Vaccine Alert issued by Toronto Public Health.

Invasive Meningococcal C Outbreak among Men Who Have Sex with Men (MSM) in New York City: Recommendations for Travel

April 18, 2013: An ongoing outbreak of invasive meningococcal disease serogroup C has been occurring among men who have sex with men in New York City. Since 2010, there have been 22 cases reported: one in 2010, four in 2011, 13 in 2012 and four in 2013. Seven men have died, including three of the last five cases. The age range of cases is 21 to 59 years, and 50% have been Black, 27% White, and 18% Hispanic (any race). Twelve cases were HIV-infected, of which five have died. Cases of meningitis have also been reported in MSM in California.

The New York City Department of Health is recommending meningococcal vaccine to the following New York City residents:

• All HIV-infected MSM
• MSM, regardless of HIV status, who regularly have close or intimate contact with other men met either through an online website, digital application (“app”), or at a bar or party 

The Public Health Agency of Canada (PHAC) is not aware of any cases among Canadians related to this outbreak. Toronto Public Health has also not seen any cases related to this outbreak. Please call Toronto Public Health if you think you have a suspect or confirmed case of meningococcal disease to TPH's surveillance unit at 416-392-7411 during work hours (8:30am to 4:30pm, Monday to Friday) or at 3-1-1 after hours.

The National Advisory Committee on Immunization (NACI) recommends use of the quadrivalent meningococcal conjugate vaccine (Men ACYW-135 – Menactra or Menveo) to travelers where the risk of meningococcal transmission is high. NACI also says vaccination should be considered for individuals with HIV.

Toronto Public Health recommends physicians offer meningococcal conjugate ACYW-135 vaccine to MSM who are planning to travel to New York City and who are either HIV-infected or who may have close or intimate contact with other men met either through an online website, digital application (“app”), or at a bar or party in New York City. Note that this vaccine is not publicly funded for this group.

More information:

Toronto Public Health Immunization Information Centre:

416-392-1250 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

New York City Department of Health alerts. 

Canadian Immunization Guide on meningococcal vaccines.

Being an HIV advocate means straddling two different, diametrically opposed worlds.  Engaging in battle on two fronts, much like a war, I advocate for both HIV+ (us) and HIV- people (them).  Each battle has it's own challenges and rewards, some of them immediate but most of them are unknown or more long-term in the rewards. 

It is sometimes hard to juggle two hats - fighting for those with HIV and fighting for those who do not have HIV.  Both groups of people have their separate challenges.  

People who perceive themselves to be HIV-negative (one in five do not know they have HIV) often believe they are not at risk for HIV.  HIV is something from the 80’s, they say.  I can just take a pill and be fine, they say.  I am not someone who could get HIV, they say.  But all of these assumptions are false, based on ignorance or they chose to keep their head in the sand.  HIV is something that happens to “those people” (you can fill in the blank here with gay, sex worker, drug addict, homeless person, etc.) and they go to extreme mental limits to make sure nobody thinks they are one of “those people”.  Ignorance is only bliss until you get HIV, then... 

...then you become one of “us”.  All of a sudden all of your assumptions go out the door.  You are pulled roughly and violently into the world of HIV, your head no longer in the sand.  Like a grim rebirth, at the moment of your diagnosis you become someone else.  Your soul is laid bare, your very self begins to crumble in upon itself, and microscopically you begin to become repaired, each new particle of yourself knitting itself into a new Phoenix.  It may take years to rise up from the ashes of your old self.  It may happen immediately for the few and for the determined and for the strong.  

When you as an “us” becomes the new “us”, you become what was known to your former self as “them”.  And a funny thing happens...one day you realize the barrier you erected between “you” and “them”, though it is a very tall and very thick wall...that wall is composed of sand.  Being diagnosed with HIV is a huge tsunami, impossible to ignore, definitive in its power to transform. 

Advocating for myself as a person with HIV means I want to ensure I am safe, protected, and that I can always get my medications.  I definitely see the need for eliminating HIV criminalization, expanding access to lifesaving medications, and for reducing the still-awful stigma of this virus.   Becoming someone with HIV has added whole new dimensions to my life that were not there before, words such as “disability”, “Ryan White”, “adherence”, and “deductible”.  I suddenly pay very close attention to the fine print of any insurance plans I am able to choose from at work.  For me, I always look to see what kind of prescription coverage is offered, as that is my absolute main concern.  At one place I worked at for years, our HR decided to change insurance companies.  My monthly out of pocket expense for my meds shot up from $100 to $400 a month.  I paid more for my medicine than I did for my rent.  Needless to say, I had to go back on Ryan White to afford them, which always makes me feel guilty because there is a waiting list for ADAP in most states. 

