food borne botulism @ potluck

im sure many of you have seen this news ! huge out break of food borne botulism suspected, one woman died. anti toxin was sent out to many hospitals. at least botulism is in the news and it might get ‘on the map’ for emergency care. if nothing else we know what foods to lie about eating to try to get the anti toxin ( kidding)

http://www.newarkadvocate.com/story/news/local/2015/04/22/ohio-botulism-outbreak-largest-decades/26195911/

2nd Entry

Hi all!

I am now 11 weeks post injections and am slightly better. My main symptoms now are migraines, insomnia, and neck pain. I was subsisting on Motrin 800-1200mg a day and .25 of Lorazepam at night to help sleep. A couple of weeks ago I was beginning to see the light at the end of the tunnel until the 4-day Migraine hit. It was so bad that my neurologist put me on Topiramate, a medication I have to take every day and has a host of side effects of its own. So now I feel I’ve taken a couple of steps back.

Has anyone else been on any kind of migraine meds like Topiramate? I was thinking to stay on it until I hit 3 1/2 months post injections and then start to ween off of it to see if the headaches are better naturally. But now also it’s another medication I have to be on when I’m trying to detox my body. Any thoughts? Also, I went to see a naturopath a few weeks ago who put me on a chelating agent. I used it for a week and a half until both my neurologist and internist said I should stop taking it…so I did. They said it was a dangerous substance. But was this the right thing to do? I did not call the naturopath to tell her I had stopped because we really didn’t connect and I’m waiting to see a new one next week so I’m kind of left with no regimen to follow in the meantime…not a good thing when every day counts to get this toxin out!

Thanks ahead of time for any input:)

Pls help symptoms worse. Heart & lung pain…

It is about 20 days since the injection of 40 units and I haven’t felt worse. Every muscle is sore and aches. My throat is sore, my ears feel full, my face burns slightly, worst my heart hurts constantly and my lungs hurt with every breath. I feel so fatigued.

 

These symptoms are somehow different than what I experienced at the start of my illness in ’12 but also somehow similar. Last night I had facial numbness and numbness in my lower legs. The other day I woke wuth a hand half numb, the bext night, the elbow.

I am now open to the idea that all my health problems were made possibly by Botox. It makes me sad, but it’s crazy I’m in too much pain to feel sad. I’m too busy just feeling pain.

Do I need to be concerned about the heart pain? Lung pain? Lung pain? Why is it getting worse now so far past the injection. I don’t have the stength to search through previous responses and see what has been reported… Pls help me understand.

 

 

 

 

VIDEO: Family of Celebral Palsy Child who sued Allergan and won

For the people who are searching for the reality of Botox injections here is the 7 minute video of the parents of Joshua Drake after they won the lawsuit.

http://www.burlingtonfreepress.com/videos/news/local/vermont/2014/11/22/19432141/

She states the “lethal dose is 40″ but 40 units per kilograms is Allergan’s published number. The internal Allergan documents show 4 units/kg caused internal damage to monkeys and 16 units/kg killed half their female monkeys. All their monkeys “looked normal” before they died and had unremarkable test results even though 100% of the 36 monkeys had systemic toxicity and/or botulism. What is remarkable is how a company that KNOWS WITHOUT A DOUBT their product (a sublethal doses) causes botulism and permanent damage can market this as helpful. Google “Allergan 91-3708″ to read full report.

My grandmothers diary

I stumbled upon an old notebook of my grandmothers today while I was cleaning out some drawers and starting reading… She has some wise words for all of us, I wanted to share a few..

The gentle smile the reconciling touch, can cost so little can mean so much. To heal a breach or mend a friendship broken, a letter written or a sentence spoken. What hurts and pains we suffer needlessly, What pain inflicted we cannot see. How much we lose through conflicts and contentions, poisioning life with quarrels and descentions. Let them all go and love triumphant be, over all evil, hate, greed and jealousy. Loves tender word and forgiving brings to the heart, true peace and joy of living.

Go not too often or too far along the road where memories are, but find content and pleasures new in what the present holds for you.

Inch by inch it’s a cinch, yard by yard your making it hard.

Fear knocked on the door, faith opened it and there was nothing there.

What we though were ends, turned into bends.

One step forward and……I trip over myself

So….I guess my being angry” post has come back and bit me in the butt. I guess I need to send more positive energy into the world….and hope it will then come back around to me.

