Macrobid thought aphasia

Thought Aphasia With Normal Language After Macrobid and D Ribose

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In 2018 and after suffering from a suspected UTI, I successfully finished a course of Macrobid (nitrofurantoin). However it wasn’t until three days later when I made one of the biggest mistakes of my life. That mistake you ask? Taking a single dose of d ribose. Some of you may already be confused but please bear with me. It is important to note that I took this same supplement two weeks earlier without issue. My reason for taking it was to try and combat my relentless fatigue; I dread to think what would have happened if I’d taken more.

The Day I Lost My Inner Voice

Three days after completing the course of macrobid and an hour or two after taking d ribose, I felt this sudden, dramatic shift. At the time I was reading a book, just as I liked to before the crash. It was instantaneous in nature, much like someone had ripped the plug out of my brain and cut the charge in my neurons. Without warning, the words I was in the process of reading in my head, broke mid-sentence, turning to mush in my mind and causing a huge, internal stammer. There was some sort of sensation that appeared to wash over the upper-left part of my head/brain. I can’t describe it well, but it was like some sort of electrical discharge wave. A chasmic change in my cognitive perception had just occurred. I was confused and panicking.

Basically, my monologue, the internal voice in the head that relays thoughts, my “reading voice”, had become rather paralyzed and stunted. The words that had once chimed so effortlessly now sounded and felt warped and distorted in nature; trapped and mangled, as if being forced to break through some sort of barrier in order to be let out. Strangled.

My once free flowing monologue was heavily compressed and it was as though my brain no longer possessed the required currents to operate self-speech. There was an internal pressure between my head, throat, and what felt like my chest. What’s more, a bizarre, jumping sensation accompanied it, somewhere in the back of the throat or neck and under the skull. I will add that the jumping sensation has since lessened a bit.

Unfortunately, there has been no other change in the past two years since and I still feel damaged. It’s as though the words, which feel trapped and warped in my brain, are trying to escape through my mouth instead, whenever trying to engage my inner voice. The words in my mind practically sound like gibberish now. Not to mention the internal pressure makes reading uncomfortable. It was a truly horrifying experience and something that is still hindering me greatly. It is incredibly difficult to convey the severity or describe this accurately.

There are no accounts of anything like this online regarding monologue injury. Indeed, the closest thing I found was stroke victims being unable to recognize or understand language, which obviously isn’t the same thing. There are also a number of people who suffer from “blank mind” and have absent monologue. But again, this isn’t me.

Why did this happen? I don’t know, but I do believe that if I had not taken the d ribose this would not have occurred. I guess my cells were heavily taxed from dealing with the macrobid and the d ribose completely pushed them over the edge. It may have to do with the fact macrobid inhibits pyruvate metabolism. I don’t know. A recent Metabolomix test found I have low cis aconitic acid, which I admittedly do not know much about.

My Health History

At this stage, I’m going to throw in my medical history which may also sound bizarre but is obviously important. There’s really no way to sugar coat it.

Firstly, I am a 27 year old man with Asperger’s and ADHD. Below I’ll talk about the medications and things I took, along with how they affected me.

I took SSRIs in the past and Prozac gave me permanent anhedonia (inability to derive reward/pleasure from things). This too is incredibly torturous and I never experienced it until taking this drug. Actually, I could write multiple pieces on this subject alone. It also left me unable to catch colds, which some might find odd. This is actually an issue that affects a lot of young people who take antidepressants. It’s just not something you’ll hear of unless you go seeking it out. It is thought to be related to the way most modern antidepressants inhibit dopamine or affect methylation. All my attempts at treating this have been unsuccessful. As seems to be the norm.

However, in an attempt to combat this, I was put on 250mg amitriptyline. All this did was make things worse by damaging my memory and giving me depersonalization plus emotional numbness (worsened anhedonia basically), alongside myoclonus (I couldn’t walk without legs kicking out and falling over), and on top of hypothyroidism – I still take levothyroxine now for this.

I strongly feel amitriptyline messed up my hormones and stress response.

After a year, I dropped the dose and eventually came off it altogether after 2 years, due to strong palpitations. Interestingly, the withdrawal from 50mg gave me one of my only windows of relief from the anhedonia, alongside some flu symptoms. This could actually provide a big clue as to its origins. However, that soon dissipated and I returned to baseline.

