AMA

I’m pretty new to this illness, but I’ve got an idea. Does anybody want to go over to Reddit and do an AMA about this? We could all go as a group, whoever wanted to. This problem needs some attention and I would love to get it in front of a couple million people.

” Tiny Amounts of Toxin”

One reason doctors aren’t concerned about botox injections is because the amounts used are “tiny.” But if they are so tiny, when they go systemic why have they made me so sick for so long? I understand the ideas that botulinum is the most toxic substance known to man and that it is potentially a chemical weapon. However *people with botulism* are said to make a full recovery sometimes within several weeks.

What I’m beginning to believe is that since Botox is a “polished medical product” and botulism is a naturally occurring bacterium, that we actually are getting a WHOLE LOT MORE BOTULISM THAN PEOPLE THINK. In the lab, someone can say, well we gave mice this much polished medical product and it took this much to kill them — but in life, when a person gets botulism and they eat a bacterium, you have no idea how much neurotoxin it is releasing. Maybe not so much, maybe not a lot at all. You could have more botulism in you than anyone who goes to the hospital sick from eating home canned pickles.

it’s been five months and I have not made anything close to a full recovery, in fact overall I think I’m a little bit worse. Some overt symptoms are gone but now I’m just sick, fatigued, dizzy, shaking, a little stupefied — every single day. Still haven’t regained full use of anything on the left side of my body, rashy face and swelling. My stomach is still wrecked, bladder isn’t really working right either.

According to the literature, the recovery you make at one full year is the best you will probably ever do. But that’s for botulism. It might work the same way, and it might not.

interesting movie on youtube ‘plastic surgery gone wrong’

https:// www.youtube.com/watch?v=yimrr9yS00E

(i just edited this to disable that link from showing a huge (disturbing) preview picture. thats why i put spaces in the link)

hey i just watched an interesting (if a little gross for surgery scenes) movie.. if anyone wants to waste an hour its kind of interesting. its not about botox its about other forms of plastic surgery but it talks a bit about the advertising and how it can give a misleading sense of safety… social pressure to have these kind of procedures.. and more interestingly it talks about several examples of people who had this kind of experience and then later went on to actually change laws to make practices safer. it kind of made me wonder if we were going to change any laws, what would they be?

it was interesting.

out of curiosity i went back to that website the “coalition for injectables safety” of which my dr (past president of ASAPS) is now a member… when you click the link for information on dysport, it takes you right to the ‘safety information’ at the dysport site.. (rather than, as you would expect, a commercial about how great dysport is) this is the link it takes you to: http://www.dysportusa.com/

very interestingly, it starts right out saying it can cause botulism.

it actually uses that word, and says it straight out.

i find that pretty interesting.. i wonder if this is some kind of new development or what. it definitely wasnt as easy to access that kind of information a couple of years ago.

i mean theres so still no result if you actually -do- any of the stuff is tells you to do, like tell your dr if you have any of those symptoms.. but, at least it starts right out, saying dysport can cause symptoms of botulism. i dont know maybe things -are- changing but they still seem to be changing pretty slow…

this is the first paragraph under “the most important thing you should know about dysport”:

“Spread of Toxin Effects: In some cases, the effects of Dysport and all botulinum toxin products may affect areas of the body away from the injection site. These effects can cause symptoms of a serious condition called botulism. Symptoms of botulism can happen within hours, or days to weeks after injection and may include swallowing and breathing problems, loss of strength and muscle weakness all over the body, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice, trouble saying words clearly, or loss of bladder control. Swallowing and breathing problems can be life threatening and there have been reports of death.

The toxic effects have been reported at doses similar to those used to treat muscle spasms in the neck. Lower doses, in both approved and unapproved uses, have also caused toxic effects.”

i dont really remember them beign quite so clear about this previously. do you guys think anythign is changing here? also i was wondering.. if there is anyone in the ‘public eye’ that we coudl put pressure on to improve these kinds of practices, i was wondering if it could be this group, the coalition for injectables safety.

im not saying i think they would actually listen to us.. but i wonder if there would be any value in trying to put pressure on them or communicate with that group in some way.

edit #2: in contrast to dysport, the botox safety information, (here – http://www.botoxcosmetic.com/ ) does -not- use the word botulism… and they still claim there has not be ‘any confirmed case’ of spread of toxin. (double speak for, noone will confirm all these cases) interesting.

