Insights from Camp Kinglhardt

When I was diagnosed with late stage Lyme disease and facing the prospect of treatment, I basically saw two paths to choose from: Horowitz or Klinghardt.

Each protocol represents the thinking behind one of the leading Lyme doctors in late stage treatment. Now, of course there are many more options than just these; I’ve come to learn about things like mild hyperbaric oxygen chambers, ozone, bee venom therapy, cannabis oil and others. But I would still argue that the Horowitz protocol and the Klinghardt protocols represent the two most common treatment options for Lyme.

Horowitz protocol, as I saw it, was the blunt heavy hitter. Using long term, high dose antibiotics in delicate combination with each other, this protocol goes hard after the infectious load. Lower the degree of infection, and the patient improves. Ultimately, the goal is to get the infectious load down low enough that the patient’s own immune system can keep the infections in check.

Klinghardt protocol, as I saw it, was analyzing a long list of body systems and heath attributes and one by one addressing each item on the list to bring the body into homeostasis so that it was more equipped to fight the infections on its own. A Klinghard doc may also use herbs and other natural medicines to fight the infections.

In the early stages of my fight with Lyme, I wanted to believe in a cure. I wanted to believe that all I had to do was clear up these couple of infections, and I’d be all better. Forever. And honestly, when I read about things people were doing on the Klinghardt protocol – removing dental fillings, moving out of their homes, eating intensely restricted diets, drinking water of only a certain PH, etc., I was overwhelmed at the prospect of all that change. No, I just wanted to keep as much of my life the same as I could, and just treat some infections.

Well, 15 months into treatment, I am a bit wiser, a bit more open minded, a bit more patient and a bit more willing to change. While I’ve made a TON of progress with my Horowitz treatment, my mind has shifted somewhat in recent months. A few of the revelations I’ve had are around:

All of those mind openers, combined with the healing plateau I’ve hit on my current protocol and slight backslide I’ve had in recent months, has me opening my mind to the Klinghardt protocol somewhat. And since a close friend kept raving about her Klinghardt trained doctor, I thought I’d give a pop in for a second opinion on these challenges I’m having lately.

The appointment was very different than those with my current Lyme doc. We spent most of our time in the two-hour appointment muscle testing me to determine which afflictions are currently present in my body, and what reactions I’m having to my current meds.

The good news:

  • All of my organs seem to be doing very well, including liver and kidney
  • My gut also is very healthy (a relief after 15 months on antibiotics)
  • Lyme and Bartonella did not register (I am on treatment, which may be why)
  • My body seems to be enjoying ALL of my current medicines, none are blocking my healing
  • The doc said my tattoos are unlikely causing any trouble and didn’t seem concerned about potential metal toxicity

The bad news:

  • The fact that I have a root canal tooth on my right side and all my symptoms are primarily right sided may not be a coincidence – that tooth is on notice.
  • My lungs tested poorly due to a cold I’m fighting (neat that even that registered)
  • I tested positive for a coinfection I had never heard of, and can’t remember the name of
  • I tested positive for some mold exposure

This doctor, Dr. Z., ordered  some follow up blood tests that included the shoemaker mold tests, CD57 scoring, copper/zinc ratios and indicators of MARCONS infection (an antibiotic resistant staph infection that commonly lives in nasal passages). Since I was low on B12 in the bloodwork I brought her, she is also testing B12 and ferritin to see if I’m anemic. At my follow up, we should have a clearer picture of everything that’s going on.

But overall she was very impressed with my ability to handle the antibiotic protocol, she said it’s obviously working very well for me and she suggests I keep it up.

She did some Perineural Injection Therapy in my back for pain relief (which worked RIGHT away) and she promised to do B12 shots next time I see her.

For now, I’ll sort of work both protocols. My Horowitz protocol will continue to chip away at my infectious load, and my Klinghardt doc may be able to address some of these other factors that may be holding me back. I’ll of course keep you all posted on any juicy developments here on the blog.

Happy healing everyone!

K

Treatment Recap: Month 15

As you’ll recall, I’ve been in a bit of a plateau since the end of month 12 (May, 2016)- a high pain plateau at that. Blech. I reported last month a long list of things I was going to try in month 15. I had been convinced that something would crack the nut. The list of treatment changes included:

  • Taking Cholestyramine as a toxin binder every night
  • Taking Methylation Assist Liquescence then Methylated Folate to open detox pathways <– didn’t tolerate this at all
  • Drinking more electrolytes to improve hydration
  • Using L-lysine supplements to fight viruses
  • Taking a multi-mineral w/ zinc to help correct any imbalances

Unfortunately, none of them seemed to help at all. I’ve gotten worse still in month 15 with my symptom list of two expanding quite a bit. In fact…

Month 15 Symptom List

Old:

  • MAJOR muscle issues including spasm, knots and pain
  • Ringing in ears

New:

  • Rather severe but episodic tremors in my arms and legs (especially right hand)
  • A couple days of irrefutable exhaustion
  • Light headedness upon standing
  • A few days of aching pain behind my eyes
  • Occasional plugged ears / mild head pressure (worse on right)
  • Early waking and bad dreams
  • A few days of bartonella foot pain (which had been gone a year)

While the list is quite a bit longer, I’ll emphasize that most of this feels pretty mild… except the back and hip area muscle pain which I find very debilitating. And admittedly, the tremors are pretty scary looking. But the rest was noticeable but not problematic.

