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Thread: Going through a rough time, please help! page

  1. #1
    jbizzler's Avatar
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    Unhappy Going through a rough time, please help!

    Primal Fuel
    Hi all,

    I am new to the forum but I am posting here because I have a massive conundrum and no matter how much I think about the problem I cannot figure out the correct answer.

    In March 2009 I had a severe adverse drug reaction to the anti-malerial drug Lariam (Mefloquine Hydrochloride). I developed neurotoxicity rapidly and this resulted in a dose dependent injury to my vestibular system and emotional centres of my brain. I have not been the same since.

    Initially experienced the following symptoms:

    Mental Side Effects (almost everything): panic attacks, severe constant anxiety, nightmares, severe insomnia, depression, suicidal ideation, depression, social anxiety, agoraphobia, anhedonia (lack of interest), thanatophobia (fear of dying), rage, aggression, anger, mood swings, paranoia... almost anything except schizophrenia or hallucinations (although I had an intense fear of this happening too...)
    Physical Side Effects: weight loss (~12kg), inability to eat, severe fatigue, headache, severe liver pain, “toxic feeling”, agitation, sweating, tremor, postural orthostatic tachycardia, faintness, dry eyes, “floaters”, malaise, weakness, tremor, numb limbs .etc
    Vestibular Dysfunction: dizziness, loss of balance, vertigo, poor cognition, motion sickness, confused thoughts, jumbled speech, photosensitivity, sound sensitivity, “brain fog”, low stress tolerance...

    From March '09 till September '09 I had to take a strong sedative to sleep with the neurotoxicity (after having 5 days of no sleep and severe nightmares "sleeping awake". I was also wrongly recommended an anti-depressant by the psychiatrist I was seeing who added in cipralex (escitalopram) for "generalised anxiety disorder". What was actually happening was that I was still very neurotoxic and couldn't realise what was happening until a few months down the line.

    By October '09 I was drug free and sleeping normally, and not seeing the stupid psychiatrist. I continued to struggle with anxiety, brain fog and fatigue, trying to maintain everything in my work and keep going and amazingly I pulled through. By June '10 I was continuing to see improvement, but still struggling with fatigue and brain fog, but the anxiety symptoms were pretty much gone.

    In July '10 I developed a kidney stone (which I believe is still a relic of Lariam) and had a severe pain episode just before I was due to take a month off to India. The pain subsided and I went to India until August '10. I continued back at work, still not really refreshed most likely because of remaining toxicity, minor damage to mitochondria and adrenal fatigue and things like that. I was still able to do activities on holiday but it always felt like a struggle (life in general is still challenging).

    From September '10 till present I started doing VRT (vestibular rehabilitation therapy) to try and improve the brain fog associated with the Lariam injury, which works by retraining the vestibular system. I saw enormous improvement and was starting to feel like I had turned the corner. October '10 was the best month yet. I was still fatigued but energetic enough to work 10 hour days and go to the gym, I was starting to feel joy for the first time in over 1.5 years. I was seeing benefits with Ayurvedic detox compounds too.

    Then unfortunately a huge setback occurred. November '10 I started having severe kidney stone pains again, recognising them from before I thought that I managed to pass the stone. However the next day in the office I felt really nauseous and lightheaded and exhausted. I ended up going to hospital because I thought I was going septic, they kept me in overnight and said I had a trace of an infection and gave me Trimethoprim to fix it. They did an x-ray and didn't see any stones so again thought I had passed it. I completed the course of trimethoprim and 2 days later the sickness, nausea and out of breath feelings came back. Blood work came back normal but urine still showed signs of infection.

    They prescribed me Augmentin 625 to take for 1 week. I took it and felt better on the time that I was taking it but had some nasty side effects now that I am sensitised to medication. I had a recurrence of dizziness and brain fog just on day two, then I started experiencing insomnia which is a "rare side effect". I managed to complete the full course and whilst not feeling sick and felt a bit better on the course of the medication. In the mean time I saw a private urologist and had a CT scan which confirmed I have a 4mm kidney stone in my left tract near the entrance, in the exact same place as the one in July, and the urologist suspected that I infact had never passed the stone since I had never seen it. He then suggested I had a ureterscopy for the following reasons, despite my concern about the anaesthesia :

    "I looked at your films this morning with Dr Clare Allen.
    Whilst she would still be v interested to see the previous images, she agreed that ureteroscopy is the best next step.

