Update Since Last September Post: It’s Chronic! or Post Treatment or whatever the heck you want to call it.

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

  1. because I fear my memory will fail me at some point and would like to document things as they happen,
  2. to help others who are curious about any of the stuff I’ve tried,
  3. to document the trials and tribulations of this horrible experience and finally,
  4. 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

200
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.

____________________________________________

NOTES
† 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…

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Lyme: LLMD + Update

So on the 25th of September  (having stopped the antibiotics on 18/09/16) the pain came back. I could feel the brain fog taking over for roughly a day, my toes curling from the tightness of pain that morning, where my big toe sort of felt (possibly looked!) like this:

cartoon-toes-clipart-1

 

What do you make out of this? Nothing. Absolutely nothing. I am growing more desperate. More so because my dad has Lyme too.. And I finally convinced him to take his meds. Apparently monocycline isn’t available where he is… Leaving him with doxy… which i know he won’t stomach. He started on the tinidezole and half his face went still… Bell’s Palsy. His tremor is still there. So after two days of taking it he stopped the tini. The doctors, all of which don’t believe he has lyme, say it’s his nerves. DUH! But it isn’t for the reasons they think. I am so scared he will not continue and keep on deteriorating as a result. He still doubts my assessment and i don’t blame him. I would have under differing circumstances (as in if I never got lyme to begin with!). I know this sounds hypocritical. But I would rather be a hypocrite than a liar, which some may argue is one and the same. The point is, now I know better.

That said, I decided to look for a Lyme Literate Medical Doctor (LLMD) here in the UK. I had gone to the ILADS website  to fill a form to request for recommendations. Within a couple of days I got several ones. I picked the closest and checked their medical facilities. They mainly deal with autoimmune and allergy cases. But two of their doctors are Lyme Literate. I checked their credentials and am a bit hesitant about their medical backgrounds and credentials. I contacted them anyway and received an email with all the instructions (yes there was a full package detailing HOW you should come to the clinic) about the first visit and future visits. They had a solid plan and were pretty straight forwards. The cost was £200+ pounds  for the initial consultation which will last for 1.5 hours. This is not inclusive of the tests which could go as high as 1500£. Luckily for me, I’ve already had tests done by ArminLabs, in early June. You can read about my lyme history in this post: Sour Symptoms. Reading through their instructions, the require some interesting things from new patients… to respect their “no scent policy.” Yes, no scented anything. Not even your detergent… I am ok with that. HOWEVER, like you know from another post, I am broke as vase. My phone service is about to cut me off, and my uni is stalling on paying me for work I’ve completed in August…. but this rant is for another post. Anyway, so I am sitting here frugally using my Oyster card (which LT topped for me!) until my “next payment.” Which seems like it’s never coming through… Like wise for my scholarship. It’s so frustrating… Sometimes I really feel like giving up… but sometimes I brush that off and keep going despite the lack of an end goal. I convinced myself I just don’t see it yet.

So with this crazy A.D.D. tangent all over, I started Doxycycline (400mg at night) and Tinidizole (500mg morning) for the next infinite amount of time on the 25th of September. I feel better. That’s all I can say. On the 27th of September, I managed to run! 15 minutes, broken down to 5, 4.5, and 2.5 minutes of running with a 3 minute cumulative rest time. I covered what equals a mile every 5 minutes. Not bad for someone who couldn’t walk down the block without feeling like death.

As always will keep updating!

qp.

 

Lyme: 5 days after abx

(written 22/09/16)

Five days after taking antibiotics for a whole months (plus the pulsing for 6 weeks before that) I can feel my joints starting to flare up again…. I don’t know what to do. This is emotionally painful just as much as it is physically painful. I feel the fatigue gradually creep in… I am sleeping more, my eyes are dryer, the blue orbs are back, strange discharge is back, my ears are producing excess serumen again, and worst of all…. The podagra (toe joint) is killing me and so are my hands…

I am scared. Will I be stuck with this forever? Again I read someone’s hypothesis that some people develop an autoimmune allergic reaction in the form of arthritis to the antibodies left from the Lyme bacteria… If that’s so, why do I react so well as soon as I am back on abx?