Part of me finds it so much easier to fight on the side of those with HIV.  It seems easier to me to fight for more funding for HIV, to help people newly diagnosed just feels like more of a good deed.  It is definitely more appreciated.  I get more immediate satisfaction by being a resource for the newly infected. 

But the other part of me, the part that drives me the most, is the part of me that wants to fight for others, “them”...those who do not have HIV.  I want to do everything possible, shouting from the rooftops at the ignorance and complacency that causes HIV infections to rise every year.  I want more than anything for people to stop doing the things that are dangerous.  I want those who still have a choice to have the options available to them to be able to make a choice.  I guess you could very well call me an advocate for HIV negativity. 

Advocating on behalf of those who perceive themselves to be HIV- always feels like I am alone in a stadium, shouting loudly to the empty seats.  People who think they are HIV- close up when you say “HIV”.  The word conjures up the image of sex, gay or straight.  It conjures up images of needles stuck in someone’s arm.  It conjures up images of starving African children with their famine-swollen stomachs and their skeletal faces.  It forces someone to come face-to-face with mortality, another subject to be studiously avoided at all costs.  

The silence of the HIV-, especially in gay males, is deafening.  It is much easier for someone to convince themself they are not one of “those” people than it is to admit to themselves how many times they had unprotected sex last year.  But if you mention HIV to them, like a key unlocking a door, they remember that night they had sex without a condom...but wait, “he told me he was clean, so I don’t have to worry about THAT time”...or that other time...or that other time.  Like the emperor and his new clothes, they convince themselves they too are fine, nothing to worry about, now stop talking to me about HIV. Let’s talk about Lady Gaga instead.  

This is an edited version of an article originally appeared on Jason’s own blog, Embracing Pozitivity, here.  

About the author: I am 38, gay male from Knoxville, TN who is not ashamed of my HIV+ status. I am optimism personified. I am strength realized. I am just me. 

Website: embacingpozitivity.blogspot.com.Twitter @jjemcdonald

It’s taken me a long two weeks to get back on my feet post-Israel trip. Since then it’s been cold and rainy here, so it’s beginning to feel like all that sunny freedom from SADS has disappeared…(Technically it’s SAD, but it just doesn’t seem right unless I make sad plural.)

Just last Saturday I sent a message to a friend living in St. Martin for the winter. I was at my wit’s end, in "just get me the fuck out of here" mode.  But after Margaret Thatcher’s death I gave mother nature a bit of a break. She’s merely trying to detox herself from the shock of Thatcher’s body returning to earth. Even she doesn’t want her back, it seems.

Today there is some sun, and suddenly the veil of fogginess and fatigue begins to lift. This is why I start planning getting away a year in advance. For me it’s no longer about glamour, it’s about survival. Had I been around for March I either would have jumped off my balcony and/or killed someone. No doubt that person I’d kill would be a TTC passenger taking up two seats with his or her backpack during rush hour.

It was a great trip. The guy I was shtumping turned out to be an over aged gay hipster artist who lives in the moment and has no real attachments. That translates into having a great time when together, forgotten about when not, and tells me he doesn’t believe in long distance communication when I said I’ll give you my email and stay in touch.  After he said that I never saw him again. I wanted to get to know people so that when I return I’d know people.

I did make this objective of getting to know others there. I call this my introductory trip to Israel. There will be many more to come. Historically, I’ve picked a city and made it kind of my second home. When I lived in Winnipeg, I did that in Toronto. I had so many meetings out there (pre-internet days) and a social network that one day it became impossible to have to return to Winnipeg.

Both Amsterdam and New York were “second homes” for me. During my stay in Tel Aviv I knew that this was now becoming my second home. This time with a twist, that this is the homeland of spiritual ancestries, and a tribal connection to the land and people.

This month was a time for reflection. The past year I had let go to the foundations of what I need in life. I became so determined to do stand up that I’d become sick this last winter and part of the summer. I’d get up maybe four days in a row and then get knocked down with something. In fact right before leaving I got sick and had to cancel about three gigs. I’m so tired of getting smacked down all the time. I need my health.

That means focusing on storytelling performance and putting together the one hour long solo show that I’ve thought about for the last few years. I’ll still do some stand up but only when I have things I really want to try out.

In Israel there were times when I longed for the interpersonal connections I have at home. It was a Dorothy moment. If I just click my heels three times I have it all right in front of me, even in Tel Aviv.

