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Post by piglet on Apr 28, 2011 23:19:03 GMT -5
I sustained severe neurological ADRs from Cipro.
Being inside a white string, head cut in half, body cut in half, black holes and other black shapes, balls, brain doing somersaults, skin scar tissue, seeing brain in various shapes, kaleidoscopes of colors, seeing things upsidedown, disorganized letters in words and numbers, brain numbness, eyes being embedded in the brain, feeling as if worms are crawling all over body, holes through head, body parts being rearranged, complete confusion, I could list thousands. These are all neurological sensations, not painful, just sensations. Take place in the mind, they are not hallucinations, they are sensations which are "visible" only in the mind.
Also suffer seizures, nasty jerking of limbs body, diaphragm, ear ringing in both ears with a simultaneous low pitched train like sound in the left ear. Floaters, cobwebs, squirming white-light worm like things in the eyes.
Wondering if others had/have such adrs. I've been suffering all this for 18 months now.
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Post by piglet on May 20, 2011 11:21:01 GMT -5
19 months now. wondering if anyone with SEVERE cognitive/neuro brain damage actually recovered. From what I can gather no one with the severe brain damage recovers. I've met people who say they were severe but clearly were not, ie they recovered in 12-18 months, were able to go to work etc. This is not what I mean by severe. I have been waiting for years now for recovery. I go for walks, do simple breathing, totally abstain from any drugs, and try to find ways to stay alive each day, but nothing helps, I haven't improved at all since 2009. I am just as bad now as I was then, only worse in a lot of ways. I'm fairly certain at this point there will be no recovery for me. My old self/life is gone permanently. This is not a figure of speech, I have actual brain damage, chemical not physical. Physical brain damage would actually be better than what happened to me, at least then neuroplasticity would have kicked in to heal me. Sure, I may improve in some ways, but that old life of health and cognitive function is gone for good. I struggle to cope with these facts on top of the adrs I have. It makes it hard to persist because I think, what's the point? Oh well, life will go on either way, a life I used to be part of. I wish I could be again, but this forum is partly about resolution right? I have to resolve to the fact that this is how it is, that old life is gone and I have to either get used to living at a reduced state for the rest of my life or leave. Not a choice I want to make because both are horrific and hard to conceive at such a young age. Don't worry though, persons reading this, YOU are going to recover. If you read my health bio you will see I have been toxified most heavily. not many people took nuerotoxic antibiotics everyday for an entire year like me, and then dosed themselves in cipro. In fact I don't know ANYONE who took as much poison as I have. I have yet to meet anyone who has. So don't worry, you will recover. The vast majority do, I wish I could say I was one of them but my circumstances and adrs are extreme in nature. I wish this hadn't happened.
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Post by Deleted on May 21, 2011 0:03:56 GMT -5
Hi Piglet, it has been a struggle over a longer period by and then and there had been damage to my brain, where I thought it would never go away, but some symptoms became much better over time. I have seizures if I have an exposure and I have problems with the eyes like blurred vision, floaters, white light worms. There had been a timme, when I read a text I knew every single letter and I could connect it to a word but only mechanical like H O U S E but I did not know what it means. I had problems to listen to music. It was only noise. These symptoms have gone over time. It was so slowly that I did not realy noticed it. For me dealing with my brain is often as if I am in a labyrinth and I have to find my way through and I have to look, which part just functions and what I can make with it. So piglet, keep on fighting. It is likely that you will see some improvement over time. Namid
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Post by Deleted on May 24, 2012 5:54:10 GMT -5
i had similar symptoms as piglet and namid,
namid: how do you think your brains started to improve again? you did something specific?
thank you
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Post by Deleted on May 30, 2012 2:48:31 GMT -5
Sorry Steven for my late reply. I haven't been in the forum for a few days. In my case avoidance had been the main tool for me over all the years. You need to find out what you can tolerate and what not. Everything what you may put into your body like food through the mouth or chemicals in body products through the skin or smells through the nose, can cause symptoms in you. I found out very quickly that I could not tolerate fragrances and spices. Later it became more and more obvious that I could not tolerate phenols. I eat since many years a phenol reduced diet and I try to avoid as many chemicals as possible. You may not know what phenols are. In general they are the substances, which make many herbs and plants so healthy. The problem is that through the quinolones it is likely that some enzymes are no longer working the right way and that these under normal conditions very helpful substances in food are now causing problems ( for example: CYP450 enzymes, which you need to break down food and to change it into less hazard substances; or catalase). In addition some of the receptors in the nervous system may be more sensitive to stimulation than under normal condition. Therefor just pay attention under which conditions you may feel better and when you may feel worse. I hope I could help you a little bit. If you have questions, please feel free to ask. Namid
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Post by beebs on May 30, 2012 4:16:17 GMT -5
Reinforcing Namid's response, here is a list of some of my triggers: Folic Acid, Folinic, or Folate supps, but not from food sources. All cooking herbs Dental Anesthetics, such as Novocaine All solvents + detergents etc. Incense, volatile oils Citronella essential oil mosquitoe repellant triggered massive neuro symptoms (lasted about six months) Fresh tumeric (triggered old symptoms such as various agnosia, as piglet described, and more) this lasted for about six months Atmospheric pressures, and other weather fluctuations Heat - worsening seizure types Foods are so limited, symptoms variability As for foods, some foods high in sulphur such as asparagus Chicken, high in alanine Can't have sea foods, but could be purine for some people And other compounds in foods, unpredictable Probably meds, I wouldn't know - take none Another symptoms which springs up (rarely) is burning mouth syndrome, that is burning tongue and mucous membrane. It used to be thought of as "psychological" but now found that NMDA and TPRV receptors dysfunction involved. Its quite horrid, the tongue and other mucous membrane in mouth burns with food, vits/supps.