Botox Poisoning And Parotitis (Mumps)

I want to just put this up here because it was one of my symptoms. *Never* in my life have I had the mumps, I was vaccinated and as far as I know I was not exposed by a family member. I did not meet anybody who had or told me they had had the mumps. However somewhere deep in the literature there is a case report that links botulism to parotitis. I saw someone else who mentioned it here.

I somehow though *had* the mumps ( for 24 hours) six weeks after my injection. That was when my real symptoms started.

Just want to put it out there. I’m wondering if Moderator can add a tag just in case someone else runs across this site in the future with the same experience.

Anticholinergic Drugs

I am testing a new theory starting today.

I started a course of doxycycline a couple days ago and had a terrible reaction to it; I nearly didn’t even know I was having a reaction because I was so spaced out and depressed. One of the main symptoms was *shaking* and fasciculations which were scaring me terribly.

So I started poking around the internet and ended up realizing the the symptoms of botox poisoning are probably in theory a lot like the autoimmune disorder myasthenia gravis. Myasthenia Gravis is a condition where the body does not have enough acetylcholine receptors because they are being attacked by the immune system. Too much botox systemically causes a blockade of acetylcholine at the neuromuscular junction.

One of the things they say about botox is that it can unmask a subclinical case of myasthenia gravis. It could be that some people who breeze by here are experiencing exactly that — not all, but you never know. It’s said that if your acetylcholine receptors are 30 percent below normal ( baseline 66 percent of acetylcholine receptors active) you will have symptoms; you will be exhibiting the condition of myasthenia gravis. But even if not, let’s say you’re at 90 percent — it could be pretty uncomfortable.

Doxycycline is one of the antibiotics that people with myasthenia gravis can’t take. I stopped the doxycycline, felt a little better and by the end of the day the shaking was mostly gone. I had other symptoms, but not that, which is good because fasciculations are *upsetting*.

The issue with patients who have myasthenia gravis, and certain drugs, is that the drugs are ANTICHOLINERGIC; meaning they block acetylcholine, which makes these people get worse. Since we ourselves now do not have as much active acetylcholine, it might be that being a botox poisoning victim and having myasthenia gravis might result in the same intolerances.

Some bad ones – *antihistamines* — most of them, the worst one being Benedryl. FLEXERIL, which I was on. H2 blockers like cimetadine and ranitadine, are anticholinergic. Actually there are a ton of things MG people can’t take because it will bring about a MYASTHENIC CRISIS which usually involves a ventilator.

So what I’m going to try for the next little while is to STOP ALL ANTICHOLINERGICS. It’s actually kind of hard to figure out which ones these are because you have to read the really really fine print to figure it out. Good thing there are lots of handy lists online about this:

http://dig.pharm.uic.edu/faq/myasthenia.aspx

http://www.myasthenia.org/LinkClick.aspx?fileticket=JuFvZPPq2vg%3D

Looking at this list I have had a fair number of these things since this all started. Some made me immensely sick — immediate allergic reaction, stomach problems, eye stuff. And the shaking, which drives me crazy.

One thing that makes me think this might be a good theory is that I generally have a lot of the symptoms of anticholinergic poisoning — red face, shaking, fasciculations, reactivity in general. So I’m just going to avoid all anticholinergics to the best of my ability and see how it goes.

Food for thought :).

Red Face

Does anybody else here wake up with a red face? I haven’t had a problem with flushing in probably 20 years, but now I’m always red. I wake up with this way, and if I don’t have it in the morning it comes on as a bright hot streak down my cheeks sometime during the day. I’m wondering if this is related to the hair dye but also maybe botox.

I know I asked this once before sort of but it is SO noticeable.

Did Botox/ Dysport leave a physical mark on your skin?

Does anyone have a mark on the body that looks like a snake bite scar. I had this strange marking that appeared in the early stages of the sickness.  The mark was located on the upper left side of  the torso. It  started to fade after 18 months. It never started out as a sore or a hive. It didn’t itch or cause discomfort. It was a strange, very evident mark. My husband called it my Botox bite (even though I got Dysport :). My doctor was quite perplexed by it. The reason I ask is that my friend (an African refugee who endured so much trauma in her life) had a stroke and was subsequently given Botox in her arm a few days later to help relax the arm. She described feeling sick in the days after with flu like symptoms that didn’t dissipate. She suspected it was the Botox and blames it for impeding her recovery. I was stunned to find on her arm near her shoulder the exact same distinctive mark. It is identical to the one I had. She said it appeared a few days after the Botox. Side note: My mark and her mark were not at the injection site.

