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Lyme Disease Meningitis - Cirquerider Down - Page 6

post #151 of 212

Just saw this and as so many others have stated Tom, heal well.  Your inner strength and best attitude you can muster are shining through.

post #152 of 212
Thread Starter 

Thanks again for all the support.  I have come a long way physically, and I look forward to a full recovery.  I'm not very patient about things like this and find it hard to accept limitations and the time it takes to recover and heal. 

post #153 of 212

Hang in there Tom.  This too shall pass.  But keep communicating with those doctors to be your own best advocate.

post #154 of 212
Thread Starter 

Sunday was a big step forward for me.  I awoke with noticiably more strength in the core and a lot less discomfort.  The neurological symtoms seem to persist and heal in spurts, and this was a good day that seems to have carried over this week.

post #155 of 212

It's good to hear about your breakthrough!    

post #156 of 212

     That's great! I've been following this thread silently...

 

    zenny

post #157 of 212

Good news! Hang in there.

post #158 of 212
Quote:
Originally Posted by Cirquerider View Post
 

Sunday was a big step forward for me.  I awoke with noticiably more strength in the core and a lot less discomfort.  The neurological symtoms seem to persist and heal in spurts, and this was a good day that seems to have carried over this week.

 

Great news. 

Keep at it!
post #159 of 212

I hope the Steelers debacle didn't set you back. :nono: It's good to hear you are progressing. We have about 3 months before the season really begins around here so there is still time. It has to be frustrating because it doesn't seem that you can do much to speed things along. Try to keep a good attitude and know we're all pulling for you.

post #160 of 212

Wow Tom, I missed this thread.  Hang in there----I've seen a friend recover from Lyme and ski in the Olympics.  Those neuro things sure are slow though....I admire your patience.

 

Newfydog III passed on last year.  I offer you this to brighten your day:

post #161 of 212
Thread Starter 

I just went back and re-read the first two posts I made in this thread.  If you want to know how far I've come, take a look at those posts when I suffered double vision and numb hands.

 

Rob, I look forward to skiing with the crew in the Laural Highlands and Blue Knob.

 

Newfy, sorry for your loss last March.  Looks like you have a new friend. Be sure to post him up in the Dog Picture Thread.

post #162 of 212
Quote:
Originally Posted by Cirquerider View Post
 

I just went back and re-read the first two posts I made in this thread.  If you want to know how far I've come, take a look at those posts when I suffered double vision and numb hands.

 

I don't do any better texting or trying to read texts on my cell phone and I'm fully healthy for a mid life crisis casualty.

post #163 of 212

Great.  Wonderful to hear.

post #164 of 212

Just stumbled across this and thought of how much we've discussed Lyme Ticks not being a concern in some regions but it looks like that is changing a bit. 

http://news.kron4.com/news/stanford-study-ticks-carrying-lyme-disease-a-bay-area-problem/

post #165 of 212
Thread Starter 

It's a timely warning as Lymes is frequently contracted in the spring as tick nymphs, and people become more active outdoors.  It's worth taking precautions.  I lived with the infection a month before I was diagnosed, and it took another 3-4 months to fully recover after starting treatment.  My hospitalization and treatment totaled over $74,000 last year, and ultimately was a key factor in a job loss. Fortunately a full recovery for me, but so many people never get a diagnosis or proper treatment.   

 

Lymes can be prevented.  Do that, because you don't want this. 

If you get it, and are diagnosed and treated, you can be fully cured.  It's gonna be expensive and there will be plenty of days you wonder if it will ever be the same.

post #166 of 212
Quote:
Originally Posted by Trekchick View Post

Just stumbled across this and thought of how much we've discussed Lyme Ticks not being a concern in some regions but it looks like that is changing a bit. 
http://news.kron4.com/news/stanford-study-ticks-carrying-lyme-disease-a-bay-area-problem/

Get this:
Quote:
A Lyme disease vaccine is no longer available. The vaccine manufacturer discontinued production in 2002, citing insufficient consumer demand. Protection provided by this vaccine diminishes over time. Therefore, if you received the Lyme disease vaccine before 2002, you are probably no longer protected against Lyme disease.

You would have thought there would be enough demand, at least on the East coast, to keep this in production! Of course, I never got it, and I realize it was because we rarely took walks in the woods. Plus I was only aware there was such a vaccine for my dogs.. Who got it.
post #167 of 212

I've had Lyme and got treated.