Next, I took 25mg nortriptyline which nearly gave me liver damage and left me with dysautonomia consisting of POTS and extreme muscle fatigue. I have Gilbert’s syndrome (genetically tested), which only became apparent following this drug; another horrible experience that I’m still paying the price for now. Actually, I got periodic paralysis whenever I stood up on this one; I’m not entirely convinced that it has completely gone now that I’ve been off of it for three years.

Next biotin. Yes, biotin. It gave me neurogenic bladder from just 2 dose, each taken a day apart. I know it sounds ridiculous but everything I say is completely true. I think some degree of cross sensitization occurred from taking the tricyclics. Irrespective of biotin, I can’t properly feel my stomach or get nauseous. Not the worst thing in the world you might say but it isn’t natural at all.

The macrobid-ribose crash came next, as explained above. Unfortunately, however, the story doesn’t quite end there and before we press on, I would like to mention that I’ve taken many supplements and not all have had such disastrous effects.

Following the Macrobid-Ribose Crash

Due to the fact I could barely read or so much as think without feeling internal cognitive/physical discomfort or pressure, I frantically searched for something to resolve my condition. I could not accept my current state. Reading had been my life before and things were hard enough already with the prior issues.

Three weeks after the crash, I was forced to take trimethoprim for another UTI. I believed I’d be safe so long as I took nothing else for several weeks before or afterwards. All I got was temporary myoclonus, which I guess is a decent result for my sensitive brain.

Another month passed and I grew restless. It was then that I decided to take myo-inositol. Why? Because I mistakenly thought it could help balance whatever had gone wrong in my brain. Needless to say, it did not. What it did do was leave my cognition in an even worse state than before. I believe it also caused further imbalances, but I don’t know how exactly.

For 5 weeks, I took 11 grams of Myo-inositol a day in pill form; I now know this was another huge mistake, but hindsight truly is a wonderful thing. Besides, I never read that it could be harmful.

The Myo-inositol Decline

As a result of taking inositol I now, in addition to the above:

  • Get the wrong word 99% of the time when thinking.
  • Get half words and sentences muddled constantly.
  • See completely different words when looking at screen text or on paper-this is literally like the worst kind of dodgy, predictive text in my brain.
  • Not to mention, I also say the wrong words a lot now when talking out loud.
  • Plus my typing coordination has really suffered.

Myo inositol has also caused physical problems in the shape of severe and intense muscle twitching/spasms, along with constant facial tightness/pressure. The twitching was especially bad in my left temple but it’s all over my body, the arms, legs, etc. The facial tightness never seems to let up and there is also 24/7 hyper-salivation to boot. Oh, and my ADHD is 1000x worse; I just can’t focus on anything. Long walls of text are greatly daunting to me now where as before they were appealing.

I know that inositol affects the sodium-potassium pump, so there may be some degree of electrolyte imbalance. Although, I’m not sure if it could be responsible for all those symptoms. Rather worryingly people with dementia have been found to have high levels of Myo inositol.

I also have shortness of breath, but it is possible this occurred before inositol due to the macrobid-ribose crash. I think it might have, but my memory really is that bad now, despite still being relatively young.

Searching For Answers

Over the last three years, I have taken dozens of herbal supplements in an effort to resolve this. None have worked. Not long ago an online blood test I purchased showed I had slightly high potassium. However, this wasn’t flagged recently by my GP. Another test I purchased online also showed that my iron was over the top of the range. Again, not flagged by my GP. A Metabolomix test I purchased recently showed that I needed vitamins A, E, B1, B3, B6, magnesium, manganese and zinc.

I currently take: thiamine pyrophosphate, folinic acid, magnesium threonate, pyridoxamine,p5p, calcium citrate, adenosylcobalamin but am not sure what dose I should be taking and I have not yet begun supplementing with the other vitamins.

After all my experiences, I am very careful now about what I take but I’m unsure how to proceed. This has gone on for far too long now (understatement!) and this is all completely unacceptable to me.

Whatever has gone wrong in my brain is still a real mystery to me; one I am desperate to solve. And I strongly believe that I can, although it appears I may need help to do so.

I’d appreciate it if you could leave any thoughts, theories and comments you may have below. Many thanks.

