Dizziness/Vertigo Scary Episodes

Hi Disneylove,
I understand that with Lyme and co infections some of us certainly have horrific episodes like you describe and they are hard to figure out.They are scary. I'm so sorry you have to experience this.

I did have strange episodes but with more of a passing out feeling than dizziness, they did go away with continued treatment.

On the other hand is there anything that you added or changed before the onset of these symptoms?

Have you just started the Zhang protocol? if so are you sure of all the side effects and contradictions for the herbals .
Also if you are using a sauna could the heat just be too much for you and causing die off and toxin overload?

Just trying to think of different things that could bring it on.

Please be careful and I hope this turns around soon for you. Jo

DL-The dizziness and the difficulty handling the heat are both due to your Babesia.

It would be helpful if you list what you are taking as most of us are not familiar with what the Zhang protocol consists of. Are there any detox products in the protocol? Are you taking a binder like activated charcoal or chlorella? Binders help pull the toxins from the die off out of your system. Without a binder the toxins have a more difficult time clearing your system and make you feel worse. Hard to imagine feeling worse than you already do. It's one of the reason's pushing fluids is so important. Have you done standard blood work to make sure your liver and kidneys are handling the die off ok? Mine have had a hard time off and on and wow that can really make you feel awful.

In terms of your episodes-have you tried to track any connection to 1)eating dairy or anything else that might increase inflammation 2) time frame from when you take your herbs 3) stress-it's really hard on our overwhelmed systems 3) if you are female-your hormone pattern 4) environment- mold, allergies, hotter days etc

Just throwing things out there to get this rolling.

Another thing that keeps happening is my eyes become too focused, almost like I'm staring into space and can't stop. Very strange and a relatively new symptom for me.

I had some small bouts of vertigo recently. My ND muscle tested me and found that it was from Candida overgrowth in my inner ear. Since I started trek the Candida, I haven't had any more vertigo. I hope you find some answers!

Astroman - My TSH was 1.80. My doctor didn't test my Free T3 or T4 for some reason. My internist isn't very Lyme literate, he never understands why I request specific blood tests.

jrpsf - There's definitely mold in my house. I moved into a rental at the end of June, and had a mold test done after my dizziness started in July. The mold guy said there were low levels of mold in the house, but he said there weren't dangerously high. Do you think that low levels could cause these symptoms?

There's been other issues at this house (absolutely horrible Landlord), so my Mom and I are moving out and into another place on September 1.

It's very humid where I am in Central Florida.

To Disneylove,
I've just been diagnosed with Acute Labyrinthitis....my story, in case it helps: I have currently been experiencing vertigo and dizziness for 4 weeks now. Mine began with a severe attack when I went to bed with everything spinning - the room, the bed, me, you name it. Like being on a wild amusement ride but you can't get off. I've had BPPV (Benign Positional Vertigo) before which felt similar but that stops after a minute or so. This episode wouldn't stop and I began vomiting (sorry for that detail) and I was on this wild ride for hours until I had nothing left to throw up and had to spend the rest of the night sitting up in a chair and holding on to the arms for dear life. Also experiencing ear aches sometimes, neck ache/ fullness and ear fullness and some sharp, ice-pick pains on my head at times. Foggy thinking while I'm dizzy, of course.

I visited the E.R. and CT scan was normal (ugh, the radiation...tried to get an MRI instead but they didn't have one). They did an Epley maneuver at my request but that didn't solve it as it had when I had the Benign Vertigo in the past. Continued up to now with dizziness and shorter bouts of vertigo any time I move in a certain way - look down, bend down, tilt my head etc. Visited my dear LLMD who also did an Epley and found no signs of ear infection but gave me rx for Valium which is the preferred drug for vertigo. I've taken it a few times, but even 1/2 tablet makes me very drowsy so I can get by without it. It does help with the dizziness, fyi.

Today I saw an ENT who is in my insurance network. Hearing test was normal, no fluid detected in my ears. As soon as I told him my symptoms he said that I have "Acute Labyrinthitis". This is basically an inflammation of the inner ear caused by either a virus or a bacteria and it can last anywhere from 2 to 12 weeks. He said it causes damage to the inner ear which is why the vertigo lasts and dizziness continues, but that in most cases it is temporary and will go away in matter of weeks. I'm on week 4. I sure hope he's right. In any case, my vertigo attacks are much shorter now and the dizziness subsides after an hour or two, so maybe I'm getting better.

I asked him if the bacteria could be from the Lyme disease to which he replied yes, but there is no way to know for sure. One thing that he told me regarding the ear fullness and neck and head pains was odd to me - he said this was caused by me clenching my teeth at night. I'm not sure if I do that, but I'll have to try and notice if this is true. My LLMD however, said that the neck tingling and pain is definitely Lyme which makes more sense to me. Oh - and the ENT that I saw today did not seem to comprehend that Lyme continues to be active even after a dose of antibiotics, so I didn't try to educate him on that, lol. He also gave me rx for Valium to take at night and an ear patch for the vertigo to wear continually. I hate taking medication, especially when it's not a cure, just a temporary relief, but I'll give this a try. Getting a little desperate.

To Nosila: I am very curious about your response regarding the overgrowth of Candida in your inner ear. How did you doctor know that? Is there a test for this or was he going on your symptoms? I'd be very interested to have the test done. That theory would make sense to me, too. I had a Candida test done a few years ago that I sent in to a lab but it was general and I didn't have much growth at the time.