Can anyone report if they have this mark?

Mich

Possible Cure for Botox Side Effects

http://www.ncbi.nlm.nih.gov/pubmed/?term=pyridostigmine+botox

J Voice. 2014 Nov;28(6):830-4. doi: 10.1016/j.jvoice.2014.04.010. Epub 2014 Jul 5.
Pyridostigmine for reversal of severe sequelae from botulinum toxin injection.
Young DL1, Halstead LA2.
Author information
Abstract
OBJECTIVE:

Botulinum toxin is used to treat a wide range of dystonias in the head and neck. Occasionally, patients receiving laryngeal botulinum toxin experience severe dysphagia, dyspnea, or even distant and autonomic symptoms. Rarely, these patients may require hospitalization with possible intubation and placement of nasogastric tubes. Botulinum antitoxin is not readily available and ineffective once symptoms have progressed, so patients must wait until the toxin wears off over weeks to months. Pyridostigmine prevents the breakdown of acetylcholine at the neuromuscular junction, thus making more neurotransmitter available for the muscles.
STUDY DESIGN:

A retrospective case study of patients receiving botulinum toxin for dystonia in the head and neck from 1998 to 2012 who experienced adverse effects that were successfully treated with pyridostigmine.
METHODS:

Twenty cases were selected and reviewed to demonstrate how pyridostigmine was used to modulate severe dysphagia, breathiness, dyspnea, and some distant/autonomic symptoms.
RESULTS:

Pyridostigmine was well tolerated and resulted in significant symptom improvement. Only one significant adverse effect, bradycardia, occurred in a patient with severe cardiac disease.
CONCLUSIONS:

Given the safety and efficacy of this medication, pyridostigmine should be considered to modulate severe sequelae of botulinum toxin in select patients when conservative management is deemed insufficient. Also, physicians should be aware that patient complaints of symptoms at distant sites and temporally delayed from the injection may be a result of the botulinum toxin and relieved with pyridostigmine.

Copyright © 2014 The Voice Foundation. Published by Elsevier Inc. All rights reserved.
KEYWORDS:

Adverse reactions; Botox; Botulinum toxin; Pyrodostigmine; Reversal of botulinum toxin

PMID:
25008379
[PubMed – in process]

LinkOut – more resources

http://www.medicinenet.com/pyridostigmine-oral/article.htm

My Theory: You can’t get the botox out.

What I think after reading…let’s say…obsessively – about all this the conclusion I’ve come to is that there is no way to get the botox out of you once it’s in you and you’ve had a reaction. What’s happened is two-fold in the beginning — okay threefold, no fourfold actually.

1. Exposure to botulinum toxin sets off t-cell and mast cell havoc; there is an “initiating event” for hyper-excitability of the immune system. This sounds manageable but it really isn’t if it’s bad enough. Allergic reactions can be mild, or they can be life-threatening, or anything in between.

2. Continued hypersensitivity to anything you were slightly allergic to before plus anything your immune system now recognizes as a threat.

3. Concomitant stress reaction makes it even worse. Stress can give a person hives and panic attacks and stomach issues and PTSD. This is filed along with the new information in your body about potential toxins.

And 4…physical damage and immune system damage potentially long term. Just because the “toxin is gone” does not mean there is not a lasting change in the way your body functions.

However the actual botox is eventually cleared from the body, and there is no way to get it out faster because it is bound to receptors. It will stay in your body until *new nerves grow.* Once the new nerve endings have taken up the function of the paralyzed muscle, THEN — seeing that there is no use for the botox proteins, the body will take it up and clear it out of you, I’m assuming through the liver.

One point I would really like to make is that the botox toxin can’t really “come back” or “wake up” or move around your body. It is looking for a nerve receptor and it will find those receptors and bind to them — and when they are bound to those receptors that is *irreversible*, so what is cleared from your body is not botox that can get lost in translation somewhere inside you and poison you again; it is a *bound protein* and can’t do any more damage to you.

