Lol… yes LAUGHING OUT LOUD.
I should start by saying that I am conflicted in this hysterical crazy mood (no point fighting my “somatic hypochondriac nature” right?)… I am considering the camp that says homeopathy and naturopathy are the way to go. But then I look at all the fun stuff passed around at the other camp (like marshmallow sticks going around a bonfire, because when I say camp I think of summer camp… duh!) where stories of quackery and pseudoscience are prevalent… So, I am conflicted.
- What does it mean to have ALL my symptoms disappear DURING a course of antibiotics (x1000)?
- What does it mean when they come back at the end of an abx course far worse than they have when they surfaced?
- What are the compromises that i’d have to make when choosing to stick with abx in order to keep my symptoms at bay????
- Why is there a fight about the correctness and accuracy of the condition’s name but not about the right treatment for it? I don’t care what the CDC or ILADS or whatever say… I just want to get better….
I write this having not updated this blog since September… I choose to write now because
- because I fear my memory will fail me at some point and would like to document things as they happen,
- to help others who are curious about any of the stuff I’ve tried,
- to document the trials and tribulations of this horrible experience and finally,
- to vent so as not to go crazy amidst the unnecessary politics.
So since my last post I have continued to take antibiotics (abx.) on and off. I call my experience “Extreme abx” for no other reason than the fact that prior to this catastrophe of a failing body, I NEVER took medication… I was so healthy, I should have been a lab rat for immunity and antibody research… in any case, I am not that person anymore… that person is dead. I accept that… the moment I stop the abx I am reduced to an existence fit for nothing more than an insentient being far less superior than the pill bottles on the nightstand by my bed… (cue mellow drama music elevation)… I am still experimenting with what works to keep the symptoms at bay now (will talk about that at the end, and in case you didn’t figure it out, that’s why I am writing this)… I have given up the endeavour to cure “it.” In fact, I have completely abandoned, and at the least I’m beyond repulsed by the quest to solve this “mystery.” I just want to hold up fort while I finish my stupid PhD., which I love, and then stop everything all together… perhaps these are suicidal thoughts… maybe. But they aren’t active thoughts, I can at least say that. They are what the medical and health community “recommends” in their guidelines. And I’ve accepted that… to take the abx. treatment and thats it, I should be cured. c’est fini. Maybe when I am a full-blown anxious potato vegetable (yes, cause that’s a thing!), someone else will have to deal with it… there! Yes lol that’s just being passive aggressive. tsk tsk.
Without further ado, here is what happened since the last post:
On the 13th of October (2016) I visited this private hospital in Hemel Hamstead outside of London. The doctor was nice, the facility was ok… looked more like a cosmetic practice (the type you get your lips done at) than a hospital. EVERYONE no exception, was really nice. Customer service was on par with what I am accustomed to in North America—very unusual for the UK (sorry! The truth!)… anyway… it later dawned me how this place runs as a business not as a hospital… they had a business office that reminded me of an insurance company. The “insurance brokers” in there vie for sales—(Lyme treatment brokers?). The woman (don’t get me wrong she was absolutely friendly and helpful and NOT pushy) who met with me after the consult, was all suited up and had a dossier—since the word “dossier” seems fitting in that context—in hand ready with all my recommended tests, treatment plan options, and proposed next appointment.
Everyone recommends… i am sick of this. why can’t anyone just treat me… you know, just be dictator doctor… i am happy to be experimented on if it means moving towards recovery. Anyway I digress… so the sum of all the “recommendations” in that dossier was about 2500-3000 GBP … yeah, considering I scraped the 200 GBP for that appointment to begin with, after being broke for a while…. ahhhhh…. nah
That’s not going to happen… simply can’t… not I won’t… i just do not have the means to afford this… this is why I prefer just to let go and end it. I am accused of being a fatalist but to be honest, I would rather that than victimisation, idealism, delusion, or martyrdom… which I sort of see on a spectrum… and I’ve been floating on this spectrum with this ordeal for a while… but that’s just my weird wired spirocheted brain…
Prior to my meeting with the Lyme treatment broker, I spent a couple of hours with the doctor who was super nice… at least he believed me (more than can be said about him than any of the others combined)… and for the first time I felt I was not losing my mind. He even explained the relationship between the infection(s) and crazy things I had observed and documented! Stuff that goes to show that each Lyme experience is a unique one and why you can gather bits and pieces from forums but never the whole picture… This makes me BELIEVE FIRMLY that not only does gender have a role in the manifestation of the disease… but I am positive that women go through this differently at different endocrinal stages too!
