Friday, May 27, 2011

Of Hearts, Minds and Bodies

I've always instinctively known my chronic struggles with physical endurance were more than due to being "out of shape"; and that, no matter how many hours I spent at the gym, or how many miles per week I walked (at one point in college it was about fifteen), I wasn't seeing improvement. After months of battling a daily climb uphill en route to campus or regularly walking up flights of stairs, I still dreaded the post-exertion malaise I knew would inevitably result.

Was something wrong with my heart? There were early signs: By five, I couldn't keep up on family walks and cried to be carried, leading my parents to fear I had become the spoiled youngest child. At six, I had to drop out of gymnastics. Throughout elementary school, I could never run the mile in P.E. As a teenager, whenever
 all the benches and seats were already occupied, I'd sit on unsanitary grounds in subway stations, airports and bus stops to wait (and on more than one occasion, eyes rolled at me). 

I secretly envied the ease in which the elderly were offered seats by younger generations, and knew nobody would give up their seat for a barely-adult, rail-thin female who showed no outward signs of illness. Sitting on the ground--whether a sidewalk, the carpeted floor of a subway train, or--awkwardly--standing-room-only music venues where thousands would surround and borderline trample me--became the norm. And this was beyond anything exercise could fix. I knew.

It turns out there's a condition called Postural Orthostatic Tachycardia Syndrome (POTS) which means, put simply, that 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. (Okay, that wasn't "simple", but there's more complex descriptions on Google if you're curious). Because blood flow does not adequately reach the brain to perform its hormonal balancing act, the standing position can trigger anxiety and weakness, among others.

Adrenal insufficiency, due to chronic stress or emotional trauma, can cause POTS, as can chronic viral or bacterial infections, and there's indication it could be genetic. I'm still not sure if it's the heart itself or the veins that perform POTS' mechanisms, but I did learn that reduced venous (vein) return of blood causes symptoms, and that venous return is reduced when you have venous pooling (blood collecting in one spot). Well, venous pooling sounds to me a lot like hypercoagulation, a blood thickening and potential for clots that is caused by Lyme disease (with which I've been diagnosed thru blood tests). Are you following me? I know this gets confusing.


So something is wrong with my circulatory system. But wait, I saw a cardiologist when I was in high school after a series of chest pains left me thinking I was having mild heart attacks. The doctor attached wires to my chest with suction cups and performed a "stress test" which came back normal. Upon further testing, he diagnosed me with mitral valve prolapse and said it was nothing to worry about and I'd just have to live with it. But why didn't he detect my POTS?

Sadly, it's nothing new. Specialists missed a lot of things throughout my lifetime. For example, endocrinologists failed to diagnose me with Hashimoto's disease until this year, even though my thyroid levels were down one year and up the next. And allergists (and yes, there were several) never questioned my diet, but pointedly incriminated my cats and dust, while incapacitating me with medications and shots. (Can you imagine? An allergist who doesn't even question if dairy or gluten can make my nose constantly run?) My list of specialists who failed me is truly endless.

It's not just that they misdiagnosed me. They never once looked at my health holistically, asked what I ate or what supplements I took. For instance, I never had a single doctor suggest I take B vitamin complex and Vitamin C for my sinus inflammation (both of which, when taken together, I've discovered reduce my nasal inflammation and mucous production at least three times as well as any allergy pill on the market). And never did a psychiatrist (of which I've seen at least four) test my blood serotonin levels or recommend one of the plethora of natural serotonin-boosting supplements or foods. The ease in which doctors (not just psychiatrists) dole out prescriptions for anti-depressants rather than checking for underlying, physical causes of depression, disappoints me. No, that would be an understatement. It shakes me to the core... it sickens and poisons my otherwise natural affection for humanity.

I didn't intend for this entry to deviate in this direction, but now that it has, I'll leave it and end on this note. Please do not put your trust in doctors. Put your trust in your intuition first and foremost, and spend your lifetime seeking truth and information. I honestly believe the last person on earth to provide you with that truth might be a doctor. (I know, I'm biased and jaded... but with good reason).

Tuesday, May 24, 2011

Not Much To Report

I can't believe how long it's been since I've updated you guys on my progress. Time really gets away from me when I'm delirious, which I've been for the last couple of weeks. My knowledgeable friends in the Lyme community call my general fogginess "brain inflammation", and that's exactly what it feels like.

One thing I've learned recently is just how long this whole treatment takes. It's a very long process and requires maintenance for life. Everyone wants to see me snap my fingers and be healed, but it doesn't work that way. Lyme is extremely complex and has to be treated in stages and layers. Patience is a necessity, and rushing the process doesn't make it work faster--it can actually have the opposite effect.

