Archive for the Lyme Log Category
What does it actually look like? Or, let me be more specific: How is a universal healthcare system different from the way that an HMO functions?
With an HMO the bar is set pretty low for what kinds of treatments will be covered, what kinds of tests can be ordered, procedures, etc. Step out of network and the world is your oyster. A physician can order any tests they want based on their clinical diagnoses and it is the physician that manages the care of the patient and not the insurance company working within the strictures of a managed care plan.
So if the government now makes healthcare something that all Americans can get, what does that kind of care look like and how would it actually work with a privatized system? Will not the government adjudicate the treatment plan rather than the insurance company? The theory seems to be implausible and seems to transfer the problem of managed treatment from the insurance company to the government.
Think of it this way. We can give a piece of cheese and a loaf of bread to every person in the world once per week with eight glasses of clean water to drink every day. If we can do that (and we sure can somehow with rally low cost it would seem) can’t we officially officially say that we have now solved world hunger since everyone is now eating something within a seven day period and drinking enough clean water every day. Does that really solve the problem? I guess it depends on what you might think a good resolution to the problem actually is. I am not convinced that a managed care system that forces physicians to answer to an agency to administer proper care is all that great - government controlled or otherwise.
Here is a personal story, I have a few, but this one stands out. I had clear Lyme disease symptoms sans arthritis last summer. I had the rash, chronic fatigue, and vertigo. We caught it nice and early before the real bad stuff could take hold. We went to the ER and my blood titer came back negative. Great. We know that to be the case with Lyme. Blood titers have a habit of not proving positive which is why you default with the clinical diagnosis. The ER doc rightly put me on doxycycline for two weeks which is the standard treatment among many infectious disease specialists. But this was only “precautionary” since the blood titer was negative.
So I saw my PCP a week later and to our amazement the rash started to quickly dissipate upon introduction of the antibiotic. The doc was confused that the blood titers were negative and that I had no arthritic symptoms. Also, we are not in one of the Lyme hotspots so probability was not in my favor. So he ordered some more cookie cutter titer tests as a “precaution”. Meanwhile my symptoms were actually worse soon after anti-biotic treatment (which I later learned is called the Jarisch-Herxheimer reaction - another clinical confirmation of Lyme bacteria).
So these test came back negative too. He then tested me for HIV and other things. These were also negative. He was not convinced that it was Lyme even though I presented classic symptoms including the rash. His next stop was an RA specialist and he was not all that approving of my going out of network to see a Lyme specialist (the only two I found were about three hours away). He also said chronic fatigue was a possibility. Of course the message that I continued to tell him was that none of these symptoms existed before the rash in the first place! So yes, the doc may be ignorant. But his demeanor was telling me a different story that I had to learn later…
Screw the HMO. I went to a specialist. The specialist refuses to be a part of an HMO because they would not approve of tests he believes will root out the cause of the problem rather than look at the symptoms. So I took a battery of tests. Two months later he gave me the picture of one one of other possible co-infections. This was bartonella which would also explain my weakened immune system. Photographic evidence this time.
If I had stayed in network I could not have had these tests ordered because the initial titers were negative. They would never approve if it and so, the doc would not even think about it. It goes beyond the question of whether or not my PCP is just ignorant. Without privatized care, we will cripple our ability to perform these kinds of tests enabling us to perform the best treatments - an ability that insurance agencies in the context of HMO’s has crippled well enough it seems.
It seems that improving our current privatized system is the best route to go. Not sure how, but I don’t like the alternatives that liberals tend to espouse.
It has been a long time since my last Lyme Log post and a lot of that has been because there have been no spikes of much of anything other than a consistent yuck.
Since January, I have had a sore, tenderness that feels like a mild case of strep throat right around my lymph node in my neck on the left side. It never goes away. I have finished another round of doxycycline and am still taking levaquin. If strep was in my system it would have been rooted out a long time ago.
My rib area right around my spleen still aches once in a while which is no fun either.
With a compromised immune system, I am wondering if these two things are related to it. They are somewhat new symptoms, especially the throat, but the spleen and lymph nodes are crucial for immunity.
