Vertigo, Mold, and MARCoNS

stephanie447 Posts: 404 ✭✭✭
edited December 2021 in General Health

I haven't been around for a while because at the end of September I got hit with a sudden and nasty bout of vertigo...went to the ER...they put me on steroids...they didn't help much...I saw an ENT who did an Epley maneuver...didn't help much...I went back again and they did another Epley and I almost fell in the bathroom on my way out because I turned my head the wrong way and the room started spinning violently. So they took me back in and did a BBQ roll maneuver...didn't help much.

I've learned to not turn my head too much or bend over, but the vertigo is still there but not overly debilitating. The first ENT diagnosed me with "allergies" even though I have tested negative for all normal allergens. I also have fluid in my right mastoid cells according to the hospital MRI.

So I waited about a month - I did take a round of antibiotics in the meantime, which seemed to help a little - and then I had a virtual consultation with a different ENT who thinks I may be having vestibular migraines along with BPPV (ear crystals in the wrong place). But she ordered a full comprehensive balance testing and ear checkup to make sure nothing else is going on. It took weeks for that appointment to be scheduled, which is in about 10 days from now.

Meanwhile, my integrative doctor had me get nasal swab testing done from Microbiology DX. It came up positive for MARCoNS or multiple antibiotic resistant staph (moderate amount) with a strong biofilm 3+ and a small amount of aspergillus niger (mold). My integrative doctor wanted to see what my ENT said, so I sent her the labs and she hasn't gotten back to me all week about it.

The mold is a concern. I have had an odd chronic nervous system issue where I get paresthesias, twitching, and internal tremors especially when I sleep. I've been trying to cure this for four years now after an acute infection started it.

I will note that when I lived in Austin, Texas (when I first got sick four years ago) my apartment had a recurring water leak in the ceiling that was never fully fixed. I thought I might have been exposed to mold, and got mycotoxin (mold toxin) testing done after I moved out.

I was positive for ochratoxin A and gliotoxin. However, the levels had dropped when I retested and so I thought maybe I was done being exposed and moved on to exploring other possible reasons why I might still be having symptoms.

The MARCoNS makes sense, as some antibiotics have helped up to a point...but then there's this low-grade sinusitis I've had, ever since I can remember, that nothing has seemed to kick...though to be honest, I was never diligent about treating it since I thought for a while it was allergies.

In the meantime, I started self-administering Xylitol nasal spray alternating with colloidal silver hydrosol. It seems to be sloowwwwly improving but lingering.

I'm also going to get a spinal tap since my nerves went crazy when this hit (I have ongoing neurological irritation) but it's been postponed until the vertigo calms down more and I've had my ears checked...which is frustrating since maybe the spinal tap would show something.

I have a friend who also recently got vertigo (on the other side of the country) and he says it seems to be going around. It's possible I had covid, but when I finally got a PCR test it was negative, and then they screwed up and didn't get my requested antibodies test done the last time I was at Kaiser getting labs done. So who knows.

All I know is, I want my head to feel normal again. :-(



  • kbmbillups1
    kbmbillups1 Posts: 1,370 ✭✭✭✭✭

    I wish I had some ideas for you. I sure hope one of your doctors figures something out soon! Glad you're back on the forum.

  • RustBeltCowgirl
    RustBeltCowgirl Posts: 1,403 ✭✭✭✭✭

    Welcome back to the forum. BPPV is no fun. Runs in my family.

  • JodieDownUnder
    JodieDownUnder Posts: 1,483 admin

    @stephanie447 welcome back. Sounds like the last couple of months have been horrible for you. Hope you get it sorted out soon.

  • Michelle D
    Michelle D Posts: 1,465 ✭✭✭✭✭

    @stephanie447 it's good to have you back! I'm so sorry to hear what you have been going through. Thank you for sharing all the details. I never realized that a simple water leak could potentially cause such issues. I will pray for a quick recovery for you.

  • Tave
    Tave Posts: 952 ✭✭✭✭✭

    Black mold is a killer. I recently started having strange health problems, and this week found out I had a leak under my kitchen sink. It got fixed yesterday, and now I'm working on drying everything and getting rid of anything molded.

  • shllnzl
    shllnzl Posts: 1,820 ✭✭✭✭✭

    @stephanie447 Sorry to hear about your problems. I will be monitoring your posts to see if they are relevant to me.

    You are tougher than me to do all those doctor visits. I have extreme allergies and on/off vertigo for over a year. My condition is ruled benign. I have found that the drug meclizine keeps me feeling dizzy. Doc Jones' tincture Inner Ear and Balance helps me the most. My ears are either full of fluid or draining.

    On the plus side, today I read a study that says allergies help to protect against Covid.

  • stephanie447
    stephanie447 Posts: 404 ✭✭✭

    Thank you all. I heard back from my ENT today and she wants me to come in so she can examine me and she also wants to do a new CT scan of my sinuses. I had one done in 2019 that found "INDICATION: Chronic sinus drainage and pressure" but nothing extreme. The sinusitis has typically been a bit low-grade and I didn't know about MARCoNS before...trying to treat it was unsuccessful in the past, but it didn't seem urgently important until the vertigo hit! Hopefully I can finally kick it out of my system. We'll see what the ENT says. MARCoNS is an integrative diagnosis and not in mainstream medicine yet.

  • stephanie447
    stephanie447 Posts: 404 ✭✭✭

    Thanks for the tip. I am really surprised at that info about allergies and covid! I wonder why!?

  • marjstratton
    marjstratton Posts: 1,132 ✭✭✭✭

    I hope your vertigo continues to improve. I just got back from a trip to visit family. My husband and I managed to get bad colds, and boy have my ears been stuffed up and hurting. Fortunately, no vertigo but I can't wait for my hearing to clear up. Haven't yet made a garlic oil to put in my ears. If things don't clear up quickly, I will.

