Category Archives: Helpful Hints

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Breathing problems. Muscle weakness

Hi all

I would be so grateful if I could get some advice on how long I will be suffering the side effects of Botox. I had injections into my right calf on the 13th of May 2015 to try and bring my ankle to the ground as I toe walk due to a muscle contracture.  and two weeks later I developed some pretty bad side effects. My breathing is very laboured and I cannot get a deep breath as it feels like my rib muscles aren’t strong enough. The worst side effect is the muscle weakness and fatigue that I’m feeling throughout my whole body. Every limb and muscle is so weak and I now cannot work or drive due to the loss of strength. It’s worth noting that I already have muscular dystrophy so this has made me even worse than I ever was. It has been six weeks since the injection. I have been to A and E once already and spoke to the doctor that administeredn the injection. He said that it is most likely linked to the Botox and that my symptoms should subside after about two months.  Any input or advice would be greatly appreciated.

 

matthew

3 year update


 

3 year out update

it has been about 3 years since I had these injections. As mentioned before some of my major issues were humming in right ear,  dizziness, permanent migraine with pain all along the right side of my head including jaw teeth face. I also had swollen lymph nodes in my neck , jaw and back of head. My eyes were blurry and my vision seemed off. There were more issues but these were the major ones. I have been on medication since this ordeal to combat the severe vestibular migraines I had been suffering from. I was put on 2400 mgs  of nueronton and 100 mgs of nortriptyline. I have been able to successfully wean off nueronton w no side effects. I have definitely gotten better since this ordeal. I no longer am dizzy, I do not have anymore migraine pain and my vision seems back to normal. I do however still have tinnitus but it seems a lot more quiet now. I hardly notice it now. I also still have eustation issues in both my ears. About a year ago I had sudden hearing loss that did come back with a steroid injection through the ear drum. Thankfully I got all my hearing back. I believe I had an attack of the immune system after these injections. I read about the list of side effects and thankfully they have come out with a lot more than 2.5 years ago. Glad that is being exposed. I still have to take the 100 mgs of nortriptylin or else my migraine symptoms come back. As I write this I now believe the botox or possibly the the juvederm were the cause. Please know that a lot of symptoms will disappear but you may be left w some. I am better but not the same. I can now function  and do everything and more pre injection. I would say it took a good 2 years to feel good again w the help of some major medications. All of that anxiety is also gone. . Peace and love to all of you. I hope you feel better soon.

Folate Gene Mutation, B12 and botulism/MCS

Hello friends

pennies are dropping everywhere for me about the severity of my renal AND OTHER reactions to food and chemicals since Botox. To have reactions that last 5 months at a time (first to a microscopic amount of alcohol, then again 6 months later to a microscopic amount of aspartame), just did not seem right. I am not exaggerating about the five months of renal (and other)  malfunction.

First general tip….lots of recent medical research has repeatedly suggested that HYDROXYCOBALAMIN (Which is Active B12 not the normal B12 vitamin supplement) IS OFTEN INVALUABLE FOR PEOPLE WITH MCS WHICH INCLUDES SOME OF US.  The reason is that apparently our nitric oxide function has gone into overdrive to protect us, however it also generates nasty free radical byproducts that enlarge our sickness, but  that active B12 evidently scavenges and neutralises.

Has anyone tried it?

I have not started it yet; just ordered it without additives, and plan to go up in microdoses. Will advise how I go in due course.

Secondly, there has been some talk on this forum previously about folate and the MTHFR gene defect. My GP told me that a mutation in the gene will cause sensitivities and particularly after Botox ….stupidly I did not believe him/follow up/get tested. Well 16 months later, I now have had the blood test, and I AM HOMOZYGOUS A1298C. This means that my folate enzyme works at maybe %30 efficiency or even less, producing precious little B9. This is a MAJOR DISCOVERY FOR ME IN BOTOX RECOVERY, AND GENERALLY.