So, Disneylove, although your symptoms are a little different than mine you might want to look into Labyrinthitis, too. I've read in some of the other Healing Well forums that there are those who experience these symptoms for years!! Lord, I hope not!! Best of luck. Can you please keep us posted?

DisneyLove -

Such GREAT responses!! I just love that so many of our members here are SO BRIGHT. I'm also glad that people have such excellent experience to draw from although I'm also sad about this too.

All of the points I was going to make were already covered!

I was experiencing seizures, vertigo there for awhile. I saw a Lyme-friendly neurologist and he ran the gamut of tests that showed no tumors, floating pieces, (additional) hearing damage, or anything else that could cause what was happening. He suggested that he felt most Lyme neuropathy is caused by inflammation, and anti-inflammatories have always helped me (Japanese Knotweed, turmeric).

I TOTALLY agree w/ Nosila about the yeast/fungal overgrowth in the inner ear. It is very likely that this was THE PRIMARY cause of my seizures and vertigo, and also started causing inflammation. The neurologist was quite surprised when I suggested this was my diagnosis--he'd never considered that but he liked the possibility. And, of course, when I returned to my high-powered antifungal protocol, I made the most progress with those sx.

In fact, making progress w/ the antifungal protocol is what made me realize how many yeast/fungal sx I had that NO ONE could solve--not even my LLMD. Most MDs are just clueless about yeast/fungus. I would have crackling in my ear, stabbing pain, muffled sounds, watery leakage, all intermittent and in addition to the vertigo and seizures. I also had stabbing eye pain, crustiness when I woke up, floaters and blurried vision. All improved or disappeared altogether with antifungal protocol.

Yeast/fungal overgrowth can start in the gut and grow up the throat, into the head/hears/eyes/mouth/sinuses. Perhaps the most damage done by y/f overgrowth is to your gut and damage can reduce immune function, which is a killer for Lyme tx. So it's really important to get it under control.

The heat can exacerbate y/f symptoms AND also cause die off and symptoms from that. I now realize the y/f issues were the primary reasons I was unable to tolerate any heat - either from the weather, saunas, hot showers or internally like from workouts or fevers. And this was why heat frequently made me faint.

The neurotoxins (one is ethanol!) released by the y/f are also released in die off but die off release can be in large volumes--these toxins can overwhelm your body and heart and brain so fast. After my first dose of ketoconazole I nearly fainted, which is a warning and you're supposed to stop taking it, which I didn't know at the time. I kept taking it, was fine. But what I think happened was that the initial die off just overwhelmed my heart.

Here is more info on y/f - let us know if you have other q's
Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

The other thing I suggest is to start back on the cholestyramine but at very very very low doses... Literally just sprinkle a tiny bit in a lot of water and slowly work your way to larger doses. With mold, yeast/fungal overgrowth - there is probably no better way to manage symptoms by removing the cause. But CSM is so powerful and also removes other toxins so it's so critical to go very slowly and gently with it.

And I would be careful with chlorella - it's more accurately described as a chelator. It does function in a binding capacity but more accurately it chelates or leaches heavy metals to remove them. If you suspect you might have heavy metals (which is very common with y/f overgrowth) you might avoid chlorella for now. You can chelate too quickly and if all the hvy mtls aren't removed immediately, they can be reabsorbed into the body. It's tough to do with significant amounts so I would avoid chlorella for now and stick with the CSM.

-p

Interesting video The Warrior -

My neuro tested for "loose crystals" by strapping me into this strange machine that literally tossed me all around and upside in different angles. There was a cage around my head with a camera positioned to view my eyes and I was instructed to keep my eyes open because they were looking for the twitching movement illustrated in your video, which is caused by the loose crystals.

unfortunately, I didn't have any loose crystals but the remedy in the video is good to know for people who might have a simpler problem like that.

-p

It's so helpful to read everyone's input. To DISNEYLOVE, how are you doing? Did the vertigo go away by chance?

I still have the dizziness although it's worse in the morning and seems to dissipate as the day goes on - I feel almost back to normal by afternoon/evening most days. My ENT's theory of a virus/bacteria is possible because my episodes aren't as bad or as frequent as they were weeks ago and it could be healing. But I'm also inclined to agree with NOSILA's doctor and PIROUETTE about the Candida overgrowth theory, so I've also just restarted taking Cholestyramine (2 tblsp/day), oregano oil and ramping up on probiotics to see if this helps. Also began taking Serrapeptase (only 1 capsule/day for now) because of what I've read about it's anti-inflammatory benefits and it's ability to break up the cysts formed by Lyme Bacteria. Sorry that I don't know the technical terms. It's only been a few days, but I'm going to see if this helps.

To THE WARRIOR: Thanks for sharing. Good info - this is the Epley maneuver that I wrote about in my prior post. It helps and cures BPPV - Benign Paroxysmal Position Vertigo which is caused by a crystal dislodged and floating in the ear canal. The maneuver basically guides the crystal back into place and ends the vertigo. I've had BPPV about 3 or 4 times before and the Epley maneuvers really do work! The spells went away for a long time until something happens to dislodge the crystal and they come back. But those BPPV spells only last about 1 minute when you turn your head a certain way. They're also very scary because you feel like gravity is pulling you down and everything is spinning. But again, they only last about a minute or two at the most in general.

To PIROUETTE: Thank you for your great input, and for the reference to your original post about Yeast/Candida - very informative.

I do think this is Lyme related - not only do I feel "Lymey" (if you know what I mean), but it's not coincidence when I search "vertigo" in this forum and find so many posts linked to Lyme patients.

Thank you all. Would love to know if DISNEYLOVE has found any answers and is improving!