However. In some cases it doesn’t matter, because the damage has already been done. The initiating event of multiple chemical sensitivity is real and it has made millions of people very sick.

I think what a person can do to “get the botox out” is to limit ALL chemical exposure of every kind, maybe for a couple years. When you are detoxing botox, really what you are probably doing is detoxing something else that is making you sick now that you’ve had your initiating poisoning event. What you are probably reacting to new things your hyperaware immune system *thinks* is botox.

There is more, though. Illness is always somewhat complex, but one thing that seems to be similar in all cases is nitric oxide damage to tissues. Nitric oxide damage is what eventually kills people because it leaves scars and changes in cellular function that are often irreversible, especially in the environment of high nitric oxide. NO is what causes…well, lots of diseases. Most diseases have some component of nitric oxide damage. All of the damage from this initiating event stays with you; it is an injury to your cellular function and to your immune system, just like a poisoning.

Basically, if you are reading this, you have been poisoned, which is an injury unlike most injuries most people are familiar with. There is no way to “get it out”, or “undo it” — the only thing you can do is heal from the damage and limit further exposure to it or anything else that could cause injury.

Welcome to the Land of Post Botox Multiple Chemical Sensitivity. Hope you’re not staying long :)

Sad, afraid, upset, feeling hopeless

I don’t know where to leave my question, and I hope this is the right place. I don’t understand yet how to use this site, really having trouble with knowing where to post something and not sure where to start communicating. As I post this I am not sure where it is posting. I found this site a few months ago. I just realized when I found this site that botox is causing my issues after all these years.  How do i get the botox out of my system? I have been having it for 10 years with all kinds of life altering problems but didn’t know it was from the botox.  I am also sensitive to all herbs and vitamins and about anything other than food. Can anyone tell me a good thing to start with to get it out of my body or to heal the nerve damage? What kind of Dr to go to who would know about botox?  I have a cupboard full of products that I tried over the years but I can’t take but I will keep trying. I have severe insomnia and it gets 20 times worse when I take things. I also have electric shock sensations at night (mostly at my ankles and feet but sometimes all the way up my legs) that keep me up and I assume that is nerve damage. Many other issues. I am just so miserable. I have not had my life for many years. Thank you for any suggestions.

Multiple Chemical Sensitivity Syndrome

I dyed my hair about nine days ago. I also got a new prescription from the neurologist so when I started getting a rash on my chin and my face went bright red and puffed up, I thought it was because of the prescription.

But I noticed that every time I had my hair down, especially at night, I would start getting rashy and my lymph nodes would swell up around the back of my head — terrible pain from the swollen nodes and headache. Also my face was starting to look like it did at the beginning — full of fluid with my nose swollen.

So then somehow, like nine days after this happened, I started reading about PDD ALLERGY, which is a horrible “sensitizing” reaction to this basically poisonous stuff in hair dye. It sounds almost like some things people have said about botox — you can do it multiple times, and the last time — WHAM.

This is more than an “allergic reaction”. It is a poisoning that puts people in the hospital and their stories sound somewhat like ours — went to the doctor, got antibiotics and prednisone, thought it would go away, but ten months later I still have floating rashes, hives, gastro, etc. Multiple system involvement.

When I was reading literature they said that this could touch off a syndrome called “multiple chemical sensitivity” which basically makes you “allergic to life.” The initiating event is often an ORGANOPHOSPHATE POISONING, which works on acetylcholine receptors. After it’s initiated, it makes the person catastrophically allergic to chemicals and combinations of chemicals of all types.

People who get this after an initiating event describe this in this mystified way — “I thought I was better but then…my stomach acted up. Then I got an itchy rash. Then I started shaking….had headaches, red eyes, felt dizzy, had to go to bed…etc. It seems to travel around my body…”

There were a lot of things I was reading that sounded like what people here are saying. I saw somewhere somebody saying that they needed to detox their lymph nodes — one way to do that is with aerobic exercise, which seems to help most of us quite a bit.

