Lesson 885 – Lyme Disease Thursday – Status Week 7

Last week I wrote about how Doc Holiday wants our “Bart kids” (2 are being treated) to be on antibiotics for the life cycle of a red blood cell (120 days or roughly 5 months.) The reason for the change (it had previously been for 2-3 months and then a break to see how things were progressing) was because Lyme docs now believe that Bartonella “hides” parasite-like inside the red blood cells, and if you don’t continue treatment until *all* the red blood cells turn over then you risk re-infection (or more accurately continued infection.)

Bartonella in the blood

Bartonella in the blood

In doing some internet research on Bartonella, I found this little tidbit: “The Gram-negative bacterial genus Bartonella currently comprises roughly two dozen identified species, about half of which are known to infect humans.”

So there are roughly one dozen species of Bart that can affect humans and most docs, if asked what Bart was, would say it’s that yellow skinned boy on the Simpsons. It borders on criminal.

The other thing I discovered about Bartonella is that it is a gram-negative bacteria.  When looking at microscopic photos of it, it looks like small round balls. In the world of microbiology these are called Cocci. Another very famous and devastating gram-negative (diplo) cocci is Gonorrhea. I’m not sure that that means anything, but when people constantly (myself included) compare the Lyme spirochete to the Syphilis spirochete (another STD) I find it all very interesting.

See those little corkscrews?

See those little Lyme corkscrews?

Some of our most devastating illnesses have a lot in common.

Which would lead one (me) to believe that both Lyme and Bartonella *may* be sexually transmitted just like Syphilis and Gonorrhea. We already know that Lyme (and presumably Bart) can cross the brain and placental barriers; it would stand to reason that it would also be found in secretions, and saliva, wouldn’t it?

Oh my kingdom for a micro-scope.

In further related “research” work, I asked Doc Holiday about dog ticks vs. deer ticks. He told me that although he’s tried, he’s never been able to isolate the Lyme bacteria in dog ticks HOWEVER, please remember that deer ticks don’t just stay on deer and that a tick on a dog could very likely be a deer tick. Moral of the story, pay attention and treat all ticks as hostile agents (and also, remember that Doc Holiday is a doc and not a researcher.)

With regard to my week treating Lyme, I’m still struggling with the antibiotics. I have good days and then I have some bad ones, there doesn’t seem to be a pattern but I’ve resorted to drinking a bit of Coke (even though I don’t allow the kids to drink it) to settle my stomach when I get *that* feeling. I feel like I’m giving in to junk food but it works so I’m going to continue.

If ever there was a case of “do as I say and not as I do” with the kids this is one of them.

Even still, I can’t complain (and someone this week gave me a book with that very same title) a little bit of queasiness and some vomiting, is a small price to pay for such tremendous pain relief. Also, I fully expect my Lyme to come to an end (or at least be managed), there are so many people out there who are worse than I am. I think about them every day and send out healing wishes to the world. I am humbled by their struggles.

Interestingly I also had a conversation this week with a woman who works with a naturopath. Her son had also had Lyme (again we live in NH – pretty much everyone has this.) During our conversation another woman who was listening asked me how long I had had my Lyme infection.

That’s a great question.

I grew up in Connecticut, not far from the town of Lyme. We always had dogs and they always had ticks. Being bitten by a tick was as normal as being bitten by a mosquito.

Then I moved to New Hampshire and with dogs and hikes, ticks again were more normal than not. I started complaining of tendonitis, joint, and muscle pain two years ago, but it was a slow progression. I remember a summer “flu” that took me out for 3 days (and which no one else in the house got) 3 years ago. As far as I know, I’ve never had a bulls-eye rash until this summer (that mysterious “shingles” thing)

So who knows when I was infected? It’s possible I’ve carried Lyme for years and that something in the last few years triggered a reaction (perhaps the stress of a son who was close to dying because of Lyme complications?)

My point is that I think if your body is strong and healthy you *might* be able to hold Lyme back (just like you might be able to hold back many diseases), however, if you have some sort of weakness or systemic stress it’s going to pop out.  I personally think antibiotics are necessary for initially treating Lyme (but then as a clinical microbiologist what did you expect) but (and that should be “BUT” all in caps) I think that after you have been treated with antibiotics that you then need to build your body and immune system back up to keep things in check. I’m not convinced that years of treatment are what you need but then I fully admit that I’m not there. Ask me in a few months if I think only 3 months of treatment did the job.  Trust me, I might be hard-pressed to *not* go back on antibiotics if my symptoms returned.

I do, however think that if you have Lyme (or cancer, or any other disease) then you absolutely need to build up your immune system and body to allow your body to do its job in fighting the disease. Ideally you should have been doing this already before you even thought about taking a walk in the woods.

Supplements, good food, water, rest, and exercise.

It’s a tale as old as time, but one that we all seem to keep forgetting (just do yourself a favor and go easy on the Coke.)

***

Thank you all for your comments and discussion. I read every single reply and find much value in your experiences.

Disclaimer, this is an account of my Lyme symptoms and treatment, it is not intended to be used in the treatment of anyone else’s condition. Please consult and work with your physician if you think you may have Lyme.

Let me know if you have any questions about my Lyme symptoms and/or treatment, if I don’t have the answer, I’ll find someone who does.

***
Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

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9 Comments

Filed under Life Lessons, Lyme Disease, New Hampshire, Personal

9 responses to “Lesson 885 – Lyme Disease Thursday – Status Week 7

  1. fngrpntr

    Sorry to hear you’re still struggling to keep the abx down. I vote for coke, if that helps! But have you also tried making a STRONG ginger infusion (simmer it), strong enough so that you only need to add a little to seltzer water, then sweeten with honey, stevia, or xylitol? Might not be as effective as coke, but maybe worth a try.

