Friday, August 26, 2011

The Newer, New Normal

This might be my most important blog entry to date. It's quite long, but if you don't really understand what I'm going through, and find yourself wanting to understand it better, this entry will probably answer a lot of your questions regarding my condition. If you should read one entry I've written thus far, this is the one.

Now that I've seen my new LLMD and run more tests, I have some new results. So, here is an updated list of ailments that chronically plague me:

1. Lyme disease - A multi-system, inflammatory and neurological disease which causes over 100 symptoms. Lyme disease is carried by ticks, mosquitoes, and flies, and can be transmitted through sexual contact or in utero from mother to fetus. Independent tests have proven all of the above, but IDSA won't acknowledge it. The longer someone has had Lyme, the longer treatment is required, and in fully disseminated (chronic) cases, treatment is experimental. Even after the Lyme spirochete is killed, patients may still display chronic symptoms due to the damage Lyme did to the organs. For example, even after being "cured", a patient may have lingering nerve damage or thyroid disease, because killing off the Lyme spirochete doesn't constitute recovery of the organs & systems that it damaged.

2. Babesia - A very serious, malaria-like infection that causes fevers, fatigue, spleen damage & pain (my spleen has been hurting me on & off for years with a sharp stabbing pain--yet another "mystery" symptom of mine), liver damage, low blood pressure, neurological symptoms, vivid nightmares, nausea and more. A common co-infection of Lyme disease, babesia affects up to 50% or more of Lyme cases. This is very difficult to treat, and for chronic cases can require a year or more of treatment, and even after "recovery" patients often relapse, due to babesia's ability to avoid & escape medication. Like the Lyme spirochete, babesia is very clever, knowing how to hide
from anti-microbial drugs in our tissues, behind our fibrin sheaths where the medication cannot reach.

3. Mycoplasma - A bacteria that destroys mitochondrial cells, which are a major source of energy. People with mycoplasma fermentans & pneumoniae (both of which I have) are almost always fatigued. The former of two types of mycoplasma causes muscle tissue degeneration, chronic pain, sinus & respiratory illnesses and more. Acting as a parasitic bacteria, they steal fats, vital nutrients, vitamins and amino acids, and in the process cause cellular destruction, in order to survive. They also leave the immune system in a constant state of inflammation, due to their inflammatory properties. They require extensive antibiotic treatment but results are not guaranteed nor has a cure been proven to be effective.

4. Parasites - Upon muscle and energy testing, my new LLMD has discovered that I have six types of parasites, including blood parasites and digestive ones. Parasites are very common, and 80% or more of the general (healthy) population has them living in their gut or, less frequently, blood. Blood parasites are NEVER seen by the naked eye, but intestinal ones have the potential to be seen in stool. Until last month, I had never seen a parasite in my stool in my entire life, but it turns out they've been living inside me most of that time. Now that I'm taking several anti-parasitics, I see threadworms, generic roundworms, and other mysterious worms in my stool on occasion. By contrast, I've been feeling the blood parasites biting my skin from the inside since I was young--I just never understood those crawling & itchy sensations until now. Parasites live in high numbers, and cause harm in a number of ways, not limited to leeching off the nutrients in our blood supply, releasing toxins into the body, and chewing holes into our gut, causing leaky gut syndrome.

5. POTS - Postural Orthostatic Tachycardia Syndrome is a condition of the circulatory and nervous systems. When a person shifts from a sitting to standing position, their heart rate spikes, their blood pressure drops, and the autonomic nervous system fails to regulate cerebral levels of blood, epinephrine and norepinephrine. This explains why I cannot stand for very long, get light-headed, have low blood pressure & cold hands and feet, and feel more anxious while standing than while sitting. My heart simply cannot keep up with what my body wants to do.

