoxin test so you know which mycotoxins you are dealing with, as different binders work best for different mycotoxins. Binders can include modified citrus pectin, cholestyramine (rx), activated charcoal, okra, bentonite clay, and others.... These must be taken away from food and supplements.

Also, if financially possible, then get an air purifier that filters down to 0.01 microns. They are hard to find.

Neil Nathan's book Toxic is a great resource for recovery ideas, too.

Your porous belongings are garbage, largely. Sorry. I know it's wasteful.

Your landlords most likely are not doing anything illegal. Unfortunately there are not laws about mold like there are for other contaminants such as lead. Also, not everyone will react to mycotoxins, and not every mold produces mycotoxins that cause illness. Some molds are more dangerous than others, but only Stachybotrys is considered dangerous legally (at least where I live) so you'd have to prove that particular mold is there. You might be able to make a case about negligence during construction, but that will depend on local laws. If you like these people, then I would recommend just educating them about mold and making them aware of the health emergency and disability it caused for you. Mycotoxins are not good for anyone, Lyme or not, but legal recourse is rare.

HeartsInPain - Yes, it can stay in your system for years. Binders and glutathione might actually mobilize it and create symptoms. And of course dealing with Lyme can weaken your system and create a sensitivity to mold that you previously processed without consequence. Boarding up mold isn't usually the best plan because houses are not airtight, and the stack effect means that air is always moving. Also, in case this is helpful, plaster is better than drywall for such things because processed cellulose (like in drywall, particleboard, cardboard) grows the more toxic molds, whereas materials closer to their natural state (plaster, solid wood) don't harbor much mold, don't grow it very fast, and tend to grow the less toxic molds. (This is why finished basements are notorious for As-Pen and Stachy. My mold inspector insists that there's no such thing as a non-moldy finished basement, and since 25% of the air on the first floor comes from the basement, it's just a terrible idea for the mold-sensitive to finish a below-grade space.) That's a tangent but might be interesting to someone. I paid a fortune for the pro expertise, so I want to share what I learned in case it helps someone!

I'm sorry you are dealing with all of this.

Yes, I think you can soak clothes in vinegar. There are other laundry additives, too, that are essential oils-based. I'm a big believer in a hot dryer and then hours of strong sunlight as well. Books and papers you can scan with your phone, buy new copies, wipe each page with a microfiber cloth sprayed with vinegar, or store them in plastic bins and open outside.

Your MDDS will subside. I wish I could say when, but I promise you it will. (Honestly it's a little weird to be still again!) Craniosacral therapy, self-lymphatic massage of the neck, and really chilling out will help. Being away from your apartment sounds like a big help, since you said you felt improvement in only a couple of weeks! A hint might return now and then, because it can take years to process out all of the mycotoxins that built up, depending on how much you have stored.

Another idea is to take the anxiety out of it - anxiety cements neuro symptoms and makes them harder to eradicate. When you feel it the most, try swaying with it on purpose. Sometimes it helped me to tell myself it was something nice, like I was on a boat or I was dancing. Trick your brain a little by giving in to it.

I use past tense, but it does still come back from time to time. If the barometric pressure drops suddenly, or I have a lot of inflammation in general, it's still one of the symptoms my illness keeps in its nefarious toolbox. But it's mild and occasional now, whereas for the better part of a year it was constant and often disabling....

You might have an awesome allergist who knows about this stuff, but in general allergists don't. What folks with Lyme experience with mold is not technically a mold allergy, in my understanding. It's a particular sensitivity to mycotoxins specifically, and a particular inability to process them out effectively. Mycotoxins are toxic to everyone. (People who die after two weeks of being fed arsenic aren't allergic to arsenic, they just don't process it as well as people who survive for four weeks of being fed arsenic. It's a weird example, but sort of works? Maybe someone can explain it better than I.) But! If you have other known allergies, which may or may not include a true mold allergy (to actual mold and spores, not mycotoxins), then your body definitely will thank you for having them well-controlled. (I do sometimes tell people that I have a mold "allergy" and therefore won't be hanging out in their basement, for example, because it's easier than explaining mycotoxin issues!)

Do you have MCAS as well? That presents like allergies for many people and is very common with Lyme and mold, and can increase inflammation and MDDS....

Sorry this post is a little scattered....

MDDS started for me about two years into my illness. (I've been sick for four years.) I've always had issues with dizziness and proprioception with Lyme, but as you know MDDS is distinct. If I recall correctly, it started most noticeably after I had major vertigo with a strong Bartonella herx after using the DesBio series kit. For a couple of months I felt that I was swaying at all times - so distracting and made it tough to get around. It seems to flare with herxes and barometric pressure drops, and then persists. It also seems to flare alongside POTS and menstruation (I assume because of the inflammation associated with hormonal fluctuation). Treatment aimed at neuro health (not killing bugs) seems to help the most. I think craniosacral therapy, lymphatic massage, and anything that reduces inflammation helped a lot, too.

Also, don't feel weird if you really hate this symptom. It's maddening. There aren't many websites about it, but the ones I have found have suicide helplines listed because it makes people feel so miserable!

Sara already gave some good info about mold. After reading what you wrote and the symptoms you described and the need for an Epipen, I would get out ASAP.

Clothes are iffy. I was told by my CIRS doctor to wash them in Borax and vinegar. Then I read something online contradicting, saying Borax and vinegar together may cancel each other out. I have also heard of using ammonia (Quat/quaternary ammonia). There’s also a product called EC3 that makes a laundry cleaner. My current doc says it works, but I am skeptical. I have the spray and can’t tell it does anything other than give a slightly citrus smell to the air.

I always use Borax in the wash now. However, even after washing my clothes from the moldy house multiple times in Borax, I still felt I was reacting to them. I replaced everything.

Laptops, hairdryers, refrigerators, portable heaters or fans - anything that has a fan and openings where air passes through can contaminate the new environment with mold spores and mycotoxins. You could clean the laptop wiping it with an alcohol solution and vacuuming all openings and spraying the keyboard and openings with compressed air and vacuuming some more. Then store it in a zippered bag and only take it outside to use.

I would recommend cleaning and storing any possessions you want to try to salvage in an alternate location and replacing the basics. Give your body time to unmask (The Beginners Guide to Mold Avoidance explains this phenomenon) and detox (could take months to 1+ years) before trying out your stuff. Read up on CIRS and mold avoiders about how to clean mold and denature mycotoxins. Then test out one item at a time to see if you react to it.

I have severe mold issues and haven’t really gotten any of it right. I really should have followed the path of the extreme mold avoiders, but I didn’t. I kept trying to compromise. Three years now and only worse. Not trying to scare you. Just to say if you have a chance to get it right from the get-go, you may have better success and faster recovery.

There are still times when I think all of my symptoms would vanish away if I were in a completely clean and toxin-free environment. I often feel like my illness is close to 100% environmentally driven. I could be wrong, but I often think that.