I am going to start the semento and banderol protocol to see how it goes… That or will continue the abx for the next 6-8 months if things get worse since that is the life span of Lyme bacteria. I think though the better choice here is trying the herbs.

I’ll start at 10 drops and work my way to 30 of each, 30 minutes befor food and 15 minutes apart… I hope to goodness this works. I don’t want to go back to where I was… It was my worst nightmare… Lyme robbed me of a third of my 20s. It will not take away the rest of my life.

Lyme: Today Is day 1 abx Free

And I feel great…. well almost.

Some noticeable issues include increased appetite.. I don’t know why but I am always craving stuff… it doesn’t help that I am always stressed, but I am generally craving protein… that has to mean something… right?

After this 1 month course of every-day-3-times-a-day abx, I decided I am going to go on a probiotics course. I chose OptiBac probiotics, which I purchased from Planet Organic. we’ll see how that goes!

I am also trying to keep up with my weight, which since coming here, and since the lyme (back in 2013) has been a struggle to stabilize… I am hoping by cleaning out my “insides” I can finally gain back some control over things… I either read this somewhere, or my mother possibly said this (since she sometimes sounds like a magazine), “the smaller the dress the bigger the apartment” … at this point my shoebox room is getting smaller. Or my dress is getting tighter… Since moving into it 2 years ago this september, I have successfully gained 10kg! freaky… that’s 22 lbs… I don’t know how the heck I managed to do that… I gained about half of it in the month  (end of june 2016) I started the antibiotics… Great. Now what? I’ve read a bunch of places that there is a relationship between gut bacteria annihilation and weight gain, about abx and weight gain, about probaiotics and weight loss, but nothing compelling to convince me that it isn’t written by some kook… It’s the same skepticism I apply to the whole candida issue, and possibly what I would have used to “assess” lyme before I had lyme… what I am trying to say is that do your own research. I will not post any kind of reference to back my opinions on this. I’ll just suffice by saying I am desperate enough to try but not completely ignorant to believe.

So to hold myself accountable for the promotion of health and weight loss… I am going to see if I can hook up my myfitnesspal to this blog as well as document every good and bad consumed entity that dare part my unfortunately unfastidious lips…

Here are some baseline stats:

Start date: 19th September, 2016
Average Weight Before Lyme (AWBL): 54-55 KG
Current Weight (CW): 64 kg 😦
1st Goal Weight (GF1): 60 Kg by December 5th, 2016
2nd Goal Weight (GF2): 58 kg by January 18th, 2017
3rd Goal Weight (GF3) 55 kg by Feb 20th, 2017
Final Goal Weight (FGW): 50-52 kg by March 1st, 2017

7 months
(Sept 16 – March 17)

The rules, including “intolerances,” which I don’t really have but will pretend to have to have a better excuse refusing food:

  • Gluten  pasta (can have some gluten-free but only a handful [fist size] portion)
  • Sweets (candy, cakes, cookies, brownies… can go for a palm sized portion on Sunday if needed!)
  • Wednesday’s are vegetable only days…
  • Mondays are egg mornings NO MATTER WHAT
  • Pret SALAD or Leon veggies every lunch or dinner at school
  • No carbs with L except maybe on Sundays
  • Supplements (B6 and B12 rev up metabolism like no other!)
  • Home screen is obesity related as a reminder… get into the mindset that “empty calories” lead to all sorts of health problems..
  • Wake up to drink coffee… COFFEE IS YOUR NEW VICE
  • At least 3 cups of plain water or water with lemon every day
  • start a fund… Save a pound for every kg lost and buy something from a market.
  • Chicken stock/broth for dinner whenever possible…
  • Keep daily intake between 800-1200 cals

Here goes!!

