Warning: I'm in the midst of some serious PMDD coupled with a neuro-herx, so anything I say in this post may reflect that.
The days since I returned from my vacation have been marked by herxes and much stress, the combination of which have only intensified the symptoms of my already-existent, Lyme-induced autism. Recently, I've had more and more days of not being able to deal with human interaction, because my brain can't connect with others, feels distant, closed off, introverted, awkward and anxious when I'm around others.
The downside to this, other than the obvious as stated above, is that it's hard on my friends, who are mostly the sensitive types. That's the type of people I attracted into my life over the years, because I was always one of them.
But due to the effects of all the supplements I take, and the die-off they produce, and the brain inflammation and other physiological changes to my brain and its hormones and chemicals, I'm not her anymore. I don't want to socialize or develop bonds because I can't. It feels foreign. It feels unnatural. It feels awkward. And it feels like my emotions are numbed, because I can't really feel much anymore. So I avoid people, and especially parties where people turn up in droves, but even one-on-one interactions with those who know me best, because I'm not even comfortable around my closest friends anymore. It's sad.
Still, I'm "bonding" with other Lymies through our shared experiences. It helps me so much to hear others explain the scientific reasons for these changes, and to hear I'm not the only one with these autistic symptoms. It's also easier to connect with the Lyme network since it's online, not face-to-face, because it's the more personal (and in-person) interactions that are the hardest.
In Myers-Briggs lingo, I've gone from an ENFJ to sometimes-INFJ and other-times-INTJ. My results go back and forth between the latter two types, but no more ENFJ. (Earlier this month, I felt more like an ENFJ again when I stopped all my meds to travel.)
Today was a particularly challenging day. As I mentioned in my opening line, I'm plagued with some pretty nasty PMDD at the moment, but I'm also feeling autistic and neurologically inflamed (i.e. herxing from my anti-microbials and anti-parasitics). Three disastrous situations overlapping--uh oh.
Well, today I spent several hours rehearsing with my band for tomorrow's studio recording session. For those of you who don't know, I sing and compose music for a five-piece alt-rock/folk/pop band in San Mateo, California. We've been meeting once or twice a week for a total of two hours per session since before I started Lyme treatment. So, generally this equals about two to four hours of practicing music per week. It's as much as I can handle (and kind of points to my inability to work full-time, since, well, how could I hold a job when I can only focus for two-hour periods before I mentally and physically crash?)
My bandmates can attest to the above. They've seen how, at many--if not most--of our sessions this year, I've become completely spaced and fatigued by the end of our sessions.
Anyway, today we brought in a sixth band member, a cellist we hired to record with us tomorrow. We taught her the parts and went through them many times. Before we were done, I felt the pangs of neurological swelling kick in, but I pushed through. My singing became quiet, unstable, hoarse, and somewhat off pitch. Luckily I sunk back into the couch (God forbid I have to stand at practice!)
Then the anxiety kicked in. Oh, the lovely anxiety. And when I get what's classified as "social anxiety", I only become more talkative, so I'm sure I started rambling nonsensically in between songs. By the time everyone was wrapping up their gear to go, my brain fog had kicked in so bad that I couldn't concentrate or hold a thought. All my brain cells felt dead. I couldn't get myself off the couch.
Luckily, there are certain things that help in these situations: Neuro Anti-tox, chlorella, Neurotrans, and chloroxygen. (All of these can be googled if you're curious. I'm too tired to explain what they do.) So I came home as fast as I could so I could take my meds!
Tomorrow my band is in the recording studio for ten hours. Add in the commute time, and it's going to be an almost-12-hour day, which is almost unimaginable for me in the state I'm in. I honestly don't know how I'm going to get through it, but at least I won't be performing the majority of the time--rather, listening to others lay down tracks. The plan is to hit my bed early tonight, perhaps take a sleeping pill to fight always-problematic insomnia, and take my supporting meds with me to the studio tomorrow.
Thanks, everyone, for reading my blog. Goodnight!
Sunday, July 31, 2011
Saturday, July 23, 2011
Back from Wonderful Vacation!