Evidently between 40 and 50 percent of the population has at least one copy of a folate mutation….so 40 to 50 per cent of us in Botox land!?? Is my doctor right that having this folate deficiency could make Botox illness multiple times worse???? Soloist I have PMed you and want to chat about this…

Folate B9 is fundamental to mental health in particular, and ultimately every body function. There has been an explosion of medical and university studies on it in the last year. Treating such a deficiency  may not be the silver bullet for all diseases or toxic illnesses,  but it contributes strongly to many. I have been agog to read these medical journal articles and studies. It is almost too good to be true, but it looks credible to me. My illnesses all my life pre-Botox, coincidentally, are exactly what this A1298C mutation will cause. Big coincidence..now many times worse after the poison.  All the dots are connecting for me and my symptoms pre and post Botox. The family tree illnesses all fit exactly. I Just need to try the supplementation of the methyl folate B9  (replacement enzyme byproduct) and see if the hypothesis is correct. I am not sure but can’t help wanting to share this possibility in case anyone else can share experiences, or can look into it and benefit.

If you on this site were to test positively  for MTHFR heterogenous or homozygous,  then what this means is that maybe in Botox recovery, your nitric oxide function is impaired even more than non-carriers with poisoning/ MCS. Maybe just maybe , addressing any deficiency, might help with your recovery? There is loads on Google Scholar, Pubmed, and the net, if you google folate, or MTHFR.

I have also found a methylation specialist to supervise this B12 and B9 treatment. It may not work for me. I am afraid of taking micro drops and how sick I might get. It may not work. But I am so disfunctional that I have to try!

Angela

 

 

FYI

I know a lot of people can only really do smoothies and green juices and not a lot of meat – I have been looking into the AIP diet, and bought a cookbook. It recommended getting anti-inflammatory Omega 3 from canned salmon (organic of course). I picked up a few cans to have around & put in salads here and there, but then by chance came across this:

http://www.foodpoisonjournal.com/food-recall/more-canned-fish-recalled-over-botulism-fears/#.VlPRoYTnLdk

Apparently there have been THIRTEEN recalls of tuna and salmon since October. And a wide range of companies. I remember White Pony suggesting anyone on this site stay away from anything home-canned from the farmer’s market due to potential presence of botulism toxin, so I thought I would post this because it might be another potential source. I signed up for the FDA’s recall alerts a long time ago to stay on top of the pet food recalls but eventually kept an eye on all the human food recalls, too. Here’s where you can sign up for recall alerts by email:

http://www.fda.gov/AboutFDA/ContactFDA/StayInformed/GetEmailUpdates/default.htm?source=govdelivery

Not to seem paranoid, but i know most of the people on this site need an encounter with botulism or salmonella like we need a kick in the eye. From what I have noticed a lot of the recalls don’t make it to big, mainstream news sources unless they kill dozens of people. So, just a precaution, it’s pretty shocking how adulterated a lot of our food is — and not just the industrial stuff, there are tons of organic brands on the FDA recall list as well.

Here’s to a calm & healing holiday weekend for everyone, I think about you all often & send lots of good energy out & hopes for healing as quickly as possible.

FOOD PROBLEMS / ALLERGY REACTIONS

I’M CURIOUS  what foods are giving most of us problems,

I already had a very limited diet due to IC or Interstitial Cystitis,  it is a Bladder disease so if I cheat and  I eat certain foods it causes me pain or my heart races, also it burns my bladder causing me to feel like I have a U.T.I or Urinary track infection,      My bladder and pelvic muscles become inflamed and it causes my back and lower legs or feet to throb,   it’s basically an allergy in my bladder, so I have always been on a very strict diet and can not take most medications,  this is why I warned my Doc I was scared to get a reaction to the 100 units of Botox he wanted to inject in my pelvic muscles,

 

3 weeks later I started to sneeze weirdly, meaning I thought I was going to stop breathing,   then my heart was pounding very fast and I was so out of breath,also very high blood pressure, normally low,     then itchy welts under my arms . next a rash,   I was so sick I couldn’t even comb my hair for 3 solid months ,

 

Foods, and Med’s

I had to stop salt, Beef, milk, breads, butter, Fresh beets,sweet potatoes  I can’t eat cookies, ect….I stopped coffee and many other foods years ago,   but now I can’t eat most of the foods I could tolerate,

breakfast,,,,,,,since march 2015 i only eat 2 or 3 boiled eggs or use light olive oil to cook them in, boiled potatoes fried in olive oil , water only to drink