The third part is my Judaism. There is this essence to the community, culture, language and another kind of connectedness.

Lastly, I need to get back to the gym. Nothing like seeing so many hot guys to get one motivated to getting back into some form of shape and introduce plain old-fashioned cardio in an internet-induced sedentary lifestyle.

For the one hour show, I want to be able to workshop it at The Flying Beaver by late fall or early winter of next year.  Eventually I’d like to do this solo show in Tel Aviv (very long term goal) as there will be some topics in there not talked about so openly in Israeli gay society.

Provided I can pull a couple various elements together for returning to Tel Avi, I’d like to return for three months. I’d also bring Hildy with me.

 My friend asked my last time, “I want to hear about all the hot guys you did!” I replied, “I’m not going to talk numbers (I only diddled 3 guys but we’ll keep that between us) but I did receive over 70 messages in my Atraf profile, the local sex site. 

Neuropathy is one of those diseases that affects millions of people (20 million in the USA alone) and between 30% and 40% of people living with HIV and yet if you ask 100 people on the street what it is, the vast majority of them won’t have a clue what you’re talking about. This article is meant to establish some facts and clear up some misunderstandings about the disease, especially in relation to people with HIV.

What is neuropathy?

Simply put, neuropathy is damage to the nervous system. The nerves have been attacked or compromised for one reason or another. Very often the protective layers surrounding the nerves themselves or the nerve cells have been destroyed or eroded and this leads to what you could term, ‘short circuits’ in the nervous system. This means that signals that normally travel between the brain, spine and the organs and limbs to enable normal function, are disrupted, causing both erroneous instructions and sometimes strange and painful symptoms. Neuropathy is categorised as a disease of the nerves, so it’s not just a random happening caused by an unexpected accident (except in those cases where physical injury is the obvious cause).

I’ve seen lots of sites on the internet about neuropathy caused by diabetes, or as a result of chemotherapy: is my HIV-related neuropathy the same, or totally different?

That’s true, you’ll see many more sites about diabetes-related neuropathy than anything else because diabetes is the commonest cause, especially in the Western world. There are however, over 100 different categories of neuropathy and over 100 different causes but that doesn’t mean that the neuropathic symptoms you may be feeling are generally any different to those brought about by other causes. Many things will bring about nerve damage but once you have neuropathy, you’re sharing symptoms with about 90% of all other neuropathy patients.

I don’t understand why people with HIV get neuropathy?

Don’t worry, you’re not alone. At first it was thought that people who had been on older HIV drugs (d-Drugs, Kivexa, Videx and others) were more likely to suffer nerve damage as a result. That is certainly still true in places like sub-Saharan Africa where older HIV meds are still distributed because they are cheaper. The neuropathy cases there are much higher than in the rest of the world. However, because people living with HIV are still getting neuropathy, despite being on modern combinations with no record of causing nerve damage, scientists began to look into why that was and have established that the virus is perfectly capable of attacking the nervous system on its own and without outside help. However, it’s important to remember that people with HIV can still be diabetic, or get cancer, or have alcohol problems, or any of the many other contributors to neuropathy. Finding the exact cause of your neuropathy can often be tricky but in the end, the cause is not as important as reducing the effects of the disease on your daily life.

I saw an advertisement from a local clinic that claims to be able to cure neuropathy for good: is that possible?

No, unfortunately, nerve damage cannot be cured at the moment. There are cases where nerve damage is caused by injury and if the surgeons are quick enough, they may be able to repair the damage at the site of the break but in almost all other cases, when the nerve damage is established, it is virtually impossible to repair. You can assume then that the clinic is exaggerating at best. These clinics are in the business of making money and unfortunately they have few scruples about promising people the impossible to boost their bank accounts.

However, what clinics, doctors, specialists and neurologists may be able to do is reduce the effects of the symptoms but that is entirely different to achieving a cure.

I’ve been told that the numbness, burning, tingling and pain will go away by itself; is this true?

This is where neuropathy can confound even the experts. Sometimes, if you haven’t had the symptoms for very long, they may gradually disappear, possibly due to the body being able to repair the nerve damage itself. However, in these cases, the nerve damage was probably only slight to begin with. In the vast majority of cases, if you have had neuropathic symptoms for more than 6 months to a year, you’re more than likely to be stuck with them and there’s a good chance that they will be progressive and get worse. At that point, you will need some help to cope with the effects and keep them under control. 

My neurologist says that my neuropathy probably comes from a back injury; is this possible?

