I've Been Misdiagnosed
Doctors just don't have time to reason things out these days. Frustrating.
Hey everyone,
I wanted to give you an update since my recent dizzy/syncope spell.
TDLR (Too Long Didn’t Read): I suspect I have a mild-ish and chronic form of mastoiditis along with a leaky gut that is resulting in mast cell activation. But to get this confirmed by mainstream doctors? Good luck.
My primary care physician is either out for an extended sabbatical or quit entirely, so I had to see a new doctor. I picked an osteopath in hopes she’d be more of a functional medicine doctor. I saw her a few weeks ago, but unfortunately, she didn't take a holistic approach as I had hoped.
One issue with having a diagnosis like POTS (Postural Orthostatic Tachycardia Syndrome) is that fainting episodes are often attributed to it. However, my POTS is not typical; I can stand and exercise without issues. I’ve never actually fainted. During my visit, an orthostatic intolerance test showed my blood pressure was fine across all levels, though I did have consistent mild tachycardia. This suggested it wasn’t POTS, as the nurse confirmed.
My EKG was normal, except for one borderline abnormal reading that the doctor dismissed. The internal medicine doctor/osteopath seemed overwhelmed and couldn't keep up with my six-year health history. I explained my occasional dizzy/syncope spells and persistent inflammatory symptoms, and hoped she would be thorough, but she just kept circling back to POTS.
I mentioned that an integrative doctor suspected mast cell activation syndrome, and I wanted tests to see if we could confirm this. After some debate - she wanted an allergist to make the call on mast cell tests - I finally convinced her to order tests for histamine and tryptase levels, but she was unfamiliar with prostaglandins and couldn’t find a way to test them.
I also sought a referral to a gastroenterologist for my GI symptoms, but the osteopath only prescribed famotidine for reflux. This was frustrating as my initial issues stemmed from a gut infection. However, she did order an H. Pylori test.
Famotidine is an H2 antihistamine, and since I may be dealing with mast cell aggravation, I decided to get some to perhaps try…even though I hate taking Western drugs…I used famotidine for many months if not a year or more after I first got sick due to acute GERD. (I already take a Claritin daily, which is an H1 antihistamine.)
During the blood draw, the phlebotomist noted my blood was thick and slow, possibly due to dehydration, though my urine appeared normal. Thick blood might contribute to dizziness, but why it was thick? Who knows and who cares, because even though I asked the phlebotomist, she had no way of noting this in my chart. Here’s a possibly important clue about what’s going on, but the doctors at Kaiser are too overwhelmed and stressed to play Dr. House.
At any rate, my test results came back mostly normal, except for a slightly elevated liver enzyme alkaline phosphatase (ALP). Another doctor emailed and told me to get a follow-up fasting blood test in two weeks. While serious conditions like liver cancer and bone disorders appeared in my research, inflammatory bowel disease might also cause ALP to increase.
My tryptase levels were normal, but that doesn’t mean much as they can drop dramatically and rapidly after an initial mast cell attack. My histamine was 1.5 - which on Kaiser’s labs was “normal” but according to integrative doctors online, 1.5 is high and potentially indicative of histamine intolerance. I was on Claritin and taking daily quercetin when I had that result too.
Gut health likely contributing…a leaky gut releasing unwanted substances into my bloodstream causing histamine to spike. Yes, I’ve tried stopping various foods to see if there are any triggers…the only thing for sure is MSG.
Additionally, a past MRI showed a small effusion (fluid) in my right mastoid, which could indicate an infection. But nobody at Kaiser took this seriously. A year or so ago, an integrative doctor had prescribed an antibiotic/antifungal nasal spray that helped, but if that’s the issue, it was not completely cleared and apparently my dental cleaning at the end of April stirred things up again.
A spinal tap I had in 2022 showed systemic inflammation in the form of dual oligoclonal bands in spinal fluid and blood serum. Yet another clue that doctors at Kaiser shrugged off.
I did my second fasting blood test yesterday and ALP was still a little over the top limit. Not by much, but it hadn’t budged in a few weeks. I have been instructed by a note from Kaiser to follow up with my primary care physician.
Yesterday I also had two more spells…aggravated by the blood draw? Who knows. Other than adding some aspirin1 to my regimen I had not changed my supplements/herbs between the liver tests. There is a possibility my herbs may be elevating the liver enzymes, but I’m not taking a high dose or even a lot of herbs, so I doubt that.
On Monday, I have a phone appointment with my neurologist to discuss potential neurological aspects and request an MRI for my brain, which he wanted me to do every few years anyway as I have benign lesions that need monitoring. I’ll also ask for them to check my cervical spine as well. I’ve also set up a video call with my ENT to really press her on the mastoiditis. She thought I might just be having vestibular migraines but systemic inflammation seems to indicate more than that.
I rarely see my integrative doctor due to how expensive he has become ($175 for a 20-minute consultation)…and he’s backlogged by months…and while he’s pretty good I was disappointed he was pushing the covid vaccines. I’m going to set up an appointment with him regardless, but he probably won’t be available for six months.