6. Hashimoto's Thyroid Disease - This is an auto-immune disease in which the thyroid is in a constant state of inflammation, ultimately causing reduced thyroid function. The thyroid gland plays a major role in our health, regulating our metabolism, important hormone levels, and our hearts. As with other auto-immune diseases, Hashimoto's disease causes my overactive immune system to attack my own body, namely my thyroid gland.

7. KPU (Pyroluria) - This is a mineral deficiency caused by elevated kryptopyrrole levels in the blood. KPU causes the body to release vital minerals and Vitamin B6 through the urine, in turn unintentionally clinging to metals to fill the mineral void. In addition to being mercury- and metal-toxic, people with KPU have severe emotional and behavioral abnormalities such as addictive behavior, depression, intolerance to stress, mood swings and rage; and an higher-than-normal percentage of KPU patients are criminals, alcoholics and schizophrenics.

8. CBS+ genetic mutation - This is what throws the wrench into the mix. The CBS+ genetic mutation is inherited from one's parent(s) and causes an impairment to the body's methylation (detox) pathways. While most individuals are able to release toxins via various pathways, including via the liver, feces, skin, etc., people with this mutation are unable to properly release toxins. This mutation makes it VERY difficult to treat and kill Lyme & co-infections mentioned above, because anytime a virus, bacteria or parasite is killed, it produces a toxic by-product in the process of its death. Methylation pathways detoxify the body of by-products of die-off--only, mine don't work. This mutation also prevents me from taking run-of-the-mill remedies for the above conditions, because many of these remedies--while killing off by bugs--just make my mutation worse. Because I have this mutation, I have to correct the mutation as best as possible, take alternative supplements, go very, very slowly, and do a lot of heavy detoxing in the process.

You may ask, why do I have so many things at once? Well, when you go nearly 30 years without treatment, one domino knocks over the other and pretty soon you have a full-on domino effect. See, most of the above are opportunistic to each other. In other words, when you have one, you're more likely to have another. When you have several, you're much more likely to have several others... and so on. This is because the body is a holistic machine (i.e. works as a whole), each organ and system working together. Each organ and system relies on the other in a system of checks and balances, so when one or two are out of whack, they throw everything else off. And when the immune system isn't able to fight off invaders anymore, all these viruses, parasites and bacterium take a strong hold of the body. In other words, I spent my youth basically living with the immune system of an elderly person or an AIDS patient, my body serving as a ripe host for infections that healthy individuals would have fought off.

So, what is my treatment protocol, how am I doing now, and when should I expect to be better? People want to know, so I'll lay it out for you here.

First of all, it's a very, very long process. If I get better (and that's not guaranteed), then it could be several years. I have to take about 30 supplements per day, each with a very specific purpose, and each a vital part of the whole. The supplements, all but one of which are non-pharmaceutical, work together synergistically but also independently serve their own purpose.

~The anti-inflammatories such as omega-oils are absolutely vital since my body is in a constant state of inflammation.
~The anti-microbials such as cats claw kill the Lyme and mycoplasma.
~The binders such as chlorella & activated charcoal are essential to assist in the detoxification of die-off, since dead bugs produce very powerful neuro-toxins. (You would not want to take an anti-microbial without the binders, especially with the CBS+ genetic mutation, or else you become dangerously toxic.)
~I take minerals to replace the minerals that are lost due to KPU. Minerals are essential to good health.
~I take amino acids and hormones to balance my brain, neurotransmitters, serotonin levels, thyroid, and sex hormones.
~I take herbs to strengthen my adrenals and liver, which are very weak.
~I take certain vitamins such as Vit D and iron, both of which I'm very deficient in because Lyme disease strips you of iron and Vit D.

Lately, several non-lymie friends have said they feel I might be taking too many supplements, basing this assumption solely off my current malaise and bed-ridden state. They must think, she's worse now than when she's off her pills, so she must be taking too much stuff. The truth of the matter is, it's only the "killing" supplements (of which I take only a couple at any given time--since I alternate them) which cause me to get sicker. And, actually, it's not even the supplements themselves, but rather, the toxins they produce that are absolutely unavoidable if I'm going to ever get rid of Lyme & my other bacteria & parasites. Whether I take two "killing" pills a day or thirty pills with varying purposes makes no difference. Killing the infections--all the bugs--makes me toxic no matter what. And the toxicity makes me sick. There's no way around it. I have to kill the bugs.

