Discussions By Condition: Medical Stories

Food Poisoning - Ciguatera

Posted In: Medical Stories 40 Replies
  • Posted By: Fanfayr
  • January 24, 2009
  • 11:17 PM

I need to know if there is anyone else who is suffering from food poisoning of the neuro-toxin Ciguatera. I had eating Shashimi Tuna at a very nice restaurant. Never expected to get sick from it. But, I did. 10 months later it is still kicking my butt. There is no way but symptom diagnosis to determine this nasty toxin. I have been told.. "there is no way you got ciguatera from tuna" hello.. that is what I ate and 2 1/2 to 3 hours I was vomiting violently and diarrhea immensely. All of it was black.. I didn't eat anything black. But, my body was doing its job by expelling it from my system. In every direction possible.
To this day 10 months later I have a lot of very bad days. Only a few good days.. Imagine in 10 months only 3 good days. Every day I have some level of a headache. (MRI done - diag. fine) numbness in hand and feet, weakness in hands a feet, blurred vision. I have also had and still have but not as bad.. difficulty thinking. My cognitive thinking was horrible. Now, is just bad. My short term memory has issues also. My speach is slurred at times. This I only found out from winning tickets from a radio station and hearing myself replayed on the radio. I sounded drunk. Ah, no I don't drink, I don't smoke and I do not take any drugs. I was diagnosised by my primary the week following the food poisoning. I had mild pain in my back but figured it would go away. The pain got worse and it was in my kidney area. The doctor says, go to the ER. So, I did. I was fortuante to get a doctor who studied with some others who did research on Ciguatera. He at that time diagnosised me with Ciguatera also. However the one and only somewhat conrtovertional treatment of Manitol wasn't offered as it had been over 48 hours from contamination. All of the symptoms that are stated to come with this neuro-toxin I have. Now, 10 months later I have peripheral neuropathy. The right side of my body is numb and weak. It is my right eye that goes out of focus. It is my right kidney that pains me every day also a pain in the lower quadrant of my stomach is painful. My right knee that gives out on me while walking. That seems to happen a lot. My muscles hurt, my joints hurt. I am always tired.. very tired.. I don't want to get out of bed in the morning. I sweat profusely, at night and during the day. If I try to exercises I itch all over. I have these areas on my body. The rash use to be worse but that shows some improvement. I have nightmares off and on along with sleep paralysis. Which is very freaky.. never had anything like that. I have read that this toxin if fat soluable. I have gained weight since this illness, I have tried loosing weight and got sicker. So is this possible? How can I heal this. I am only 52 and don't want to live my life this misserable. Now the doctors are trying to lable me with this and that. The peripheral neuropathy.. they are trying to say I am diabetic.. and I have never been diagnosed. Maybe now that everything else is screwed up. Oh.. carpel tunnel, yes I have had surgeries for that.. but wasn't having issues till the day after I got sick.. now, they want to say I have carpel tunnel. I need a doctor who is an expert with this toxin. Any help is welcome.