Here’s an article about it MCS:

http://discovermagazine.com/2013/nov/13-allergic-life

Here is a girl who dyed her hair and got very sick, with pictures:

http://www.reddit.com/r/WTF/comments/1h7tju/so_i_had_an_allergic_reaction_to_ppd_story_in/

Here’s an article by a woman who this happened to:

http://www.theguardian.com/lifeandstyle/2011/nov/28/could-hair-dye-kill-you

Youtube Movie, if you have time:

Health Board Discussion:

http://www.mysensitiveskincare.com/how-long-do-hair-dye-allergies-last.html#axzz3SMdfuLCf

How could I have missed this??

Hi everyone,
I hope you will allow me to share my story because I just need someone to listen. I will try to condense this as much as possible but it’s a long story with nothing good about it.
I have ALWAYS been energetic, work full time, and very fit…I taught fitness classes on the side. I have seasonal allergies as well as some food and animal allergies. I was 45 at the time and never had been in the hospital except to have my kids.

In May 2013 I had my first Botox injection–crows feet and then between the eye brows. In Sep/Oct I started having some heart palpitations and severe indigestion/heartburn. Went to the ER and they admitted me based on what was a tad abnormal EKG. Had a subsequent stress test and all was fine with the heart. They put me on a PPI and sent me on my way.

In Dec. 2013 I had my second Botox injection–same locations.

I started having severe gallbladder pain and after lots of testing, they determined that it was only functioning at an 8% and needed to be removed. I had it removed in Feb. 2014. (I also had an upper endoscopy in which I was diagnosed with mild GERD).

The fun was just beginning — which I attributed to no gallbladder. I felt horrible. My heart would race, I would constantly belch (uncontrolled, almost spasm type belches), chest pressure and terrible heart burn. I went Gluten Free, grain free, elevated my head at night, natural remedies, etc…I tried it all. Nothing was working. Anxiety started (and keep in mind I have NEVER been anxious–I used to teach people how to relieve their stress through exercise!)…I do have a high stress job but it’s always been something I can handle. Neck pain, pain in the left side of the tummy, heartburn…and I lost 20 pounds (and did not have 20 pounds to lose). Also weird headaches and tingling feelings in the temple area. I started having random pain, which I attributed to the PPI (which was affecting me in odd ways –in fact, ALL medication was having a heightened effect on me). I was just miserable and could not figure it out. In addition, during one ER visits, they found Ovarian cysts and I had to take progesterone to try and shrink. My periods had started to become very irregular.

After about 3 GI docs, none of whom would listen or help (they wanted to put me on MORE medication and at one point I was taking two PPIs a day plus Zantac, which is a H2 blocker. I felt that I just was not tolerating ANY drugs well and my body was going haywire. My periods were all messed up and I truly felt like I was going through menopause.

In April I made the decision to see a GI doc at Mayo Clinic. Great doc…had all sorts of tests done, including a neck ultrasound (in which they found a large thyroid nodule that after two biopsies turned out to be benign), Esophageal pH Test, and Esophageal Manometry. Surprise surprise but they all turned out normal. The diagnosis was twofold–bile reflux (because no gallbladder) and a hyper sensitive esophagus. He tried me on a nerve medication but it made my heart race so I had to stop. I pretty much stopped ALL medication at that point and actually started to feel a little better by June.

And then guess what? We were leaving for vacation in July so I went to get Botox just in my crows feet area…and everything started again! I went to a GI doc I was referred to locally and he put me on Welchol, which is typically used for high cholesterol but in my case it’s used for bile binding. I have found that it does help some of my stomach issues. He also prescribed something to help my nerves, but I have not taken it.

I felt miserable from August-October. In Nov./December I had a couple good months and thought “wow”! It’s probably the Welchol I started taking at the end of Sep. I am cured!

Then before the Christmas holiday I went and did it again…it had been 6 months so wanted the crows feet touched up before the holiday. This time I received dysport because the dermatologist said it was “on sale” and works better than Botox.

Guess what again? I started feeling horrible again pretty soon after the holidays! You would think I would have figured it out but I just did not put the pieces of the puzzle together! This time is worse. The racing heart and anxiety is really bad, as are the pains I am having in my left arm and into my the back. Again, I know it’s not an issue with my heart because I went to the ER (again) in January due to horrible headaches and EKG was good. I believe that it’s been affecting my head first and then moving through my body. My neck is so sore and if I look back to when it really started, it correlates to the injections.

I cannot tell you how much research I have done and how many diseases I have self diagnosed me as having before I found this site!  Maybe I just refused to believe because everyone said how safe it is!