Hi everybody, I'm back from an incredible trip to Texas and Arizona. Because I stopped taking all my medications and supplements days before my trip (except for a couple that don't produce any die-off and help with energy), I was able to get through six demanding days of socializing and trekking. While I inevitably experienced bouts of fatigue on my journey, I was pleasantly surprised to see how well I tolerated four flights and staying so busy in between.
Because of the people I surrounded myself with, and the adventures I went on, I can honestly say it was one of the best trips I've ever taken. (I can think of one or two that top it, but I've done a lot of traveling! Ha). When I got home, I was completely and deeply exhausted in every muscle in my body, but in one of those happily exhausted ways, like how runners must feel after they complete a marathon. (Not that I would know from experience).
Two days after I got back, after I'd resumed my treatment, I was feeling mentally and physically fatigued, weak and sore, so I opted for a mini massage offered in the corner of my local Whole Foods. Lucky for me, the masseuse, who appeared half gypsy, half hippy, specialized in energy work, acupressure points, and natural healing. After she "felt" that my kidneys, liver, thyroid, spleen, gallbladder and stomach were not functioning properly, and adjusting them via energy and massage, she recommended I buy a product called ChlorOxygen (read the customers' comments on the website). She doesn't profit off Whole Foods' sale of this product. She just suggested it because she could tell my body was thirsty for it. And I'm glad she did!
I've been taking the ChlorOxygen for a few days now and it has noticeably helped with two of my main symptoms: air hunger (shallow, gaspy breaths) and fatigue. I would recommend this product to anyone with any respiratory problems, blood problems or fatigue.
Anyway, it's good to be home, but I already want to go on another vacation! I think that's a good sign--of improvements?--and anyway,the summertime weather agrees with me.
Next up are two brand new supplements: Core for KPU (kryptopyrroles in my urine) and Diatomaceous Earth for parasites. Next time I blog, I'm sure I'll have experiences/side effects to share on those.
Because of the people I surrounded myself with, and the adventures I went on, I can honestly say it was one of the best trips I've ever taken. (I can think of one or two that top it, but I've done a lot of traveling! Ha). When I got home, I was completely and deeply exhausted in every muscle in my body, but in one of those happily exhausted ways, like how runners must feel after they complete a marathon. (Not that I would know from experience).
Two days after I got back, after I'd resumed my treatment, I was feeling mentally and physically fatigued, weak and sore, so I opted for a mini massage offered in the corner of my local Whole Foods. Lucky for me, the masseuse, who appeared half gypsy, half hippy, specialized in energy work, acupressure points, and natural healing. After she "felt" that my kidneys, liver, thyroid, spleen, gallbladder and stomach were not functioning properly, and adjusting them via energy and massage, she recommended I buy a product called ChlorOxygen (read the customers' comments on the website). She doesn't profit off Whole Foods' sale of this product. She just suggested it because she could tell my body was thirsty for it. And I'm glad she did!
I've been taking the ChlorOxygen for a few days now and it has noticeably helped with two of my main symptoms: air hunger (shallow, gaspy breaths) and fatigue. I would recommend this product to anyone with any respiratory problems, blood problems or fatigue.
Anyway, it's good to be home, but I already want to go on another vacation! I think that's a good sign--of improvements?--and anyway,the summertime weather agrees with me.
Next up are two brand new supplements: Core for KPU (kryptopyrroles in my urine) and Diatomaceous Earth for parasites. Next time I blog, I'm sure I'll have experiences/side effects to share on those.
Monday, July 4, 2011
New Lab Results
It's been exactly one month since my last blog entry, and five months since I started Lyme treatment. I've had a rough and stressful month that pulled me away from my blog, but I do intend to resume blogging with more frequency. There's quite a bit to report, but I'll break up my diatribe into shorter entries lest I produce an update so long that no one gets through it.
Last week I had my follow-up Dr.s appt with my Lyme doctor. We reviewed my latest blood test results, taken in June, which weren't very encouraging. But at least they fill in some pieces of the puzzle and point me in the right direction for next steps.
First, it seems that the gamma globulin shots aren't helping me produce enough Natural Killer cells, since after three of these shots, my levels are still low--not just low, but far out of range. A healthy person produces more than 100 and up to 360 on the CD57 scale (a test for NK w.b. cells), but my number just came back as 36. NK cells are CRUCIAL to healing, for they are the heart of the immune system's response to any invaders/infections.