    Have you read the journalist written book called “Cure Unknown”? It’s well-researched & full of facts, yet also reads like a mystery novel, with the facts interspersed with a family’s story. I couldn’t put it down.

    Anyway, that is where I learned that there are 50-ish varieties of Lyme, with only some being virulently infective. In fact, it might be that some of the varieties that cause the bulls-eye rash are a self-limiting disease that goes away on it’s own (not all, though, since my husband looked like a spotted cow with giant bulls-eyes all over, and it took him a year in bed to recover).

    Also, a poor immune system surely sets one up for a chronic version of the disease, but that can happen with a good immune system, too, as with your children. Some variants of Lyme, especially, is known to “trick” the immune system, essentially rendering it ineffective.

    • Wendy Thomas

      I’ve tried ginger ale and ginger candies which didn’t really help. I’ll look into the Ginger Syrup.

      I did read Cure Unknown (it was the very first book Doc Holiday suggested I read when my first kid was dxed with Lyme. Very well written and a must-read for anyone who has Lyme.

      I know that Lyme is tricky and I know that in some cases (especially where it has set up shop in the brain) that it might not ever be eradicated, but I think that you’ve got a better chance if you also strengthen your body along with taking antibiotics.

      For the record, I’m not at all opposed to antibiotic treatment for Lyme disease, I think that we need to attack the disease on several levels, antibiotics being a key component.

      Wendy

  2. Lenore

    So very interesting. I had Lyme back in CT in 2000 and had 1.5 yrs of abx, treated by a very well known LLMD. 10 years later my joints are painful as all get-out again and my rheumatologist hypothesized that the Lyme put my immune system in hyperdrive so it triggered an autoimmune response of rheumatoid arthritis. He put me on steroids and I felt 95% within 12 hours. I’m currently off all meds and only get that achy joint feeling when I’m fighting a cold or something. I try to live my life in a balance — not boosting my immune system further but not trying to run myself down either.

    And all my testing for both diseases were inconclusive — neither definitive nor negative, so everything was based on clinical presentation. Very frustrating from a patient’s point of view, I did learn to stop wanting a diagnosis and instead just be happy with declining symptoms.

    What a journey. I do hope yours ends quickly and with the best results possible!

    • fngrpntr

      Interesting — after 2 yrs of tx I can tell that the acute illness is gone (fatigue & deadened heavy limbs gone, no brain fog), but my joints now hurt more than before tx. Did the tx send my immune system into hyperdrive? Also just got allergy testing & am allergic to just about everything, including half the foods I eat, which was not true just a few yrs ago. Is this, too, a result of hyperdrive immune system?

      • Wendy Thomas

        Well that is interesting. I do know that with my kid (and myself right before I was diagnosed) it seemed to be “one thing after another” first a rash, then joint problems, then breathing problems, nerve issues, spasms, memory loss, the list went on and on.

        Was it that the Lyme had reached a saturation point in the body or was it that it hyper-stimulated the immune system causing it to go crazy?

        I don’t have an answer for that, only more and more questions.

        Wendy

    • Wendy Thomas

      I’ve recently been reading a lot of reports about auto-immune thyroid complications with Lyme disease. It seems that chronic Lyme sets up your body for an entire host of auto-immune reactions. Your doc may be right in saying that your immune system is in hyper-drive (another way to say that you have an auto-immune disorder.)

      The real question is once those reactions are initiated, can they be reversed?

      I tend to think that they can, provided you do a lot of work in correcting deficiencies, but then I’ve always been be a bit of a Pollyanna.

      Wendy

  3. For what it’s worth there is one sure-fire method (the only method I’m aware of) to accurately measure the immune system. That is by meauring pH (I test my saliva). I prefer the Alkalive pH test stix as they are very repeatable, provide a double test and are easy to use (versus the many brands of rolls of pH test tape that are like Scotch tape in dispensing). You can “calibrate” what you are looking at by testing the water of 99% of city water systems in the country. They all attempt to keep tap water exactly at a pH of 6.8. At 6.8 it is BARELY acidic and that minimizes the sediment, calcium etc. that can build up in water pipes. A pH of, say, 7.5 would be a bit healthier but then water companies as well as homeowners would have significant buildup of sediment in pipes. IMO every doctor should check the pH of every patient just as they check blood pressure because pH is the best all around measurement of “general health” there is. But most not only do not test pH few know much about it. Many VERY healthy people as well as members of ALL American Olympic teams test their pH daily. If they notice a slight drop in pH that tells them something is attacking their immune system. It then shows up as a cold or ?? a few days later. The US Olympic Team says “pH is an early warning alarm” of a potential illness on the way. The person then gets extra rest, vitamin C etc. until their pH is back to normal. A newborn baby begins life with a pH of about 7.3 then as the baby becomes an adult it is well into the sixes and, if not treated, drops below six in old age causing an unnecessary drop in general health. A low (acidic) pH often coincides with a below normal body temperature. Fortunately, that is easily treatable. As a person’s body temperature returns to 98.6 their pH almost also increases resulting in overall better health, more energy and more stamina. Alkalive pH stix are sold by Amazon and hundreds of other retailers. Best regards, Gary

    _____

    • Wendy Thomas

      Okay, I’m going to get some strips and test my PH. This is an interesting comment and I’d like to see how it plays into the picture of Lyme.

      Wendy

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