If you know any good online functional medicine/integrative doctors, let me know. I need someone who can prescribe in Maryland.
What I Think Is Going On
I talked to my mom yesterday, who used to work as a nurse. She said my symptoms of “feeling like I’m on a boat” - which is pretty much daily - sounded like an inner ear infection she had many years ago that lasted months. My uncle also had mastoiditis when he was a kid and needed surgery.
She suggested I have an inner ear thing going on. (BTW, I don’t have just “ear crystals” that need fixing - see this footnote2.) I’ve mentioned this to Kaiser doctors, who don’t see fluid in my ear so think it’s OK. But I told two doctors there recently that my skull around my ears feels lumpy and a little swollen…and they kind of shrugged that off too after a quick and shallow palpation of my scalp. HELLO!! Swelling around the ears with fluid in your mastoid…WTF is wrong with these people. I also have, occasional mild tinnitus, and sometimes popping in the right ear, or mild ear pain, and mild headaches, usually on the right side.
So I popped some clues into ChatGPT and got the following:
Given the symptoms and findings:
1. Slightly elevated ALP levels
2. Normal other liver values
3. Vestibular issues
4. Slight effusion in the right mastoid seen on MRIA potential diagnosis could involve the following considerations:
Mastoiditis
Mastoiditis is an infection or inflammation of the mastoid bone, which can lead to effusion (fluid build-up) in the mastoid air cells. This condition can impact the nearby structures of the inner ear, potentially causing vestibular symptoms such as dizziness or balance issues.
- Symptoms: Pain, swelling, redness behind the ear, fever, hearing loss, and vertigo.
- Diagnosis: MRI or CT scan can show effusion and inflammation.
- Treatment: Antibiotics, drainage procedures, or surgery in severe cases.
Otitis Media with Effusion (OME)
This condition involves fluid accumulation in the middle ear without an active infection, which can also extend to the mastoid area.
- Symptoms: Hearing loss, a feeling of fullness in the ear, balance problems.
- Diagnosis: Otoscopic examination, tympanometry.
- Treatment: Observation, nasal decongestants, or surgical intervention like myringotomy with tube insertion.
Cholesteatoma
A cholesteatoma is an abnormal skin growth in the middle ear behind the eardrum that can extend into the mastoid process. It can cause chronic ear infections and vestibular symptoms.
- Symptoms: Chronic ear discharge, hearing loss, dizziness.
- Diagnosis: Otoscopic examination, imaging studies.
- Treatment: Surgical removal.
Bone Turnover or Metabolic Bone Disease
Slightly elevated ALP levels might relate to increased bone turnover or a mild metabolic bone disease, which could indirectly affect the inner ear and balance through inflammation or pressure changes.
Next Steps
1. ENT Specialist Consultation: To evaluate the ear-related symptoms and MRI findings in detail.
2. Further Imaging: If necessary, more specific imaging studies could help pinpoint the exact cause of the effusion and vestibular issues.
3. Additional Blood Tests: To rule out any underlying conditions affecting bone metabolism or other systemic issues.
4. Audiological Evaluation: Comprehensive hearing tests to assess the impact on auditory function.
Consult with a healthcare provider to discuss these possibilities and determine a tailored approach to further investigation and management.
And here’s another clue, not that doctors would bother to ask: I used to swim a lot and I was prone to getting water stuck in my right ear. I also surfed. Eventually I did end up using ear plugs. But I would need to use swim ear drops to try to clear stuff, as well as turn over to my right side and pound my hand covering my ear to drain everything.
And the bones in my right ear rattle with low noises.
A few years ago, I also tested positive for MARCoNS in my nasal passages. (MARCoNS is an abbreviation for Multiple Antibiotic Resistant Coagulase Negative Staphylococci. It refers to a type of bacteria that can be difficult to treat because it is resistant to many common antibiotics.)
Do mainstream doctors bother to find these things out? They don’t have the time.
At any rate, I wanted to wait until I had the second liver test to start the famotidine, to see if it helps my symptoms. It can perhaps help reduce gut inflammation and dry up some of that fluid that’s probably in my inner ear/mastoid. I just took some this morning.
I’m doing a home grown antimicrobial nasal spray regimen for now - xylitol nasal spray alternating with colloidal silver hydrosol. When I finally speak to my integrative doctor I’ll get another nasal spray prescription.
Unfortunately, I think I may need more oral or even IV antibiotics, but they are hard on the body and oral antibiotics mess the gut up more. It’s possible high-dose herbs could knock the chronic infection out, but I am concerned about stressing the liver and my gut with a ton of herbs. Sometimes, I hate to say it, a drug works more efficiently and cleanly than herbs, but this is only for the more safe and benign drugs.
I have had a floxxing reaction to Avalox, which is a fluoroquinolone (like Cipro), so I have to be very careful with antibiotics. No Cipro or Levaquin for me!