Dinner:  white rice plain,   plain broiled  chicken, fresh Zuccini, or green beans, or Broccoli,,, Water

fresh… blueberries or fresh pears,

Watermelon was causing my breathing to get worse and I felt very fatigued,  same with other foods,  I was exhausted all day if I ate even a few peanuts, or one cheeze it cracker,  also It gives me digestion problems,

I loved salt and can not use it any more, my blood pressure is out of control and I take a pill 2xs a day to control it,  I also have problems with foods getting stuck when swallowing,

 

it’s been 9 months and I have improved, I just hope and pray I will get back to my old self after a year,,,,,

I’m also taking vit D and Vit B for the past month,  not sure if the B vitamin is causing me belly pain  so I stopped them for now,

anyone who is having the food and medication intolerance please message me   I used to use Benadryl if needed and that’s causing my heart to race,

Sandy 53yrs

(Boston MA)

Autoimmune supplements

Hi all
It seems a lot of us have autoimmune issues and autoantibodies. This was the protocol I was given for my autoimmune issues.
The products I use are from apex energetics. I get them shipped from the states. The Berberine is from Swanson.

Berberine – stops B cells from making anti bodies
Essential fatty acids – lowers inflammation and protects cell walls
Gastro ulc – assist digestion and acid reflux
Glutathione recycler – spare cells being damaged by autoimmune response
Methyl sp – lower homocystein levels stops damage to cells and blood vessels
Repair revite – heal gut lining
Vitamin d – pushes the regulatory cells.
I also take..
Gapatone – lows anxiety and stress
If anyone has reflux I can thoroughly recommend the gastro ulc product. I no longer have any issues with this.
This was obviously designed for my specific results but I thought it may help people.
Regards

NO

Pyridostigmine – Botox cure?

Has anyone taken pyridostigmine? Or know anything about it?

I’m guessing it only increases acetylcholine levels to counteract the botox effect of decreasing acetylcholine…but not rid the body of Botox itself?

Does it work months (or years) after injections?

my friend pointed it out to me on this blog

http://fauquierent.blogspot.com.au/2014/07/botox-injection-severe-side-effects.html?m=1

i was in emergency again the other day so like everyone else, I’m always looking for help.

I’m seeing a GP tomorrow who I know is open minded and understands Botox is poison. Should I ask for this drug?

Thanks everyone xx

Higher dosage of botox (Dysport)

Hello everyone,
I’m new here and this is my first post. Now, my diagnose is paraplegia spastica, it’s spasticity in leg muscles, witch is causing problems with walking ( spasticity is reducing my control over my muscles);muscles are weakened, but not entirely. I received botox (actually Dysport) in gastrocnemius (2×75),adductor longus (150) and tibialis posterior (150). That was three months ago;I had a little headache that day. Soon I need to go to receive another dose (29.july),and I want to seek a higher dose (because spasticity is in all muscles of legs). I read that usual dose is around 1000 units and that maximum dose is 1500 units (at dose above that, poisoning is possible). What are you thinking about this? Has anyone been is similar situation?

Fells like I swallowed acid

I am so devastated to learn what I have done to myself. I did not figure out until this last year that Botox has ruined my life & I feel like at times I can die, I have had what seems to be attacks that lay me out! I sort of started to put two & two together as it seemed that just a day or two after I got Botox I would become ill. I thought to myself no I have been getting Botox for years BUT you know what I have not felt great for a very long time, I blamed it on PMS, I have female issues, stomach problems I just thought it was my body until this last year. WOW I am sick I am scared that I will die! My body is so thin it hurts all the time, I have terrible night sweats only at night, I have a hard time eating as it feels like I am swallowing acid, my body cannot break food down properly. I asked so many Drs to please help me and they tried until I mentioned BOTOX this is both PS & GP they say no way it cannot get into my body but I now know it has. My last Botox encounter proved to me that I now have botulism poisoning. So I will not go on & on but I have some good news, I saw a gastroenterologist who is also a scientist, she  believes me she thinks that I have been sick because of Botox. I have been diagnosed with hydronephrosis due to my sphincter valve being damaged due to the botox this has caused kidney problems & my gut. I am getting ready this next week she plans to scope me & is actually taking my case to the board so that the Drs she works with are aware  of this. I pray to God I get better as I feel so sick but this has cheered me up finally a Dr to help me!!  I Hope I can help many byn sharing this, my Dr pulled up on her computer in front of me the side effects of Botox & was convinced many of my problems are due to Botox. The botix has weakened the valve to my kidney to my bladder and I am in danger of loosing my kidney if I do not fix it, I am scared to see what she finds in my gut and that entire area. This is very scary & very real. I am hoping for s class action against the use of BOTOX!! If anyone has any of the same issue please let me know. I will keep posted the results of my scope as well. Oh I also have dents in my head and hollowing in the temple area a PS said to me that it was just my facial structure well I did not have it until now since I have not used botox go figure.

