Going Quackers? What have I got to lose!

Some of you are really going to wonder at some of the updates I will be giving in the future.  So I figured it might help to say right now that what I try may be weird, unconventional, and is even found on quackwatch.com!!  Get a cup of tea, and a nice snack or some chocolate.  You have some reading to do!  🙂

I’ve had Lyme Disease for 11 years now.  It wasn’t diagnosed until I was 18, by the first doctor in my life who actually listened to what I had to say.  I had been doing really well.  I was around 50% better on a completely natural protocol (very similar to Cowden’s protocol with a few good things thrown in from Klinghardt’s protocol).  I was feeling better than I’d felt for most of my life! I was getting active, I was planning for my future.  I was beginning to act on that plan with success.

Then I was bitten again in late May 2009.  A stupid Lone Star tick decided my blood would make a nice dinner.  At most, it was only attached for 6 HOURS, that is all.  I don’t believe people who say it has to be attached for more than 24 or 48 hours in order to infect you.  I removed it properly, only 6 hours after I had gone outdoors in the first place.  I woke up the next morning with 3 small, painful, itchy hivelike rashes that last for 4-5 days.  One was on the bite location, on a couple inches up and the other 5-6 inches on the right, on my hip.  I had a few symptoms come up then…but I managed to keep things in control until my first semester of college and winter rolled around.

I already had found my LLMD by this time.  I contacted him and told him what I was on when I was bitten and asked what to do?  He wrote me back, on the same day, and said to increase the dosages of my antimicrobial herbs.  Makes good sense to me.  You’re going to ask, “Why didn’t he put you on antibiotics immediately?” Answering this question will also explain why I’m taking the approach I’m taking to Lyme.


So what are my options?

1. Do what the IDSA Lyme Disease Guidelines say to do! Basically:  for “Early Lyme Disease . . . ” take “Doxycycline . . . , amoxicillin . . . , or cefuroxime axetil . . . for 14 [to 21] days”  For “Late Lyme Disease”, one of these can be taken up to 28 days.  If more severe, it can be administed IV.  They specifically advise against doing antibiotics for longer than 28 days, and consider it ineffective.

There are a few problems with this.  9 of the 14 panel members who wrote these guidelines have proven direct conflicts of interest that make their recommendations very biased and, in fact, unscientific.  At this point the IDSA is in non-compliance with the agreements made with the Attorney General of Connecticut.

There is a growing body of evidence that Lyme disease, borrelia, is chronic in nature not acute.  It has not only the familiar spirochetal form, but there is also a cystic form called L-form, and researcher Alan Macdonald, MD (seen in the informative documentary, Under Our Skin) has proved that there is a biofilm form, and that borellia has formed genetic crosslinks in the brains of Alzheimer’s victims.  It’s really no surprise, trepenoma pallidum, the spirochete of Syphilis is recognized for its chronicity, and it’s relationship with dementia! Just to put the truly chronic forms aside and look at the spirochete form:

. . . Bacteriostatic antibiotics [like doxycycline and tetracycline] . . . are usually effective in debilitating bacteria only when bacteria reproduce.

. . . First, it is believed that dormant Lyme bacteria don’t reproduce, which diminishes bacteriostatic antibiotic’s effectiveness in fighting Lyme disease.

Second, Lyme bacteria have a long reproductive cycle. A mature Lyme bacterium reproduces once every 7 hours or so. . . In comparison, some species of the strep throat bacterium reproduce once every 20 to 30 minutes. It is not known how many reproductive cycles are needed before all Lyme bacteria are debilitated by antibiotics.

However, according to Karen Vanderhoof-Forschner in her book, Everything You Need To Know About Lyme Disease”, the strep bacterium is normally treated with antibiotics through 480 reproductive cycles.

She says that if we were to treat Lyme disease through the same number of cycles it would take somewhere between 5 to 30 months of antibiotic therapy. If this is true, it is significant that some physicians follow a protocol for treating Lyme disease that allows just two to six weeks of antibiotic therapy. Based on the above scenario this may be inadequate.

If either of the above examples are true, this may mean that physicians who are acting in good faith by using conservative treatment protocols may actually be prolonging and thus complicating Lyme infection in their patients. However, much of this theory is speculative. Obviously, more research is needed. ”  See:  Jenna’s Lyme Blog – Antibiotics:  A Dirty Word or Miracle Cure for Lyme Disease?