I do think I am low on something vitamin wise…I am bruised easily and exceptionally tired. My gyn tested me for low D and sure enough, it was low so I am on a prescription to get it back up. Also, I personally think I may be low on iron.

Does this sound familiar to anyone? Anyone lose an organ (gallbladder) to Botox? Anyone have issues with bruising? Tiredness? Hypersensitivity to medicine? Pain on muscles–even to the touch? Back pain, left side pain, arm pain…Anxiety and a racing heart like you are dying??  Ear ringing?  Do you think that Botox can send you into menopause early?

I just don’t know how I can go from a perfectly healthy person to absolutely miserable in less than 2 years. Within that time frame I had 4 Botox injections (one of those was Dysport). I have tried a chiropractor, acupuncture, herbal supplements, doctor after doctor (who now think I am a hypochondriac). It’s been the ride from he!!

Only things that seem to help–massage, hot showers, the heating pad, eating healthy (although I really believe sometimes I feel better eating Doritos than lettuce!). I just want to feel better and not wonder what type of day it’s going to be when I wake up!

Thanks for listening and I am curious if any of my issues resonate with you?  When will it end??  Thanks!

CONSIDERING RECEIVING BOTOX OR DYSPORT INJECTIONS? Please read this first.

I do not have a personal agenda. I am not a member of PETA or any other activist organization. I am an intelligent, educated, responsible and rational person. I do not have anything against anyone who wants to use injectables or any other treatment for anti-aging. I used to be one of those people.

I have had plastic surgery, fillers and, yes, botulinum toxin injections (ie Botox). I was not a “junkie”….just a normal person that wanted to try and slow the age clock….just a little. I was scared to get my first injection, we perhaps all were just a little. And…..my first experience with an botulinum toxin product was fine. I actually loved the result. But….when it came time for the next….even though my injector was an experienced, very well-known board certified physician and a leader in the field…..something went terribly wrong. And I am here to tell you…..THIS CAN HAPPEN TO YOU.

I am not unique. There are MANY others who have suffered horribly from these side effects and from the spread of the botulinum toxin. It doesn’t seem to matter if you have had injections in the past with no effects or if you are receiving them for the first time….it doesn’t seem to matter if you receive 4 units or 100 units…..it doesn’t matter if you are 16 years old or 50 years old…..you are at risk. The risks are REAL and the symptoms that you can suffer are some so horrific…..they are beyond what you can even possibly imagine. I urge you to continue reading before making your decision to take this risk.

Let me first assure you that before my injections…..I was a healthy, vibrant, active, athletic, and hard-working female who loved life. Since the ill-fated injection of botulinum toxin that I had now almost 5 years years ago, my life has completely and totally changed. I have posted my story in detail under my profile….but felt for anyone quickly browsing this site with the question of “should I have injections?”….this posting might help with that decision.

Over the past 5 years since my injection….I have been hospitalized twice, been to the ER 8 times….have had 3 MRIs, CT scans, EEG, autonomic nervous system testing, every single imaginable blood and autoimmune test possible…even tests for things that are so rare you have never even heard of them. I do not have any other disease, psychological or medical problem. The botulinum toxin symptoms, which began 3 days after my injection and ramped up to full effect 30 days later…. rendered me non-functional. I had to take medical leave from work twice…..the first time for 2 months and the second time for 4 months (symptoms are known to come/go and relapse)…..and could only work part time for 8 months after that.

My symptoms ran the gamut of head pressure, headache, ear pressure, ears ringing, muscle spasms, naseau, incontinence, nerve pain, inability to have a bowel movement, nerve sensations down my neck/spine, severe head tremors, slurred speech, convulsions, seizures, extreme sensitivity to noise/light/sound, blurred vision, dry mouth, dry eyes, muscle twitches, muscle weakness, abnormal gait, heart racing, difficulty breathing, difficulty swallowing, trouble moving my jaw, tingling and numbness in extremities, acid-burning feeling throughout my body, fatigue, hot flashes, cold sweats.

We are not talking about 2-3 weeks of symptoms…..nor are we talking about symptoms that necessarily subside once you regain movement of your muscles that were injected. We are talking about MONTHS and in my case, YEARS of symptoms. We are talking about close to over $120K in medical bills. We are talking about not being able to drive, go outside, eat, work, live alone…..we are talking about a complete life-altering nightmare.