Here is another new one: when I wake up or get on my feet after being off of them for a while, they hurt. It’s like a cramp after you hit the gym hard after having been out for a long time. You know how you feel when you wake up - your muscles tightened up like a drum. Well, that’s my feet every morning or every time I walks away from my desk.
The fact that I pulled my back out a couple of weeks ago does not help much at all, but that’s probably unrelated.
I mowed half the lawn today; my wife did not want me to mow any of it. I took a two hour nap and I am dizzy and tired anyway. Before the tick bite, I would spend a Saturday mowing the lawn, then digging out trees, maybe vacuuming or doing a few loads of laundry as well and feel tired, but that “good tired” after you just accomplished something. Now I am just tired, pretty much always and usually after 2 pm which I call my “wall”.
I had about 15 vials of blood taken about two weeks ago for my doctor visit on May 5. Then we can see where I am. But this truly is a funky, hermetic, slippery, sneaky little disease that is a little bit different than the flu or something where you pop a few anti-biotics and are fine in two weeks. Comparing the two is like comparing the armies of Grenada and the U.S.
People always ask me if I am feeling better. It’s hard to tell them that some days I feel almost OK and others I feel like sleeping for a week.
I played my last gig with my little band Parasomnia last night. I will be taking a hiatus from music in order to heal up more quickly from Lyme disease which I have been fighting since last July. My two sons are now full-tilt toddlers. I also must finish my dissertation work - it has been taking too long. Staying out until between 3 and 5 in the morning then waking up at 7 to deal with toddlers is not something I can do any longer.
It was fun. We played for four hours with only two short breaks. We rattled off about 40 tunes and skipped only a few off of our repertoire. The moment that kind of surprised a motorcycle gang that was there and actively requesting was when we went from Motorhead into Helmet, then dropped into Primus’ version of “Have a Cigar” straight into “Walk” by Pantera. We kicked the night off with a little “Sweet Emotion” and ended with Mudvayne’s “Happy”. I played well after having no practice at all for about six weeks. My hands are killing me today with more blisters than I can count - at least that’s what it feels like.
I have one more gig I am doing with them at a new club in Johnstown, PA this June so that they don’t have to cancel the date. I will probably pick up the sticks again in a year or so and will try to keep the chops in shape in the meantime. I’ll be back in the scene some day again!
Here is the logo I designed for the band.
This Monday I went back to the Lyme doctor and went over my tests. Everything came back back negative which of course is not a surprise since titer tests basically suck when it comes to many vectors like Lyme and its various co-infections.
However, one thing did come back positive: bartonella, spp. Nope. It’s not a pasta. It’s the same thing that causes illnesses like Oroya fever, trench fever, and … that’s right … cat scratch fever. This time I actually have the picture to prove it. What I also found was that this particular bacteria has two of the biggest symptoms I have associated with it: fatigue (which is par for the course with many of them) and it is immuno-suppressant which makes sense out of my freakishly low NK cell count.
Then came the part about treatment. My wife asked him what the progress would be like and how long this one might take to treat. The response was, “This is one we do not know a whole lot about. And, well, they did not build Rome in a day.” There are basically four kinds of bartonella that cause problems for people. We do not know which this is yet. So here is what I will be filling my veins with over the next few months:
- Levoquil (200 mg)
- Doxycycline (200mg)
- Vitamin D supplements
- A probiotic at night since every bacteria good and bad in me will be dead
- Magnesium since the Levoquil has a history of causing weak tendons and therefore rupture
It also means that I will get a nasty Jarisch-Herxheimer reaction all over again. This means that I will feel a hell of a lot worse before I get better - for the third time now. It’s like those commercials for different things like dandruff shampoo, Feel that tingle? That means it’s working! Super.
The good thing is that we have worked out a plan for me to get rest around this kid/dog crazy house. I am sleeping in the guest room a few nights a week and letting her fetch the night crawlers when they freak for no apparent reason. I am thinking that after a long day of course prep, my full time job responsibilities, teaching a new course, and then getting home at about 7:40 that tonight is a good night for that.