Enough!

I’m a 53 year old very athletic woman, I play tennis, walk anywhere from 6-7 miles approx. 6 days a week and hit the fitness center on occasion.  And I am sick by what I believe Botox has done to me both mentally and physically.   Finding this site has been my salvation, it has helped to keep me positive and fighting through this miserable experience.

I have had approx. 4 or 5 injections, my last on being on April 3, 2014, 54 units in my forehead and around my eyes.  Three weeks later it all began to fall apart.  I started having some very concerning health issues, it began with having trouble breathing one day.  I tried to stay calm, thinking it must be some sort of indigestion, well low and behold I did burb,  but it was as if it had to fight it’s way out.  Then one day I noticed that my tongue was quivering and fasciculating, along with all of the other muscles in my body, and I mean pounding.  My muscles ached like never before, I would be sitting on the couch and be in pain, without even moving,  then I would get this spasm in my left calf that was terribly painful.  I’ve been athletic all my life, I’ve never had a muscle spasm!.  So then I start having trouble speaking, I was on the tennis court, just trying to say “good shot” and it was like I had to fight to get the words out of my mouth, thank heaven, that only lasted a few weeks.  When I would go to work out I would come home literally with my muscles trembling,  when I would try to do a plank my arms would shake like jello, when I was walking I was afraid I was going to fall because my muscles weren’t supporting me.  My arm would just jerk, for no reason, out of the blue.  Then the real fun set in, trouble swallowing, anxiety and depression, I would wake every day with just this overwhelming feeling of dread.

The trouble swallowing and my tongue quivering led me to begin with a visit to an ENT.  I was diagnosed with laryngeal and pharyngeal dystonia, which is caused by a neurological problem which they treat with….Botox!  I could tell by the Dr.’s face I was in trouble.  My voice was also very hoarse.  Wants me to see a neurologist immediately.

This is when I began to utterly fall to pieces.  I was sure it was either ALS or Parksinson’s, Google really can a times be one of the worst inventions ever.  I contacted my GP and asked for a prescription for Xanax, the anxiety I was experiencing was overwhelming.

So begin the visits to two neurologist, who conducted muscle and nerve conduction tests, I had blood work, two MRIs and various visits to my GP.  Guess what?  Came up with nothing.   Am I crazy???

In regard to the trouble swallowing I noticed that if I had a cocktail I could swallow.  What the heck?   I couldn’t each much during the day, so at night I have a cocktail and eat like a truck driver.  Well, then put two and two together and found that the Xanax helped with the swallowing a bit as well, but not as much as the alcohol.  I was grateful for that because I couldn’t go around drinking all day and I was freakin hungry.  The ENT said it was because it was relaxing the muscle.

One day I had the TV on and heard a commercial for Botox and heard that it can cause trouble swallowing!  I’m embarrassed to admit that I did not due any due diligence regarding the strongest neurotoxin on earth that I was injecting into my body!

Months pass and I notice that my tongue is not quivering anymore and my voice isn’t as hoarse.  I went back to the ENT and asked him to bear with me and hear me out, I think this has been caused by Botox.  Now the man works with it to treat the condition I was diagnosed with so I was expecting him to disagree with me.  He scoped my throat and said he saw improvement!  He said, “I think you figured this out for yourself”.  He agreed with me!!  I almost jumped out of the chair with sheer joy!  He also told me the problem swallowing could last anywhere from 6 months to one year!