Anyway, he and a nurse conducted some physical tests on me… hearing, balance, seeing…etc. Just as a reminder though, I’ve been on abx since June (2016) and only stopped about a week before this appointment (less actually, since the 8th of October) because I anticipated blood tests and what not… (will get to that in a sec). As a (very, likely-correlated) result, my physical exams were almost ok… I had a diminished sense of touch and hearing on one side (don’t recall which side he determined… I think possibly left?) and my limbs were a little numb and too cold for normal… not too shaby conparing to how I was just months ago… Anyway I was to do a viral test and a kidney and liver panel test and allergies (woah!) as well as retest for Lyme AND confections (hadn’t done the confections before) using both Elisa and Western Blot. I should mention here that I brought with me a copy of the NHS tests (negative) as well as the ArminLab (positive) tests… The Armin ones weren’t taken seriously (makes me consider the plausibility of what that horrible infectious disease physician said in June about paying enough to get the results you want… but then the pro-Lyme community advocates for treatment of suspected Lyme on the basis of clinical symptoms not tests… these thoughts made me wonder where on earth does this hospital/clinic stand? They believed my “clinical” symptoms and prescribed meds for it, but yet still wanted me to retest again for the tests that already came out negative AND are controversial to begin with… they were not offering me anything new or different or innovative. It left me with one conclusion… profit, but I refuse to believe it (at least not 100%).
At the end, what I gained was only so much more confusion… something just didn’t add up. And all the stuff you find online only bolsters this confusion… that there are A**holes out there taking advantage of really sick people like me and especially of those less versed in research language, to which they are lured into buying “protocols” and books and natural remedies and other BS… I have been there… I tried Samento and Banderol or Cat’s Claw and Ottoba Bark as they are known… They do not do SQUAT. Needless to say, the doctor wasn’t one of those BSers… In all fairness, he is a decent guy that truly wanted to help. I am just not sure I am comfortable with the hospital itself, let alone if I could afford the treatment or if it was going to work at all… I was also not comfortable with the ambiguity of why I had to do all those tests… I felt that the place tried to implement a spa business plan model for health care… the kind you see in L.A. medical enterprises or on Harley street… It’s very capitalist in nature, and keeps the patient coming for more… you do get nurtured and you probably get better, but how much of it is permanent, or rather when does the “better” become permanent without a dependence on their care? Is that an option? Where is the transparency? Although money was a big factor for me, transience was also another. I have been a wanderer since 2011… I do plan on going back home to Canada where I can find the stability, consistency, and (maybe not) security to nurse myself. But for now, that option is just not feasible…
I should mention that I was going to go through with paying for all those things… probably borrow money (or sell a kidney or something…). LT was, as usual the voice of sanity… Telling me to come back to London and sit on it for a day or two and we could examine the contents of the dossier and determine what needs to be done and so on.
In the end I chose to purchase the medication (Course B + supplements see way further down), and abandon the tests, since they manufactured the drugs at the hospital’s own pharmacy and since the course seemed more of a wholistic one than the stuff I was already on (See Course A below)… as mentioned before, I’d stopped the antibiotics on the 8th of October so I can see if I’m “cured” and in case the doctor wanted more tests. I am not cured; they wanted more tests.