Many people on this site have spoken about anxiety as being a side effect. The anxiety and panic that can be created from this drug affecting neurotransmitters in the brain are side effects that I do not wish on my worst enemy. I have experienced first hand the reason why there is such concern should this toxin ever be used as a chemical weapon. The anxiety and akathesia created from this toxin is like having a severe panic attack ALL of the time……24 hours/day. The pressure against your body is unrelenting…the feelings of not being able to breathe are horrific….the electrical shocks running through your nervous system are excruciating…..the burning sensation feels like acid has been poured into your bloodstream….you are living in a state of absolute terror constantly…..the terror is in your skin, your brain, your bones…is permeates your entire being. For HOURS on end. There are times that you truly would rather be dead as opposed to living in the nightmare that you are caught in. This is a common thought those of us who have experienced this.

There are HUNDREDS of people that I have personally “chatted” who are suffering these debilitating effects. None of us have any agenda other than to educate ourselves and others on what really CAN happen with this toxin. There are lots of horror stories on this site….and thousands of reports submitted to the FDA. Unfortunately….for now we can only support each other as there are no long-term studies or outcomes research being done. And…well, the medical community using these botulinum toxin injections has to start admitting to our existence, stop insulting our intelligence and stop denying our symptoms are related to the injections. Some of us have been lucky enough to find healthcare providers that offer help (although there is NO treatment or cure for what we are suffering)…but the majority of us are left to suffer without care.

Read the black box warning on the drug. It is there for a reason…..although it took a consumer advocacy group to petition the FDA to demand it. And…the side effects do NOT just happen in cases at higher doses or only with people with previous neurological conditions. Find the scientific studies done in the lab that indicate that once injected….the toxin can move from nerve axon to nerve axon…and into the central nervous system including the brain. Learn how the toxin affects nerves beyond the neuromuscular junction…with effects lasting for years. Find the numerous studies that conclude that not enough is known about how this toxin is actually metabolized in the body or how (or if?) it leaves the body. All of this information is out there. Believe it…and believe me.

I still cannot drive….I still cannot live alone….I still need help with normal tasks….and I still struggle on a daily basis…5 years later. I made the biggest mistake of my life when I decided to have toxin injections. Sometimes the only thing that gives me strength is when I can help to educate others to the real danger of this drug. DO THE RESEARCH. I didn’t…until it was too late for me…and admittedly….I did not make an informed, educated decision. You now can. Hopefully it is not too late for you.

basic tests ok 3.5 yrs

well ok maybe for some tiny bit of good news here. i never had any tests before or saw any dr for any of this stuff becuase it seemed obvious, why bother..

however i did finally go see my gp a few weeks ago just to test a few basic things. she tested my kidney function, liver function, thyroid, lipids and some other stuff.. all was normal..

i have to say i didnt know what to make of this at first; i know in the early stages a lot of us test normal for stuff, which is frustrating becuase we are obviously deathly ill. then in the later stages, where i am now, test results start to come back abnormal, which is equally frustrating because by that point we feel we ought to be actually improving rather than getting worse..

so at this point, 3.5 years, at this moment in time all of those tests for me were normal and im taking that as good news. im taking that as news that my efforts to be healthy during the past year have paid off, and that i have not developed anything secondary, at this point in time. who knows what will happen later, but at this point in time, that stuff is normal.

so im about to start the second year of my 5 year cleanse. haha last year it was a one year cleanse which is now finished. now im starting the second year so i guess i have to call it a five year cleanse cause im sure i’ll be doing it that long or longer. either way, whatever it was, at least it didnt hurt me.. and im thinkign maybe it helped. so fingers crossed. im definitely not anywhere near fully recoverd but i feel as though this is ‘recovering’ at least.. sure wish i could do somethign about my face but i sure dont know what at this point.

so hopefully thats a shred of good news among all the complete f@ck-all.

the entire focus of this cleanse was anti inflammatory.. careful diet and careful supplements, very very simple. (just like many are doing here) gonna describe that all in a post when i have a moment. i know that stuff is different for everyone cause we are all so different but i feel it made a difference for me this year. i am measuring recovery from this condition in terms of 3 years, 5 years, and 10 years.. its so laughable to think i took this risk on the basis of going ‘completley back to normal’ in 2 months…. and when everything i read and researched said the same lie. i do completely blame my dr and i have no reason to ‘forgive’ him. he knew exactly what he was doing. now i understand the look of absolute panic on his face when i started describing my symptoms at 6 months. he knew exactly what was happening to me. now i totaly understand.