So... since the gamma globulin is proving as not effective enough for me, my Dr. has added something called low-dose Naltrexone, a drug that serves as an immune system modulator, which is commonly given to AIDS patients and people with autoimmune diseases. It has many benefits, not limited to boosting NK w.b. cells, but also boosts endorphins and balances the central nervous system. It's very promising, and I've only heard good things about it in the Lyme community. I started it four days ago and only wish I had started it sooner. I have high hopes for what low-dose Naltrexone can do!
Another big piece of the Lyme puzzle is something called VIP. (I had not been previously tested for VIP but I asked my Dr. to test me for it after I learned about it from a Lyme friend.) VIP is a hormone produced by the hypothalamus. The hypothalamus is the big control gland in our body, and among many things, controls and regulates immune and inflammatory responses via the hormone VIP. When a person becomes sick with a biotoxin illness, i.e. Lyme or mold, the ensuing inflammation causes damage to the hypothalamus. When this happens the hypothalamus is no long able to produce enough VIP hormone, resulting in runaway inflammation. This begins an inflammatory cascade that causes many things to occur but not limited to sleep disturbance, chronic pain, gastro-intestinal issues, adrenal dysfunction, and prolonged illness.
A healthy person's VIP hormone levels are between 23 and 64. Mine came back as "less than 10" which means I am way below the healthy minimum (and who knows what <10 really equates, numerically speaking? Zero? One? Four?) I just had this test performed in June so this is brand new, and therefore it's somewhat discouraging knowing that every supplement I've been on for five months to strengthen my adrenals, liver, thyroid, etc., haven't done enough to correct serious imbalances in my body.
So, I need to be treated with the VIP hormone. BUT, here's the catch: it's difficult to simply correct low VIP levels with a bio-identical hormone until the cause of the illness (Lyme and co-infections live in my body) are under control. So VIP will have to be the last thing I treat. It makes it doubly complicated that my doctor isn't familiar with VIP, but I've got the help of a few Lymies familiar with VIP, in addition to seeing a new doctor in August who can guide me.
Lastly, I've been diagnosed with KPU (kryptopyrroles in urine) and low ADH (anti-diuretic hormone) which are both opportunistic to chronic Lyme. With KPU, we pee out our minerals and our bodies grab ahold of metals in the place of minerals, making us metal toxic. See, a high number of people with Lyme have heavy metal toxicity such as mercury, lead and arsenic. We're exposed to metals from cavity fillings, paint, medications, tap water, seafood, and much more. People with healthy immune systems do not become metal toxic because the healthy body discards excess metals, but people with Lyme and KPU harbor these metals because our bodies are desperate for minerals. These metals need to be addressed in order to heal from chronic Lyme.
Sidenote: Now I know why I've have such an irritable bladder for decades, prone to non-bacterial cystitis, and why getting my urethra dilated in 2007 and numerous subsequent visits to the urologist (where I was the ONLY patient under 70 in the waiting room) did nothing to help.
The KPU protocol is very hard on the body, since it causes metal chelation from places like the brain. Since I leave in about a week for a dual-trip to Phoenix and Dallas, I'm going to hold off on the KPU treatment until I return. At any rate, it's another thing that has to be addressed before I can even begin to treat my VIP hormone imbalance. Isn't the complexity of this riveting? If you've read through this entry and understood the majority of what I wrote, then you're way ahead of the pack (and most doctors). The dynamics, chronology, and dosages of each pill, powder, injection, cream or sublingual drops are rather stubborn and demanding. There's nothing simple about treating Lyme or its many offshoots.
It just occurred to me that it's rather amazing I've been able to marginally function among friends, at jobs, and in society in general after learning just how many things in my body are not functional. Yet it all certainly explains the physical and mental illnesses and imbalances I've always had that made me feel so isolated and, at times, downright miserable, among these friends, jobs and in society in general.
Last week I had my follow-up Dr.s appt with my Lyme doctor. We reviewed my latest blood test results, taken in June, which weren't very encouraging. But at least they fill in some pieces of the puzzle and point me in the right direction for next steps.
