Hypothalamic Dysfunction

Due to chronic inflammation from my Lyme disease and co-infections, I’ve been experiencing hypothalamic dysfunction. The hypothalamus is a region of the brain that is involved in controlling functions in the body such as appetite, body temperature, emotions, behavior, memory, thirst, sex drive, and the circadian rhythm. I have been experiencing difficulties in all of these areas.

One of my stranger symptoms related to the hypothalamus is gelastic (laughing) and dacrystic (crying) seizures. Recently, I’ve started having a problem where if I laugh or smile too much, I will start having a dacrystic seizure. It definitely makes trying to make the most out of life challenging.

I’ve been trying to get my brain inflammation under control. I’ve been taking liposomal glutathione more frequently, trying to work up to a daily dose. I also have an arsenal of herbal teas that I like to incorporate in my routine, at least when I remember to.

I seem to be having a MCAD flare this week also, which in turn increases inflammation in the body. Ibuprofen tends to help tremendously with periods of increased inflammation. I also take fish oil and turmeric on a daily basis to help with this.

I’m just trying to keep my symptoms under control until I see my Lyme doctor again in February.


New Diagnosis

My doctor has recently diagnosed me with mast cell activation disorder (MCAD). I believe I have a relatively mild case, meaning I haven’t experienced full blown anaphylaxis. Still, I’ve been struggling to get my symptoms under control.

I started taking cromolyn sodium, a mast cell stabilizer, in December. When I started taking it, I had a massive symptom flare up. Terrible itching, dizziness, and diarrhea, for the most part. So I couldn’t even take the full dose at first, because it made me feel like I was dying.

Now it’s January, and I’m finally at the full dose of cromolyn. I’m still waiting for the most recent flare to calm down. Hopefully I’ll start feeling better. There are other medications we could add in, but I’m hoping I won’t need them. My doctor mentioned ketotifen, but I wanted to hold off on that, at least until our next appointment.

Besides my new diagnosis, I’ve also been having really bad insomnia again. I took clonazepam every night for 3 weeks straight, and then it suddenly stopped working. I’m completely tolerant to that dosage now. I’ve been taking lorazepam instead, but only every other night or so. I thought I would have developed a cross-tolerance to that medication, but I hadn’t.

My doctor also sold me a new supplement called “200 mg of Zen”. It’s been helping somewhat with initially falling asleep at night, but I still have trouble getting back to sleep. I also have found out that it doesn’t work if I don’t take it on an empty stomach.

In other news, I was down to 233.6 lbs at my most recent weigh in. So at least that’s going well. I tried on a leather jacket I’ve had in my closet and never worn yet. I could kind of squeeze into it, which was exciting.

That’s pretty much every thing that’s happened since my last update. I’m hopeful that this year will bring even more progress.

Forward, and Back Again

For the past month I have been getting sicker again. Not necessarily in the sense that I’m not making progress with my Lyme, but that a lot of things are going on.

About a month ago, I took some CBD oil that I thought would be harmless, since I hadn’t previously had any reaction to it. This time I did. I got extremely dizzy, and was slurring my words. I couldn’t balance myself to walk. I have been having recurrent dizzy spells since then, some severe, some not so much.

At the same time, I had been having a drastic increase in my allergy symptoms. Itching, flushing, hives, nasal congestion, etc.

My POTS related symptoms have been getting bad too. For a while, I wasn’t having much of a problem with them. I’ve been having a lot more trouble with my blood pressure and heart rate doing weird things. I’ve nearly fainted a few times. Though I don’t have an official diagnosis of POTS or dysautomia, I think it’s pretty clear what’s going on.

I had blood drawn today to test for mast cell activation disorder, to check my thyroid function, to check my metabolic functioning, and possibly receive an official diagnosis of diabetes insipidus. It will be at least a week before I get the results back, so in the mean time I’ll be trying to manage my symptoms with OTC medications.

MTHFR Results

I got the results back like two weeks ago but completely forgot to post them…

I have a heterozygous C677T MTHFR mutation. So yes, I have a mutation, but it’s not severe.

