Wings 18k

Max vs. the "Andromeda Strain"

On May 27, 1997, Max took the battlefield with her bright shiny new siege crossbow and her second badly made suit of armor, never suspecting that it wasn't the spears of the Orkney's, or the (old, now illegal) weighted siege rocks bouncing at her feet, that she should be in mortal fear of...

Instead, it was a tiny 8 legged arachnid, about poppy seed size, known as a Western Deer Tick (we don't have Deer! They ride around on mice and chipmunks!), which could only have been attached to her throat for under two hours before it was found and scraped off.

To make the long story short (because I'm too tired to write it right now :( ), from the one tick bite....contested for years after and only grudgingly accepted by the State Health Dept. (which now has a Lyme advisory committee), I contracted Lyme Disease, Babesiosis, Human Monocytic and Granulocytic Ehrlichiosis' (that we know of... apparently they've discovered several new tick borne diseases in Calfornia since then, and I'm being retested for them, too)

At that time, there had been only 50 reported cases of human babesiosis in the US, mostly fatal, and had been recognized for less than ten years (in humans). Pretty much the same with the Ehrlichiosis (also called "rashless Rockey Mountain spotted fever", although I did have a brief rash at first).

By the time I located the health dept info on the web about them a few weeks later (Babesiosis was so serious it must be reported to state health within 24 hours of diagnosis), I could have died 3 ways with time to spare.

I saw my (now ex) MD two days after the bite complaining of a bad sore throat, brief spotty rash on my abdomen, and a "bug bite" that left a scab on my throat, but couldn't get antibiotics. Three weeks later I woke up with a nickle sized red ring around the scab from the bug bite, with three more at the nape of my neck in the hairline, and a couple of random red spots (dime size) on my right side. My doctor at the time, calling in the Infectious Disease guy from down the hall (who diagnosed me from the doorway as "That's not Lyme, the rash is too small, and you can't get it in California"... and stated a negative Elisa then would rule it out." He then pronounced that I had Pityriasis Rosea and told my doctor I would shortly be covered with red spots in a christmas tree branch pattern over my entire torso. (This was not a bad off the cuff guess, but in light of the severity of the possible OTHER reasons for the rash, he was utterly irresponsible in ignoring my repeatedly pointing out the "bug bite" the mini bullseye rash was centered over, my recent camping trip, etc.

Short story shorter... I was not treated adequetely for over 5 months after infection, basically allowing the nasty little critters free reign in an already immune compromised (from juvenile rheumatoid arthritis) body. Hence, I now have 5 brain lesions, spinal degenration, neurogenic affects on most organs, several of which are on the edge of official failure, and I just got through with a three week period where it decided I should try being blind and subject to heart murmers.

Update 5/2/04: You pretty much require a working thyroid to live, right? But a lack can be very effectively treated with a pill a day? That would be a silver lining to the Lil' black raincloud hovering over me with the confusing new symptoms over the past year

At the beginning (of competent treatment) with four months of 400 mg Q day IV Doxycycline (extremely effective vs. the eye symptoms) first with IV Clindamycin (bad), then Rocephin (huge improvement), we believe we wiped out the Ehrlichiosis' in year one (YAY!). I am still bringing in positive tests for Lyme infection and babesiosis (by PCR, Dot Blot Assay, Reverse Western Blot, Antigen capture, IFA and FSH Assay. Have never had a +Elisa for Lyme and consider that one completely useless). Unfortunately, with Lyme, a negative test only means whatever it was testing for didn't happen to be in that one sample.

The years following have been spent trying to get a hold on the babesiosis (a protozoa that causes malaria like effects and in one test can be imaged inside the cells it invades) and what has developed into a chronic late (tertiary) neurological Lyme infection (Lyme is caused by a deep tissue anerobic bacteria that is 20 times the size of the next largest bacteria found on earth (IE., the "Andromeda Strain".... oh, if only hyperventilating could kill it :( (although, hyperbaric oxygen chambers in conjunction with large doses of ABX seem to produce profound results in some Lyme patients). It can affect any and all body systems, but is recognized mainly for when it causes arthritis, carditis, or neurological symptoms.