Reply Flag this Discussion

40 Replies:

  • I need to know if there is anyone else who is suffering from food poisoning of the neuro-toxin Ciguatera. I had eating Shashimi Tuna at a very nice restaurant. Never expected to get sick from it. But, I did. 10 months later it is still kicking my butt. There is no way but symptom diagnosis to determine this nasty toxin. I have been told.. "there is no way you got ciguatera from tuna" hello.. that is what I ate and 2 1/2 to 3 hours I was vomiting violently and diarrhea immensely. All of it was black.. I didn't eat anything black. But, my body was doing its job by expelling it from my system. In every direction possible.To this day 10 months later I have a lot of very bad days. Only a few good days.. Imagine in 10 months only 3 good days. Every day I have some level of a headache. (MRI done - diag. fine) numbness in hand and feet, weakness in hands a feet, blurred vision. I have also had and still have but not as bad.. difficulty thinking. My cognitive thinking was horrible. Now, is just bad. My short term memory has issues also. My speach is slurred at times. This I only found out from winning tickets from a radio station and hearing myself replayed on the radio. I sounded drunk. Ah, no I don't drink, I don't smoke and I do not take any drugs. I was diagnosised by my primary the week following the food poisoning. I had mild pain in my back but figured it would go away. The pain got worse and it was in my kidney area. The doctor says, go to the ER. So, I did. I was fortuante to get a doctor who studied with some others who did research on Ciguatera. He at that time diagnosised me with Ciguatera also. However the one and only somewhat conrtovertional treatment of Manitol wasn't offered as it had been over 48 hours from contamination. All of the symptoms that are stated to come with this neuro-toxin I have. Now, 10 months later I have peripheral neuropathy. The right side of my body is numb and weak. It is my right eye that goes out of focus. It is my right kidney that pains me every day also a pain in the lower quadrant of my stomach is painful. My right knee that gives out on me while walking. That seems to happen a lot. My muscles hurt, my joints hurt. I am always tired.. very tired.. I don't want to get out of bed in the morning. I sweat profusely, at night and during the day. If I try to exercises I itch all over. I have these areas on my body. The rash use to be worse but that shows some improvement. I have nightmares off and on along with sleep paralysis. Which is very freaky.. never had anything like that. I have read that this toxin if fat soluable. I have gained weight since this illness, I have tried loosing weight and got sicker. So is this possible? How can I heal this. I am only 52 and don't want to live my life this misserable. Now the doctors are trying to lable me with this and that. The peripheral neuropathy.. they are trying to say I am diabetic.. and I have never been diagnosed. Maybe now that everything else is screwed up. Oh.. carpel tunnel, yes I have had surgeries for that.. but wasn't having issues till the day after I got sick.. now, they want to say I have carpel tunnel. I need a doctor who is an expert with this toxin. Any help is welcome. Hi Fanfayr, I sorry to hear of your problem, of whatever cause. I don't know what caused your problems. Possibly it is Ciguatera poisoning but as you say "Tuna?" unless it is because a top of the chain predator at the reef fish contaminated with the toxin. I don't know that anything might help. There is very slender information that methylb12 might help based on my knowlege of one person who tried it out of desparation. Whether it helps because it is neuroprotective against a number of toxins or because some research indicates that it can heal neurological damage from unrelated toxic or traumatic cause, I don't know. One of the effects I and others have experienced is a generalized multisystem crash similar to yours based on food poisoning or viral/bacterial illness or injury or vaccination. This appears to occur when one is on the edge of barely enough b12 and something puts us over the edge and in a downward spiral. I went 16 years down the road on such a spiral and have masssively recovered due to methylb12 plus cofactors. I have no idea what the odds are that this might be the situation in your case. On the other hand, knowing what I do, if I were in such a fix as you, I would try it or suggest it to a loved one. My neuropthies are mostly healed and those that are not are still improving. http://forums.wrongdiagnosis.com/showthread.php?p=141490#post141490 If you want to know the details of how to use the methylb12 plus cofactors in an effective manner, or at least one that has elliminated all kinds of reasons for not working, come on over to the b12 forum. The only possible way to know if it could help is to try it. As response to it is usually pronounced and rapid if it is going to help, a 2 month trial will usually indicate if there is any possiblility there. I can't make any promises, only the mention of a possibility that can be tested for about $25. Good luck.
    Freddd 3,576 Replies
    • January 27, 2009
    • 05:18 AM
    • 0
    Flag this Response
  • Thank you for your suggestion. Actually I had been getting regular shots of B-12 and B-complex with C. Painful but good. I actually got a shot that same day I got sick. Since I wasn't feeling well. I have a doctor that has an office in the building I manage. I have continued to get shots through out as it is well known to help the neuro receptors to do their conducting. I don't want to imagine how bad off I could be if I hadn't been getting those shots. I did a look up on Tuna. There area actually many names for Tuna as there are many different types of Tuna. Amberjack is actually a Tuna. Which is one that carries the ciguatera. I am pretty sure since these are my symptoms and it was Tuna that I was told I was eating. It may have been bought on discount. It actually tasted excellent. No mal taste to it. However I don't believe it was prepped correctly either as I did see a darker area to it but didn't think much of it and ate it. I did say it was all good lol. My friend got sick from it also the next day. Not as bad as me thank goodness. Thank you again for your suggestion. :)
    Fanfayr 9 Replies
    • January 27, 2009
    • 02:42 PM
    • 0
    Flag this Response
  • Thank you for your suggestion. Actually I had been getting regular shots of B-12 and B-complex with C. Painful but good. I actually got a shot that same day I got sick. Since I wasn't feeling well. I have a doctor that has an office in the building I manage. I have continued to get shots through out as it is well known to help the neuro receptors to do their conducting. I don't want to imagine how bad off I could be if I hadn't been getting those shots. I did a look up on Tuna. There area actually many names for Tuna as there are many different types of Tuna. Amberjack is actually a Tuna. Which is one that carries the ciguatera. I am pretty sure since these are my symptoms and it was Tuna that I was told I was eating. It may have been bought on discount. It actually tasted excellent. No mal taste to it. However I don't believe it was prepped correctly either as I did see a darker area to it but didn't think much of it and ate it. I did say it was all good lol. My friend got sick from it also the next day. Not as bad as me thank goodness. Thank you again for your suggestion. :) Hi Fanfayr, The injection you got was cyanob12 most likely. Methylb12 is anywhere from 100 to 10,000 times more active and FAR superior at removing toxins and doing neurological healing. The difference is so huge they should not be considered even remotely the same. Also, you would need it once or twice daily for a months or a year to help with damage of this degree.