I should also note that I, for some reason, feel so, so—SO—much worse on or near my period, which happened to have started the day I stopped the 200mg of Doxycycline and 500mg Tinidizole (the 8th). I was also feeling so sick the day before as I realise now that I am not as capable of stomaching doxycycline as well as I thought i did or could…
After the doctor’s appointment, I began my usual course of abx (what I was on before) on the 16th of October, 2016. Here’s what I did:
(Course A) (Self-treating)
200mg Minocycline x 2 in the morning (upon waking)
500mg Tinidizole x 1 in the afternoon (about 5pm)
200mg Doxycyline at night before bed…
I continued this EVERYDAY until the 5th of November when I finally had enough money to buy the prescription from the Hamstead doctor. I was told to pulse on a 3 day-4 day alternating basis, using the following abx:
(Course B) (Doctor-prescribed)
1x 500mg Tinidizole twice a day, 3 days a week
1 x 500mg Clarithromycin twice a day, 4 days a week
1 x 200mg Amoxicillin three times a day, 4 days a week
I was also prescribed other stuff but stupid me didn’t read closely what they were and assumed it was the “supplements” and “probiotics” … “ain’t nobody gots time for dat!” were my thoughts on those, and I was lazy trying to manage timing the antibiotics with the probiotics (since duh! what’s the point if I took the probios and the abx just “kills” them off?) In any case… two of them were indeed those, NSK-SD (twice a day was a probiotic), and Bromelian (twice a day to help with abx absorption, which should be taken without food to avoid absorbing the food instead of the abx… or something like that)… The third medication, which I overlooked ignorantly, was an important drug! The Artesunate (1 tablet 4/day, everyday for 4 weeks) was actually a malaria medication (read up on it! there seems to be valid claims) that I should have taken WITH the abx. Stupid me! Needless to say I finished the abx course on the 8th of December (8 seems to be the magic number)… I then began the “supplements” stuff on their own and only came to realise my unforgivable mistake then…
It is worth mentioning here too, that while on the prescribed abx., EVERY SINGLE ONE OF MY SYMPTOMS DISAPPEARED COMPLETELY. There was nothing! Not even the floaters that I was so used to! I was telling LT this one day: At some point in the middle of my treatment (mid November I guess) there was an insect moving about in the periphery of my vision that I had assumed was a floater or light orb or whatever… the “in my eyes” or “head” stuff… it was only when it moved closer and didn’t “glide” as they do (hard to explain this) that I turned to examine what the hell it was and realised that I didn’t have floaters anymore!! It was a real live tiny insect!!! Lol I haven’t been that happy about a bug, not since childhood. Another noticeable breakthrough was my period… oh how i suffered with thee… one of the things that got all screwed up right from the bat was my period. My hormones were all out of whack. It was so irregular, that I was so happy (as though a long lost friend) when it showed up, and totally forget about it when it disappeared (for months on end). The flow was unpredictable just as the PMS… The moods were markedly more severe at the hight of my… whatever you want to call it. And changes to my PCOS condition (yes because that too was affected) witnessed further complications with changes in androgens and oestrogen levels that change the type of PCOS I had. The breakthrough? It became more regular! Sometimes normal is very much sought after and desirable… The cycles went back to what they were before Nov 2013 (28-30 day cycles)… to the point where I thought “WTH! Sh** oh no! Something is off!!! Why am I bleeding ‘early’? Did I break something? did something crack in there???” I have been keeping a period journal so it was only upon studying the last three months from that point (all of which were within the “abx. era”) did I notice the trend! I was psyched!! In a good way… since you know, I could be psyched in a bad way what with the devastating mood swings that kept coming with my periods for some time….
An even better improvement happened to be my joints… The gout had also subsided (I CAN WEAR MY BELOVED SHOES!!!!), and during all of November I managed to train for a 5k. It was harder, WAY HARDER, than it had been in the past prior to 2013 even though I was smoking then (I have been smoke-free for more than a year now!). I can tell my body was not up to snuff as compared to before. But the point is, there was a glimmer of hope… I ran a race and finished it: 5km in 35 minutes… not spectacular, but it was done. That wasn’t my best record either… I’ve managed better times during my training… even during my period! But for some reason my performance, instead of getting better, peaked and then rapidly declined.