 

qp

Lyme: Minocycline Vs Doxycycline

Update on how I am doing since starting the Daily abx on August 20th, 2016:

  • Menstrual cycle is longer again (still no sign of it since last time and it is overdue… some spotting and HORRIBLE PMS which makes me think it’s PMDD)
  • On September 3, 2016 I have switch from Doxy 400mg to Minocycline 200mg
    • I take the Mino at night which allows me to take vitamins and so on during the day.
    • I still take the Tinidizole 500mg midday.
  • The reason I stopped the Doxy is because it makes me vomit badly sometime on the bus/tube to work…. it happens when I don’t eat or if I have dairy in the morning… like Kefir…The nausea lasts all day even if I don’t hurl eventually…
    •  I was on  Doxy for 2 weeks until I received my new batch of Mino
    • I will keep at it for another 2 weeks and see what happens.
  • Since starting the abx I’ve officially gained 6kg and I am struggling to lose it.
  • My eating habits aren’t so clean anymore since I am broke and relying on either leftovers from my host family or snacks I keep at my office.

So what’s better, Doxy or Mino??

I can’t tell for sure… I can’t isolate and control conditions to become controlled variables… Right now my neck stiffness and leg pain and fatigue are back, lack of coordination is also not so much (see this post for details!)… I can’t tell whether it’s my period making its royal way out or if it’s the Lyme or both, maybe a herx, or maybe something entirely different… I do know that since stopping the doxycycline I’ve had really really bad days (including yesterday and today).

I still experienced some joint pains from time to time but for the most part my feet and hands were virtually painless on doxy… it isn’t fair to the mino since it did help before.. I’ll just have to wait it out and see…

Historically, what I do know is that the Lyme symptoms got worse or a new symptom began right when my period was coming… from research I also know that the bacteria also takes about 4 weeks to reproduce and develop… which happens to coincide with Miz Flow… so it really is difficult to isolate one condition from the other without tests.

I am also curious whether there’s a relationship between the onset of symptoms and how they disappear.. If the effects of the medicine attack them in sequence… so the ast to appear is the first to disappear? But maybe that’s just my mind trying to establish patterns.

ps. this is a totally biased subjective post based on nothing but my pain and emotional state right now. That said… trying to find a glimmer of hope and some cheer in all of this…. depression is a horrible daemon. Yes I think of dying. No I don’t think of suicide.

qp

Lyme: The Balance & Coordination Test

Are you balanced?? I asked myself this alllll the time before I got medicated… “qp, ARE YOU COORDINATED ENOUGH FOR THE HIKE NEXT SATURDAY?!”

So how would a Lyme-slapped researcher go about answering this? Why by doing an experiment!

For months… I became a crazy OCD person… I kept a mini Kate Spade notebook (because I LOVE this designer and wanted to become her, back when she first launched her brand and I was 5 or 6 and being a fashion designer/business woman was a seemingly feasible ambition! but I digress…) In this notebook, I kept a log of whether or not I can stand up, close my eyes, and spin around without falling and smacking my face… I normally did this in the shower so I don’t look like a nut publicly… and surely… I began to notice how much worse it’s gotten over time… I measured speed (how long it took to spin), whether I can actually do it (there was a time I couldn’t at all),  and if I needed to hold the walls to achieve my goal (yup, that too..).

How did this madness start? Well I was playing with my host family’s kids… and they were able to do it but I couldn’t… so I thought it was an adult thing… so asked several people I know (this is back in early or mid 2015) if they can do it, and they could… I wasn’t entirely sure what was wrong with me, but I knew something was off… it didn’t take a genius to figure it out when you keep falling from the top of the escalator down, or knocking into things when you used to be a class-A superstar at things that required balance! I am still not sure if it’s Lyme or not, but my coordination sure as hell got better with abx…

So that’s how the coordination shower test was born! I still do it now because coordination was one of the first things that I lost to Lyme and I am scared of losing it again… the test is probably useless… but for an anxious Lymie like me, it’s reassuring.