I WAS finally starting to feel a little bit better from yet another relapse that I had at the beginning of November. I had been spending most of the time that I was not sitting at my desk in bed….too physically exhausted to do anything beyond just getting myself through the workday. The chronic fatigue was so debilitating. I was only showering once every 10 days as the act of taking a shower left me lifeless. I even went 3 months before I could muster the strength to even do a load of laundry.

The amount of time that I was spending in bed….especially over the many months long term…had been increasing and I was starting to get really concerned about my bone strength…overall loss of muscle tone for even doing basic things such as pushing a vacuum cleaner across the floor…and the weaker I was getting…the harder and harder it was becoming to even try to get myself back into some sort of basic physical strength.

Let me say that before I got sick…I was a runner..lifted weights..did cardio…had the stamina to work 14 hour days and then clean closets afterwards. And my being so bedbound so totally goes against the type of person that I am. But the chronic fatigue, weakness, and exhaustion that would overcome me with even the slightest amount of exertion always seemed to land me back in bed.

Last week I, for whatever reason, was starting to feel a bit more energy. I am not sure why…but I was just so grateful for finally being able to do a little cleaning around the house, organize some paperwork, be a bit more conversational with people at work (as opposed to always having my door closed)….and thinking I was finally getting back to baseline before this most recent relapse. I even started thinking I need to try and start some physical therapy if I took it slowly. I even did something I hadn’t been able to do in over 3 years….I drove my car. Not far…but i was sitting in the drivers seat of my car. I was beyond excited. I was so grateful to be able to do something that was normal. Like a normal person. A step forward.

But today…..several steps back. And a very harsh reminder of how not normal I am. I am not a normal 56yo woman who should be in the prime of her life…but rather one who has the lifestyle and frailty of someone in their eighties.

Today…..I crashed. Literally. I tripped on a curb and went crashing to the ground. Body slammed against the concrete and landed into a big puddle of water. My left foot twisted while I fell onto my right side. The wind was knocked out of me and I couldn’t breathe and blacked out for a few seconds. I opened my eyes and everything at that point was in slow motion….and in that moment I felt every symptom of my illness in full force. My mouth became intensely dry. My head started tremoring. My muscles started cramping. Tingling in my face and extremities. Nausea. Burning. And…I could not move….at all. I was slurring my words. I could not understand what anyone who ran up to me was saying. I have taken falls before….when I was a “normal” person…and I would just catch my breath, get up, brush myself off, and limp away. But in that moment, lying on the ground, this time, it was apparent that I was so not normal.

There were two medical residents coming out of a Starbucks that saw me fall…and came over to help. They tried to get me to stand up…and I couldn’t even sit up. I didn’t have the strength in my arms to even crawl out of the puddle of cold water. They kept asking me…”Can you hear us? Did you hit your head? What is your name? Can you move? Do you have a medical condition?” I wanted to scream…..”YES!!….I have a medical condition..and it currently is completely paralyzing me. I am sick…PLEASE….SOMEONE….take an interest in what is happening to so many people who are sick with this illness and HELP us. Please help make me normal again. PLEASE!” But all I could do was lay there…in the puddle of water…knowing that there were now a dozen people along the street that were gathered around staring…at me.

I eventually was carried to a car and into the closest ER. The ER that with this illness I have been to many times before. The ER that I didn’t want to go to. The ER that I have spent hours upon hours in when I was hospitalized twice. The ER that I have argued with about this toxin, this illness….the ER that I am sure has the notes at the top of my record that flashes “crazy woman that thinks she is sick from Botox”. The ER that admittedly gives me PTSD. But that is where I was taken.

And it starts. “Hello…are you on any medications?”. (Yes…but it is not for the reasons that you think I am on them). Do you have any medical conditions? (Yes….and I am sure that you have already looked at my medical records so why are you asking me? I tried to explain my condition to you before but you have no understanding of it). Have you had a tetanus shot? (No…I am not up to date on my tetanus and I am quite certain that if you gave me a tetanus shot now..it would likely kill me. Side bar…for those of you that don’t know…tetanus is a close cousin to botulinum toxin and a tetanus vaccine is NOT a good idea for someone suffering effects of botulinum toxin poisoning).

The nightmare of being in a hospital with what would normally be a routine ER visit…sprained ankle….abrasions….but nothing about any medical visit is normal for me (us) anymore. Refused the tetanus shot. Refused pain meds (can only take child doses). They didn’t understand why I was tremoring. They didn’t understand why everything was so painful. Why an otherwise seemingly “healthy” women could barely move. I just told them I had fibromyalgia, CFS, and MCS. Three things mainstream medicine still doesn’t really understand…but at least they have names.