 

You are going to experience some residual from time to time (in both of our cases we got treated earlier and effectively).  No all are that lucky.

 

Prevention is the cure.

 

Good site to start to understand is www.canlyme.com even though it is Canadian there is a wealth of information and references.

 

C...glad you are doing better.  Lucky I wasn't out of pocket other than the testing done in the USA.  Currently treat in Canada is next to impossible.

 

Regards,

post #168 of 212
Thread Starter 

Thanks for your help and encouragement when it was needed.  I still get muscles stuck in my face once in a while, and have not fully recovered abdominal strength,  Still I look at all the people posting in those internet forums about chronic Lymes and life-long pain and disability and figure I got off pretty easy.

post #169 of 212

I'm using permathin on all my outdoor clothing this summer. Super paranoid about this. Glad you're getting better.

post #170 of 212

Just saw this story of Angeli.  She is quite the competitor.  Holy crap she can get some air, but she talks of long term effects and the impact of Lyme disease on her ability to compete. 

http://xgames.espn.go.com/skiing/article/10347140/lyme-disease-stop-angeli-vanlaanen-making-olympic-debut

post #171 of 212
Thread Starter 

Thanks Tricia!  Interesting story, and I can relate to the frustration she must have experienced.  There must be hundreds or thousands like her that have no clue what it is that affects them.

post #172 of 212

Hola Amigo, hang in there!!

post #173 of 212
Quote:
Originally Posted by snoseek View Post
 

I'm using permathin on all my outdoor clothing this summer. Super paranoid about this. Glad you're getting better.

 

 

I think you'd be better served, just being very vigilant and inspecting yourself often.  I found one on me last summer,  while I was on an airplane returning from DC.

post #174 of 212

Its too bad the vaccine against Lyme disease is no longer available but the lack of demand is not surprising given what appears to me to be a pattern of denial among the medical profession. Its my impression that many physicians may not, for some reason, regard Lyme disease as a genuine thing. We know quite a few people who have contracted it and, in most cases, it seems as if they had to shop around for a doctor willing to take it seriously and test and treat it. The test that physicians use to screen for the disease is reputedly the one that is most unreliable in detecting Lyme. I've heard quite a few accounts of people who had to be tested repeatedly and plead with their doctor to be tested with the more accurate test. 

 

Its odd really, given that the incidence of Lyme is reported to be high here in New Hampshire, that doctors seem to have such an inability or unwillingness to deal with it. My own physician has repeatedly brushed aside the possibility that I might have been exposed to Lyme Disease even though I routinely remove them after being out in the woods.. Only when I had removed a tick that had actually left part of its body attached to my skin was he willing to prescribe the Western blot test that is said to be somewhat reliable. The propylactic treatment that he prescribed was, if memory serves me, one or two pills of some kind of antibiotic. Fortunately the test was negative and I seem not to have contracted the disease but it seems to me to be some kind of miracle given my high exposure to tick bites. In late Spring and early summer especially I pull ticks off me practically every day. Lately we have been getting ticks even in the Fall.The smaller deer ticks are especially difficult to detect.

 

The doctors seem to have no concept of what it might actually be like to spend time out in the woods. My doctor told me I should walk around with long pants tucked into my socks and long sleeves buttoned up for example. Aside from the discomfort of being so fully clothed in hot weather, this just doesn't seem to work. Ticks get on your clothing and move around seeking an opening. They'll hang on for quite a while. I've discovered ticks on me while sleeping in bed long after a visual inspection that presumably had piggybacked a ride on some article of clothing. The most effective deterrent seems to be frequent tick checks on your body. They tend to be more or less invisible on clothing, in folds of your socks or seams etc. Actually being able to feel them on the skin and see them is the most reliable and all that clothing just makes it less likely you will get them before they actually bite you and become lodged in your skin.

 

The other thing my doctor recommended was wearing some sort of battery powered device on my waist belt that apparently wafts some kind of insecticide about the body. Apparently there is such a device out there. I haven't actually used this but it just sounds absurd to me. Perhaps it helps to keep bugs away when you're out there strolling on the golf course but I can't see how the insecticide even lands on the body of someone energetically moving through the woods nevermind deterring ticks. Sprayed on insecticide doesn't seem to do much either as perspiration gets rid of it quickly. A little deet around the body does seem to help keep off the mosquitos but ticks are a lot hardier than that.

post #175 of 212

Oisin, I too spend lots of time in the woods in northern MA.  I get more ticks in my yard than in the woods, mostly because I don't spray with Deet for work in the yard, but coat myself when I go in the woods.  Give the Deet another try.