qp

Giving up on the CHIM-FLUOX

Quiting And Begining Again

I caved. On Saturday the 20th (August 2016), my partner and I had plans for an exciting night out. But by that morning I was in insufferable pain. My feet were swelling up again my dark circles were back and I was overcome by sheer fear of going back to where I was before figuring out that antibiotics can take down (not get rid of) Lyme pain. I chickened out for several reasons. 1) I didn’t want the bacteria to become resistant while on the CHIM-FLUOX treatment (HOAX!), 2) I didn’t want my body to go back to where it was, 3) I didn’t feel like I had the strength to handle the agony whilst my family used that as “evidence” that it’s all in my head, 4) and most importantly I didn’t want to miss out on life with my partner.

I had been away for a month, traveling and experiencing mediterranean countries. And though my energy was not back to its fullest, I certainly was doing much better than I was before! Compared to my Paris trip last fall (where I slept for a little more than half my time there!) I have been in unbelievable shape. I wasn’t ready to give this remarkable recovery yet.

So I quit the Alfons Ven package and began on a more rigorous abx regimen as follows:

  • 100 mg doxycycline twice a day
  • 500 mg Tinidazole once a day
  • EVERYDAY FOR THE NEXT 30 days.

My instincts were that I was not herxing… On the pulsing course by the 5th day (the first day abx-free after a 4 day period) I feel the pain in my toes and small joints of my feet. This got worse after I stopped the abx but not quickly… it crept up. I am pretty sure that the bacteria were re-colonizing again… You should know that Lyme establishes itself in several colonies and has a slooooooOOOW growth rate. So when you defeat one, you have a million others in the process of development and, since antibiotics wear off far too fast (or maybe the bacteria grows way too slow–glass half full / half empty), the colonies will mature and reproduce effectively long after your medication has been absorbed.

My new regime ends on September 18th, 2016. Which means I completely destroy my gut and gain weight (as an already noticable side effect) in the process–I have slowly gained about 6 kg since starting abx at the end of June this year.

Given my choice to follow through with this, some mini research is required…

Some Research Activity

I was questioning whether or not I can take probiotics with antibiotics and couldn’t find anything credible (will scour medical journals more thoroughly to see what I can find). However, on googling this, the first link to appear was this, which says:

If however, you have to take antibiotics for a finite period, then I cannot emphasize enough the simultaneous use of probiotics. Probiotics are beneficial microorganism cultures – i.e. good bacteria strands – that basically replenish the good bacteria in your system and try to repair the side-effects of antibiotic use.

Whilst using probiotics, I also advise one to eat foods high in natural probiotics and prebiotics (also referred to as fructooligosaccharides – FOS – or inulin). Prebiotics are the food the good bacteria in your body thrive upon and hence it results in growth and multiplication in your gut.

Good examples of food that contain prebiotics are: artichoke, asparagus, banana, unrefined barley, garlic, green beans, honey, leeks, unrefined oats, onions, raisins, soybeans, tomato, sprouted wheat products, whole grains etc.

Good examples of food that contain probiotics are dairy or soy yogurt with live cultures, miso, unrefined whole grain breads and cereals, fermented cabbage, brined olives, salted gherkins, kefir and also the prebiotics listed above.

When choosing a probiotic product, select one which guarantees at least a minimum number of spores at the time of opening and not at the time of manufacture (at least 1 billion). Also make sure that more than one strand of bacteria is present (there are claims that too many types of bacteria can lead to certain strands competing with each other to populate the gut and as a result less colonise adequately, though there is no clear evidence to substantiate this claim).