Since my last update, I've completely stopped taking the enzymes, a.k.a. biofilm busters. While they're touted as a vital part of the Lyme-killing process, I just can't tolerate enzymes. Even in small doses, they feel like they're tearing up my stomach lining. Three days into them, I think I started to develop an ulcer. The pain in my abdomen was a combination of gnawing, sharpness, burning and soreness, but it was limited to my central abdomen (so no esophagal reflux or intestinal pain). Taking them on a full stomach didn't seem to help. I also felt enraged and extremely irritable. A couple days after stopping the enzymes, the stomach pain finally dissipated, as did the rage.

About a month from now, I'll be finding out where I stand in terms of progress and healing. All of the myriad tests are being re-run, in addition to a few new tests which I'm excited about.

Until then, I really don't have much in the way of excitement or new developments to report. Except for the enzymes, I'm still on the same list of medications and supplements that I posted early this month. In fact, I mentioned in that list that I'd be starting some new anti-parasitic meds soon, and I've been tolerating those pretty well. I haven't noticed any parasite die-off or any new rashes recently, but I do notice I'm more sluggish than usual.

Well, I'm sure this entry has my readers yawning! And I'm right there with y'all! Whether it's the lack of excitement in my update or the fact that it's 1:40 a.m., I'm fighting some serious sleepiness right now.....

I promise I'll be back soon with some juicy, controversial and very personal stories. I'm already formulating them in my half-baked head. Coming up soon: Friends who stabbed me in the back; and my humorous attempts to be a career woman. It'll be like late night reality TV. And if you have Lyme, you'll sooo relate. So check back soon. Thanks for reading, and goodnight.

Saturday, May 14, 2011

General Notes from Dr. Klinghardt

The following is a list of highlights from a Teleseminar held by the world-renowned leading expert on Lyme disease, Chronic Fatigue Syndrome, Autism and Parasites: Dr. Dietrich Klinghardt. I have bolded the ones I find particularly fascinating and relevant to many of us, but I actually think ALL of them are interesting! :) I think everyone would benefit from reading these.

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*According to Dr. Klinghardt, most people's Lyme disease symptoms are not from Lyme. The primary role of Lyme disease is to suppress the immune system so that other bugs and factors can cause symptoms.
*Symptoms of heavy metal toxicity, electromagnetic pollution, mold, and post-traumatic stress disorder can be identical. This is because all of these factors work together synergistically to cause symptoms.
*Residue from anti-depressants and sedatives stick on receptors in the brain for life, unless the person does aggressive detoxification to remove it. People who have been on such medications tend to have a poorer response to Lyme disease treatments.

*Neurological diseases are usually vascular diseases. Neuron degeneration is secondary to vascular disease, and results from blockages or constriction of the body's vascular system.

*All chronic fatigue patients have two things in common: First, viruses aren't their primary reason for fatigue. Rather, parasites and chronic sinus infections are more likely to be a primary cause. Eighty-six percent of people with CFS (chronic fatigue syndrome) have parasites. 

*Most people with Lyme have low serotonin. 5-HTP, theanine, and melatonin can help to increase levels. 

*People with chronic Lyme disease and mold don't often make enough anti-diuretic hormone, so they lose their water and tend to become dehydrated. The organs don't work well when the body is dehydrated. 
 *Tapping on either side of the head, above the ears, several times per day, downregulates an overactive immune system. 

*Chronic, antibiotic-resistant staph, strep and mold infections in the sinuses produce mycotoxins which enter the hypothalamus and affect its function. 
Chronic sinusitis is the most overlooked problem that most people have. Low back pain, migraines and fatigue can all be symptoms of sinusitis.
*How sick people get depends not upon the bugs, but rather, the strength of the body's immune reaction. Therefore, immune modulation is important. 

*Electro-magnetic field (EMF) pollution in the environment is doubling every year. Levels are currently 125 million times greater than they were just 15 years ago. EMF's damage our DNA.

*Molds release biotoxins to defend themselves from electromagnetic frequencies. They produce more toxic toxins than mold that isn't exposed to EMF's. This means that the molds and yeasts that people are infected with put out more virulent toxins in the presence of EMF's. Wow! 

*With each passing year, mold toxins will become more and more dangerous, due to increasing levels of EMF's in the environment. 

*High dose chlorella (20 tablets, 3-4 times per day, a half hour before bedtime) combined with high doses of fish oil (2 grams or 10 capsules per day), turns on the body's ability to remove mold, and turns on the cells' organelles for detoxification. Chlorella also binds a lot of radioactive toxins.