So do I need to take all of the above? Absolutely. They're each a piece of the puzzle. Am I taking too many things, which are making me sicker? No way. The anti-inflammatories, immune boosters, minerals, homeopathic remedies, herbs, binders and hormone balancing supplements do not make me more toxic, and only make my body stronger.

I still have good days and bad days, but I seem to be feeling worse lately. It's been quite a struggle to get things done, even simple trips to the store. My brain blanks out at any given moment, my legs get so stiff I struggle to walk, and my POTS makes my heart pound really hard in my chest. I get panicky, irritable and impatient when parking or checking out. My mood has been worse than usual lately, which tends to happen when my body craps out on me, and I start feeling very sorry for my lone self. I start thinking, I wish I had one local buddy to help me do laundry, cook, clean, etc., but I have nobody around here who is willing to put in the time to help me. My local friends are extremely busy with their multiple activities, work schedules, boyfriends, trips, concerts, workouts, dancing, hobbies, and families. In addition to their busy schedules, many of them live in San Francisco or far enough from Palo Alto that making a trek to my house is not at all convenient for them.

Truthfully, my inner circle of deeply close friends live in Arizona, Missouri, Texas, and Europe. But, a relatively new friend is driving two hours each way (from near the California/Nevada border) just to come and help me out tomorrow, because I'm so weak, and I'm so excited to spend the day with her! Just when I start to give up on humanity, a person comes along and restores my faith in people.

People don't realize how sick I am, because Lyme, babesia, KPU, and mycoplasma are not in the news, in Big-Pharma advertisements, or even mentioned by doctors. They're not part of our culture. But the truth is, I'm sicker than a cancer patient, and equally sick as an AIDS patient. That's not hyperbole--my LLMD and science itself would confirm it. I know if I had cancer, my friends would come out of the woodworks and lavish me with words of sympathy and support, but here I am far sicker than a cancer patient and people generally turn away.

I look back on my life sometimes and think, wow.

I've spent almost my whole life feeling horribly ill, but was dismissed by doctors as being mental, time and time again. I've coped with extreme fatigue and about 30 other symptoms on a daily basis since I was in elementary school, and learned to get through each day without making a fuss. When sick is your baseline, sick becomes the new normal. I lost friends as a teenager and young adult when I stopped being able to do "normal" things with them. I didn't tell anyone how hard it was to concentrate while having a conversation at a birthday dinner, or at a wedding, trying to fit in and not drag anyone down. I couldn't run, and was criticized by P.E. teachers for being lazy since I always walked the mile. I never danced at parties because my muscle tissue was so weak. I left events early. I hid in bathroom stalls when panic attacks took over. I was mocked for carrying tissues with me everywhere, needing to blow my nose on a regular basis. And my stomach hurt so bad for three years that I could hardly eat.

I pushed through my full-time jobs with such awful neurological symptoms, fevers on an almost daily basis, stomach aches and more, acting as professional as I possibly could (which was sometimes downright unprofessional!), keeping my mouth shut when sharp pains shot through my wrists or the bugs started crawling around and biting my skin. I took my lunch breaks napping in my car, so fatigued I'd rather sleep than eat. I drank coffee in high amounts just to get through the workday, and lots of wine at night to get myself to sleep. And I called in sick to work way too often, always being chastised by bosses for how often I missed work. But how could I go into work when I couldn't get out of bed?

I've been called lazy for having to sit down when I was supposed to stand, been called anorexic when I was too sick to eat, been called a self-absorbed attention-seeker when I got panic attacks, been called flaky when too sick to leave home, and been called a downer by boyfriends who claimed to love me. And not one of those accurately describes me.