Here’s the rub. My primary care physician (PCP) was not going to recommend I go to the Lyme doc and he was going to start looking for RA and chronic fatigue issues. Now many Lyme docs will assert that chronic fatigue is probably an infectious disease that has gone undiagnosed. I am kind of with them after getting indisputable visual evidence of one of the bacteria that is causing me pain. Time to go back to my PCP with the picture I guess!
Now I consider myself to be of above average, statistically at least, intelligence and pride rational deliberation over passionate engagement with things. I like evidence and always like to understand why a claim is substantiated and on what grounds. But even with all of this, I can see how mis-diagnosis can make anyone literally go nuts or question their own sanity. The only thing to keep me even keel was the clear fact that things became physically different for me, radically different, after I noticed the EM rash - the dead give away for Lyme - on my arm. That is hard evidence enough for me to know that my suspicions were not only founded, but that I could not trust the opinion of my PCP with this anymore. This visual evidence does a lot to confirm what I suspected and therefore, empowers me a bit more to trust my instincts and how I have been pursuing verification that those instincts are at all founded in something reasonable.
Not everyone who is sure that there is something wrong with them despite what doctors and tests tell them to the contrary. This is something quite clear. If insurance would cover better tests that are all available in this country of free enterprise, then perhaps the popular diagnoses of certain symptoms would go a different route in many cases. Now that does not mean that it is all Lyme as some will tell you. But it is neither all hypochondriasis either as many more will simply tell you.
In May I have more tests to review. This time we will look at T cells again along with iron levels and something called a spectra cell which will get sent off to another lab. This will look inside of the cell structure to give another view of my body that an HMO would probably think as something frivolous.
Limey…blimey…
Most of this comes from an email I just sent my sister. It is the first occasion I have written about the sate of my spirochetes in a while. I guess I unconsciously thought that giving them the “cold shoulder” would offend them so much they would just leave and clean the place up on their way out to get it spic-’n'-span. But to my dismay, it turns out that they have vowed, like the Chinese would, to fight for 1000 years if they need to. Bastards.
I have ignored the old Lyme updates, but this week has sucked so here we are, and here it still is…
I am basically sleepy all of the time. I also have a foggy brain at times (although it’s debatable that I was foggy before this and now it’s just exacerbated a bit 
My spleen has been hurting for the past couple of days which is not pleasant. And with my two young boys waking up all night long - both of them this week - I have been very tired, very tired.
So I need to cut back life and rest more - somehow. I always have oodles of vacation time, and I will start there with scheduling half days and/or days off for a while. My spleen is telling me that this is a good idea. Well my wife also tells me this, but my spleen is “speaking” in a much harsher voice today.
What’s bothersome is that for other illnesses that require antibiotics, you take them for a few weeks and then it goes away. With this one that does not seem to be the case at all. It recurs. Some days its OK and you think you are rounding the bend, and then BAM! the spleen hurts and I am dizzy all over again as if treatment never started.
But I am not ruling out Chronic Epstein-Barr (CEBV) yet. I know the initial blood panel for it came back negative, but man … it’s the spitting image of it in a lot of ways.
The woman who watches the nursery at our church said that her daughter had EB and had all of the same symptoms I have right now: exhaustion (chronic fatigue - let’s call the spade a spade), big-ass spleen and liver (the latter not from the “illness” of my family heritage which is drinking it to a robust size), occasional nausea and decreased appetite, etc.
Case in point. I have always said I have never felt as awake since I had that really serious case of mono when I was 8. EB is the root cause of chronic cases of mono. So my intuition is buzzing a bit after talking to her - especially now that my spleen hurts again.
So we will see how things go today, but I might just be making an ER trip this weekend to have it checked out. Not something to mess with at all you know?
I do have some time off coming up here to visit with family - hopefully very low-key and guilt free times there. I also need to get some kind of a life plan together.
My sisters and I are all my father’s kids. We work too much and are too motivated to do everything for everyone else but ourselves. Overall I have had a good year with looking out for my health though. Had a couple of wellness visits, saw a psych for the first time ever to get my mood right, etc. This was unexpected and I need to figure out how to move forward with it as a permanent resident so I am not being cavalier with it through ignorance (my stance the last two months - take the pill and move on), and not letting its effects totally wreck my life at the same time by not taking care of bid-ness when it needs to be taken care of.