    I can understand your concerns, but I remain of the view that a ureteroscopy is the right treatment.

    You have symptoms, blood in your urine, and merit on those grounds alone a cystoscopy - this would need to be done under a general anaesthetic. Therefore even if the ureteroscopy is NORMAL you will not have had an un-neccesary general anaesthetic. If there is a stone (and I think we are both agreed that this is the most likely of the three scenarios we discussed) then it can be treated there and then.

    Ureteroscopy therefore offers:
    1) Definitive exclusion of bladder lining abnormality causing blood in urine
    2) Definitive diagnosis for stone or not
    3) Most reliable way of treating the stone if it is there
    4) Best way of protecting the ureter and kidney if stone is still there.

    ESWL and herbal (or any other kind of medicine) do not really offer any of these, let alone all at once. Hence my advice was, and remains, a ureteroscopy....



    After stopping the antibiotics, the same day as finding this out. I suddenly noticed my physical condition deteriorate. I tried to go to the shop and I ended up having a HR of 200 and thought I was going to collapsed. Any kind of exertion sent my HR through the roof. I called the ambulance and they checked temperature, blood sugar, ECG, and found absolutely nothing wrong (also all my last urine and blood test were fine and my kidney function is completely normal). I thought this could be because the infection was coming back, and since being massively concerned about my urologists' eagerness to operate, which means general anaesthetic, pain killers, antibiotics and is in danger of pushing my mild CFS into a moderate CFS condition. At this point, I started drinking quebra pedra "stone shatter" tea which is also good for UTIs and I noticed that it made my urine stink initially and then it cleared up. Also amazingly after drinking just 3 cups I started to notice my stone move (and still moving as I write this). Buoyed by this and the fact I was having good night sleeps for the last few days, I thought that I would be able to clear the stone and avoid the operation. Unfortunately I am still in a dilemma, 3 days later and my condition is still terrible. I walked to the shop again and my HR was at least 150-160 which is mildly better but still bad, but now also unfortunately the quebra pedra has a side effect of lowering blood sugar so I've got all jittery and a headache and its added to my dizziness again.

    So, dilemma:
    1) If I have an operation to remove the kidney stone, I'll have to have anaesthesia, pain killers, antibiotics and most likely a stent put in and yet another operation in 4 weeks to remove it.

    2) I am not convinced that there is good reason to have an operation if the stone does pass, as checking the bladder lining seems a rather weak reason as the blood is obviously caused by the stone.

    3) My operation is scheduled for Tuesday and I may or may not pass the stone before then. I could delay or cancel it but then I am risking further infection coming back.

    4) I can't keep taking Quebra Pedra because it might be lowering my blood sugar and exasperating the exertion symptoms and fast HR (could be post infection fatigue OR a lowering blood sugar, or both).

    5) All my friends and colleagues think I am "worrying too much" and I "need to do the right thing and face the operation" but they really don't understand the intracacies of the CFS / neurotoxicity I have battled through. I've also seen this: http://www.drmyhill.co.uk/wiki/CFS_and_Anaesthetics

    I feel totally alone in this situation, I have absolutely no idea what the right course of action is. Drink the tea, don't drink the tea, cancel the operation, go through with the operation. I just don't know.

    One side of me is telling me that I need to remove the stone quickly to move on, the other side is saying that the doctor is being too quick to operate and he has other motives, and that I might wake from that OR bed and have terrible fogginess again and be back at the early days of Lariam. I am also very worried about having a tent and taking so many drugs when I could avoid all this by passing it naturally, but then I can't drink the tea because its lowering my blood sugar and making me feel bad. That said, how can I consider having an operation with anaesthesia when my heart rate goes as high as 150 just walking around?

    I don't know whats happened, but I've really been set back by all of this and I am worried the wrong decisions here could set me back further. Any help would be greatly appreciated.

  2. #2
    dragonmamma's Avatar
    dragonmamma is offline Senior Member
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    Beats me. This goes way beyond what this forum is about.

    One bit of advice, though. Stop eating sugar and grains, starting today. No sweets, oatmeal, corn, wheat, bread, crackers, etc. Whatever you decide about the rest of that stuff, this one thing will make your body healthier than it would be otherwise.