But, ironicaly, that may not be what's had me hovering around what my family is afraid will be my deathbed this past year. What's done me in over the last year was a series of ER visits starting with an asthma attack (that was actually paralysis of some of my skeletal muscle system & diaphram possibly caused by treatment with Lariam (and evil, nasty malerial drug which was probably developed by nazi torture experimenters) and exposure to fumes of Behr High Gloss house paint on a 110 degree day....which led me to my long seanic tour of hospitals that apparently never heard of the Good Housekeeping seal of approval (aka "rat holes")

So, in the course of trying to not die, I've managed to pick up FOUR, count 'em FOUR, nosocomial (hospital aquired) secondary infections, with varying degrees of antibiotic resistance from "aw shoot" to "dear god, can we get that med approved from the CDC??"

Unfortunately, trying to get the correct antimicrobials/antibiotics to wipe these out has taken me off other treatments that were keeping my Lyme and (moreso) babesiosis in check.

Update 5/2/04: we've given up treating the secondary infections because being off babesiosis treatment for nearly two years has caused not only a full relapse but a vastly more advanced illness. Max is back on the other meds and is 1/4 way through seeing every type of specialist UCSD med center has on staff but believes (even before she was transported to a local ER rating a "3" on the Glasgow coma scale a few weeks ago (A nurse friend says they call those "fenceposts" when they come in.)) her already diminshed years-remaining has slipped over into, how many months and will she see next Christmas?

You'd think being sick was bad enough without having your ray of light ground out in the dust of grandstanding doctors who are contacted for their skill but feel they need to rediagnose her to their favorite pet illness instead of helping treat the real one .... and have to be convnced that yes, she could contract Lyme disease in California, and "post lyme syndrome" is a BS diagnosis given by doctors who don't wan to bother treating a big scary disease that doesn't get enough state or federal funding to properly research effective treatments

Don't even get me started on losing a competent home nurse over the Holidays and the two following ones her agency sent destroying two perfectly good PICC IV lines; and while I've changed to a 1000 percent better agency it left me with the current, extremely unacceptible, Grosshong chest tube, which we can't change over to the right one while I'm debilitated from secondary infections and which I won't suffer any longer than it takes to cut the thing out :-) and install a Bard port. (hmm...I think I could armor over a bard port..)

Update 5/3/04: We immediately started working on getting the Grosshong removed from my chest as soon as it was put in. In October, Peter managed to find and contact the head of vascular surgery who has been working with the AMA/CDC advising on implanted ports for the past 6 years. She and her staff install thousands of internal ports; and when we received the call out of the blue, she spent over an hour on the phone with me, then with Peter later, working out the details of having the evil Grosshong tube from my right, um, tender bits; and installing a new port (Bard Pass-Port Duo) so new it was not released at the medical tradeshow until a month after I received one. The doctor had never seen one, although it was very like all other bard Ports.... the difference was that when I asked if we could play with body sites, (I don't have a whole lot of shoulder/chest area to plus something like this under, and didn't want a box shaped thing visible through my skin with every tank top or cotehardie I wore.) She had never installed one other than the upper chest shoulder, but was game... so the catheter takes a hike from my lower right ribcage where the port is installed, doglegs over from my armpit, and finally enters my internal jugular (which feeds it directly above the heart). I think they could have left an inch or two of wiggleroom in the catheter (it causes an interesting effect when I turn/twist), but am extremely happy with it. I can pull the outer catheter hookup and have bare skin... shower, swim, etc... and no more miles of tape and garbage bags trying to cover the site as I had to when it exited on my arm.

Update 5/2/04: Well, we lost the better agency when they switched to short-term care-only due to cuts in Medicare/Medicaid. Max was in the ER 4 days later and has followed that course repeatedly. Without home monitering, her doctors can't keep up with her symptoms/condition and effectively treat by changing meds, etc. It' also led to 6-8 road trips to San Diego a month (250 miles RT) to see her lyme Dr, a specialist, or a decent ER in case of emergency; all with gas prices sky high and her ex being about 7-grand behind on child support

Donations to Max's Medical Fund will be made from vendors registered with (yeah, there's an extra "l" in there...I hope they can fix it quickly :). A portion of your purchases at hundreds of web-vendors (including Barne's and Noble, Land's End, OfficeMax) will be automatically donated to her fund once you've registered at the igive website. You will need to register (free) and shop via the vendors *through* the Mall at igive, but they have easy controls and a software shopping utility to easily shop at all the registered vendors