Additionally, something unusual began to happen during the last days of running (yes I had since stopped running—again.), I began to experience strange menstrual cramps that were more intense than any I’ve experienced since minarche… it would happen about 1/3 of the way into my training, so at about 10 minutes or so. The pain is so bad that I would have to crouch in fetal position to alleviate it, and even then that wouldn’t help much. It would subside eventually after what seems like ages (and many bystanding spectators) but in actuality only 5-10 minutes. To be honest, I began to dread running… even though I LOVE it.
I did look into it but could not find anything… (**tangent*****of course! This sh** has to happen to me… weird medical anomalies that are only experienced by random strangers on forums and is basically an unknown condition to every physician that ever crossed my path****end of rant*****)†. What it felt like, in case anyone else ever has this, was like period pains/cramps x1000 or like gravity is sucking out your womb/uterus, like bad rectal pain (NOT constipation… rectal pains that is known all too well to women with endometriosis) or maybe contractions (I wouldn’t know, never had babies… and sort of don’t want to if that’s what the pain’s like extended!). Externally I looked like a cramping (or crapping—sorry!), sweating, writhing, head spinning, blacking out runner in unbelievable pain… too unreal to believe. And it happened no matter what I tried:
- going to the bathroom before,
- avoiding eating or drinking 2 hours before training,
- drinking more water,
- drinking water closer to training,
- drinking less water closer to training,
- supplementing with vitamins,
- removing sugar and gluten and dairy,
- reducing red meats and eating more lean proteins,
- wearing better running gear (from shoes to warmer protective clothe),
- warming up and stretching before a run,
- trainning in intervals,
- prolonging rest days,
- going easy on a run (though when I ran hard I can guarantee its onset faster, lasting longer!),
- and finally by taking Advil or PMS meds right before the run.
Nothing worked, so I abandoned the run altogether… I am proud to have finished that one race though… it reminded me of who I was, what I could do, what I went through, and the fight to get back to that point. I couldn’t have done it without LT… as usual, motivating and training with me, and the voice of reason and sound judgment when I was stubborn enough to want to continue running while in pain… BAD IDEA. I did read somewhere online—of course with no medical or scientific backing to the proposed explanations—that this may have to do with a mis-positioned uterus or womb or something like that… I do not know enough about the condition to make educated guesses about this possibility, but the other suggestion was to do with existing conditions (PCOS), and exacerbated (Endometriosis) ones, made worse possibly by (or at least alongside) Lyme. The PCOS part had to do with the cysts that were not getting enough blood flow and were causing some sort of contraction chemical production or something like that… and the other was also to do with blood flow, chemical reactions, circulation, endometrial-caused scar tissues outside of where they belong… whatever it is, I’d rather read about it in a medical journal than to learn about it at the Ob/gyn’s office. So just like that I quit running… I was not in a position to complain with all the “miraculous” improvements taking place… I was even able to multitask and manage different relationships simultaneously (even if not successfully) for the first time in a while (including my research… which is totally a relationship!). I also paid a visit to the therapist that saw me earlier in the year for “anxiety” and she was “astounded” as to how “remarkable and great!” I look… she too was one of the few people that believed me when I said IT WAS NOT stress nor was it IN MY HEAD… at least stress wasn’t; the bacteria, maybe.
On the 8th of December, I completed Course B (see above) and started on the probiotics and nutrients. It was going well and I was generally composed, no floaters, no brain fog, no using words that sounded like the words I actually wanted to use, no reversing letters, no irritability, STILL no floaters (!), and best of all no anxiety.