*Always treat parasites before other infections. They are the most hardy. Also, by treating organisms in order from large to small, you can often treat multiple organisms at once, because parasites and mold (which are larger than bacteria and viruses) tend to harbor these latter organisms. 

*Thirty percent of all people have staph infections in their noses that block the hypothalamus' ability to produce 1/3 of its hormones. 

*Bugs use the body's hormones, which is one suspected reason why the body downregulates its hormonal production in chronic illness.

*Osteoarthritis is a symptom of insulin resistance. 

*Gut inflammation and damaged villi in the intestines (from antibiotics and infections) causes cortisol levels to rise, which stresses the adrenal glands.

*The normal pH of urine is between 6.0-6.4. The normal pH of saliva is between 6.5-6.9. When pH saliva is lower than pH urine, the body may have kidney problems. 
Resolving emotional trauma makes the body more pH-balanced.
*Artemisinin is the most effective protozoal/malarial drug. 

*Electromagnetic fields activate ROS (reactive oxygen species), which creates oxidative stress, hypercoagulation, and other problems in the body. 

*The body's process of gene transcription is very precise, but random genes get activated by EMF's (ie, cancer genes).

*Studies on mothers of autistic children reveal that they slept in high EMF areas during their pregnancies. EMF’s are dangerous to the health of a developing fetus.

*X-rays cause leukemia.

*We all have the energy of hundreds of telephone calls going through us all the time. This is damaging to the body.

*Autologous stem cell therapies (using one’s own stem cells) is very effective for the treatment of chronic disease (cancer, diabetes, Lyme, MS, Parkinson’s, etc.), and for promoting longevity.

*Adult stem cells repair injured and diseased tissues. Aging is simply a decline in stem cell function.

*Many people who treat for Lyme disease only get about 60% better. Stem cells may be a good option for such people, although it’s best for them to do a thorough detoxification program first, or else they won’t get good results from the therapy.

*Parasite cleanses are useful for everyone. The more you de-worm yourself, over a lifetime, the healthier you will be, whether you are symptomatic or not.
 *Methylcobalamin is food for the nervous system. It restores damaged neurons and has a detoxifying effect upon the body.

*Alpha-lipoic acid aids in the detoxification of heavy metals, but is most effective for removing mold mycotoxins.

*There are four important treatment steps to healing all chronic illnesses: 

-Balancing the body's basic biochemistry (Ie, with natural remedies such as niacinamide and berberine for insulin resistance)

-Killing the microbes

-Downregulating the upregulated aspects of the immune system

-Detoxifying the body (especially from biofilms). Biotoxins can exist in the body for years, even after the bugs are gone, which is why it's important to get rid of them. Killing bugs alone isn't sufficient.

Friday, May 6, 2011

M.D. + N.D. = :-)

Lately I've been feeling that my Lyme M.D.--who's fairly new to treating chronic Lyme and specializes in endocrinology--hasn't been helping me enough. Sure, he acknowledges chronic Lyme, hyper-coagulable state, chronic Epstein-Barr and pneumonia, CFS and candidiasis, which *each alone* is more than what a mainstream M.D. can or is willing to treat. And for that he's wonderful. He diagnosed me with all my infections through proper bloodwork (finally someone did!) and put me on Armour thyroid for Hashimoto's disease, so I'm definitely grateful to be his patient!

But he's not savvy enough on chronic Lyme because he's not too experienced with it. He can't answer many of my questions and doesn't even know what a Lyme die-off rash is. While I appreciate his somewhat alternative approach, I don't think he's alternative enough for me, which led me to seek out a naturopath I've wanted to work with in conjunction with my Lyme M.D.

So, about two weeks ago, I searched for someone on Yelp who was an all-around naturopath, someone who could do everything from lymphatic massage to muscle testing to EFT to energy field work to Chinese medicine. I didn't know if this person existed, but I found him! Luckily he's only a 20 minute drive from where I live. He certainly is a jack-of-all-trades, adding chiropractic to the list that includes all of the above. And he costs far less than what I had expected.

So far, in three one-hour visits, he's energy tested my liver (it's congested every time), adjusted my spine, grounded my energy, performed acupressure on my liver and gallbladder points using pressure to my feet and a laser pointer, muscle tested my subconscious thoughts, performed Emotional Freedom Technique, muscle tested my supplements, and added a few homeopathic remedies to my protocol.

The new supplements, all of which come in the form of drops, include trace minerals (he determined I was mineral deficient and my water source is not hydrating me adequately), a neurotransmitter blend (which includes serotonin, dopamine, norepiphedrine), a biofilm buster (made up of enzymes that serve to bring the bugs out from hiding), and a lymphatic drainage remedy.