Being chronic, it is ridiculous to expect that 21 or even 28 days of antibiotics will cure Lyme disease.  There are MANY who have been pigeonholed as having “Post-Lyme Syndrome” by Gary Wormser, MD; et al.  Many have this stuck in their medical records as a psychological disorder, which I consider cruelty.   Those who can afford it eventually have had their bodily fluids tested and cultured for Lyme.  It comes back POSITIVE.  They are still infected, but they have been told they are crazy, not sick.  This disease can be fatal, it is in fact taking a great toll on America’s future by causing infertility, miscarriages, brain damaged children, and just plain sick kids.  There is even a growing term for Lyme and Autism’s link:  Lyme Induced Autism.  Living with Lyme is often a long slow death that is “invisible,” so most people only think you’re crazy, or have some psychological disorder, and have little to no pity on you.

Then I notice that the guidelines basically ignore that Lyme typically comes with co-infections such as Bartonella, Babesia, Ehrlichia (most Lyme patients today have 2,if not all 3 of these co-infections mentioned!), rickettsias, mycoplasmas, and viruses, all of which mean more complex treatment depending on the patient.  It mentions a few of these but on the most basic level ignores the significance.

According to these guidelines, if I am not cured in 28 days, I am labeled as having “Post-Lyme Disease Syndrome” and will basically be told that I’m crazy to have pain and other problems and that I need to see a psychiatrist.  Then a few years later I’ll probably show up with multiple sclerosis (which IS a death sentence, though usually slow).  So many other have gone through this rigamarole.  I REFUSE to.  If I decide to start on this path, it will necessitate taking the 2nd option.

I had been infected with Lyme disease for almost 10 years without a diagnosis.  I only ever took Amoxicillin for 7-10 days for sinus infections, and this was rare.  Taking antibiotics in this manner when there is underlying infection leads to antibiotic resistance.  I have had it so long that my body is full of this stuff, and it’s chronic by how long physicians have been blind to it, aside from the fact that this disease is chronic in nature.  It will take an extended period of time on “ABX” to kill it!  This is why my LLMD didn’t prescribe Amox or Doxy immediately.  He had good reason NOT to!

2. Long-Term Antibiotics:  Oral and/or IV.

This is 2-3  years of taking pulsed and well-rotated ABX that are prescribed by a LLMD.  Some take them for longer periods.  I am fully willing and ready to take this route should I need to.  In fact, I plan on starting a protocol that includes ABX for as long as I need them.  This is the approach used by well known Lyme Specialist, Dr. Joseph Jemsek whose battle to treat Lyme patients is shown on the documentary Under Our Skin.  This protocol can be done orally for a period of time.  Then it usually becomes best to insert a PICC line for IV delivery of the antibiotics to the heart.  Then you rotate back and forth.  You take breaks as needed and are determined by your LLMD.  You stop treatment when symptoms are dealt with and your physician says you’re fine.  Or you stop because you’re broke.

This is very hard on your body.  Liver enzymes must be constantly monitored, you have to keep track that yeast overgrowth doesn’t occur, etc.  The mass die-off of the microbes intoxicates your body, which is called a Jarsich-Herxheimer’s reaction, or “Herx”.  Because of all the biotoxins, these Herxes consist of worse than usual brain fog and headaches, incapacitating fatigue and dizziness , and horrible pounding, screaming and ripping pain in our joints, organs, muscles and bones, and feeling like things are crawling just beneath our skin, or not feeling areas of our body at all.  We have these symptoms anyway.  Whatever symptoms are caused by Lyme disease and the co-infections with be magnified intensly during the Herx.  There can be enough biotoxins from the Lyme and co-infections in your body to cause seizures severe enough to require hospitalization.  To do a protocol like this is nearly as intense, in many ways, as a cancer patient doing chemotherapy and radiation.  You have to be very ready for this protocol, it is anything but easy.  And, like chemo and radiation for cancer, it’s not a promise that you will get better!  But you at least have some hope, and look forward to a few days of feeling good.  This is in line with the guidelines for Lyme Disease put forth by ILADS, International Lyme and Associated Diseases Association which leaves decisions in the physician’s hands, which is where the decisions belong.