Oh yes; it’s mainly called radiculopathy and is one of the many causes of neuropathy. It occurs when a nerve becomes trapped between discs and vertebrae (in the hands, it may result in carpal tunnel syndrome) and this is quite common. There is some light at the end of the tunnel for radiculopathy patients in that the trapped nerve may be able to be surgically ‘released’ thus relieving the pressure and the symptoms. However, the longer a nerve is damaged due to impaction, the less likely it will recover fully. A study in the British Medical Journal, showed that three quarters of back pain sufferers who receive no help will have pain or disability a year later, so the quicker you get your condition checked out the better.

I’ve been told that neuropathy is a natural result of aging; is this correct?

This is by no means true. Many neuropathy sufferers are older people but it affects people of all ages, especially in cases of diabetes, chemotherapy, or HIV-related neuropathy. Many African HIV positive children suffer agonies from neuropathy thanks to being supplied with older HIV drugs and neuropathy amongst Western children is unfortunately more common than you think.

My doctor told me I just have to learn to live with it.

Personally, I’d change doctor if I was told that but to be brutal, it’s partly true at the moment because there’s no cure for the condition. However, there are series of about 10 medicinal treatments (plus many alternative treatments) which you can work through until one of them reduces the symptoms for you. That’s not having to live with it; that’s finding the best current way of making your life easier and you shouldn’t accept anything less.

Lots of people I know have different symptoms and my pain isn’t the same as theirs. Have I got something else?

Just like the causes and types of neuropathy, the symptoms can vary widely but generally fall under one of the following:

• Numbness, tingling, burning sensation, pins and needles, twitching (even restless leg syndrome is a form of neuropathy), loss of balance and sharp, severe pains. These are most often felt in the feet (soles of your feet), legs to your knees, hands and arms but can appear on other body parts as well.

If you have what they call ‘Autonomic neuropathy’ then various involuntary functions of the body may be compromised (breathing, digestive functions and sexual performance amongst others) and bring further misery.

So just because your symptoms are different doesn’t remove the possibility of neuropathy. Personally, I believe the symptoms are pretty much unique to the disease and you know it if you’ve got it but both the degree of discomfort and the range of symptoms can certainly vary.

My doctor told me I have Idiopathic Neuropathy; what on earth does that mean?

Actually it means very little. Idiopathic neuropathy is not a disease on its own, or even a form of neuropathy; it just means the doctors can’t identify the cause of your problems. Many people leave the doctor’s appointment feeling both dissatisfied and perhaps even disbelieved if they are told their neuropathy is idiopathic and it’s the doctor’s job to reassure you that your problem is no less serious for it. Up to 40% of all neuropathy patients have idiopathic neuropathy but that says more about the efficiency of the testing systems than the severity of the symptoms. With causal diseases like diabetes, or HIV the doctor/ specialist/neurologist will probably make a reasonable estimate that the cause is linked to those external problems. Similarly, if you have undergone chemotherapy after cancer, that is a common cause of neuropathy but in many cases, the diagnosis is made on the basis of your symptoms, which are so clear that there is little dispute as to what you have. If you tell your story and describe your symptoms, you should never feel that you’re exaggerating, or being underestimated. The cause is not the end of the matter; the treatment that follows the diagnosis is what’s vital for you.

Although, I’ve worked my way through the medication lists, my neuropathy is now being controlled by opiates. The problem is that I have a feeling they’re not working as well any more.

This is a problem that many people eventually face. They work their way through this, that and the other medication and nothing has worked for long, if at all. They may also have reacted badly to the side effects of certain drugs and end up on opioids just to control the pain. The problem with opioids is that eventually, you need more of the same to achieve the same pain relief. This can be a horrifying scenario for many neuropathy patients and it requires careful and thorough monitoring by both your specialist and your home doctor. You should never be issued an opioid prescription and be left to get on with it; they’re not M&Ms. They are powerful and potentially addictive drugs which need careful handling. If you are in the position where your current opioid seems to be losing its power, then consult your doctor straight away; don’t wait until you are totally dependent and don’t ever try to go cold turkey. With careful handling, you should be able to move onto another sort of opioid but the after-care and medical control is vital.

Why am I being given antidepressants for my neuropathy?

That’s a very good question and one which every neuropathy patient should ask their doctor. Almost as far back as the Second World War, there has been an accepted course of treatment for neuropathy and there are roughly 10 drugs which can be tried until something works (or doesn’t).