Six hours later…no broken bones but possible tear in foot tendons or ligaments. I now have a walker as I don’t have the body strength for crutches. Followup with specialist is needed.

Yes, it could have been worse. I could have broken a bone. I did that already one month before my 2011 relapse. I sometimes wonder if that trauma caused it. It could have been a car accident. I could have stepped on a rusty nail. It is just a bad sprain and possible tear and a bruised hip and elbow.

But I am again bedbound. Again. Completely. When I was bedbound before…I could at least get up and go to the bathroom. Now I Can’t even bear the slightest amount of weight on my ankle. Excruciating pain. Can’t bear weight on my right side from the bruising. And…I feel like I have been hit by a truck. Literally. My poor general state of health is painfully obvious by how a simple sprain is horribly traumatic for a weak, already traumatized system. It brings all of the fears of what if? What if this was worse? What if I need surgery? I am already at risk of losing my job. What kind of relapse will this trigger? What if what if what if.

Such a short-lived moment of feeling that I was away from the hours and hours of being confined to my bed….at least for awhile. :(

New study shows Botox enters CNS

Take a look at this article published today and the study published in the journal of medical science posted yesterday which the article appears to reference. Although the article states that no adverse effects have been reported, at least we have acknowledgement!!! Take this to your doctors!

http://www.newsmax.com/Health/Health-News/botox-dangers/2015/04/16/id/639032/

http://m.jneurosci.org/content/35/15/6179.short?sid=c21ba840-5f3d-47fa-9a5d-32c5d1649de7

Ocular Hypertension?

So, I had a high eye pressure reading at my eye doc back in Feb. (I got injected w/ Botox on 1/7/15). He sent me to go see a super-specialist eye guy to make sure that reading was accurate. Was there today to get a field acuity test, shots of my optic nerve, more sophisticated eye pressure tests etc. The doc is wonderful, they know about the Botox but of course no one ever thinks the Botox causes anything. Anyway, I had an eye exam about a year ago, pressure was fine. Now it’s 24, super high, all of a sudden. They are talking glaucoma now, ugh. I have never had problems like this, and I know that Botox causes eye pain and problems. Has anyone else had experience with this?? Any thoughts? My field acuity test was great, but he said that optic nerve looked “compromised,” and that my pressure was crazy high. He is taking the watchful waiting approach, but in the meantime Professor Google says  exercise and caffeine avoidance are key to bringing eye pressure down. I know that these are good things to do anyway after being poisoned by Botox. The weird thing is that one of the first things I noticed after being injected was that I got these horrible dark circles under my eyes — greenish-purplish circles. I naturally have always had dark circles somewhat but these were like a sick person’s dark circles. The only way I can explain it is that they looked really greenish, and that I have looked really weird and sick. In fact there are days when I swear my complexion practically looks green! Like a sick person in a cartoon. My poor eyes have looked sick ever since the injections and I am sad to get the news that they actually are. Though this doctor says there are laser treatments that help the fluid drain out of the keys a bit better and reduce the pressure. My dad has slightly elevated eye pressure but he didn’t get that till his 60s! So I don’t think this is just a genetic thing, even though he does have it (I am in my early 40s).

Make Sure Botox didn’t Give you CRPS

A minor nerve injury like a bee sting or needle prick can give a person CRPS. Botox seems to me akin to a nerve injury now. Maybe I am stretching my scientific thinking here… but just consider it. If you google CRPS you will see images of swollen limbs or dystonia. You do not have to have either of these symptoms to have CRPS. I don’t have it and I have met others who do not.

 

Clinical diagnostic criteria for complex regional pain syndrome

  1. 1)  Continuing pain, which is disproportionate to any inciting event
  2. 2)  Must report at least one symptom in three of the four following categories
    Sensory: Reports of hyperalgesia and/or allodynia Vasomotor: Reports of temperature asymmetry and/or skin color changes and/or skin color asymmetry Sudomotor/Edema: Reports of edema and/or sweating changes and/or sweating asymmetry

    Motor/Trophic: Reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)

  3. 3)  Must display at least one sign* at time of evaluation in two or more of the following categories
    Sensory: Evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure and/or joint movement)

    Vasomotor: Evidence of temperature asymmetry and/or skin color changes and/or asymmetry Sudomotor/Edema: Evidence of edema and/or sweating changes and/or sweating asymmetry Motor/Trophic: Evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)

  4. 4)  There is no other diagnosis that better explains the signs and symptoms** This means that no blood test or other test like that for Small Fiber Neuropathy proves that something else is going on. For us this might be the mouse test, but it may be possible to be suffering from poisoning and also have a nervous system reaction to an injury- who knows I am not a doctor. Just speculating. Please take these things with that knowledge in mind.