I look forward to a day when my new normal is physical endurance and health. I keep hearing it will come, whether it's three months or three years from now. There will be a point when my body has repaired itself enough that I feel healthy, but considering it's taken 30 years to get this sick, it's not going to be an overnight recovery.

And that entry, boys and girls, just took me five hours to write.


  1. Wow Leila i'm always amazed by how much you've had to endure with this disease. I think those closest to you would be utterly amazed if they actually knew the inner strength and drive you possess. Thanks for once again sharing your experience with Lyme with us. You speak for so many of us in the community. -Thane

  2. Such a great post! I feel like you just described my entire life! Thank you for being so open and honest. I am going to share this right now!

  3. Looks like we are on the same supplement protocols! I have bottles and bottles and bottles.... and have heard the same criticisms. But,I am making progress. In my 3rd year post diagnosis, and 20 years post misdiagnosis.

    go girl!

  4. Definitely scratching my head at a few things that seem more of a "doctor" label than what might really be going on. You really need a coil hon! The POTs makes me wonder if you've got a bartonella strain going on.. bartonella lives on our red blood cells which makes us very anemic and weak blooded so you do get dizzy when standing, have nervous system issues, heart rhythm issues etc just from a bart strain (henselae hits heart the most)... POTs doesn't just happen, there's a reason causing it. Bartonella really messes with thyroid function too seeing the hashimotos. How do you know it's hashimotos and not the immune system attacking bartonella strain in your neck/thyroid where is likes to be?

    Is it true that The Core KPU can help reverse the methylation problem? I can't help but wonder if it is the bugs causing this to happen since we know combo of lyme/co's AND KPU massively impairs our glutathione levels which makes detoxing extremely difficult.

    Sorry you have all of these I'm sure it's just horrible, but hey on the bright side this is only a fraction of my load! :D

  5. Good detailed blog Leila!

    Athena has a good point. When my bug levels go down my KPU levels do too. When I get a flu my KPU and bug levels climb. My practitioner is not having me treat KPU because my levels are so low normally.

    I did have low thyroid and was taking medicine for it but my practitioner had me switch to kelp and a homeopathic thyroid spray and at the moment I don't even need those so the thyroid is heal able even with Lyme disease. I was worried I would need to take thyroid meds forever but that was not the case luckily.


  6. Very helpful post ... thank you, Leila. I want to share this with my daughter (and others who could benefit .


  7. Thank you so much, Leila for sharing! I wept when I read this post. As a parent who has watched her son suffer for years, I can totally relate to the pain and alienation you have felt from Lyme and company. I have been saying for a while now that my son would be better off with cancer or some other disease that the general public recognizes and has empathy for. Talking about Lyme to friends and co-workers is like speaking a foreign language.
    Keep sharing, Leila! I understand and feel every word you are saying. :-)

    Karen Hanauer Styers

  8. Hi Leila,
    We totally don't know each other, and we're basically on different sides of the country, but I randomly found your blog tonight, and couldn't help but write and say hello :)

    You've probably heard this a dozen times, but the way you write is absolutely beautiful. It just...flows. So many blogs about Lyme (etc.) are scattered and ALL over the place, that I must say - it was literally a breath of fresh air to come across your site tonight.

    It's been over a month since your last post, and I hope that your treatment is going well, and that, like the rest of us, you will one day wake up and feel like a whole new person!

    I've just recently started my own blog on here: and have found it very therapeutic to not only journal my experiences, but also raise awareness of how devastating life can become when you are chronically ill.