  • SuperC
    SuperC Posts: 937 ✭✭✭✭

    A friend of mine has extreme pain in his sinuses and doctors and dentists just give him antibiotics and nasal flushes. I wonder if mold may be a trigger. I wonder if i ought to mention to him to get a CT scan that may display evidence of what he may actually have. @judsoncarroll4 and @torey and @LaurieLovesLearning Are there any foods able to dislodge fungal buildup in the sinus cavities?

  • LaurieLovesLearning
    LaurieLovesLearning Posts: 7,503 admin
    edited December 2021

    @SuperC Mold could easily be the trigger:

    I found some familiar allies to fight just this very issue. Each has similar & their own added suggestions.

  • Torey
    Torey Posts: 5,623 admin
    edited December 2021

    I have not commented on this discussion as yet because I was completely unfamiliar with MARCoNS.

    I have started to do a bit of research and it looks like it is nastier than MRSA (which I am familiar with).

    Berberine has been well studied and is a top choice for treating MRSA infections. So, Oregon Grape Root, Barberry, Goldenseal, Coptis, etc. Berberine also has antifungal properties. So it will help in cases of both fungal or bacterial infection.

    @SuperC @LaurieLovesLearning has posted a couple of good articles.

    Some advice from an aromatherapist might be a good idea as to which essential oils could be useful for a sinus infection and the best ways to administer them.

    @stephanie447 Any advice we are giving here is pretty much a shot in the dark. You seem to have a lot going on that could be contributing to your symptomology.

    You haven't mentioned seeing an Ayurvedic practitioner. Is that an option? Nasya is an interesting treatment for nasal/sinus issues but should be done under the guidance of a practitioner who can recommend specific oils or herbs to use in the treatment.

    I would also suggest that a homeopath could be of assistance. Homeopathy can bring relief when mainstream medicine can't find the cause or a cure.

  • Torey
    Torey Posts: 5,623 admin

    @stephanie447 I just came across this article which may be of some use to you. Its a 4 part series with a link to the next part close to the bottom of each article. Its dealing with Chronic Inflammatory Response Syndrome. There are diagnostic and treatment protocols. Includes the mention of MARCoNS.

  • LaurieLovesLearning
    LaurieLovesLearning Posts: 7,503 admin
    edited December 2021

    @torey You asked, "You haven't mentioned seeing an Ayurvedic practitioner."

    Ah, I thought of this immediately...she sees one every time she looks in a mirror. 😂 You just made that too easy.

  • shllnzl
    shllnzl Posts: 1,820 ✭✭✭✭✭

    @stephanie447 My sister and I have wondered for sometime whether our allergies have kept us from catching a lot of illnesses affecting others. It is very rare for us to catch a cold or the flu. Allergies are the result of an over active immune system, so I guess I should be thankful. (Of course, the allergies keep me feeling crappy for most of the year, but I refuse to live in a bubble or suffer consequences of pharmaceuticals.)

    Something for gardeners to consider: I worked outside for 7 years, mostly alone and never caught a virus.

  • stephanie447
    stephanie447 Posts: 404 ✭✭✭

    So I'd like to report on my progress. I saw the new ENT and also had ear testing done. I had a eustachian tube dysfunction in my right ear. From their clinical perspective, by the time I saw them, it was "mild" but the pressure was something like -42. The ENT knew nothing about xylitol nasal sprays and suggested Flonase (OTC nasal steroid).

    I was not that thrilled about that, but spoke with my integrative doctor and have been doing once daily Flonase and then alternating xylitol/colloidal silver nasal sprays throughout the rest of the day.

    This has definitely been helping break up some long-standing mucus and crapola in my nose and slowly my ear has gotten better.

    By the time I had the CT scan, my sinuses were normal and no fluid was in the mastoid.

    I did have to get another Epley done because the right ear crystals were messed up. They still need to test my horizonal crystals possibly and I have an appointment scheduled for Tuesday but may postpone it. I was also supposed to have a spinal tap this week but postponed that as well. I am living with elderly parents with pre-existing conditions who don't want me bringing home covid right now especially because the hospitals are really overflowing in our area at the moment.

    The integrative doctor might prescribe a BEG spray if the xylitol/colloidal silver wasn't making enough of a dent, but so far so good, and I don't want to take antibiotics again if I don't need too.

  • stephanie447
    stephanie447 Posts: 404 ✭✭✭

    Thanks for the suggestions. I had actually been using some Ayurvedic herbal formulas over the summer as I had taken advantage of a consultation with an Ayurvedic clinic and...well...I think what I had been doing on my own had been better. I got the vertigo after being on those herbs for a while...though could be a coincidence.

    The Ayurvedic approach to a sinus issue would normally by nyasa (oil with herbs in it) as well as neti pot. I wouldn't want to risk oil with a strong bacterial issue when modern alternatives are available. The ENT did recommend sinus irrigation or neti, however. I hate neti pots even though it's helpful, so for me it's easier to use a saline spray or xylitol spray (I use Xclear which contains grapefruit seed extract, and I also have a xylitol spray that has a small amount of eucalyptus in it).

  • stephanie447
    stephanie447 Posts: 404 ✭✭✭

    I've been making some progress with the xylitol and colloidal silver along with generic Flonase but I still have some crap in my nose and my head's still not quite right, so my integrative doctor wants to put me on a stronger nasal spray for a few weeks. It's a custom spray with xylitol, an antibiotic, and an antifungal. I hate having to use drugs but this stuff has been very stubborn so I'm going to give it a shot - wish me luck!