I’ll also follow up with a Kaiser doctor to do whatever standard tests they offer for elevated ALP just to rule out other things going on. The thing is, we can’t assume that just because there may be an ear infection that the rest of the body is working perfectly. Right?
If you have read this far, thanks for your support.
Quick Announcement
A quick announcement, which I’ll also post separately. I had starting to write a book about dealing with my health issues a few years ago, but got blocked on it due to my personal frustration and so…I’ve decided to work on a new book, the theme of which is related to everything I wrote here today…about the Western medicine mindset and how it blocks doctors from truly helping people much of the time.
I’ll be writing it bit by bit and posting the drafts in Substack here for paid subscribers starting next week. So please upgrade if you haven’t already…I have slightly less than 60 paid subscribers and can’t seem to break through that ceiling.
Also, if you are able to donate something for the Tip Jar, that would help me out a lot as this health stuff reduces my ability to earn a living wage…Substack is making me around $2,500 PER YEAR in a good year. I get free healthcare through the state of Maryland but it does not cover integrative doctors, acupuncturists, and herbs, so there’s a lot of out of pocket I end up paying.
Thank you!
Stephanie
I had been taking aspirin regularly to help reduce prostaglandins, butI had gotten off of it a few months ago to see if I didn’t need it. When my blood showed up as thick and slow, I started up the aspirin again as it is a mild blood thinner. My blood appeared normal at my second blood draw.
Via Mixtral AI:
BPPV, or Benign Paroxysmal Positional Vertigo, is a condition of the inner ear that affects balance and causes feelings of spinning or vertigo. It occurs when small calcium crystals, called otoconia, break free and float inside the inner ear's semicircular canals, disrupting the normal fluid movement that helps us maintain our balance and spatial orientation.
BPPV is usually triggered by specific changes in the position of your head, such as turning over in bed, looking up or down, or tilting your head back during certain activities like washing your hair or reaching for something on a high shelf. The spinning sensations associated with BPPV can be quite distressing, but the condition is not typically dangerous and can often be managed with simple exercises and maneuvers.
I have had BPPV in conjunction with my other symptoms, but it is NOT the main thing going on nor do I usually have it. The last time I saw an audiologist, last year maybe?, I went in for feeling like I was on a boat much of the time. I was fully tested and I did not have BPPV - my crystals were fine. This does not mean that my crystals aren’t sometimes impacted by the inflammation - they can get out of whack too, but I have more than just BPPV. I know people who’ve had BPPV and since they were easily cured think I can be too, but it’s not just that.
Hi Stephanie, When I was experiencing random dizziness I stumbled upon an article on The Medium, since removed. I re-found it here: https://www.tim-rees.com/post/my-life-changing-hearing-loss-reversed-with-dietary-change
What? Oxalates? Hmmm...
This was not even on my radar, but I thought, 'What can it hurt to lower my oxalates, I've tried every other diet?' And the adventure began. I stumbled around -don't go too low too fast = trouble! I ended up joining the low oxalate group on Facebook where there are a lot of people sharing stories because the medical cabal know very little about this issue. Sally Norton has written a book you should read, Toxic Superfoods. It is well researched and eye-opening! If you walk down this road, you become your own special experiment. But like a lot of people on this journey I have had many wins. I'm no longer dizzy, which was huge because that is so disabling and one of the first things to resolve of my laundry list of problems. Many other things have gotten much better and yet I still have a long way to go.
Here's a quick article to give you an idea of the many things that can be affected that seem like a multitude of problems that are unrelated to each other, but begin to resolve with a low-ox diet. https://sallyknorton.com/oxalate-science/oxalate-basics/
I wish you the best. 🥰
Hi Stephanie, I can relate...and I am sorry that you have to experience all of this - it takes great resilience to keep moving forward with these doctors, specialists, and lab tests. I have traveled this path and I understand the struggle. After bouncing back and forth from specialist to specialist, I finally saw a neuroimmunologist at a university to get a somewhat correct diagnosis. I have been diagnosed with MCAS, POTS, ME/CFS with chronic reactivating EBV. MCAS is a very difficult diagnosis to make because most of us with MCAS simply cannot be off of H1 and H2 antihistamines for 5 days prior to lab tests - which is required by most allergists (if you can find one that does treat MCAS - and even so, you would think that they would know the dangers of going off antihistamines for people who do have MCAS - in my case, I slowly slip into full blown anaphylaxis). The neuroimmunologist had me stay on H1 antihistamines for the lab work, and since my histamine was still out of range along with my description of symptoms, she made a clinical diagnosis of MCAS. Interestingly enough, last year I also had chronic gut infections and inflammation. After several months of antibiotics and antifungals, I finally saw a gastro who diagnosed my GI symptoms as mast cell degranulation which is a similar mast cell issue that can infiltrate the GI tract. He prescribed a medication that had a $900 copayment. I had to take a different route of treatment (actually a few different routes), and with the Grace of God, I have it under control now. I still have a lot of health issues due to all of these conditions, but getting the digestive under control was a huge step in feeling better. I am wishing you the best of luck - stay strong and steadfast!