I should have known this was too good to be true…
Up to that point, admittedly I was leaning a bit more to the CDC side of things… “yeah maybe, cause I didn’t treat the bite early…? I just needed antibiotics for more than 4 weeks…? but of course if it’s bacterial then I have to be cured!” right?… Lol…. see why I laugh out loud? The symptoms SLOWWWWWWWLY crept back in: yeast discharge, earwax, floaters, blackening or darkening of the periphery of my vision (extreme… never had it like this before), blurry vision, dry eyes, strep through or whatever, sinus congestion, the gout and feet pain, shooting leg pain, restless feet, lethargy (sleeping for 15-18 hours too!), insomnia, zoning out, did I say insomnia?, light sleeping, oh what about tired and sleepy all day?, loss of smell, cold extremities, sweating, twitching (face, legs, finger, you name it), tingling, bug-like sensation concentrated on the knuckles of my left hand, achy shoulders, back, and face! And then I noticed the lapses in memory because they were occurring faster than “normal” (lol normal post nov 2013 that is), and the use of wrong words…
Seriously I am afraid of going back to that place. I have been transcribing my research interviews and although i sound normal i can hear myself using the wrong words and the interviewees pausing in confusion but just going along with it… I don’t want to go back to that place… especially not this fast… On the 18th of December, it hit me very very hard. I had a panic attack as bad and paralyzing as the first one, which I am sure (i think) I described somewhere in this blog. It was the sweaty-fast-heart-palpitation-can’t-breath-going-to-faint-scared-out-of-my-mind-actually-going-to-dye kind of anxiety that rendered me motionless at my desk, in the office, at uni, at 8 or 9 pm in the evening…. luckily (or unlucky) for me I was alone. No one saw this insanity… fortunately as well, I still had Xanax from the psychiatrist that I was told to keep JUST in case. And oh how I knelt down and prayed thanking the lord that I had them then. I had to take 0.5mg for the panic to abate. Before abx. I was on psychiatric medication as I’ve mentioned somewhere for extreme anxiety and depression. Those didn’t do much except made me unable to move when things happened (made me feel like i was trapped in my body while the panic took place is what that was… although they did help in some occassions).
I would like to point out that when I started abx, I had “mysteriously” tapered off the medication successfully without a conclusive answer as to why or how. So the doctor suggested I keep 0.25mg with me “in case of emergency” since these things “flare up from time to time” and hence the emphasis on the doses (even though low, relatively). The last time I took the anxiety medication was sometime in April or perhaps early May I believe. And I only began the abx late June. This is me building a case for observable evidence, biased as it may be. But if there is one thing I learned in my career as a researcher, bias when acknowledged aren’t bad, they are bad when you pretend they do not exist or worse miss them completely. I am not saying that what I am writing her is scientific evidence or accurate or reliable… I am simply saying it is valid, because these are the things I experienced.
Not surprisingly, I began on antibiotics again on the 18th (Dec.), I have had pretty bad cerumen impaction as well as heavy discharge of what smells like (i am so sorry for the gross details) yeast during all this time. I decided that my modus operandi from now on is to curtail the symptoms and manage the pain rather than “treat” this damned “condition.” I am not going to label it as anything. I don’t want to be part of this war, battle, controversy or whatever… I just want to feel better and fight the battles that are already on my battle field…
So for now, in practice, this is what I intend to do in order to (at least) get through my PhD.:
- keep taking abx. until I find something else.
- I have ordered more of Clarithromycin (500mg) since that seemed to help (blackmarket stuff unfortunately)
- finish the “supplements” that came with Course B including the malaria stuff.
- I am going to try Reishi Mushrooms or Lingzhi or ganoderma lucidum, which I ordered from http://www.hokkaido-reishi.net/
- I first read about the mushrooms (NOT THE PRODUCT) in author Amy Tan’s website where she describes her ordeal. Her experience sounded a lot like my own. Here’s what she wrote: “[F]ound an antimicrobial mushroom used in Chinese medicine, ganoderma lucidum, also known as Lingzhi in Chinese, and Reishi in Japanese. By taking two types– essence and spore– six pills twice a day, I have been able to keep the bacteria at bay. By the way, this is not a treatment I would recommend to someone with full-blown Lyme disease that has never been treated. By the time I started taking the mushrooms, my disease was more like dying coals than a raging fire.”