Since I haven't updated any of you on what I'm on since March 5th, I thought I'd update you on everything I'm taking, and share some notes on some things I was taking and have removed from my regimen:

  • Minocycline: Still my main antibiotic for killing Lyme.
  • Cat's Claw anti-fungal and anti-viral: Took for 3 months but not taking it right now. I muscle tested poorly to both the capsules and drops so I had to stop.
  • Cumanda drops: Also anti-viral and anti-fungal. Yes I am still on this for killing chronic infections.
  • Probiotics: Now taking two kinds to restore intestinal flora that antibiotics kill, and to kill candida.
  • Armour thyroid: I continue to muscle test very well for this, indicating my body eats it up! This is for my Lyme-induced Hashimoto's disease.
  • Iodine: Not taking it because I muscle tested very badly for it and it seems to be messing with my Hahimoto's. Hmm!
  • 5-HTP: I have replaced this with L-tryptophan for the time being because I haven't decided which I like more, and they essentially do the same thing. Both boost serotonin, which blood tests proved was so far below normal range that it was undetectable. I have undetectable serotonin, wow!
  • Vitamin D3: I still take this and respond well to it. Lyme depleted my Vit D levels to below normal range. Vital nutrient.
  • Chelated magnesium: Still take it and need it and eat it up! Lyme also depleted my magnesium levels to below normal range. Also vital for health, and without it, you become metal toxic.
  • Omega-3 oil and Salmon oil: I interchange between these two to combat chronic inflammation.
  • Vitamin B6 and B12: Temporarily on a break from these since I muscle tested poorly to them individually. Need to start taking a B complex again.
  • Diflucan: Nope and never again, haha. This was for candida but it's one hot mess of a drug.
  • Progesterone cream: This one is iffy. I use it only between ovulation and menstruation, and I've muscle tested poorly to it but still include it sometimes. Will retest again soon.
  • Vitamin C: A very basic anti-inflammatory. Yes and always!
  • Gamma globulin: No more. I had two shots but I've moved on to other immune cell boosters for now, although I plan to revisit GG shots again in the future, down the road. This increased white blood cell count, which was WAY below normal.
  • Coffee enema: I started these for liver detoxification, 2 x a week. Enemas are... not fun.
  • Trace minerals: Necessary since Lyme depletes minerals. I drink them in all my water now.
  • Chlorella!!!: I put three exclamation points because chlorella is the motherload of everything. It detoxifies me, purifies me, and I muscle test very positively and eat it up as often as I can!!
  • Vitamin E: Yes. Another important anti-inflammatory to keep my inflammation in check.
  • Cymbalta: A necessarily evil. SNRI which keeps me sane til my brain heals.
  • Neurotrans: A homeopathic version of Cymbalta, hopefully to help reduce my dependence on Cymbalta.
  • Neuro Anti-tox: An important aid for neurotoxins in the brain and/or neuro damage caused by Lyme. 
  • Taurine: Strengthens cell wall strength and helps with brain function, among other things.
  • Adrenomend: A wonderful herbal supplement for fatigued adrenal glands, and my adrenals are very weak from Lyme. Adrenal strength helps your body manage stress.
  • Ashwaghanda: An herb for adrenals, but I muscle tested poorly so I'm on a break from it right now.
  • A-BABS: A parasite killer which I take in a low dose but not consistently. I'm cautiously testing my body's reaction to it.
  • Biofilm Buster: A new supplement made up of enzymes that bust the fibrin sheath that helps Lyme hide. Exposes Lyme bugs so the other meds can better kill them. Also thins blood, as Lyme patients have hyper-coagulable (thicker) blood.
  • Grapefruit seed extract: Naturally kills yeast and mold in the body (anti-fungal)
  • Lymph Drainage: A homeopathic lymphatic drainage liquid to help unclog the lymph nodes.
  • Nasal wash: A natural anti-fungal spray that kills resistant sinus infections and detoxifies the brain of Lyme neuro-toxins. Have placed an order, awaiting it in the mail. Will start ASAP.
  • Chanca piedra: An anti-parasitic to kill bugs and co-infections. Also in the mail to start ASAP.
  • Artemisinin: Another anti-parasitic to kill bugs and co-infections. Also in the mail to start ASAP.
  • Baking soda and sea salt: I bathe in these nightly to detoxify my body. Many of the supplements I'm taking (above) release toxins into the body as they kill infections.
  • Cilantro, lemon juice, garlic: I try to eat at least two of these daily, as they all contain natural anti-viral and anti-Lyme properties.