Illness ruining all aspect of my life

I lost my license of Friday night for drink driving, what a nightmare. I’ve barely gone out or drunk anything in the last 2 years. I joined some friends for dinner only intending on having 1 glass and got carried away because I just wanted to feel like a normal person for one night. I’m taking a number of medications and I’m sure my body is not breaking things down effectively so these factors may have contributed to my reading. I’ve now made myself so sick with the stress of it all. Why did I go and make things so much harder for myself? I really hate myself right now.

Update…

Hi Everyone,

Just wanted to post an update here. I was diagnosed with POTS after having reconstructive surgery on my left ACL. The days that followed were a nightmare …to say the least. I had every symptom mentioned on this site on top of the recovery process of a major surgery. My pupils would not dilate (so I was pretty blind), I lost vascular tone, my heart rate was wacky, my blood pressure was wacky, ears were clogged, hair fell out, my entire body was emaciated from dehydration; my skin, mouth, and eyes were dry, my menstrual cycle stopped, and my stomach was all messed up.

I attribute all of this, including the muscle weakness that led to the destruction of my ACL to a cosmetic botox injection I received in 2013.

The good news – with great determination I have resolved most of these issues. Now my main struggles are dealing with the leg heaviness, cramps, and fatigue from orthostatic intolerance. This is what helped:

Mestinon (Pyridostigmine) – helps to maintain muscle strength.

Collagen Types 1 and 3 to help with hair and skin. I also switched to using henna for color.

Exercise- as much as I can tolerate- I push myself (I also have to rehabilitate my left leg because it was left an atrophied mess)

Biofeedback- To control heart rate and improve autonomic response.

Acupuncture- To improve autonomic balance and blood circulation.

Reflexology – To improve oxygen to the muscles and alleviate the heaviness in my legs.

A healthy diet

Tons of water- 3 liters a day people!

Sleep – as much as I can get- which unfortunately is not enough.

I hope you all are doing well and my best wishes for a steady healing process! Hang in there.

PS – I work full time and push myself to go to the gym in the evenings- it is not easy, but it is possible. It is sooo important to keep moving:)

 

On the Verge of treating this as CRPS flare- but is it the Botox?

I am looking at some really awful options to treat the spread of my CRPS/RSD since the botox use April 2, 2015. I don’t know what to do… and I fear that whatever I do may make me worse, or that the symptoms are not my CRPS but just botox and that they would naturally pass. Unfortunately with CRPS one has to act quickly.

The docs have talked about an outpatient Ketamine infusion.

A. But I am sensitive to needle pricks and might get more CRPS in my arm. Then they bring up getting a port implanted under my skin and I think that’s even worse… One doc suggested a stellate block before the IV placement- but the placement goes on 10 days.

B. But I have interstitial cystitis already which is a side effect of overuse of Ketamine and may make my bladder much worse.

They have also discussed stellate injections and lumbar blocks into the sympathetic nervous system but it would only work on the top half of me, then the lower half, not systemic, and involve 4 needle pokes.

A. Again sensitivity to needle pokes is a problem and I was terribly injured by one of these injections once.

Lidocaine infusions and plasmapherisis and IVIG were also discussed at one point before.

 

BUT- if these symptoms I am labeling CRPS are the botox then I am putting myself through this for nothing.

I am alarmed by these: Burning face 24/7 like intense sunburn/heat in face/neck. Pain in Jaw/teeth sinuses, eyes with an onset date over a week past the injection.

Pain and burning in neck. Burning in upper thighs. Heat. Aching pain. Buzzing tremor.

Skincolor discolorations. Mottled skin above thighs blueish above lower leg. Tender feet, pain walking.

Overall increased aching, visible veins, pain doing things that do not normall provoke pain like tapping a keyboard.

 

I think the increased pain while walking in leg muscles is from the botox as is the floaters in my eyes possibly, the low back pain and injection site pain.

 

Very confusing!