What’s Working For Me Right Now (September 2020)

For the past two years, I’ve written posts about the medications, supplements, and treatments working for me at that time. (Here are the links to the 2018 and 2019 posts). Even though 2020 has been a weird year with COVID running amuck, I’ve been the most stable I’ve ever been and want to continue to share what is working for me (especially since more people are becoming chronically ill due to COVID).

For anyone new, you can read more about my illnesses here.

(Please remember that just because people have the same illness, the symptoms and severity is different based on each person.  Health is very individualized, so what works for me may not work for you and vice versa.)

Scoliosis

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The day after my first cupping/acupuncture session in July 2019

All of 2019 and the beginning of 2020, I was going to the chiropractor every 3 weeks and getting a massage every 4 weeks.  But that all stopped in March 2020. I took 4 months off, but the pain was getting bad and affecting my mental well-being so I started back up again at the end of July 2020. I’ve decided to get adjusted and have my massage on the same day once a month to limit how often I go. But also, my chiropractic office does a really good job of cleaning the equipment and making sure it is safe.

I also started cupping and acupuncture in July 2019. It has really helped with my muscle spasms and pain. It took a while to get used to at first–I had a lot of bruising. But after going regularly, the bruising becomes less and less.

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Cupping bruises in July 2020, after a 4 month break

I was going every 4 weeks at the beginning of 2020 but stopped in March, just like chiro. I started back up at the end of July. The bruising is bad again, but it should be less intense after more regular sessions again.

I also started Epsom salt baths up again during the time off from the chiro, my massages, and cupping/acupuncture. I used to do those a lot when I first got sick, so remembering that is an option is helpful.

Lifestyle modification Frequency Why I use it
Chiropractic adjustments, massages, cupping/acupuncture 1x/4 weeks to maintain the shape of my vertebrae and reduce pain
Epsom salt baths as needed to reduce pain

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Last year, I said I hadn’t really done anything with my ME/CFS. In fact, I remember feeling a bit like an imposter for claiming I had it if there were no actual bloodwork to show it. But that thinking was just the gaslighting from previous doctors getting to my head.

I’m glad I kept the diagnosis in my view, because I was able to get an appointment with the ME/CFS specialist Dr. John Chia August 2019. I was actually quite nervous going into that appointment because I was scared he was going to tell me I didn’t have ME/CFS and I should stop faking it or something (again, effects of gaslighting), but he didn’t question me at all. He listened to my whole story and believes I had an enterovirus (could have been Coxsackie or something else) that spurred a chain reaction for me to develop post-viral ME/CFS, MCAS, and POTS.

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My mom and I at my most recent visit to Dr. Chia in May 2020

We talked through the most effective options for me given the cost and decided on trying Quercetin, Low-Dose Naltrexone (LDN), and Equilibrant (oxymatrine), in that order.

I started Dihydroquercetin first in September 2019 and I am now at 50mg 2x/day. I then added LDN into the mix in November 2019 and am now taking 3mg 1x/day. Lastly, I started Equilibrant in January 2019. However, when I started upping my dose on Equilibrant, I was having more MCAS reactions. So I had to stop that in mid-March 2019 and no longer take it.

Medication Frequency/dosage Why I use it
Dihydroquercetin 50mg 2x/day reduce inflammation and increase exercise tolerance
Low-Dose Naltrexone 3mg 1x/day reduce inflammation, pain, and fatigue

Mast Cell Activation Syndrome (MCAS)

Nothing that much has changed with my MCAS medication regiment. I still take the same drugs and doses, except instead of Ranitidine/Zantac, I switched to Famotidine/Pepcid (20 mg 2x/day) because of the Zantac recall.

The biggest change is, during this quarantine, my doctor who administers Xolair changed. (I still go to my MCAS specialist in LA. I just have a different doctor who gives me Xolair because they are closer.) The doctor I have now is a lot better. She knows what MCAS is and doesn’t question me about it (unlike my last doctor who would always question me about it and even told me I just needed to exercise more–umm, no). This new doctor is even addressing my post-nasal drip and food allergies.

We are trying out different nasal sprays for my nose. Nasacort sort of works and Azelastine dries me out too much, so we’re figuring out a balance.

I had bloodwork done for my food allergies and they all came back negative, so I’ve been doing Food Challenges in the office for the higher-reactive foods. So far, I’m okay with sunflower seeds and eggs! I will do an update next year on if I’m even allergic to any foods anymore. Fingers crossed I’m not!