The insurance companies don’t acknowledge the ILADS guidelines.  If they did, the hundred-thousands of Lyme Disease patients alone would probably reduce their profit greatly, if not put them out of business, so they continue to abide by the anulled IDSA 2006 Lyme Guidelines.  Here’s evidence to support my statement, since it sounds so crazy.  According to the US Senate Lyme Research Bill S. 1352*:  “The Centers for Disease Control and Prevention reported 27,444 new cases of Lyme disease in 2007, a 38 percent increase nationally from 2006. Studies indicate that the actual number of tick-borne disease cases is approximately 10 times the amount reported.”   Because insurance companies don’t want to be obliged to pay for everyone, if you want to take the option of Long-Term ABX, you are either going to find some ways to get insurance to cover prescriptions and a few doctors appointments because they won’t cover it all, or you will pay for ALL of it out-of-pocket.

3. Herbs, Homeopathics, Frequency-based Medicine, Energy-Medicine and everything that Stephen Barrett will do backflips to write up on his quackwatch.com!

This is the approach I have tried first.  I changed my diet completely. I take supplements: herbs, vitamins, minerals, probiotics, glandulars and homeopathics.  It has done me a ton of good!  I continue to modify my diet based on my needs (and whims 🙂 ).  I even have done a little oral chelation, under my LLMD’s direction, of course.  There is only one thing I ever did without telling my LLMD:  baking soda, which actually works.  I told him after I had done it (maybe sometime I can tell you the story)!  I have used homeopathics with success, and have some amazing stories to tell.  I use mild Hyperbaric Oxygen therapy when I can get to my LLMD’s office.  I have had one Neural Therapy treatment.  I have rested on a Bio-Mat… I just don’t have the money to own one!  I have used Rife Frequencies with some success, but am not organized enough myself to keep up with it :).  I do chakra work and other energy work.  I see the chiropractor on occasion.  I get acupuncture and press on my pressure points.  I stretch and exercise, mildly.  I use Emotional Freedom Technique and Healing Codes when I can remember to.  I do a little Yoga and meditation.  I regularly utilize various forms of biofeedback testing, which guides me for the protocol I follow.  I can tell you the success I have had from it all, and it is more than the placebo effect!  They each work differently, some are more effective than others.

You’re Really Going Quackers? Yes I am 🙂

I’m not completely better .  I’m not even well right now, as you have seen.  This is a journey, and a long one in most cases.  Oh, I would love a one-day miracle-cure, and I invite it with every ounce of my being!  But I also realize that I have a lot to learn.  And in the end, Lyme is a gift, an opportunity to grow.  Once I have learned what I need to from this, it will be harmless and will simply go away.

I have nothing to lose.  I don’t really have a productive life, other than participating in support groups.  I don’t have any money.  I don’t feel good enough to keep going without doing something for myself.  The only way things can get worse is physically, and it will go there without treatment anyway, so why not try?

So, I plan on combining options 2 and 3:  long-term antibiotics, if necessary, as part of my holistic wellness plan.

I’m basically going to follow Dr. Klinghardt’s protocol for Lyme disease with the things my LLMD does.  Why not? Obviously “Option 1” is no option at all.  I’m broke to start with….so I don’t have anything to lose monetarily.  Quacks don’t have much money to gain on me anyway.  My broke status will filter out most of the money-driven slobs, and thankfully I usually smell trouble coming.  If they’re a kind of trouble I need to learn about…it may be worth the few hundred bucks they make off with!  At the worst, I’ll have well-intentioned idiots treating me, and at best, I’ll have a true genius and some real success!  I’m young, so I have some time to try things, Lord willing.  If they don’t work, they don’t work.  Going the conventional route doesn’t offer any help.  If they do work, I’ll get my life to have in the first place!  And hey…if this supposedly “quack” stuff actually works…I’m a good case study.  It helps a lot to know for myself that the alternative things have proved effective, at least to a degree.

So yes, I’m going “Quackers!” Woo woo, baby.

*I use this for plausible citation only.  I do not support the Senate Bill.  Fellow Lymies may get upset with me, but the government should not be in healthcare, and they should not be funding research.  Let’s not get into the whole issue that Lyme came out of a government research laboratory (please read Lab257, this is real, not just a conspiracy theory, see declassified US documents for proof), ok….  The only place where government should have anything to do with healthcare is making sure the people and organizations uphold “Thou shalt not kill.”  I’m all go for independently funded research!!!  ❤

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