    Freddd 3,576 Replies
    • January 27, 2009
    • 04:19 PM
    • 0
    Flag this Response
  • Wow, that is so good to know. I am going to the Endocrynologist tomorrow. I will mention it to him. But most likely will have to ask the neurologist. Which I should be seeing for a follow up soon. Thank you so very much for caring enough to reply. ty
    Fanfayr 9 Replies
    • January 27, 2009
    • 09:51 PM
    • 0
    Flag this Response
  • Wow, that is so good to know. I am going to the Endocrynologist tomorrow. I will mention it to him. But most likely will have to ask the neurologist. Which I should be seeing for a follow up soon. Thank you so very much for caring enough to reply. ty Hi Ty, In all fairness I think that you need to know the good, the bad and the ugly. Injectable methylb12 is not easily available, only at some compounding pharmacies and is relatively expensive. Second, it isn't very stable. I have 3 years experience with it. It breaks down to hydroxyb12 which does not produce the same results. I end up returning about 1 batch in 6 because of that. Further it degrades over the course of a month even wrapped in foil so no exposure to light and stored in the meat drawer with the coldest setting in the refrigerator. I self inject with 7.5mg twice a day producing a reversal of neurological degeneration. Since starting the 7.5mg I have reversed foot drop, loss of position sense of feet and legs, numbness of feet, regained motor control of toes, lack of balance and things of that sort. A 5mg injection did not do that. 7.5mg does but if only done daily reaches a plateau quickly with one step forward for 12 hours and 1 step backwards for 12 hours. The 7.5mg is in the range indicated by Japanese research for upregulated neurological healing. Other things had reversed on 5mg once a day or sublinguals. The good news is that it can be injected subcutanous with a 5/16" needle on an insulin syringe with 25mg/ml solution. For most folks who don't need injection, a sublingual of a tested brand, and 2 brands of 10 were 5 star in comparison testing by 5 hypersensitives; Enzynmatic Therapy 1mg and Jarrow Formula 1mg and 5mg. The 5mg Jarrow sublingual, when allowed to linger 45 minutes or more produced 15-20% absorbtion when compared by urine colorimetry and effect to sc injections. A single 5mg Jarrow, if allowed to linger for 45 minutes or more produced an effect equivalent to a 750 to 1000mcg sc injection of methylb12. The sublinguals of this brand are far more reliable than injections and are not fragile in dry form. Another factor is adenosylb12 which populates the mitochondria and does something quite different from the methylb12 and some people have to have both. The tested sublingual brand of adenosylb12 is Country Life Dibencozide 3mg. Further methylfolate, either by prescription or OTC as a vitamin appeared to double the amount of methylb12 I could inject before it showed up in the urine indicating better absorbtion and transport. It is essential for neurological healing for some people. Further we do this on top of a base of all the usual vitamins and minerals, Omega3 fish oils, NAC and glutamin as precursers of glutathione which forms an intermediate form of cobalamin in the body. These increase the effectiveness of the two natural b12s by large factors. There are several other critical cofactors that some people need. Neither natural b12 all by iteself produces profound and sustained healing. Now you know more what you may be getting into. Six years ago I was ready to die and totally disabled. I have returned from the edge thanks to the natural forms of b12. I had been taking 1mg daily of cyanob12 for decades and it did no good and even made things worse for me. It has been worth every dollar to get my life back.
    Freddd 3,576 Replies
    • January 27, 2009
    • 10:58 PM
    • 0
    Flag this Response
  • AMEN to that. I have only been problematic now for 10 months. A horrible 10 months to say the least. I just found out today via results of a 3 hour GTT that I am diabetic. However, it is my belief that I am this way due to the lack of exercise and not eating right over these past months. When I exercise... other then the pain and discomfort I also sweat an abnormal amount with itching all over and worse in wetter areas. It's horrible. So, I know that this peripheral neuropathy that I am suffering from is not diabetic neuropathy. All of this doesn't happen over night. Unless it is a poison via the neuro-toxin of ciguatera. So, possibly with the help of this methlyB-12 I could possibly win back my body from this. Sounds wonderful to get rid of the vertigo also that has come with all of this. I have a softail Harley waiting for me.. not patiently I may add. I had to put in a new battery. But I never know when the dizzyness is going to pop up. I can't at this time at least I have been told not to take any fish oil's or even eat fish at this time. But Vitamins I have been taking even though they are ******n my stomach. I will be interested in what the doc says tomorrow. I will refuse to take any sugar meds as I have issues with Hypoglycemia not Hyper... the blood may show one thing buy my body tells me the other. I can't wait till I can get my life back and do what I want to do.. not just think about what needs to be done with no energy or ability to do it. ty againDebbie
    Fanfayr 9 Replies
    • January 28, 2009
    • 00:46 AM
    • 0
    Flag this Response
  • Ty, Stay away from the fish oil, that will make you very ill. And I suggest going to a Nuero Psych for evaluation. My Son and I have had Cigua Toxin poisoning for the last 2 years. I have researched "cures" and learned about the disease extensively. We both have extreme cases, and please, while you will have good periods, it is imperative to learn what sets off the recurrence and how to limit them. While you can limit some of the reactions, you can not keep them all away. I suggest first you learn; where did the fish buyer purchase their fish that you ate. You should have a friend help you on this one and look into the sellers records, they probably will have records. This will likely help you in discovering if it is P-tx or Ctx, a big difference to the person ingesting it. P, like it appears, is from the Pacific regions, and C is from the Caribbean. If you have a choice, you would rather have C, after having said this it is what they use in third world countries to make Zombies or people unable to respond verbally & that’s the good kind! In deference to the person that gave you the vitamin B12, well, it might aid in supporting the system but use caution; if you imbalance your vitamins you can get into trouble and all vitamins are not the same. Some are lipid soluable and some are water based, they should not be taken at the same time. As my son and I can attest to, B-12 it did nothing for us after months and comes from a suggestion on a holistic website with little else valuable. We have had better luck with a few other things, but start thinking about nervous system support & enhancing brain function., if you are going to help yourself I suggest you learn what is really going on with your body, unfortunately the medical journals address "supportive" care, no cure and limited information. Your doctor may not have the time or ability to did further. Now with that being said, there is help coming, there have been some exciting recent discoveries with hope. When we returned from vacation in the Cook Islands, my sons eyes would roll back into his head & he was unable speak. As for me, I screamed a lot. Noise set off panic attacks, blurred vision, chronic headaches, myalgia & more. We have come a long way, not well enough to work, lots of memory issues etc... I am confident that if you lay out your questions, I will do my best to refer you to either a website or something we have used to aid us. I am sorry to hear your frustrations, I can sympathize, and yes certain things will get better and you can affect your health, maybe not to the degree you desire but certainly there are things you should know., You can also set off a chain reaction by eating wrong, try vegan and think outside of the box; ie., no fish, or fish products, stay away from eggs that aren’t vegan fed they give them oyster shells to strengthen the shells. Commercially fed Chicken, Pork & Beef contain fish proteins in their feed, it doesn’t take much. So, how can I help? Because it is such a problem down there, the best information (if you don't mind technical language) is at the University of Brisbane, or use google.au.comMost of all have hope,Regards , Tracy