Her Lyme Doctor's non-profit clinic is a registered non-profit and is also in great need of donations (mmoreso, GRANTS. Or a very learge corporate gift. Grants, if an awesome grant-writer stumbles onto this page, PLEASE, please help her try to get money to keep the clinic open. We can do anything from experimental lyme-symptom relief, to chronic pain treatments. When Igenex was deveoping the stat of the art tests they have to help identify tick transported infection, I gave them my blood to use in their study and in the CDC testing of the Babesia PCR and Fish-Asssay. If that was all Dr Yang needed, she could have it. Unfortunately, SoCal Edison wants $$$ not blood (even though it may seem like the opposite after your first summer AC bill;) This is the only source of care for a couple hundred Lyme infected patients who have to travels hundreds of miles to find a doctor who believes you can get Lye in california...even after we convinced th state to believe it, the state heath dept hasn't been able to convince our Infectious Diseasespecialists to look at the current info on tick-transported infections)

The clinic has been hanging by a thread from forced closure (and the lastest attempt to stay open, the 2 new doctors who'd committed to taking over 2/3 of the practice and had already moved walls etc., have suddenly bailed out (got a nicer commercial job/location... and took her pain management counselor with them so now her pain patients have to find new help, also. Dr Yang doesn't get paid for her work, and neither do most of her office. The people answering her phones right now are patients who have come in to repay her care with their time, when she's lost professional staff to higher paying jobs. Dr Yang is not paid for her work. She seems to be there 100 hours a week for her patients (she showed up at a hospital ER at 2am to make sure they were writing the orders for my lyme treatment correctly when I was admitted for gallbladder surgery) and is supported only by her husband with four children) The clinic has never had enough funding to treat everyone Dr Yang has helped over the past 7 years. She's being forced to turn away but has always treated anyone who came to her for care, even if they had no insurance/homeless/have a high maintanance illness that chews up hours of her and her staffs time every week even when the patient isn't actually there (She was receiving donations to cover my extra care but that donor has run out)

The Pathogens and Antagonists of this story:

Lyme, babesiosis, Ehrlichiosis, from a lousy tick bite at Spring Potrero War (please note that there was another poitive infection a year later at the next War) You can find a decent paper about this issue published by the Society Chirurgeon osmewhere, although he erroneously states facts from an urban myth arison about lyme.. that they did testing and found you wouldn't be infected unless the tick was anchored 24 hours or more. Actually, the (real) Boston study found that MORE test subjects were infected at 6 hours than early uninfected; with more infected at 12 hours than at 6 hours, more at 24 hours were infected than at 12 hours, etc. There are also California studies showing that the ticks out here are infected in their salivary glands (not just guts), so risk of infection is high as sson as a bite is discovered it should be removed immediately. DO NOT use fire, alcohol, etc to incite the tick to pull out, this causes the tick to unload his gut into your loved one. Get a flat, blunt pair of tweezers, grasp as close to the front as possible, and pull back gently but steadily. Ticks do NOT bury their heads in your skin. (Keep any removed tick in a film can with a cottonball for moiseture and check it with the local health dept/vector control. Otherwise, there are several labs with much less political reasons to process your results

Enterobacter Aerogenes
(possible source Verdugo Hills Medical Center)
Has already shrugged off treatments Rifampin, Gentamycin, and is resistant to all cephalosporins, sulfa and penicillins. (Cultures still state it's susceptible to gentamycin but it was not effective when tried)

Enterococcus Faeceum
(possible source Hemet Valley Hospital)
Has already shrugged off treatments nitrofuritoin, Rifampin, Gentamycin, but has suddenly dropped off the culture reports during a short treatment with IV doxycycline (keeping fingers crossed)

Staphylococcus Epidermidis
(possible source Loma Linda Medical Center) - Has already mutated in cultures one week apart to be resistant to the abx (IV Imipenen) I was prescribed to cover both this and the Enterobacter) and I hadn't even received the abx yet. is now apparently resistant to penicilin, sulfa, cephalosporins, imipenen, Gentamycin, erythromycins, tetracyclines, clindamycin...

Citrobacter Frundii (possible source Menefee Valley Med Center) Thankfully appears to be susceptible to nearly every abx tested with it, including my front line Lyme med, 2 grams of IV Rocephin Q day

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All Rights Reserved. Unauthorized reproduction will be prosecuted and subject to a gypsy curse.