    As far as I know, I only have Lyme, Babesia, and Ehrlichia, and there are times where I feel like it's a literal "fight to the death" just to survive the day - I can't imagine what it must of been like to have several issues on TOP of that, and I admire your strength and courage to see it through.
    Hope to hear good news from you soon!
    All my best,

  9. Hi Leila , I don't know U but see U on Thanes fb page taking it ur a couple and a very cute couple U r ! First I want to say how sorry I am that U had to go thru this torture I would call it ! This made me cry the same way I cried when I saw Thane on his YouTube video , I just contracted Lyme on Memorial day weekend and I looked up Lyme on YouTube and up popped Thanes story , it broke my heart , your story ..OMG I wish I had the right words to say how sorry I am that U have endured such pain in ur life , I too feel like I am sicker than cancer patients and Aids !! I often said this , and just 2 days ago suffered a severe migraine 30 hours of shear pain cuz I cant take meds because I have gastritis so bad ! I have to suffer with it and I just want to die sometimes ! I have had Lyme only 3 month (however I really feel like I have had it for years cuz we always had ticks on us when we were kids even though other bugs spread it too)and I have been sick off and on for years BUT I blame Candida on a lot of this for my illnesses and I am getting to the point where I may just fast a couple weeks , no food at all maybe just juice fast or water fast ?I tried it for 2 days and on the 2ND day I got scared around 3:00 p.m. my heart felt like it was going to jump out of my chest so I ran downstairs and ate something ,hehe , I shouldn't have though cuz its just a detox thing going on but I had no one to help me so I just got scared ! I sympathize with U SO much on wishing that I had someone to help just clean ,or cook meals , my husband is pretty good with helping when I ask or he just gets up and does dishes which is great but I really need more help than that ! It pissed me off that U had to go thru all that as a little girl , those people make me sick ! I wish I could help U cuz I love helping people however I need to find out how to help myself cuz unfortunately I cannot take antibiotics for my Lyme(even though I hate them I want this out of me so I'm willing to take them )cuz I have such a bad stomach right now and I took 2 different kinds for 3 days and the 3rd day thought I was going to die ,so then they (the drs)decided to give me a shot of Rocethin (don't know how to spell it) and I felt sooooooo good LIKE IN 2 HOURS OF THE SHOT I COULDN'T BELIEVE IT AND I JUST GOT BETTER AND BETTER AND THEN 3RD DAY GOT A RASH AND 4TH DAY IT GOT WORSE AND THEN ITCHY ALL OVER EVEN ON MY MOUTH AND IN MY MOUTH A LITTLE Oops sorry cap lock hehe ,BUT I still felt fantastic besides the rash and itchiness , anyways they couldn't give me my second dosage becuz they said my throat could close shut , CAN U BELIEVE THE LUCK ! So this is my drama right now , I cant get any Dr's to give me antibiotics intravenously because I have no health insurance CAN U BELIEVE that , 2 infectious disease Dr's turned me away , I was furious , I said wtf?? Our Government gives billions of dollars to other countries every year and I get turned away , OMG! Seriously that pisses me off so bad ! You would never know U are that sick by looking at U cuz your so pretty and look so healthy I would have never known it and that's what people do not understand , Looks are deceiving and also people think just cuz I joke a lot that im not sick and IM SO FRICKING SICK AT times its unbearable ! Anyways Leila , keep ur head up , if ur stomach can handle all these things u are taking KEEP doing it , don't let anyone talk u out of it , its whats going to make u stronger and better in the long run ! One more thing , I can relate SO MUCH to the chain reaction thing , where if U do on thing to help one problem U have ,it interferes with another problem , U are a very smart person specially 4 ur age and just sorry u had to learn all this because u r sick , same for me ! I say U go On You Tube like Thane and tell ur story exactly how U have it here , this is a lot of GOOD stuff for people to know , U really need to share ur story more ! Take care and U will get better in time ! Keep being strong ! :) Good Luck ! Heather G. :)

  10. Thanks for sharing - it reminds me so much of my story. I feel like I lost a good chunk of my 20s to LD (along with memories). It's not something I'd wish on anyone. Have you done any dietary changes? After 3 years of treatment, a new doctor told me to cut gluten out completely and it revolutionized how I felt.
    It just feels like a giant puzzle you keep trying to put together correctly, doesn't it?