    Trindone 18 Replies
    • February 13, 2009
    • 11:26 PM
    • 0
    Flag this Response
  • Ty, Stay away from the fish oil, that will make you very ill. And I suggest going to a Nuero Psych for evaluation. My Son and I have had Cigua Toxin poisoning for the last 2 years. I have researched "cures" and learned about the disease extensively. We both have extreme cases, and please, while you will have good periods, it is imperative to learn what sets off the recurrence and how to limit them. While you can limit some of the reactions, you can not keep them all away. I suggest first you learn; where did the fish buyer purchase their fish that you ate. You should have a friend help you on this one and look into the sellers records, they probably will have records. This will likely help you in discovering if it is P-tx or Ctx, a big difference to the person ingesting it. P, like it appears, is from the Pacific regions, and C is from the Caribbean. If you have a choice, you would rather have C, after having said this it is what they use in third world countries to make Zombies or people unable to respond verbally & that’s the good kind! In deference to the person that gave you the vitamin B12, well, it might aid in supporting the system but use caution; if you imbalance your vitamins you can get into trouble and all vitamins are not the same. Some are lipid soluable and some are water based, they should not be taken at the same time. As my son and I can attest to, B-12 it did nothing for us after months and comes from a suggestion on a holistic website with little else valuable. We have had better luck with a few other things, but start thinking about nervous system support & enhancing brain function., if you are going to help yourself I suggest you learn what is really going on with your body, unfortunately the medical journals address "supportive" care, no cure and limited information. Your doctor may not have the time or ability to did further. Now with that being said, there is help coming, there have been some exciting recent discoveries with hope. When we returned from vacation in the Cook Islands, my sons eyes would roll back into his head & he was unable speak. As for me, I screamed a lot. Noise set off panic attacks, blurred vision, chronic headaches, myalgia & more. We have come a long way, not well enough to work, lots of memory issues etc... I am confident that if you lay out your questions, I will do my best to refer you to either a website or something we have used to aid us. I am sorry to hear your frustrations, I can sympathize, and yes certain things will get better and you can affect your health, maybe not to the degree you desire but certainly there are things you should know., You can also set off a chain reaction by eating wrong, try vegan and think outside of the box; ie., no fish, or fish products, stay away from eggs that aren’t vegan fed they give them oyster shells to strengthen the shells. Commercially fed Chicken, Pork & Beef contain fish proteins in their feed, it doesn’t take much. So, how can I help? Because it is such a problem down there, the best information (if you don't mind technical language) is at the University of Brisbane, or use google.au.comMost of all have hope,Regards , Tracy Hi Tracy, "As my son and I can attest to, B-12 it did nothing for us" I have taken the liberty of changing the fonts etc on your quote so that the posting is more easily readable. I have no idea of whether most of the things you say are correct or not. I have no idea about b12 working for this except a report of effectiveness of a very specific form of b12. I fortunately have not had this to deal with myself. However I do know that for most uses, not all b12s are created equal. In Australia for example the odds of finding an effective b12 for people is about 100,000 to 1. Let me explain. Most all supplements sold there are hydroxyb12. For detoxing and repair of neurological damage hydroxyb12 DOES NOT WORK except for cyanide detox and a very limited amount of healing. Next, if by some odd chance you should happen to come across methylb12, most likely it isn't one of the two brands that worked best, by far the best, in comparison tests of 10 brands. One brand was totally ineffective in reversing b12 deficiency symptoms, 7 brands were at best mediocre and only two brands were top notch 5 stars. Further, if not taken in the most effective manner even those likely would not have worked. Chewing or slurping them down reduces absorbtion to 1%, same as oral. Keeping them against the tissues for 45 minutes or longer raises the absorbtion to 15% or more, under the tongue or upper lip. For something like this, in order to penetrate the brain and spinal cord I would suggest at least 50mg, 10x5mg Jarrow, saturating the oral cavity with two or three under the upper lip, under the tongue, adding another 2 or 3 each 20-30 minutes etc for 90-120 minutes total or longer twice a day. If fresh injectable methylb12 is obtainable a sc injection of 7.5mg to 10mg twice a day is needed to reach the neural healing threshold as suggested by Japanese research. Five mgs injections did not work. Methylb12 in an aqueous solution for injection is unstable and breaks down to hydroxyb12 upon exposure to light. After that it won't work. Further, taking the methylb12 all by itelf is not effective. Adenosylb12 is another essential for many folks. Country Life dibencozide brand 3mg has been tested as 5 stars. A simultaneous dose of 36mg of this taken the same way with the 50mg of methylb12 will assure penetration of CSF. Many people have to take these with methylfolate (folic acid won't work adequately for this purpose for at least half the people) to have it promote neurological healing. Further, there are a number of other items that are essential for it's continued effectiveness; b-complex, zinc, NAC+Glutamine (precursor for glutathione), SAM-e, TMG (TriMethylGlycine) and a few other things. Omega3 oils are very helpful, plant sources are fine. Additionally vitamins A, D, E, C and magnesium, calcium and trace minerals. The vitamins and minerals taken with food divided however it works best for the person. L-carnitine (fumarate or acetyl, by individual test) is taken without food with the TMG, NAC & Glutamine and SAM-e. If you didn't take those specific brands of those specific forms of b12 in that specific way, then it is entirely predictable that it wouldn't work. I fully agree it can't be taken alone but overlapping with the needed cofactors. Since the b12s are sublingual they can be taken before or after or between meals. The specified supplements that are taken without food should be at least 30 minutes before or at least 2 hours after a meal. The other vitamins and minerals taken with the meal in the customary fashion. I can't tell you why only a couple of brands of methylb12 are far more effective than the others because I can only speculate. I don't know. These are the pragmatic results of a series of tests with 5 people hypersensitive to methylb12 and with responsive deficiencies. Many folks following these specifications have continued to affirm those brands effectiveness and others ineffectiveness. The total set of information comes from my own experiences over a nearly 6 year period determined to heal from decades of damage of deficiencies and those of many other people. We have found and eliminated most of the reasons b12 doesn't work reliably. Good health to you and your son.