Op, and here you have some sources from my initial peer-review search into  probiotics aiding with recovery from antibiotics and if they actually do anything:

http://www.nature.com/ajg/journal/v101/n4/full/ajg2006155a.html  (Probiotics are useful and do help! American study.)

http://bjgp.org/content/57/545/953.short (Probiotics don’t relieve antibiotics symptoms — British study)

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2710.2008.00980.x/full (American study on older people in america who were taking antibiotics along with Florajen prebiotics. The result showed that 17% experienced diarrhoea in the Florajen group compared to a 37% rate for the placebo group… seems credible! Also tells me you need to choose your probiotics wisely)

http://www.sciencedirect.com/science/article/pii/S1075996409001243:

  • Factors that disrupt this protective barrier, for example antibiotic use or surgery, results in host (human) susceptibility to pathogen colonization (meaning bad bacteria may take over your gut) until such time as the normal microflora can become re-established (until your body restores itself) . Probiotics are uniquely qualified to fit into this window of susceptibility and may act as surrogate normal microflora until recovery is achieved (meaning it can act as your gut’s good bacteria until the body heals itself).”
  • “lack of significant drug interactions” –> doesn’t interact with other medicine… (yay so I can take mine during!)
  • “ease of administration” –> you can take it easily

http://www.futuremedicine.com/doi/full/10.2217/fmb.11.142 (literature review done on research about gut bacteria changes and weight gain. “These results suggest that manipulating the composition of the gut microbiota may prevent weight gain or facilitate weight loss in humans” that’s exactly what I needed to know.. I need to find out what will help me lose the weight and not gain it back while on abx.

As you can see, there isn’t much on weight gain as a side effect of abx and whether probiotics can help with that…  Most research are on probiotics aiding with the leaks during an antibiotic course.

So, armed with all of this information… I feel compelled to get up and fight (figuratively) to find a cure or remedy of some sort. I can’t lose my health, my sanity, my loved ones, my focus, and my figure all at once…  I certainly have lost my peace of mind and my trust in people (loved ones and professionals I am supposed to trust) . But despite this I have also learned a great deal about myself during this time.

Symptoms Check

 

Since the abx sessions, I the pain lessened but didn’t disappear. I also noticed that yesterday (23/08/2016) and the day before (22/08/2016) I had worse feet pain and bad focus, respectively. These are all coupled with sinus block, strange discharge, numb arms, painful neck and shoulder muscles, depressive moods, and extreme cravings and insatiable appetite. I have been trying to watch what I eat but it isn’t making much of a difference. Either way, I also can’t rule out the fact that I am back in the UK (which I, as much as I hate to admit this, do not like very much). remarkably, today the pain in my feet is reduced again, and I didn’t wake up with sore legs and feet. I have developed acne and white heads all over one side of my face (the numb side!). My sense of smell is still bad. I have noticed that the ridges on my nails have reduced significantly and so have my cuticles.

As always, will post updates soon.

 

qp

A week without Antibiotics

A week without antibiotics resulted in catastrophe.

I am on the Alfons Ven remedy but honestly I really think it is useless. A scam!

Today is literally day 7 without antibiotics. I was supposed to start week 7 on tuesday, but my partner and I agreed to see whether or not pulsing for 6 weeks was enough. It wasn’t.

Anyway, I will still give the CHIM-FLUOX a chance and keep at it.

Here are the symptoms that have returned in the meantime:

  • Excess Cerumen (earwax) production (apparently an indicator of infections).
  • Vaginal discharges.
  • Blurry vision.
  • Extremely painful knuckles, toes, and small joints everywhere.

I honestly want to just go back to the antibiotics… I am seriously depressed because of this.

I will give it some time because I refuse to believe I need to live on antibiotics to get by. I don’t even want to think of the idea of having kids… Them having a chance of inheriting congenital lyme, or being affected by the antibiotics (I’ve seen one too many people who have “grey” teeth because of antibiotics as kids…. a very shallow thought but all too real for me).

This post is really a an angry desprate rant… I am trying to document the process as I go, as much as possible.

One day, once this PhD is done… I’ll start a research on Lyme. This cannot go on any longer! Someone needs to stand up and do something… For those that don’t have it and are less than compassionate to those that suffer, I do hope you get to experience this horrible disease yourself…. maybe then you’ll be humbled to mercifulness.