I’m not as sensitive to fragrances anymore, so the only time I really use my Vogmask now is just going outside because of COVID.

Also, I honestly haven’t used my wheelchair too much this year. I attribute that to becoming more stable but also not doing as many things where I would be out and about for long periods of time and need it. I’ve stayed home more this year because I work from home and because of the quarantine.

I did bring my foldable wheelchair on our family vacation in 2019 though because that’s when we do more than my everyday living. I’ve also used it for going on “walks” and visiting museums.

The newest add to my mobility aids is my Razor electric scooter. It’s not a traditional mobility aid, but it does the trick! It allows me to explore places outside my house without relying on anyone to push me in a wheelchair. Plus, I can go up hills easier and go places faster. I love it!

During the summer of 2019, I was having GI pain and flares, so I have started going to a GI specialist (recommended by my MCAS specialist). My bloodwork and stool sample were normal, so both my GI doctor and MCAS doctor think these symptoms are due to my MCAS.

The interesting thing about these symptoms is that they have dramatically reduced ever since I stopped eating out in March 2020. My GI doctor told me that a bunch of her patients are experiencing this same thing, so my GI tract may just be sensitive to processed food. When I start eating out again, I plan to be diligent in where I go and take note of if my GI symptoms flare up again so I know what places/foods to avoid.

Medication Frequency/dosage Why I use it
Cetirizine (Zyrtec) 10mg 4x/day H1 receptor blocker
Famotidine (Pepcid) 50mg 2x/day H2 receptor blocker
Oral Cromolyn 200mg 4x/day Mast cell stabilizer
Montelukast (Singulair) 10mg 1x/day Leukotriene inhibitor
Omalizumab (Xolair) 300mg 1x/month Mast cell stabilizer
Blink Tears 1-2 drops/eye as needed for burning eyes
Aspirin 81mg as needed to help reduce brain fog
GliadinX 335mg per 800mg of gluten (will only work up to a certain point though) to prevent a reaction from gluten cross-contamination
Benadryl 1-2 tsp as needed to quell big reactions
Lifestyle modification Frequency Why I use it
Vogmask as needed/anytime I go in public for odor/fragrance sensitivity and now, COVID protection
Diet without food sensitivities every day to reduce mast cell degranulation and avoid big reactions
Wheelchair/ Scooter whenever I feel I need it to prevent flare ups and save energy

Postural Orthostatic Tachycardia Syndrome (POTS)

Nothing has really changed with my POTS. I still wear compression socks and drink electrolyte-enhanced water.

Lifestyle modification Frequency/dosage Why I use it
compression stockings 20-30mm Hg stockings everyday to decrease venous pooling and increase venous return to the heart
Fizz tabs 6-12 200mg tabs/day to increase my sodium/fluid intake

Periodic Limb Movement Disorder (PLMD)

No changes here either. Just Gabapentin.

Medications Frequency/dosage Why I use it
Gabapentin 300mg 1x/day inhibit nocturnal muscle contractions

Other ailments

During February 2020, I was having twitching and sensory sensitivity episodes. There was a very big episode in the middle of February that made me decide to go to the neurologist to check things out.

I did an in-office EEG, did a 72-hour at-home EEG, and got a brain MRI. Structurally, everything looks good on the MRI, but the 72-hour EEG was abnormal. Epileptic activity was found in my frontal and temporal lobes, so I am going to start Lamotrigine soon. Over the course of 2 months, I am going to work up to 50mg 2x/day. I haven’t started the medication yet, so I will give an update on that next year.

My neurologist thinks I was either born with this mild focal epilepsy or I acquired it through the viruses I’ve had. He’s hoping that the medication will help with my fatigue because my brain is probably being worn out by constant electrical storms.

I still use my FL-41 tinted glasses, sleep mask, and noise-cancelling earmuffs when I have sensory sensitivity symptoms. But those are happenings less often now. I am better at knowing the warning signs and resting right away so it doesn’t get worse.

I also still live at home with my parents. I’m more independent around the house though, and I have a different job that is more conducive to what my body is capable of handling. I work 20-30 hours per week and spread out my household chores throughout the week so I don’t do too much all at once. I still can’t do everything on my own and need help often, but I’m better at asking for help or just not doing things that aren’t priorities at the moment.


Alright, that’s it for this year. As always, feel free to reach out to me if you have any comments or questions//

-Mel

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