    Freddd 3,576 Replies
    • February 14, 2009
    • 01:11 AM
    • 0
    Flag this Response
  • Thank you Tracy, I have many issues. I have learned a lot about this ciguatoxin. Also that C is better to have then P if you where to have to have one. I will have to do further investigations on where the fish came from. I had someone that was supposed to be doing all of this but.. as far as I am aware.. nothing has been found out. I have had more blood work done and I have a faint banding in my sed. I am high in my beta globulin. This could mean a couple of things I guess. I looked that up also. I am awaiting results from further test as requested from the Lab. I have found that one women had come down with Guilliam-Barre Syndrome while suffering from ciguatera. This particular blood work can show if I have that or not. I hope not.. and I hope it's not cancer. But it seems that the ciguatoxin attacks areas of weakness.. My sugar is unstable. High and low. My thyroid is up and down. The kidney pain doesn't stop. I stay away from fish. As much as I love fish. I don't know about vegan.. I'm carnivorous. lol.. sorry, my way of adding humor to a horrible thing. I am doing what I can to feel better. Freddd, I asked my neurologist about the other B-12 and he wasn't helpful at all. I keep hitting brick walls with all of this. My B-12 levels where good from the sed rate. But again.. doctors won't listen or help.I have some of the top doctors around me down here in South Florida. They have done multitudes of research on ciguatera. Yet, they like to say... " there is no proof that it is ciguatera as there was no fish sample to test " I have all of the symptoms plus some of the extra ones.. sleep paralysis and nightmares. Tracy, I thank you for your help and sharing with me the fact that I'm not crazy. :( How do I know if I am buying meat from animals fed oyster shells?
    Fanfayr 9 Replies
    • February 14, 2009
    • 01:46 AM
    • 0
    Flag this Response
  • Thank you Tracy, I have many issues. I have learned a lot about this ciguatoxin. Also that C is better to have then P if you where to have to have one. I will have to do further investigations on where the fish came from. I had someone that was supposed to be doing all of this but.. as far as I am aware.. nothing has been found out. I have had more blood work done and I have a faint banding in my sed. I am high in my beta globulin. This could mean a couple of things I guess. I looked that up also. I am awaiting results from further test as requested from the Lab. I have found that one women had come down with Guilliam-Barre Syndrome while suffering from ciguatera. This particular blood work can show if I have that or not. I hope not.. and I hope it's not cancer. But it seems that the ciguatoxin attacks areas of weakness.. My sugar is unstable. High and low. My thyroid is up and down. The kidney pain doesn't stop. I stay away from fish. As much as I love fish. I don't know about vegan.. I'm carnivorous. lol.. sorry, my way of adding humor to a horrible thing. I am doing what I can to feel better. Freddd, I asked my neurologist about the other B-12 and he wasn't helpful at all. I keep hitting brick walls with all of this. My B-12 levels where good from the sed rate. But again.. doctors won't listen or help.I have some of the top doctors around me down here in South Florida. They have done multitudes of research on ciguatera. Yet, they like to say... " there is no proof that it is ciguatera as there was no fish sample to test " I have all of the symptoms plus some of the extra ones.. sleep paralysis and nightmares. Tracy, I thank you for your help and sharing with me the fact that I'm not crazy. :( How do I know if I am buying meat from animals fed oyster shells? Hi Fanfayr, Sleep paralysis, and sleep disorders in general, is also a b12 deficiency symptom. You can safely take the natural b12s no matter what your neurologist knows about them or not. They are completely non toxic. B12 levels are completely nonpredictive of who will respond to active b12s. There is no test of any kind that will predict whether or not your symptoms will be responsive. You have nothing to loose by testing this hypothesis. As far as the toxin goes, "Ciguatera is a foodborne illness poisoning in humans caused by eating marine species whose flesh is contaminated with a toxin known as ciguatoxin, which is present in many microorganisms (particularly the micro-alga Gambierdiscus toxicus) living in tropical waters" http://en.wikipedia.org/wiki/Ciguatera There is no reason at all not to eat meat that I can see. I don't see that eating vegan has anything at all to do with anything here. Most seafood is not contaminated with this and especially not cold water fish or fresh water fish etc. It does accumulate in top of the food chain predators. As almost all your symptoms could be b12 related, and as food poisoning of any variety as well as infectious diseases and physical trauma can trigger a b12 deficiency if a person is on the edge, I would be inclined to try this b12 protocol. You have nothing to loose except your symptoms. Also, methylb12 has the ability to heal damage done by toxins and physical trauma as demonstrated in rats by intentional damage to them. It doesn't even have to be casued by defdiciency. Come on over and talk to folks at the b12 forum, check out the list of symptoms and maybe give it a whirl. Read from the end backwards as that will give yuou the most up to date information.
    Freddd 3,576 Replies
    • February 14, 2009
    • 02:34 AM
    • 0
    Flag this Response
  • Hi Freddd - Actually.. when poisoned via ciguatera. It is best to stay away from any and all fish. Even the smallest amount of ciguatoxin can trigger a flare up. With possibly worsening effects. This is something you don't want to happen. Some even say that nuts, chocolate,caffeine and alcohol can trigger a reaction to it. I have had nuts, chocolate and my morning ritual of my coffee with caffeine and have not had a flare up. I did wait six months however before having the nuts. I am going to attempt some red wine this weekend. I am hoping not to have a flare up with this. As I had mentioned my b-12 levels are within normal limits as per my blood work which is great and I had been getting weekly shots of cyn-b-12 Once a month with c-complex and cyn-b-12. However I would like to know who I would have to contact to try this other b-12 as I know also I haven't had any noticable response from these shots. Also, if poisoned with Ciguatera fish oil is out of the question also. These things are a must to stay away from. I guess it's best to say it is like being allergic to anything fish. Thus the reason for staying away from products that utilize fish or by products to maintain their heard