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Post by Deleted on May 30, 2012 23:07:01 GMT -5
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Post by beebs on Sept 14, 2012 5:25:08 GMT -5
Main stream medicine catching up with brain and gut connection. MRIs do not usually show microscopic damage to brain.
Brain Abnormalities Common in Celiac Disease Patients Pam Harrison Authors and Disclosures
September 10, 2012 — Patients with celiac disease and neurologic symptoms have substantial structural and functional brain deficits as detected on magnetic resonance imaging (MRI), British investigators have observed.
Stuart Currie, PhD, and colleagues from the University of Sheffield, United Kingdom, found that patients with celiac disease and balance disturbances had significantly smaller cerebellar volumes than age- and sex-matched controls.
The same imaging studies showed significantly less grey matter density in multiple regions of the brain, including the cerebellum, among patients with celiac disease than among controls. Similarly, white matter abnormalities (WMAs) were identified in a significant proportion of the celiac disease cohort versus none of the controls.
"We were not surprised by the differences in cerebellar volume because we know that ataxia is one of the commonest neurological manifestations of celiac disease and we were not particularly surprised by the findings of WMAs either because we had previously described this entity of gluten encephalopathy — headache and WMAs — in patients with celiac disease so here, we just demonstrated that these abnormalities are common," co-investigator Marios Hadjivassiliou, MD, also from the University of Sheffield, told Medscape Medical News.
On the other hand, the fact that other areas of the brain are involved is interesting, he added, "in that they could potentially explain some of the other neurological problems such as sensory disturbances in patients who do not have peripheral neuropathy."
They might also help explain the anxiety that patients with celiac disease often have as well, he noted.
The study was published online August 20 in the Journal of Neurology, Neurosurgery and Psychiatry.
Neurologic Opinion
As the authors note, 33 eligible patients with celiac disease, mean age 44 years, were referred for neurologic consultation between January 2009 and March 2011.
Patients were referred for imaging for balance disturbances, headache, or sensory loss. The median time from the diagnosis of celiac disease to MRI was 2.1 years.
MRI findings revealed that cerebellar volumes were significantly smaller than those in controls, but only in patients who reported balance disturbances: 6.9% vs 7.4%, respectively (P < .05).
On the other hand, the volume of grey matter in both superior cerebellar hemispheres and in multiple cortical regions was significantly smaller in the patient group overall than in age- and sex-matched controls (P < .05).
Thirty-six percent of patients with celiac disease were also found to harbor WMAs. The prevalence of WMAs was greatest in the headache subgroup, the authors note.
Table. WMAs Among Patient Subgroups
Patient Subgroup Mean Age (y) Patients With WMA, n (%) Balance disturbances (n = 20) 52 6 (30) Headache (n = 6) 54 4 (67) Sensory loss (n = 4) 56 1 (25)
Gluten-Free Diet
As the authors discuss, two thirds of the patient group indicated they followed a gluten-free diet and were compliant with the diet when the imaging took place. The presence of WMAs in patients who appeared to have no known vascular risk factors implies a possible causal link between gluten sensitivity and WMAs, they add.
"What the findings mean is that patients with established celiac disease already on diet appear to have abnormal imaging that could account for some of their ongoing neurological complaints," Dr. Hadjivassiliou said.
"What it also means is that the gluten-free diet in these cases needs to be strict as exposure to small amounts of gluten may still be enough to continue the neurological insult. This is why close monitoring and demonstration that gluten-related antibodies are eliminated from the blood are essential."
Anna DePold Hohler, MD, from Boston University School of Medicine in Massachusetts told Medscape Medical News that the findings of decreased brain volume in patients with celiac disease help to solidify the neurologic implications of this disease.
"It also encourages further study in this area to better clarify the connection between the two and to eventually determine if treatment of celiac might also impact the brain," she added.
The precise pathologic mechanism between brain abnormalities and celiac disease is under investigation but it will probably implicate an immunologic reaction against the TG6 antigen, which is found in the brain.
The TG6 antigen shares 65% homology with TG2, the autoantigen in celiac disease, and TG3, the autoantigen in dermatitis herpetiformis.
The authors and Dr. DePold Hohler have disclosed no relevant financial relationships.
J Neurol Neurosurg Psychiatry. Published online August 20, 2012. Abstract.
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