My sister has rheumatoid arthritis. Very similar to Lyme and often a misdiagnosed case of Lyme. There you need to rest on a regular basis or the RA starts to act up. Rest now, or it just snowballs into a serious problem. Same here I guess. Rest when I don’t feel the need to, so that I don’t really need to rest via “pass out in exhaustion” later.
So the moral is that I have time coming where I can start putting together a life plan of sorts since this does not seem like something that goes away like strep throat.
If anyone says “Doxy will fix it” to you they are lying. It does not - at least right off. It goes deeper, and unfortunately we do not know how deep it really goes or how to dig it out permanently. All of this because of a little near microscopic tick in the Wal-Mart mulch. My cypress trees had better never die!
Two circles and a snap!
This is a new one. My blood panels came back negative which tested me for everything from classic Borrelia Burgdorferi which is the classic agent that causes what we call Lyme, to rocky mountain spotted fever, and Epstein-Barr! The latter is of some concern as is chronic fatigue since I have been experiencing a bad recurrence of mononucleosis down to the painfully big spleen and total exhaustion most of the time (the latter being a symptom of Lyme as well of course).
With blood panels like these, and these were rigorous, working only about 41% of the time with later cases of Lyme it it a crap-shoot to get positive serology. However - and this is the counter-intuitive part - my natural killer cell count was wickedly low. Mine came in at 18 and they say anything below 30 is dangerously low. The titers normally will reveal a higher killer cell count since the body naturally produces more of them to fight a given illness like a virus or bacteria. But like other auto-immune diseases like AIDS (and I confirmed HIV negative just to be safe) it appears that Lyme can reduce the natural killer cell count in later stages. Combined with studies that show that the bacteria actually cloak themselves in other cell structures, it’s a very hard thing to detect when it takes up its residence in your body. I should be at around 100 or so on the low end of what normal might be for a killer cell count which is my estimation of decent health based on the explanation of the results. So a count of 18 by any norm is pretty bad. Continue Reading “Low Natural Killer Cell Count” »
There is a strange thing that happens when you begin Lyme treatment - you get worse. It’s called the Jarisch-Herxheimer (J-H) Reaction and it actually makes sense. As the anti-biotic starts to work its magic on the little spirochete demons that have invaded your body, they die and break off from your cartilage, nerves, and brain where they have been comfortably been fruitful and multiplying. This releases more toxins into your blood stream, and boy do you ever feel it.
So what happens is that as of yesterday and a little bit less the day before my body started to react with all kinds of intestinal joy. No doubt this was also part of the intense doxycycline flowing through my system. Then I have begun to get more and more exhausted. You know, just like back in July when I was on doxy as a “precaution” since the doc was rather clear about his opinion that Lyme was not it. So why would I start to feel increasingly worse after taking antibiotics? Hmmm… Seems to be the opposite effect of the good old flu. Oh yeah, then there was the Erythema Migrans rash. But I’m not bitter. Continue Reading “Return of the Herx” »
Not one of those stressed out Mondays - even though I could have made it that way since there is always far more to do than there is time…
I felt OK this morning. Just OK. Right around noon my stomach started doing some ungodly twists and turns. Feels like my antibiotics have started to wage a serious war against the old spirochete invaders. Acidophilus - I think I need to take more of it or something. Doxycycline 1, Drew 0.
My spleen has been very sore the past couple of days. Today sitting is hard to do. A couple of times I stood up with my mouse in hand. Of course typing while standing does not feel extremely good either. So, pain in the hands versus side splitting pain - and this without any metaphor for laughter.
I have class at 5. One of my students walked in to ask me if I could read her draft. It hurts my brain to think about reading a draft right now.
I feel like I need to puke, but I know I won’t.
I need to sleep. I could totally pass out right now. Looks like it will be a short class. I hope I can find my brain soon. I lost it sometime on Friday and it has yet to return. Gotta pay bills sometime too… It’s all so hard today.