of cows, or their chickens etc. I am very worried about my kidney and no one listens to me about this pain. I have cyst and no stones.. these test is all I have had. But, it didn't explain the pain.. the hot flush feeling I get in that area along with a cold wet feeling I also get. Now, I have a rash over that area. That is a first. I have had rashes from this before and they come and go. Just as the symptoms do. So, Tracy, I totally understand what your saying.. and don't you love it when the doctors say.. you should be over this already. It must be something else. Maybe since your son is also effected they don't give you as hard of a time. My friend also got sick within 24 hours later. His symptoms came on more like a flu however he had the tingling, numbness, blurred vision and a headache that wouldn't go away. With other issues like ours. His cleared up in about 2 months. Freddd I know you have invited me to your list. I appreciate this. I understand where you are coming from with what you are saying and I would like to give it a try it. But, again. I need to know who it would be I would have to go see to be able to get this therapy.Debbie
    Fanfayr 9 Replies
    • February 14, 2009
    • 03:31 AM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2565126If you would like to see the face of ciguatera, go to fig.1, this reflects the stimulation created by cigua toxin. This is collaberated by the researchers at the University in Virginia. As to diet, keeping an eye on what you eat that makes you feel bad. It's believed food causes the Dinoflagelettes to create their cycle and release toxins, which store in fat and release into the sodium channels. Barometric pressure changes, low pressure can be especially wicked. In Florida you might not have what we get in Seattle, the other thing is Electro magnetic fields, changes cause changes in the cells. Think of these cells holding onto a toxin within it floating like a jelly fish or a coffee filter floating in water, so how do you get the toxin to move? a diruetic can help, but because the sodium channels are stuck open (creating nerve pain) the sodium would be the negative charge & potassium is the positive. Ciguatera creates the body to become more negative and so do diruretics so be sure mega doses of potassium are taken with this approach.Food; I raise my own beef, I have my neighbors raise the pork and lamb. I get eggs from neighbors and the store; vegan fed works best. Look for organic fed vegan fed animals, this is getting easier. Worstcheser (?) Sause has anchovies as does cesear salads. Pork is difficult, they feed it anything. So if you are at a restaurant your safest bet is a salad & soup, unless its high end where it comes announced Organic, usually organic farmers use high quality product. Also, I buy cheese and dairy goods from Ireland, they don't use fish products in their feed they have enough protien in their grass. I spend a month a year in Argentina and one in New Zealand and find I have little food issues there also. I;m sure there are things I have left out, so please let me know what else I can address. For my suggestion to you, if you have health insurance get your doctor to refer you to a Neuro Psychologist. There is nothing a neurologist can do for us. A clinical occupational neurologist can analyze results from neuro psych testing and tell what deficits you have, that is very important to work on the cognitive retraining of your brain. I lost math skills, I have made my living from these very skills. I am off on disability to develop a plan to get these skills back. I can tell you that the symptoms will wear off & you might acquire others, but stay focused, retraining is the key to get lost skills back (your mind is a wonderful thing) Get a good support group going to check in on you and be willing to accept your new normal, then as you acquire skills back it's a bonus. Watch the depression, its a hallmark of organic brain toxin. My son is 26, and has similar symptoms, but its the depression and his difficulty trying to workout. He is a grad student, and really lucky, he says it's remedial grad school. Good Luck, Tracy
    Trindone 18 Replies
    • February 14, 2009
    • 04:38 AM
    • 0
    Flag this Response
  • Debbie, I don't see the advantage of vitamin B12 as anything other than supportive, there are so many other things that work. Getting to a Neuro Psychologist to find out what damage has been done so you can develop a plan to get it back would be first on my list. I suggest you review the Ciguatera information at the Brain Institute at the University of Queensland. This will explain a lot of the challenges. CIguatera gives permanent nerve damage. Vistamin B12 can't fix this, allowing new nerves to generate and new neurons through the brains plasticity. I have gone to Brisbane to find a cure, been to the #1 researcher in the US, but really its time, and during that time supporting your nervous sytem the best you can. My son and I have tried hundreds of things in the last 2 years, but for us what I wrote works, that and a lot of laughter. There is no one single fisx but a lot of little ones. Good luck
    Trindone 18 Replies
    • February 14, 2009
    • 04:57 AM
    • 0
    Flag this Response
  • Hi Freddd - Actually.. when poisoned via ciguatera. It is best to stay away from any and all fish. Even the smallest amount of ciguatoxin can trigger a flare up. With possibly worsening effects. This is something you don't want to happen. Some even say that nuts, chocolate,caffeine and alcohol can trigger a reaction to it. I have had nuts, chocolate and my morning ritual of my coffee with caffeine and have not had a flare up. I did wait six months however before having the nuts. I am going to attempt some red wine this weekend. I am hoping not to have a flare up with this. As I had mentioned my b-12 levels are within normal limits as per my blood work which is great and I had been getting weekly shots of cyn-b-12 Once a month with c-complex and cyn-b-12. However I would like to know who I would have to contact to try this other b-12 as I know also I haven't had any noticable response from these shots. Also, if poisoned with Ciguatera fish oil is out of the question also. These things are a must to stay away from. I guess it's best to say it is like being allergic to anything fish. Thus the reason for staying away from products that utilize fish or by products to maintain their heard of cows, or their chickens etc. I am very worried about my kidney and no one listens to me about this pain. I have cyst and no stones.. these test is all I have had. But, it didn't explain the pain.. the hot flush feeling I get in that area along with a cold wet feeling I also get. Now, I have a rash over that area. That is a first. I have had rashes from this before and they come and go. Just as the symptoms do. So, Tracy, I totally understand what your saying.. and don't you love it when the doctors say.. you should be over this already. It must be something else. Maybe since your son is also effected they don't give you as hard of a time. My friend also got sick within 24 hours later. His symptoms came on more like a flu however he had the tingling, numbness, blurred vision and a headache that wouldn't go away. With other issues like ours. His cleared up in about 2 months. Freddd I know you have invited me to your list. I appreciate this. I understand where you are coming from with what you are saying and I would like to give it a try it. But, again. I need to know who it would be I would have to go see to be able to get this therapy.Debbie Hi Debbie, Cyanob12 does almost nothing compared to methylb12 and adenosylb12. They