First, it seems that the gamma globulin shots aren't helping me produce enough Natural Killer cells, since after three of these shots, my levels are still low--not just low, but far out of range. A healthy person produces more than 100 and up to 360 on the CD57 scale (a test for NK w.b. cells), but my number just came back as 36. NK cells are CRUCIAL to healing, for they are the heart of the immune system's response to any invaders/infections.
So... since the gamma globulin is proving as not effective enough for me, my Dr. has added something called low-dose Naltrexone, a drug that serves as an immune system modulator, which is commonly given to AIDS patients and people with autoimmune diseases. It has many benefits, not limited to boosting NK w.b. cells, but also boosts endorphins and balances the central nervous system. It's very promising, and I've only heard good things about it in the Lyme community. I started it four days ago and only wish I had started it sooner. I have high hopes for what low-dose Naltrexone can do!
Another big piece of the Lyme puzzle is something called VIP. (I had not been previously tested for VIP but I asked my Dr. to test me for it after I learned about it from a Lyme friend.) VIP is a hormone produced by the hypothalamus. The hypothalamus is the big control gland in our body, and among many things, controls and regulates immune and inflammatory responses via the hormone VIP. When a person becomes sick with a biotoxin illness, i.e. Lyme or mold, the ensuing inflammation causes damage to the hypothalamus. When this happens the hypothalamus is no long able to produce enough VIP hormone, resulting in runaway inflammation. This begins an inflammatory cascade that causes many things to occur but not limited to sleep disturbance, chronic pain, gastro-intestinal issues, adrenal dysfunction, and prolonged illness.
A healthy person's VIP hormone levels are between 23 and 64. Mine came back as "less than 10" which means I am way below the healthy minimum (and who knows what <10 really equates, numerically speaking? Zero? One? Four?) I just had this test performed in June so this is brand new, and therefore it's somewhat discouraging knowing that every supplement I've been on for five months to strengthen my adrenals, liver, thyroid, etc., haven't done enough to correct serious imbalances in my body.
So, I need to be treated with the VIP hormone. BUT, here's the catch: it's difficult to simply correct low VIP levels with a bio-identical hormone until the cause of the illness (Lyme and co-infections live in my body) are under control. So VIP will have to be the last thing I treat. It makes it doubly complicated that my doctor isn't familiar with VIP, but I've got the help of a few Lymies familiar with VIP, in addition to seeing a new doctor in August who can guide me.
Lastly, I've been diagnosed with KPU (kryptopyrroles in urine) and low ADH (anti-diuretic hormone) which are both opportunistic to chronic Lyme. With KPU, we pee out our minerals and our bodies grab ahold of metals in the place of minerals, making us metal toxic. See, a high number of people with Lyme have heavy metal toxicity such as mercury, lead and arsenic. We're exposed to metals from cavity fillings, paint, medications, tap water, seafood, and much more. People with healthy immune systems do not become metal toxic because the healthy body discards excess metals, but people with Lyme and KPU harbor these metals because our bodies are desperate for minerals. These metals need to be addressed in order to heal from chronic Lyme.
Sidenote: Now I know why I've have such an irritable bladder for decades, prone to non-bacterial cystitis, and why getting my urethra dilated in 2007 and numerous subsequent visits to the urologist (where I was the ONLY patient under 70 in the waiting room) did nothing to help.
The KPU protocol is very hard on the body, since it causes metal chelation from places like the brain. Since I leave in about a week for a dual-trip to Phoenix and Dallas, I'm going to hold off on the KPU treatment until I return. At any rate, it's another thing that has to be addressed before I can even begin to treat my VIP hormone imbalance. Isn't the complexity of this riveting? If you've read through this entry and understood the majority of what I wrote, then you're way ahead of the pack (and most doctors). The dynamics, chronology, and dosages of each pill, powder, injection, cream or sublingual drops are rather stubborn and demanding. There's nothing simple about treating Lyme or its many offshoots.
It just occurred to me that it's rather amazing I've been able to marginally function among friends, at jobs, and in society in general after learning just how many things in my body are not functional. Yet it all certainly explains the physical and mental illnesses and imbalances I've always had that made me feel so isolated and, at times, downright miserable, among these friends, jobs and in society in general.
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