  3. #3
    lizch's Avatar
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    Quote Originally Posted by dragonmamma View Post
    Beats me. This goes way beyond what this forum is about.

    One bit of advice, though. Stop eating sugar and grains, starting today. No sweets, oatmeal, corn, wheat, bread, crackers, etc. Whatever you decide about the rest of that stuff, this one thing will make your body healthier than it would be otherwise.
    +1
    Liz.

    Zone diet on and off for several years....worked, but too much focus on exact meal composition
    Primal since July 2010...skinniest I've ever been and the least stressed about food

  4. #4
    Grizz's Avatar
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    jbizzler,

    Kidney stones ( and Gallbladder stones) - do NOT require an operation to remove. They can be broken up with sound waves. See these links.

    Extraporeal Shock Wave Lithotripsy (ESWL) sound waves can break up gallstones, kidney stones
    http://www.diagnose-me.com/cond/C141240.html
    http://www.ajronline.org/cgi/reprint/150/6/1231.pdf

    Also note this: mefloquine is HORRIBLE STUFF !
    "In areas where doxycycline and mefloquine are equally effacious in preventing malaria, doxycycline is the drug of choice. Mefloquine should only be used for personnel with contraindications to doxycycline and do not have any contraindications to the use of mefloquine...
    http://en.wikipedia.org/wiki/Mefloquine
    http://www.drugs.com/pro/mefloquine.html
    http://www.medicineonline.com/drugs/...E-Tablets.html

    What is worse? The Malaria or the treatment? Damn that treatment is HORRIBLE. Wish I could help you more. Isn't there any better treatments for malaria? Here is a list of other treatments:
    http://www.webmd.com/news/20070522/n...eating-malaria

    Good luck to you, please keep us informed,
    Grizz
    Last edited by Grizz; 12-04-2010 at 12:21 PM.

  5. #5
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    i think it might also be helpful for you to find a support network of people with a similar condition with the neurotoxicity. they will have the experience to speak to this.

    otherwise, whatever decision you make will be the right one.

  6. #6
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    Grizz,
    With all due respect, stating your position on gallstones as an absolute, could be harmful. Not all gallbladders can be saved. Not getting a diseased organ removed can create a boatload of other problems, including pancreatitis.

  7. #7
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    Kidney stones can be disolved by ingesting vinegar.

    Placing a stent is a ploy to charge for two surgeries instead of doing just one. If the stone passes, I would wait to see if there is still any blood. However, I am not about to really tell you what to do. Even if I were a paid up member of the AMA I could not do that in this forum. Just be smart. Second opinions are a worthwhile thing.

    I had malaria back in the fall of 1965. A souvenir of a tropical vacation. It was complicated by Dengue Fever before it was totally cured. Weird. Had problems with it for a number of years. It passed. Some hot, sleepless nights but tea, lemon, and rum got me over it.

    I have had kidney stones. Hey, know what? Just about everybody has kidney stones. They are not a problem until they try to move and are too large to fit easily through the 'tubes' on the way out. Again, vinegar does work. Not exactly overnight but it works. A tablespoon twice a day would more than suffice. Sometimes with a bit of pain killer to put up with discomfort. If you can get hold of the stone, it would be nice to know its makeup. I won't get into that here; it isn't your immediate concern.

    Go back and re-read what dragonmamma told you about what to eat and not eat. Try some probiotics too. All those antibiotics are going to cause problems---long lasting problems if you don't address it right away.

    I wish you the best. What you need most now is faith that you can overcome, because your confidence in overcoming is most important. You can do it. You will do it.
    Tayatha om bekandze

    Bekandze maha bekandze

    Randza samu gate soha

  8. #8
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    Lemon will dissolve them. Google it. I have a good friend for whom this worked, plus I've been aware of this remedy for years.

    In the future, lay off the dairy, as that is what causes them. And once you have one, it is very likely you will have another.
    "Let food be thy medicine and medicine be thy food." -- Hippocrates

  9. #9
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    Look into lithotripsy for breaking up kidney stones without surgery.

  10. #10
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    I'll leave the kidney stones to the experts but it is certainly worth getting a second opinion.

    I do recommend starting probiotics ASAP to rebuild your gut flora as it has probably been damaged by the antibiotics. Kefir is better than yogurt and I would add some supplemental probiotics. Also incorporate inulin and pectin which will help feed tne flora.

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