No love,

qp

Alfons Ven Package

CHIM-FLUOX-AVIVA FOR LYME

Alfons Ven (AV) Package

Today is day two of the Alfons Ven Lyme package, which I first learned about here. Before tackling my experience so far here’s what I’ve been doing:

A few months ago, I purchased 1 packaged which lasts 28 days to test… Then I visited the horrible doctor in June, 2016, and decided I will whack the nasty bugs with abx instead. After only six weeks of abx pulsing I felt great so I decided to give my body a break. The Alfons Ven treatment consists of CHIM, FLUOX, and AVIVA.

Here’s my schedule:

FLUOX

  • According to the instructions, which are terrible, Fluox should be taken 2 hours apart, 1-3 times a day… You need to start with 3 times, and continue if you have bad herxes before starting CHIM. You should also keep a 4 hour gap between FLUOX and CHIM at all times.
    • 9:30 am 1 pellet of FLUOX.
    • 10:00 am breakfast + OpticBac Probiotics for antibiotics (1 capsule)
    • 11:30 am 1 pellet
    • 12:00 snack/drink
    • 1:30 am 1 pellet
    • 2:00 Lunch

AVIVA

  • There were no clear precise instructions as to how or when to take AVIVA.
  • 5:00 pm AVIVA 15 Drops
  • 5:30 pm snack
  • www.lyme-symptoms.com suggests the following:

17. AVIVA:

  • The Green oats,Vitamin C and Echinacea is very beneficial to keep gastrointestinal operating efficiently, as well, it gives support for entire body.
  • AVIVA is always taken at the beginning when the body is weakened by the infections or is handling an exceptional amount of die off.
  • AVIVA is taken during FLUOX alone and during the use of CHIM and FLUOX (eradication period).
  • Aviva is plant. Some plants are best taken alone, away from other things. Space the minerals and vitamins by a half hour away from AVIVA.
  • AVIVA may be taken with food.

18. How many drops of AVIVA do I need?

  • Use as instructions
    • or, energy test yourself or your child every month to know how many drops a day is best or if any are required. Everybody is different in many ways and rarely with anything being ingested does one size fit all.
  • Average only: 3 drops daily agrees with a child. An adult 7 drops daily. More at the beginning then later in the eradication process and even when only taking FLUOX at the beginning while releasing neurotoxins prior eradication process. If diarrhea occurs, cut back.

CHIM

  • 8:00 pm dinner
  • 10:30-11:00 pm (depending on when I get home) 1 compartment of CHIM containing all the pellets.
  • Sleep in the next hour or so.

——————–

AFTERMATH OF ABX AND THE BEGINING OF AV PACKAGE

The end of Abx

I wanted to point out that I have been pulsing since June, 2016 (see Antibiotics Pulsing Treatment in linked post for details. Read this for 6 week feedback).

On the day I was supposed to start my 7th week of abx (which was the beginning of my break), I began to get the usual small joints pains as usual. During the abx treatment, I can tell it was about time for the begining of a session when I start feeling the pain. However, since I didn’t take them on the 7th week, the pains remained, the achy soles returned (something I haven’t felt since the second week of abx!) and I am more fatigued than I was in the previous weeks. I also noticed a reduced amount of anxiety since returning from my vacation (I am not sure what gives, since I haven’t been keeping track of my anxiety in a controled enviornment).

The begining of AV

I started the CHIM-FLUOX yesterday and can’t yet tell what effects it has on my body. The joint pain is worse, I have a terrible allergic reaction to something where my eyes and nose keep tearing and dripping. My eyes are also burning me, it may be the daily contacts that I am wearing, but I have worn this brand with no problem for years. I change them twice a day to avoid conjunctivitis (which I thought were because my contacts were dirty!! Turns out it’s a Lyme things!!!). Anyway, I feel foggy and my vision is less than sharp even with the adjusted prescription…

It’s too early to tell whether or not AV is working, and whether what I am experiencing has to do with a Herx or Abx withdrawal or what…

It is worth mentioning that I am also taking probiotics (as you can see in the schedule above) that is specifically made for people who have been on Abx.