Online Neurotoxin Visual Acuity Test

Hey, I ran into this when I was reading Lyme stuff:

vcstest.com.

Apparently your exposure to neurotoxins will affect your ability to differentiate visual contrast. Lots of people with Lyme do not pass until they clear the infection.

I took two of these and passed both of them. This one is free and the other one I took cost 15 dollars but they really are basically the very same test. The paid one has you fill out a questionnaire about exposure to neurotoxin ( Lyme, fungus, etc) but botox is not on the questionnaire.

I was going to cut and paste more info but then remembered Google does not like that :)

New to the site, HELP

Hello, So I have had a lot of Botox for Migraines. A full ampule every 12 weeks for two years.  Looking back I now know symptoms I was having while being treated was from Botox. It wasn’t until the last set of injections August 2014, that I had an immediate reaction with multiple symptoms. I am 6 months post my last injections and I am suffering with nerve pain, muscular pain, muscular weakness and exhaustion. I am an RN and my job is extremely physical and stressful. As long as I am home, pretty much doing nothing, I can handle the pain and exhaustion. I actually think maybe I am getting better and try going back to work. I work one 4 hour shift, and I make it through it. Then try to do the same thing the next day and the muscle pain and weakness sky rockets.  I don’t  know if it is nerve or muscle pain sometimes, but it is severe. After just working a few hours I can barely walk out to my car  and get home without crying.  I am at the end of my FMLA and accrued time. I can not pay my bills and am afraid I will be losing my job very soon. Hospitals are for sick people, but they have no tolerance for sick nurses. My anxiety is through the roof. I cry every day. I have seen multiple specialists as I have seen others have done too. Tons of blood work, everything is normal on paper. I am beyond distressed. I want to work. I do not want to sit on a sofa the rest of my life because I received a treatment for Migraines that would not respond to any medications. My informed consent consisted of you may have redness, pain or swelling at the injection site. No risk there!!!!!  I have the same questions everyone else seems to have. Is it a immune response? How long does it take to clear Botox from your system? Once the Botox is cleared do the symptoms persist? Does this turn into an auto immune disease? It is totally devastating my life…Will it get better or go away permanently? Actually found a Dr. that wanted and did send my blood for production of Antibodies to Botox….could not find a lab to process my blood for that test. Can barely stand it anymore. Any help or suggestions, anything that helped anyone….I am open to all information that could possibly help. Thanks

Am I the only one that does NOT like Botox?

I went to a Botox party last Thursday night (so 5 days ago) just to ‘Watch’. Friend invited me and I thought it would be fun. I’m 33 and I don’t have the need or the money for Botox. Well at the very end of the night after watching everyone get it done the party host who was sloppy drunk at this point pressured me into getting it done saying “I will pay for it. You can’t be the only one not to get it done.” and then basically drug me into the room and into the chair. Now I am an anxious person anyways so immediately I could feel myself panicking…hands sweating, heart racing. She did like 25 I think but it didn’t hurt and everyone cheered and I thought “whatever it’s done now”. I took Xanax in the car to calm down and headed home. The next day was terrible…flulike symptoms and bad anxiety. Then the insomnia started…now I already take Xanax before bed for anxiety because if I don’t me wake up in the morning and have panic attacks but now I can’t even sleep with the Xanax…ITS AWFUL!!! I toss and turn all night and wake up between 4am and 5am and can’t go back to sleep!!! Not only that but I hate the way my forehead feels…I am a very short person so I am always looking up at people but now that my forehead is tight it is hard to look up and feels funny. I am also very expressive when I talk and I feel myself trying to make those expressions and I can’t. I will never get Botox again! I told my husband I will just have to age gracefully with wrinkles and all. I am literally counting down the days until this stuff goes away. I pray every night that I am one of the people it doesn’t work well on and it goes away quickly!!! Any support is appreciated…I am really scared that I will have more symptoms before this journey is over :(

P.S. The party was at a physician’s office so the staff was not drinking only the people at the party.