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  1. Please read the many posts on HM concerning thiamine to try to avoid repetition

  2. Wow, well, I too had very negative reactions to biotin, myo-inositol and d-ribose, and was confused at the time as to why, because I could find few answers online. I do know that biotin competes with B5 for transport and have reason to believe I was deficient in B5, so maybe it just dropped my B5 level. Thiamine and B5 together make Acetyl CoA, which is very important to neurological function, and it’s my understanding that Acetyl CoA is what feeds into the citric acid cycle. Active thiamine is reportedly needed to make ribose, but I don’t know what’s required to metabolize it. As for the myo-inositol, I have a genetic mutation that is listed as being involved in the biological process of the phosphorylation of inositol, so maybe it’s a genetic connection. My “very rare” incomplete genetic microduplication is associated with high functioning asperger’s, but I don’t have that diagnosis.

    These negative reactions were BEFORE I starting the TTFD derivative of thiamine with magnesium, riboflavin and later Liposomal phospholipids, B5 and NAD. My previous home had a problem with hidden aspergillus, which makes a thiaminase in my understanding. I wasn’t able to tolerate the TPP form of thiamine or really much of any “activated” b vitamins (those with the phosphate on the end, possibly due to relatively low alkaline phosphatase, which I believe is also thiamine dependent), but I was taking high doses of thiamine salts when I had these negative reactions. Since I started the TTFD, magnesium and B5, I have no problems with biotin, d-ribose or Mayo-inositol, though I certainly wouldn’t recommend your trying them again. My scariest reaction of all was actually to glycine, and it made me feel like I was having a stroke. Later I figured out that was probably due to low B6. You may want to consider trialing the ttfd form of thiamine, but definitely consider taking a good magnesium supplement, good b complex and probably directly supplementing B5, riboflavin and Liposomal glutathione with it as those seem to get used up quickly for me, while taking the ttfd. TTFD taken with the right cofactors has dramatically improved my life, eliminating my symptoms associated with diagnosed dysautonomia, gastroparesis, and cerebellar ataxia.

    Acetyl Carnitine gets rid of my muscle pain, but I really think it’s the Acetyl piece of that, which is what Active thiamine and B5 reportedly make. I was taking the Acetyl carnitine first with gains, so I continue it. When I get facial twitching, zinc supplementation always eliminates it for me.

  3. I do not understand the rationale of taking d ribose!. I am not aware of anything that has been published about this as a “nutrient”. It is purely nutritional guesswork and I am afraid that you have to accept self responsibility. I have no idea how to advise you. In many of the comments I see in these case reports there is advice based on pure guesswork and sometimes it is frankly dangerous. If you have some proof of efficacy, then put it in the comment. I am tired of reading what can only be described as “half-assed” advice to such important questions from sick people that have often suffered from years of “half-assed” medicine.

  4. AS,

    I so empathize with your difficulties. Antibiotics and other prescribed drugs can deplete thiamine. You may have been on the cusp already.
    I know for me, now dependent after chronically left deficient with no treatment, a year of slowly upping dosing helped remarkably.
    I hope you find answers for your improvements. I highly recommend you research high dose thiamine therapy.
    Well wishes.

  5. I think your cells and metabolic processes are organizing themselves in a different manner than in a ‘normal’ body.
    Hence, medications and nutrients/supplements produce different effects than the ones expected.

    That you have Asperger’s points towards –> extracellular ATP.

    I hope you have learned by now that there is no such thing as a ‘safe’ medicine for you.
    I learned this when I was about 18, and was given medications for spine problems. Every single side effect on the pamphlet and then some, I experienced. I stopped going to doctors because iatrogenesis. I went back this past years, and same story.

    What and where your minerals are – inside and outside the cell is important to understand how to proceed, I think. With the Gilbert’s, you have a clue.

    My experiences have also lead me to focus just on nutrients and hormones, supplemental and with diet to address health. I’m weary of other substances and compounds (amino acids, etc). I’m finding that smaller doses are working for me – I figure out what is the minimum needed that takes care of symptoms. Often it is just grains/drops, throughout the day. Sublingual/transdermal/liquid forms. I try different forms of a vitamin until I find the one that works (some actually make things worse). Try out one substance at a time, otherwise it’s hard to keep track of what is doing what, and what is causing a problem when it arises. And I am also working at correcting metabolism, sleep, movement, how to find meaning in life, relationships (animals count!), etc.

    A word of caution: the B6. Many in weird diseases can have problems supplementing it. Be on the lookout for that one. Some do need it and benefit.

    With the brain issues – if you look into brain conditions and mitochondria, you may find something. Microdoses of lithium? I would research this well before trying anything. Something like this:

    I think you can find a way to heal.
    Instead of using a nutrient as an allopathic medicine to treat a symptom, try finding a way to correct the mitochondrial and metabolic dysfunction.