I honestly hope this doesn’t turn out to be a waste of time, money, and achieved health strides….

——————–

Love,

qp

Abx pulsing for Lyme Week 6

Post-pulsing (after week 6) period
Friday (12 of August | yesterday) was the last day of week 6… I intend to stop the antibiotics for a month simply to give my guts a break. I feel unbelievably well… I have also received a few comments from acquaintances who seem to have noticed a difference… Most recent was yesterday where a woman remarked how my “eyes don’t look tired anymore.” I take it to mean my dark circles have reduced, both color and sunkeness, which is true because I seem to be able to get away with no concealer (#MAC mineralized concealers seem to do the trick on bad days) and just a dab when absolutely needed… 

When it comes to the post-treatment period, I am planning on going on a GAPs diet for a month in addition to the Alfons Ven (#AlfonsVen) detox system. I figured it would give me time to actually see how the Lyme is progressing as well as review this supposed treatment.

Symptomatology 

The symptoms have mostly reduced… My herxing hasn’t been so bad compared to how crazy bad I did feel originally. But then again my threshold for pain tolerance is rather high… That said my left foot/toe, which experienced the most inflammation, and despite shrinking back to normal size, as well as my right one still experiences mild aching. I am not complaining since I can wear my shoes in my normal size again, rather than a size up in wide fit!

My weight has gone down too, I am feeling much better about myself. The only thing though is my craving for sugar, which I assume is part of the treatment side-effects (will post a few references that support this), and my abx belly. It’s very odd looking… My belly I mean. 

I am hoping once I sort out my guts with GAPs I can fix it up a bit before the next round of pulsing.

My periods have miraculously been consistent as well and back to its normal predictable shorter cycles! Since I was only on the pulsing treatment 6 weeks, I have only witnessed two periods… The odd thing however, is that between week 5 and 6 (during my p) I did get strange spotting before and after. The before was just “old blood” that was dark… The after was mucousy and blood-stained discharge that neither smelled nor continued more than 2 days… My hypothesis is that it’s just residual. I have been trying to swim more and perhaps being in the water held my flow from properly exiting.

One of the first symptoms I encountered after being bit was the loss of my sense of smell…. I have been struggling with sinuses ever since. Considering I was a master sniffer, this cause both benefits and trauma admittedly… Trauma because I can no longer smell things I knew existed which in itself is shocking because the experience of knowing and the inability to verify freaks me out…. And beneficial because I had an OCD reaction to scents I had an aversion to, such as the slightest traces of mildew, BO, or stank in general… I also noticed that my ears still retain water inside despite my best efforts to get rid of it (head shakes/tilts, drying my ears well, nothing too drastic). After week 6 has ended (today) I noticed that I can smell a lot better and less water seems to remain in my ears… It makes me smile to be closer to my normal scent-sensitive self! 

Happy day… I am thankful to be on the path to recovery, grateful for my partner’s help and insight, and content to be more self-aware about my body and mind despite all the negativity. 

My father who has worse symptoms than I, supports my brother and they both attack my Lyme “conviction” as the product of “women’s drama and monthly hysteria.” My father is quickly deteriorating and refuses to go on antibiotics because of his “health complications.” The man is 62 years old and looks 90, can barely move from the fatigue and is experiencing strange tremors and personality changes that are so visible, our friends and family believe he is hiding a case of Parkinson’s despite doctors’ negating that… As much as it pains me there’s not much I can do… 

I am just glad I was stubborn enough to hold on to a (metaphorical) lifebuoy (in the form of self-confidence) before those nasty bugs drowned me. I am still very bitter and resentful towards the doctors and gps I’ve seen here in the UK. I do hope science makes strides in Lyme research in my lifetime so I can rub it in that horrible “world renowned” infectious disease doc’s face. I liken what he did to someone kicking someone who’s already down. So much for ethics and a physician’s code!

‘Till then I won’t even bother thinking about it and will continue enjoying being my normal happy self as long as I can!

qp