I have also been trying to address other stuff by incorporating a multivitamin since my skin has degraded badly (I look as though I aged 10 years in 3), adding at least some walking (because of the whole running issue), and Fascia Blasting, which seems to help with my cold feet and hands and aching shoulders and back (I don’t know about cellulite yet… no conclusive evidence for me, but too soon to tell. I will report back! No harm in gaining a taut body in the process). For the latter, I will try to purchase the face blaster (it isn’t out I believe), which is a smaller device for your face, to help with the loss of elasticity… like I said, I’m looking 40 now… I am only 29…. I want to get back to that…
I wish I had something more uplifting and more positive and reassuring to report or update on but I don’t. And if you are reading this and can relate to any of what I’ve written… I am really sorry you are going through this… PM me if you need to talk. If this is all new to you, I was in your shoes too, and I don’t know what I would have done without LT by my side. You need someone to talk to. No one deserves to go through this alone.
† So aside from the weird running pain, I’ve had a few other issues that I speculate have more to do with the “treatment” than the ailment since the severity increased with the abx. This includes really dark and odorous urine (I am not sure how to describe the colour but it is very very dark ochre-yellow). I have noticed that i pee less regularly than usual (I usually have a pressing urge to pee first thing in the morning but lately my bladder feels empty, and I can sit in bed for hours until the feet pain abates before moving, and still don’t need to pee). This could indicate kidney problems… I have been trying to drink more water (sipped some just now!) but i am not very good with keeping up with needed daily intake… I had a few episodes of uncontrollable unexplainable appetite increase (binges!) where I ate mindlessly like a vicious animal (scaring LT on a few occasions). Oh my hair began to shed on the days I was not on abx (it kind of coincided with the ear wax and discharge), hair pattern changes on my body were very noticable. During the abx, I usually experience vaginal dryness, without the abx I get the yeast discharge which is thick and creamy (off-white) and if dicharge is clear it comes (no pun intended) with a sweaty smell. These are probably the most annoying, the yeast discharge can get so bad it wets my undies… through the panty liner!!! Another noticable issue, and I’m not sure here, but since starting the “supplements” that came with Course B (the malaria stuff and probiotics), I started picking at my skin, plucking hairs, picking cuticles, and biting the insides of my cheeks incessantly and compulsively which could be anxiety… i haven’t chewed on my nails since I was a child, I should also say that I don’t chew on them now, rather i pick at them with my nails… it’s difficult to explain and belongs to another post… but here’s something that gives the sensation or urge a name and an explenation i can relate to, where this is the part that resonates best: “[T]he intent of the behaviour is not to harm oneself, rather to fix, correct or otherwise make better some aspect of physical appearance.” Finally, I’ve had to go back to the first (female) GP at uni (first negative lyme test) for my “chronic” blocked nose, as she put it. She prescribed a nasal steroid spray, beconase, for a month (which induced strep at the beginning for 2 weeks). I was on the abx then, which I told her about. When she asked why I was on it and I revealed the Lyme diagnoses from Hamstead, she looked at me like she was dealing with an insane asylum runway (thank you doctor for being so understanding and professional) as though I was going to attack her. Her tone changed and she became more antagonistic. I didn’t really mind cause I know by now how this stuff goes down here in the UK. I asked her if it would interact with the abx, and she said it shouldn’t (later research revealed it might make an infection worse). My nose did clear up though… but here’s the catch: I began the nasal spray treatment 2 days after the abx. on the 7th of Nov…. so who knows which sorted out my nose… oh and for the record, it’s also one of the first things that went “off” after finishing the last abx, along with the reoccurrence of strep (by which I mean throat infection), and nasal drip…