    I hope the B1 helps you. TPP is the form that works for me – HCl and benfo only made my brain issues way worse.

    Good luck!

    • A thought on the biotin:
      I was taking it too, at high doses (this was my lesson).
      My lysine levels tripled to very high levels, and my blood calcium also went up.
      This can happen with high lysine – calcium is retained from urine and from being excreted by the body. Messed up my nerves and blood glucose. Symptoms resolved once I stoped taking biotin.

      This may have something to do with your symptoms of neurogenic bladder.

      So again, your underlaying physiology, the minerals.

      It may be worth investigating your hormones. Don’t pay attention to doctors, they understand very little about this, and as a male, you’ll probably be scoffed. You just need the tests, to have a baseline.

  6. Hi Taube,

    I’d read studies of 18 grams being used without issue before for things like OCD. So I thought it was safe and it was recommended to me. I now know how reckless I was

  7. I am very sorry this has happened to you. I imagine how terrible the deficits are to deal with. I’m sorry I am not smart enough to be able to offer ideas for resolution of these problems. As a couple of asides: Amytriptyline is on lists of meds that are toxic to mitochondria, although that may have nothing to do with what you have been through, it’s not well known and I just wish that it was. It also has cytotoxic effects on fibroblasts.I have been told nortriptyline is like a metabolite of amitriptyline, so I don’t trust it anymore either.

    And as to the UTI’s, I just want to pass along that mast cell patients can be diagnosed with kidney or bladder infections, and there will be a rise in white blood cells, but if the urine is cultured, bacteria will not be found. Often it turns out we are not really suffering an infection, but rather a mast cell flare. White blood cells (leukocytes) include mast cells and other granulocytes. It is a mast cell over-activation issue going on for me, and not truly infections.

    So I wonder if you have might ever have considered a mast cell disease is playing a roll? My understanding is that many people with autism have mast cell problems. (See Dr. Theoharides in his somewhat older video, “Brain Allergy”.) Mast cells certainly cause many reactions to meds, supplements, etc. I have never seen a report of what you have described, but certainly have seen people discuss a wide array of issues, even seizures.

    Your situation sounds like maybe it began with a sudden wave of spreading depolarization? The D-ribose seems like a strange trigger.

    Drs Afrin and Molderings. The World Journal of Hematology/2016. Symptom list for Mast Cell Activation Syndrome/MCAS and Mastocytosis. Scroll down to table one in the *full text*. Obviously not all of these things are only caused by mast cells, but sometimes seeing this list is an “Ahaa” moment for people with multiple health issues.

    • Hi Sheila,

      yes, amitriptyline and most ADs like SSRIs are toxic to mitochondria.

      I’m not too sure about mast cells though. If anything my symptoms seem to resemble more of a deficiency in histamine. Amitriptyline is also one of the most powerful anti-histamines.

      • I second mast cell disorder. I’m a patient of Dr. Adrian and from his descriptions… well you could certainly have this. Unless you are an expert, it can be hard to disprove or prove this, though. It deserves your serious attention.

        I have a million problems and diagnosis. Things have happened to my body that doctors call impossible. What Afrin said? “Your either the unluckiest person on the planet or you have mast cell activation syndrome”.

        And he was right. The science didn’t lie.

        If you want to raise histamine try selegiline. It’s very effective for that.

        I actually have a similar problem to you with reading. Started suddenly 8 years ago. I used to read constantly! One day I will again 🙂

  8. Thank you so much for sharing your story. I don’t have any advice for you, and I apologize for that. But your story is beautifully written and it is clear that you are a very thoughtful person. I hope you are able to find some relief and healing!

  9. This is very sad. I believe definitely that supplements and drugs can change your brain. Very low dose B3 taken for about 15 months got rid of lifelong anxiety for me. It’s also very important for gut health ( pellagra ) as well as one of things which helps clear aldehydes.

    There is nothing to support ribose as the culprit here . It’s very possible the other drugs accumulated to the point where they were the issue.

    As to the myoinositol ? I’m not sure why such an enormous amount. 11 grams ? Did I read that right ?

    I know people who feel like MO saved their life at small doses so I hope this doesn’t deter someone from trying small doses if they have PCOS or other issues it has been documented to help with.
    But — I will always bang the drum for taking the LOWEST possible dose which helps you —which may be micro doses of what someone else would take

    Thank you

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