are approximately 100 to 10,000 times more active thanj cyanob12, which releases a cyanide molecule for each cobalamin molecule that is converted to one of the active forms. It usually isn't dangerous because only about 10 micrograms gets converted. A single Jarrow methylb12 5000mcg allows about 750mcg of active methylb12 to be absorbed over a 45 minute period assumming you allow it to linger that long or longer. The first 1000mcg Enzymatic Therapy methyb12 floored me for an hour. In fifteen minutes the "lights came on" for one of the only times in my life; lifelong depression lifted which had only lifted for the few months that the lights were on before and all my neurologicaL damage started healing. The terrible burning neurological pain across my back and shoulders caused by nerve damage in a car wreck when I was 22 was gone in 9 months. In research done in Japan, methylb12 healed damage caused by a variety of toxins (to rats) and crushed sciatic nerves (rats again). Research on methylb12 over and over again states that it has healing characteristics not shared by cyanob12 or hydroxyb12. If my methylb12 injection supply is deteriorated (to hydroxyb12) it looses it's effectiveness and I can tell within hours. Many long term neurological problems such as are started by trauma, illness, food poisoning etc are b12 deficiencies in a person who was on the borderline and the stress of the illness or injury pushed them over. You don't need to see anyone to start the natural b12s and cofactors, you don't need anybody's permission and you don't have to pay anybody to give it to you. All you need to do is order them from a company selling vitamins. 30 years of cyanob12 almost killed me. The beneficial effects of methylb12 started 5 miuntes after it went under my tongue. It is the real b12 but it was changed to cyanob12 in a laboratory mistake in 1948 and so misidentified for a decade until the two real b12s were identified. For the two natural b12s to be most effective they need to be taken with various cofactors, like b-complex and methylfolate and some other things. The thing about this methylb12 hypothesis is that it is easy and relatively inexpensive to test. A trial period, with all the most likely cofactors needed might cost up to $100/month or so for several months. If it is going to help, it will do it quickly and obviously though complete healing may take years. I was told that all the damage I had more than a few months old was "permanent", and it was with cyanob12 which didn't stop it from happening in the first place. I'd be dead now if I hadn't switched. 90% of the "permanent" damage has healed now and I'm working on the last 10%. Nine months ago I couldn't feel my toes and had footdrop. Footdrop is gone, I can feel and control each and all of my toes and formerly numb areas in my feet have feeling again. Only about 5% of the numbness remains. I have reflexes back. I can sense where my feet and lower legs are again. I have gotten my balance back on one foot in the dark which I haven't had since 1993. You will know without a doubt within 3 months, possibly within one day, if it is going to help. There is a group of about 7 "showstopper" critical cofactors that may need to be taken to achieve substantial effects with it. Not everything should be started at once because it can be too overwhelming. Instead one starts the basics and the minimum required for possible healing and builds from there depending upon how the reactions to it are. My blurred vision is no longer blurred. I had overwhelming crippling fatigue and a fifteen headache. The fatigue started disappearing the first hour. It took several more of the critical cofactors before it was gone completely. Omega3 oils are essential and from what you say you should use plant source oils. We have vegetarians on the b12 board who can coach you about that. I used to be a vegetarian until it aided in almost killing me and decided it wasn't worth it. Come talk to folks and read the posts and decide for yourself. However, until you have tried the real b12s in the effective brands and technique you have not tried b12. Australia uses hydroxyb12, also an inactive b12 that needs to be converted to the active forms in the body. At best that doesn't happen well and at worst not at all. If you want pure meats see if there is a store in your area selling Amish meats. Kosher meats might also be a good choice as there are very strict rules concerning the production of these meats and compliance with dietary laws. There is no other hypothesis about helping these neuropathic effects that can be tested as quickly, decisively or inexpensively. I can't guarantee these things will help. In your position knowing what I do I would without fail try them. At worst they won't do any better than the cyanob12. At best they will be something else entirely and a means to heal. I have nothing to gain or loose by this. I just hate to see somebody suffer needlessly for years as I did. If you come over the the b12 forum we can discuss what you might want to include and were to get them at a good price and fast delivery. Good luck.
    Freddd 3,576 Replies
    • February 14, 2009
    • 06:31 AM
    • 0
    Flag this Response
  • Tracy, I would like to know more about these neuro phycologist. I have only seen a neurologist. I have had a nerve conduction test which show nothing.. no problems.. however my hands and feet are numb... My right hand is half way disabled from what I had 10 1/2 months ago. Yes, I had carpel tunnel sx twice on that hand but it wasn't acting up or problematic.. until the day after I got sick.. So, 99% of my problems started after I got sick. I am up for anything that will improve my health. Be it the right type of B-12 to bring up my energy levels and heal what it can to seeing a neuro-phycologist to do what ever they can.. but I have never heard of this type of doctor. I live in South Florida. Does anyone in your neck of the woods know any one in here in Broward County Florida that knows about this? If so, could they let me know. Oh.. and what are you guys doing that has helped you improve your conditions. Are you now totally Vegan? You know that there are a lot of farmers who utilize fish remains as fertilizer.. I know they use to. I remember living out in the country and I could smell the fish after plowing their lands and fertilizing.. nasty.. anyway.. if you could let me know.. I am and Open door for suggestions.
    Fanfayr 9 Replies
    • February 14, 2009
    • 05:09 PM
    • 0
    Flag this Response