After that I started to calm a bit, still dealing with all of the symptoms, reading this site to stay strong,  but hoping we’re right and just trying to cope through it.  Then I get a call the other day from my GP and he asked if I’m buying into this.  Oh no, please, I can’t go there again.  He wants me to go back to the ENT for a recheck.  I went in, making sure not to take any Xanax so I would get a clear result. He said the dystonia was 90% better but he wants me to stop the Xanax in the morning to make sure it’s not masking something and I truly am improving.  Enough, please!  Now I’m a wreck again.  What if I have been masking something?  I can’t do this again.

I’m going to try to stay positive, I’m pretty darn sure I’m heading in the right direction!  I’m not having trouble speaking anymore, my muscles don’t hurt, albeit they do still fasciculate, but not as hard, I’m not cramping anymore and the depression has lifted.  I am still struggling a bit with anxiety, but having trouble swallowing for close to a year gets old.

My questions for any of you are:  Has anyone had the same diagnosis of dystonia and has anyone had trouble swallowing for such a long time.

My helpful hints are fish oil and especially magnesium.  Not all magnesium is the same, some are not absorbed as well.   I’m using Magnesium Taurate and truthfully find it amazing in calming my muscles.  Also a cocktail for swallowing….I’m probably going to wind up in AA, I think I’ll send the bill to Allergan, or whoever just bought them out.

Thanks for reading my ridiculously long dissertation.   Any and all support, suggestions, ideas, anything would be enormously appreciated.  And for those of you who began this site, I thank you from the bottom of my heart.  For those of you suffering I wish you strength!

 

I

 

 

 

 

Couple More Ideas

RED LIGHT:

 

Because I thought I had brain cancer or Parkinsons at one point, I bought a red lamp to sleep under at night. Red light is supposed to be the “cellular reset” for nerve and organ damage, and it’s been shown to increase recovery time in injured animals, especially those with brain, nerve or organ damage. I am not sure if it helped but it made me feel better at one point to know I was “resetting.” Sunlight on the back of the neck works the same way.

 

CRANIOSACRAL THERAPY:

Is currently saving my life. Cranio Sacral therapy is considered Quack Medicine by some, but it also elicits theta and beta brain waves and offers a state of relaxation way way beyond massage. Every time I leave a session it feels like I’ve been holding up a huge boulder ( I have: my HEAD) and I can finally, *finally* let go and rest. The therapist literally cradles your head in her hands like a bowling ball and *very* gently restores range of motion to *all* those little nerves and tendons under your skull. I would spend my last dollar on it.

Helpful So Far

I’ve taken ALL KINDS of supplements to try to kick my body into gear but these are the ones that seem to be the smartest and most helpful so far:

Vitamin B3 ( Niacinamide) Lots and lots and lots — it’s been shown to regrow nerve cells specifically in rats. All B vitamins are good for certain things but B3 and B6 specifically for nerve and organ damage.

Progesterone: Keeps the body stable under stress.

Pregnenolone: Also keeps the body stable under stress.

Nigella Sativa: modulates nitric oxide formation and protects from shock. It is a thousand year old remedy and has no side effects. It is always listed as “anti-cholinergic” but I don’t think it’s been adding to anticholinergic toxicity at least in my case.  It will also bring down blood pressure.

Aspirin: For inflammation. Aspirin is a much better choice than any pain reliever because it is immunomodulating and specifically breaks up the mechanism that forms scar tissue. Since the neurotoxins effects will probably bring about scarring and thickening in soft tissue;aspirin can protect against that.

DIGESTIVE ENZYMES: I read about this as a cure for vertigo, since in natural health circles people believe that the reason for vertigo is an inability to digest protein. It works supremely well for vertigo and I eat these chewable things by the handful but it’s also occurred to me that botox IS a protein and protease might sop some of it up. In the meantime, I have no idea if I have a digestive system at all since the toxin could have shut down some part of my system, so it also helps just to break down and use the nutrition you are ingesting.

MAGNESIUM: Really,really helping with the shocks, twitches and tremors. I use a big handful of magenesium oil on my skin and it usually stops all the sparks within at least an hour.