Though I would like to know exactly how much of an impact it has on my detoxification. Because I never feel like I can detox enough. Every time I up my Vital Plan dose or some other antimicrobial remedy, I herx terribly and can’t clear out the extra toxins for days.

I would like to hear from anyone who has a MTHFR mutation and your experiences with it.

The Healing Power of Keto

I’ve been on a ketogenic diet for a week now, and I must say, the results are already impressive.

Before keto: I was starting to see improvements in seizure activity. I had very poor sleep quality. I couldn’t sleep through the night. My weight had dropped some earlier this month, I believe, because of the strain on my body to detox while herxing for so long. I was having constipation and bloating.

Now, I haven’t had a major seizure for over a week. My energy has improved. My sleep quality has improved dramatically, I go to bed around 8pm and wake up when the sun rises. I’ve lost 4lbs just since September 21st. My BM’s are now regular, and no bloating. Also, my mood has been a lot better. I’ve barely cried in a week! And I don’t want to die!!!

Though I have had an increase in urination and thirst, mainly because the body dumps water and electrolytes during weight loss.

I have also been battling the ‘keto flu’, which is caused by electrolytes imbalances during the first phase of a ketogenic diet. I have been consuming tons of bone broth to combat it. But it’s manageable. At least I don’t have the actual flu. That would probably kill me.

I’m currently waiting for the results of my MTHFR test. My doctor had to send it out of state, so it’s taking quite a while. But I’ll share the results when I get them.

My walking has improved dramatically since my last post. I’m not using my wheelchair at all now. It felt weird to stand at first, but I’m adjusted to it now. I still need to work on my gait though, apparently I sway side to side when I walk…

Hopefully I’ll be back with an update soon. See you then!

A miracle?

Yesterday, a miracle occurred. I was able to walk. It was only a few steps, but I did it. I’ve been taking Lion’s Mane for about two weeks now. Lion’s Mane is known for its ability to repair nerves. I think that’s why I was able to walk. That and the physical therapy I’ve been doing for a few weeks now. I’ve still got a long way to go to get my strength back, but at least something is finally improving instead of getting worse.

Next, I’m hoping to see some improvement in my hyperacusis, which is causing by nerve damage in the auditory nerves. And it would be great if I could stop getting shooting pains all over my body.

I don’t know when I’ll remember to update next, but hopefully I’ll be coming back with more good news!

Vital Plan: Month 1

It’s been a rough month. Maybe the roughest month I’ve had since I’ve become ill. It’s hard to say.

I started on the Vital Plan Phase 1 diet and supplement protocol about a month ago. The first week was fine. The second week turned into a 7 day herx from hell. Night sweats, shaking, insomnia, anxiety, panic attacks, and complete sensory overload resulted from the amount of toxins circulating my bloodstream during that week. I honestly don’t know how I survived it without completely losing my mind. It’s over now, but I’m terrified it might happen again.

I went off the supplements for a few days, letting my body catch up with detoxing. This past week or so I’ve been taking only 1/4 capsule of each VP formula, once per day. I just increased that to 1/2 capsule today.

I decided to weigh myself the other day, and to my surprise I had lost 5 pounds. Other than that, I haven’t seen any improvements in my health this month. I plan to talk to my doctor in a couple of weeks about MTHFR and related gene mutations, and maybe liver function tests. I feel like my body isn’t detoxing as efficiently as it’s supposed to, despite all the supplements I have been taking to help it. Charcoal, burbur pinella, sealantro, detox tea, Alka Seltzer gold, lemon water, far infrared sauna, castor oil packs…. the benefit of each is marginal at best.

Recently I started doing physical therapy to try to regain some of my lost strength, and hopefully be able to walk again. I’ve been putting in my best effort, but it’s been hard with all the pain and fatigue. The day before yesterday I had a particularly violent seizure, and I injured myself. My wrist is bruised and swollen, and it doesn’t make exercising any fun. I’ve been using ice on it.

Despite it all, I’m still alive, and am doing everything in my power to become healthy. I hope you can hang in there too.