My regular Lyme doc tells me this is all just a bartonella flare – perhaps my summertime meds that let me play in the sun just weren’t as strong as those I’m on in the fall and winter. As such, it’s time to go back on the big guns. Changes for month 16 will include:

  • Going back to Doxycycline (byyyye sunshine!)
  • Adding Zithromax
  • (Staying on Bactrim)
  • Pulsing antibiotics 4 days on, 3 off to maintain long-term efficacy
  • Treating with Houttuynia and Stevia herbs, which are apparently quite powerful

Now, this list of changes is all well and good, but this notion that I’m worse off because my summer meds weren’t as strong doesn’t sit super well with me. You see, that muscle pain and terrible spasming started in May, when I was still on my “big guns” medications. So I can’t help but shake the feeling that something ELSE is going on here. To make sure my bases are covered, I’m seeking a second opinion from a Kinglhardt trained doctor this month and hope to have some additional info to share really soon.

Now, I think perspective is everything in a long-term battle like Lyme disease. And while I am not doing as well as I’d like right now, I am still doing a LOT better than I have been in the past. This month I was able to:

  • Work full time and then some (including a re-org to a new boss and team, stressful!!)
  • Buy a house
  • Buy a car
  • Buy some major appliances (more stressful than I’d have thought)
  • Take a weeklong work trip to Chicago
  • MOVE
  • Take an adventure vacation to Banff National Park that included multiple days of strenuous hiking

Those last 3 things happened in the span of 2.5 weeks even. Oh, and I survived a breakup (with Lyme yet again listed as a major factor, even from a guy who’d claimed to be so fine with it… I’m trying hard not to develop a complex here.) ANYWAY. This month was a lot. And a year ago, that probably would’ve destroyed me. But here I am on the other side of that mountain of STUFF feeling just fine. In fact, the weeks that I was moving and hiking were the weeks I felt the best. This level 7 or 8 pain I’m in at a desk basically goes away when I’m on the move. Now if only I could find a job hiking that paid me what I make in the office, huh?

It is worth noting that almost all those new symptoms listed above came on before this crazy busy period, so while I’m sure some more rest and less stress would’ve been beneficial, I can’t really blame it for the relapse I’m having. I think it’s simply a continuation of whatever began in May.

I have hope that month 16 will bring more healing. Between the heavier meds and the additional insight I’m bound to get from that second opinion, I know something will bring me more relief.

And even if it doesn’t, you know what? I’m ok. I’m still living my very best life, I’m still my best self and I have gratitude every day for what I’m able to do in this somewhat broken body of mine. And this is the beauty of perspective, isn’t it??

Wishing everyone happy healing.

-Karla

How to fly comfortably with tricky ears 

Some of you know that this whole disastrous health journey started for me with a plugged ear and then total hearing loss on my right side. To say I’m a little uptight about the health of my ears as a result of that is an understatement. 

Here in month 15 of Lyme treatment, I’m (not) enjoying a return of a LOT of old symptoms. And one of them is a pressured right ear. It plugs up frequently…. sometimes because of a weather change, sometimes because I need to rest, sometimes for no reason at all. It’s accompanied too by a swollen, plugged up sinus on the right side and usually some mild right side jaw pain. 

I wish I understood the cause of this symptom set!! But for now I’m just coping with it. 

Over the almost 2 years now since my hearing loss, I’ve learned some good tricks for traveling comfortably with ears that don’t regulate pressure well. 

Here are my best tips:
Step 1) Use Afrin or another decongestant* an hour before your flight.

Step 2) Pop in a pair of Ear Planes pressure regulating plugs after the plane door closes.

Step 3) If ear plugging occurs on or after the flight, use your handy dandy Otovent – blowing up the balloon with one nostril while you plug the other will help your ears regulate.

(All goodies easily found on Amazon.)


* A note about thyroid disorder and decongestants:

Most decongestant have warnings about thyroid disease. And it’s legit. You see, when I had that hearing loss in 2014, I was popping Sudafed adound the clock hoping to pop my ear back open. And indeed it wasn’t long before I had full on symptoms of hyperthyroidism (racing heart, tremors, over hyper, anxious, weight loss, etc.) Of course at the time I didn’t know it… I had never learned even what a thyroid did before.  I thought I was losing my MIND! Eventually, months later, after my thyroid dumped all the hormone it had, I swung hypothyroid and that’s when I was diagnosed with Hashimoto’s which I’m still treating now. MY POINT IS – be careful with decongestants if you have or at risk for any thyroid disorder. 

For this trip to Chicago, I chose to use Afrin instead. It carries the same warning but because it’s topical and not systemic, apparently the risk is much lower of full body reaction. And 24 hours after taking it I am indeed feeling fine. (Though my whole health picture is different now so who knows whether I was really at risk…)

Ok. Off to explore the streets of Chicago and this work conference I’m attending. 

Wishing everyone good health. 

-k