I am also taking doxycycline because at one point I thought I had Lyme Disease. Antibiotics will not kill the “bug” of botox because there is no bug, just the toxin. However antibiotics have really helped me for some reason ( not totally better, but clearer in the head) so I think maybe there might be some infection going on with me  too — probably because my entire internal system is sluggish and my lymphatic system is completely buried in bad debris. I figure if you are feeling really badly it’s not an unsafe thing to try.

Anyone else?

Recommended reading

Hi all
Since I’ve been unwell over the last year or so I’ve read a number of different books on health and most recently I’ve started reading Why is my brain not working? by Datis Kharrazian. I think it has some very good suggestions to help us with many of the symptoms that we have all experienced. It talks a lot of about blood sugar imbalances, stress, adrenals, inflammation and how these things effect the brain. Also poor circulation and blood flow to the brain. My hands and feel are always cold which are symptoms of poor circulation which probably also effecting my brain. For poor brain oxygenation he recommends a number of botanical compounds including huperzine which I’ve read of other people taking on this forum. He talks a lot about gluten sensitivities and nervous system disorders and the gut brain axis and diet and herbs for healing leaky gut. He warns against heavy metal chelation if you have a leaky blood brain barrier. I know some people have considered having mercury fillings removed, this is dangerous if your blood brain barrier is compromised and can lead to further inflammation and brain degeneration. He recommends a number of herbs to dampen neuro inflammation including resveratrol, curcumin and a number of others. He takes these himself as a precautionary measure. I’m only half way through but this is by far the best book I’ve read so far. Also there are a number of practitioners that he recommends that may be able to help. I’m going to re-read it and apply many of the suggestions.

Please Update Your Profile

Cameron has been working on the registration process and also member profiles.

You will have noticed that when you logon it takes you to your profile page. Next time you visit the site please take the time to update your information on this page. In the ‘Other’ section of your profile please also include the date that you updated your profile so that members can see how current your symptom update is.

This is where it gets a bit tricky. When you create a new post you can select the symptom ‘tags’ to the right hand side. These should be used to display symptoms that you are feeling at the time of your post – these selections will not effect your profile symptoms. When you initially register or when you update your profile please use the ‘Biographical Data’ area to list the symptoms that you had when you initially registered. So in summary:

‘Biographical Data’ in your Profile – Use this to list symptoms at time of registration – this lets people know what initially brought you to the site.

Your ‘Profile’ symptoms – Will change over time so that people can see what symptoms you are currently dealing with – remember to place the date of your update in the ‘other’ text box (along with any other symptoms you are experiencing that are not listed in the checkboxes).

Your ‘New Post’ tags – To the right of the screen when adding a new post. Specifically to list symptoms that you are feeling at the time of your post and are probably the reason for making your new post.

As an example please go to the member area and select ‘Annette’. You will then see the information that is displayed publicly once you complete your profile. At anytime you can update your profile details when you logon to the site.

Hopefully this info will allow members to look up other members to see what symptoms they are experiencing now and also see symptoms that initially brought them to the site.

Please Manage Your Own Subscriptions

The following instructions will assist you to cancel any subscriptions.

To cancel email notifications for new posts on the site:

From the home page click on ‘Botox Support Community’ in the top left corner. The drop box will reveal ‘Dashboard’ – click on this.
When the Dashboard is displayed on the left hand side there is ‘Subscribe2’ near the bottom of the list. Click on this. When on the Subscribe2 page there will be a statement – ‘Automatically subscribe me to newly created categories’ select ‘NO’ – then scroll down to the bottom of the page and ‘update preferences. This will stop all emails for any new posts.

To cancel email notifications for additional comments made to posts that you have commented on:

When you initially comment on a post if you don’t want email notifications of additional comments after you have commented there is a tick box under the ‘post comment’ box that is next to ‘Notify me of follow up comments via email’ – click on this tick box to remove the tick (it is automatically selected when you comment so you need to remove this prior to clicking on the ‘post comment’). This will mean that even though you have commented you wont receive any emails advising that more people have commented on this post.

We unfortunately cannot keep up with the requests of people asking us to manage their subscriptions. This is the individuals responsibility.