1. You start with ‘normal’ analgesics, most of which you can buy over the counter
2. Then you move on to anti-depressants (either Selective Serotonin Reuptake Inhibitors (SSRIs) or Serotonin Norepinephrine Reuptake Inhibitors (SNRIs)). Those names may not mean much to you but the most common antidepressants used for nerve problems are amitriptyline and nortriptyline (Aventyl, Pamelor), which were originally developed to treat depression.In theory these can reduce pain by interfering with chemical processes in the brain and spinal cord. In the second group of antidepressants (SNRIs) you will often see duloxetine (Cymbalta) prescribed but there are others in both groups. The problem is the potential for side effects (nausea, drowsiness, dizziness, constipation and lack of appetite) and many people find these worse than the neuropathy symptoms themselves.
3. If the anti-depressants haven’t worked or been effective enough (and unfortunately this is true for most neuropathy patients) then you will probably be moved on to anti-convulsants, or anti-seizure medications (drugs meant for epilepsy). These include; gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) but once again, the side effects can be a big problem. These drugs work on the sodium channels and neural signals in the brain and spinal cord. If you’re having problems with a drug, don’t keep going because you don’t want to complain; discuss it with your doctor. By the way, Pfizer, the makers of Lyrica have withdrawn their own promotion of the drug for diabetes and HIV-related neuropathy because a) it has been proved to be largely ineffective and b) they were being confronted with more and more court cases thanks to the side effects. When a major drug company withdraws positive advice for its own money-spinner, you should take note, despite what your doctor may say.
4. If the anti-convulsants haven’t worked then your doctor may well ask you to try a number of other treatments before moving on to the serious stuff. These include lidocaine patches, capsaicin patches (based on chili pepper extracts); various supplements such as Acetyl-L-Carnitine and Alpha Lipoic Acid (there are many more) and even yoga, acupuncture and courses of exercise. Even marijuana is being recognised as being an effective neuropathic pain suppressor (depending on the laws of your area). These treatments should also not be taken lightly however, especially the patches which can cause painful burning if not applied properly.
5. Finally, if all else has failed, you may be put onto drugs from the opioid family such as Tramadol, Oxycontin, Tapentadol and morphine. The question above talks about how these should be approached and it cannot be overstated that you need help both beginning these drugs and coming off them if you need to. Constant monitoring of progress is essential to avoid addiction and unnecessary suffering from side effects. Your doctor should do this but if possible, get your specialist to double check; you should never be allowed to plot your own course through opioids. They will however, work if used properly but remember, if your pain is much less, it doesn’t mean that your neuropathy is being cured, it just means that the symptoms are being suppressed by the drugs. 

I’m at the end of my tether. I’ve tried everything and nothing makes the pain away completely. What can I do?

I wish that I could offer you more than platitudes but at this moment in time, the drug companies are working very hard to develop new treatments for neuropathy. They have finally woken up and recognised the scale of the problem and have realised that using drugs meant for other diseases is like putting a plaster onto a severe injury; it can only be a temporary and unsatisfactory solution. Furthermore, they have realised that finding effective treatments for neuropathy will be a huge money-spinner and without being cynical, that’s their bottom line. Consequently, extensive research is being done at molecular, cellular and even at DNA level to discover how nerve pain actually works and what can be done about it. The bad news is that it will be some years before anything gets onto the chemists’ shelves and is available for most patients. Quite rightly, all new treatments have to go through assessment procedures, trials and approval from medical authorities before they can be deemed safe for the public. It’s frustrating but better that than serious mistakes. 

In the meantime, if all the accepted treatments have failed, you do unfortunately have to learn to live with neuropathy and the way it’s affecting your life, in the best way you can but you’re not alone and there are many strategies which you can try to relieve your symptoms. Following the links below will provide you with lots of information to do just that.

What you need to remember is that everybody reacts differently to current neuropathy treatments; what may work for one will not work for another. You need to plough your way through the minefield until you find a single drug, or combination of drugs, supplements and alternative treatments that will help you. If, despite all your best efforts, like the questioner above, you’re still plagued by almost unbearable symptoms, you need to get support from your specialists, your doctors, your families and your friends. You may not look ill from the outside but you need to convince people that you have a serious problem and that occasionally you need a listening ear, or a hug or a good chat to unburden yourself. You may be surprised; people may not be able to feel your pain but they can be amazingly empathetic at times. Neuropathy support groups and forums may help fill in the gaps. 

Further information: (there are many more sites – just Google and see) 

http://www.neuropathy.org/ 

http://neurotalk.psychcentral.com/forumdisplay.php?f=20 

www.neuropathyandhiv.blogspot.com 

http://neuropathyawareness.blogspot.nl/2011/11/living-life-with-peripheral-neuropathy.html 

http://www.neuropathytreatment.com/