  • Debbie, I am sorry to hear what you have gone through, first hand I have knowledge of the nightmare. I refer to it as suddenly waking up autistic, a migraine & a bad flu & through in a little dyslexia for measure. So, what are your worse symptoms? 1) Migraine, you can get relief from the following and each is individual;2) Vicodin (easy first step), dietary cautions (reexposure) 3) MAOI inhibitors to remove the extra catecholemine, Do not take L-Tyrosine, this increases these levels and makes it worse. If you take MAOI inhibitors, please know that the statistics are really only about 30% success, the US publishes higher 80% numbers of success, most people stoptaking and dont go back because if it doesn't work it is like walking into a short lived nightmare, but it wears off quickly. One MAOI gave me such pain all I could do is cry, the other made me scream all the time, but give them all a chance. 4) and probably the most difficult to bring yourself to do, but also the safest, get a ocipital nerve block. We get them from our family practitioner but normally you would get it at a neurologist. It is really safe way to coat the some of the 12 nerves going to your brain stem. No irritation, no headaches, or they aren't as bad. The last about three months and it is about 15 monutes of injections just below the surface. I do recommend this. As for overall pain, flushing I use ice packs, the blue kind, I carry them with me. I use them where the blood flow is greater. Front of my neck, if I am sitting down my groin or feet my wrists really work for me too. Research sinuses and you find that there are sinuses in your body and brain for different reasons not just the ones we are familiar with. If your gland system isnt working to cool you down you need to do it yourself, the consequence is it can weaken the next ones response and create a situation where your sympathetic nervous system takes over and then you get panic attacks. I also have an em-wave. Its' a machine that teaches you to slow down your heart rate. I thought this was really goofy until I used it and now I can stop the anxiety rather than having it go on for days. You can try nuerontin, this might also hel for pain, but be warned, it is known to cause pancreatic cancer in males, so we have shied away from it. When things are bad I have a diet I use that has always been of help, I do this for my son and it works for him so I think there is something to it. After reading and concocting it I found a similar recipe in Dr Amens book, so I think it's doable. I will post this later. As for weakness in areas already weakened, yes I agree that it will happen in all areas. But the good news is, it will improve just so slowly it will keep you on your toes. I work hard at Brain plasticity, ie., getting my left brain and right brain to work together. I play golf, I was good, now some days I am good, somedays I look like a beginnerbut I keep trying. I have lost vision in my left eye & depth perception is horrible, just as I adjusted it came back and I lost it again. I guess what I would want a person with Ciguatera to know is that; yes you will have a set of symptoms & some will stay but most are not lost forever. I have had the hand issue, they tested for MS etc.,it comes and goes, and I learned its worse in the morning so I don't lift things then. Do your best to figure where your functions are, and then accept that as the norm, stop worrying, I will help you keep this going forward and as long as you progress you are fine. It does wear off, but you HAVE to pick up and work on the damage left because you can get the function back. My son, the one with depression, severe migraines and a host of other things, took a leave from college, he had one quarter left. He went back and finished a year later and decided to enroll in the graduate program. His instructios are aware of his issues and he is slowly working through it. They are making special provisions for him and as long as he is progressing we are supporting him. So, other than the diet, what else can I tell you?
    Trindone 18 Replies
    • February 14, 2009
    • 06:10 PM
    • 0
    Flag this Response
  • Tracy, I would like to know more about these neuro phycologist. I have only seen a neurologist. I have had a nerve conduction test which show nothing.. no problems.. however my hands and feet are numb... My right hand is half way disabled from what I had 10 1/2 months ago. Yes, I had carpel tunnel sx twice on that hand but it wasn't acting up or problematic.. until the day after I got sick.. So, 99% of my problems started after I got sick. I am up for anything that will improve my health. Be it the right type of B-12 to bring up my energy levels and heal what it can to seeing a neuro-phycologist to do what ever they can.. but I have never heard of this type of doctor. I live in South Florida. Does anyone in your neck of the woods know any one in here in Broward County Florida that knows about this? If so, could they let me know. Oh.. and what are you guys doing that has helped you improve your conditions. Are you now totally Vegan? You know that there are a lot of farmers who utilize fish remains as fertilizer.. I know they use to. I remember living out in the country and I could smell the fish after plowing their lands and fertilizing.. nasty.. anyway.. if you could let me know.. I am and Open door for suggestions. Hi Debbie, A neuropsychiatric exam looks for specific types of deficits caused by inferred damage to certain areas in the brain. Behaviors are very much influenced by minor damage to very specific areas of the brain. Incidently b12 deficiency causes many neuropsyc symptoms. fMRI is beginning to look for much the same things in a different way. In the USA the problem is to get referred for such an exam as "medically necessary" so that the insurance will pay. In car wrecks for instance it is often used to assess damage in cases of closed head brain injury. Finding a neuropsyc in the US that will recognize the specific problem caused by the toxin involved would probably be easiest in Florida becasue of nearness to tropical waters. Good luck.
    Freddd 3,576 Replies
    • February 14, 2009
    • 06:35 PM
    • 0
    Flag this Response
  • I wish I would had been sent to one after I went half way threw a windshield of a car when I was 17. I definately received permanent damage from that accident. My memory was damaged and my personality changed. So I was told.. I didn't notice the personality thing. But sure had issues with my memory.. and now with this ciguatera.. my cognative thinking is somewhat better now.. My short term memory still has issues. I am curious of what a doctor like that would had found then. Just as I am curious now. I have had an MRI to rule out aneurysm and it also didn't show any demylination. Which was good becasue the symptoms of ciguatera are similar to MS.I will research a neuro pshycologist around here. Thank you everyone for all your suggestions. Please keep them coming. It give me hope.
    Fanfayr 9 Replies
    • February 14, 2009
    • 07:39 PM
    • 0
    Flag this Response
  • I wish I would had been sent to one after I went half way threw a windshield of a car when I was 17. I definately received permanent damage from that accident. My memory was damaged and my personality changed. So I was told.. I didn't notice the personality thing. But sure had issues with my memory.. and now with this ciguatera.. my cognative thinking is somewhat better now.. My short term memory still has issues. I am curious of what a doctor like that would had found then. Just as I am curious now. I have had an MRI to rule out aneurysm and it also didn't show any demylination. Which was good becasue the symptoms of ciguatera are similar to MS.I will research a neuro pshycologist around here. Thank you everyone for all your suggestions. Please keep them coming. It give me hope. It would be a neuropsychiatrist you would be looking for I believe.
    Freddd 3,576 Replies
    • February 14, 2009
    • 07:54 PM
    • 0
    Flag this Response
  • Ah, actually I did see one of these type of doctors back 35 years ago. After finding out what the difference is. It was good that i checked out okay then. But he did some strange test.
    Fanfayr 9 Replies
    • February 15, 2009
    • 02:22 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.
Advertisement

8 Health Dangers of Depression

Unmanaged depression can take a toll on your physical health.

Best Cough & Cold Meds for Kids

Help your child feel better, faster.

What HIV Positive Women Should Know About Sex

You can have sex after an HIV diagnosis.

Food Choices for Diabetes

What, when and how much you eat affects your blood sugar.

6 Exercises for Multiple Sclerosis

Ease your way into these stretching and strengthening moves,

Advertisement