Hyperbaric Oxygen Therapy

Chgofit16 has suggested to start a thread on the results from this treatment – this is a great idea!

Chgofit16 posted her first results:

I was going to wait until a full week to report back. I will report weekly.
My body pain is improving but I have had had side effects.

1 treatment: Anxiety which I haven’t had since the onset of this. Some shooting pain in my breast and urgency to urinate. Full ears
2-okay fullness in ears
3-ears feel better,woke up with bad neck pain which I haven’t had in months. Is it the treatment or just how this stuff is?
4- neck pain is a little better,woke up with aniety at 3am and continued all day. Called the doctor she wants me to continue. Feels it is part of the healing process. Also some itching which had been a problem since the onset.
5. Anxiety gone, itching is slight, overall body pain is inproving. Haven’t used a pain patch since day one.
6-
Will keep you posted. I feel this is my last hope I have tried everything else.
I asked the site if the could put this in the helpful hints area to make easier to find.
Lisa if you go, please keep me posted. I feel it is to early to know if it is really helping I have done other things that I felt helped, that as it continuesd I ended up in worse shape.

Anyone else who is trying this treatment please share your results.

What Tests to Request from Your Doctor

After you’ve realized that your nerve-related problems are due to your btx injections, which tests should you ask for? And are any especially helpful and informative? These are tests that doctors can offer in clinic or hospital/medical center settings, so that you can get a more credible and accurate diagnosis. In this case I’m NOT talking about “alternative” tests, I’m talking about tests that will build your case and credibility in the eyes of the doctors.

Thus far I’ve had (and all were OK)

  • Blood and urine tests – these seem to be the standard set as well as thyroid functioning, but are there others that the doc might not normally request?
  • CT scan (brain)
  • MRI (brain)
  • EEG (brain)
  • Basic tests of hearing (range of beeping noises through the ears and the bone near the ear)

I was also going to look into an ENG (tests of eye movements, etc. related to ear)

What else? My neurologist basically said to me “Btx doesn’t cause the things that you say you’re experiencing. But we can do any test that you want.” So I have to be my own doctor here, as we pretty much all do.

Nutritional Balancing Program

Firstly Cameron and I would like to say that this site is not-for-profit. If we hear about something that members feel that they have gained benefits from we are happy to share this with everyone. We have not personally tried the following program (not yet anyway!) and are not linked financially in anyway to this program but if you are interested the details are as follows:

Nutritional Balancing Program

Hair Analysis:

Nutritional Balancing Program:

I know several people who have tried this program and feel that their bodies have felt definite improvement. If you do try this program please let the members on the site know if you feel this has been beneficial.

If you are interested in learning more about this program please email Susan – susan@avivaallergy.com

Iatrogenic Botulism – Advice for those who find this website immediately after onset of symptoms

Hi – I received an email from Maria with the following information:

I’m trying to gather articles and found some very interesting information. Our condition is called iatrogenic botulism. There are several reports describing this.
I see that same investigation and treatment is made in such cases:
1) Serum toxin level (mouse test). Two mice are sprayed with your blood. The mouse that received anti-toxin survive. This is the only way to measure the toxin into your body.
2) EMG
Almost all patients have received anti-toxin as the only means of preventing more severe symptoms in the future. In one case, it’s been more than 2 months before the antitoxin was given. It should be given as soon as possible! We need to write advice for those who find our web site immediately after onset of symptoms in the new topic.
1) Go to the hospital and ask for the mouse test,
2) Anti-Toxin must be given
3) EMG
4) Condition is called iatrogenic botulism.

Maria is also going to complete a study on this – I hope that all of the members on the site will be able to contribute information to Maria when she requires it. Thanks so much for this Maria – this is going to help many people in the future to avoid the terrible symptoms we have had to deal with.

What do you suggest for insomnia?

What medicines work for your insomnia? I am already taking amitriptyline (a sedating antidepressant), which helps … but I also am now taking lorezapam (ativan). It doesn’t help that much. I was taking clonezepam (klonopin), but it made me tired ALL THE TIME. Ambien didn’t help me at all — I didn’t ever fall asleep after taking it. Have any of you had success on a particular medication? I fall asleep, but then wake up about 3 or 4 hours later. Thank you!