 

I agree, feeling deer ticks is easier if you have your skin exposed rather than if you are covered up. They do hop a ride and turn up much later somewhere on you when you least expect it.  I pick them off regularly too; it is my understanding that if you get them soon, you're probably ok.  

 

I've had one stay on long enough to leave that red circle around the bite.  I was scared silly so I demanded antibiotic treatment of my local doctor; it took tow docs to find one that would prescribe the antibiotics.  I got a two-week supply; that was years ago and I haven't had any further symptoms.  I can't remember whether I had a test; if I did then it came up negative and I demanded the antibiotics anyway and got them from the second doctor.  I'd remember if the test had been positive.

post #176 of 212
Quote:
Originally Posted by LiquidFeet View Post
 

Oisin, I too spend lots of time in the woods in northern MA.  I get more ticks in my yard than in the woods, mostly because I don't spray with Deet for work in the yard, but coat myself when I go in the woods.  Give the Deet another try.

 

I agree, feeling deer ticks is easier if you have your skin exposed rather than if you are covered up. They do hop a ride and turn up much later somewhere on you when you least expect it.  I pick them off regularly too; it is my understanding that if you get them soon, you're probably ok.  

 

I've had one stay on long enough to leave that red circle around the bite.  I was scared silly so I demanded antibiotic treatment of my local doctor; it took tow docs to find one that would prescribe the antibiotics.  I got a two-week supply; that was years ago and I haven't had any further symptoms.  I can't remember whether I had a test; if I did then it came up negative and I demanded the antibiotics anyway and got them from the second doctor.  I'd remember if the test had been positive.

I've thought that grassy areas and particularly forest/field margins and shrubby cut-over areas host more ticks than forest but maybe that is because they are favored habitat for mice and deer. You may be right about the Deet although it has its own health issues. I've had the "bulls eye" rash signs more often than I care to remember. Hopefully I have not had Lyme disease although in some people the symptoms may be slight and the effects long term so I worry. My point is that, unless you are one of those with pronounced and unmistakable symptoms you almost have to know that you have it and diagnose it yourself in order to get treatment. Even with pronounced symptoms I believe it is frequently misdiagnosed and treatment delayed.

 

So, in a sense, if you've had a terrible case of Lyme disease, been diagnosed, treated and recovered, you may consider yourself fortunate. It might have been worse.. 

post #177 of 212

I'll add another site again.  I have seen Dr. Murakami speak and he actually diagnosed a friend of mine (unfortunately to late, as he died (in 2005) of complications of Lyme 3 years after being bitten). I was diagnosed about 2/3 months after his death and was treated with 7 months of high dose antibiotics.  Luckily for the most part my body handled it well and I haven't yet noticed any residual effects (knock on wood).

 

http://www.murakamicentreforlyme.org/

 

This site also contains a wealth of information re: this illness.

 

Also here is the best method for removing ticks as they don't spit up their stomach into your bloodstream when you try and pull them (this is very bad as the bacteria has now been forced into your system if it is present)

 

 

DEET and proper checks are the best defense.

 

Besides the ticks there are other vectors in which Lyme can be contracted.

 

Spread the word...a good offense is the only defense currently for this illness and pray you never get it.  Some are lucky (Criquerider and I) and some aren't (from continued illness even after treatment to death).

 

If any one ever has any questions, please feel free to PM me on this matter.  I got support when I needed it, it is only fair that I provide it to someone else if they need it.

 

Edit was for typo and wording.


Edited by oldschoolskier - 2/24/14 at 2:40pm
post #178 of 212

We went from the harshest winter in decades to one day in the 60's and I've already found a tick.  Keep your eyes open.

 

 

Good article.

http://news.nationalgeographic.com/news/2014/02/140228-lyme-disease-borrelia-burgdorferi-deer-tick-science/

post #179 of 212
Thread Starter 

Thanks for the link.  Interesting article, and a timely warning.

post #180 of 212

As we are now in summer again and more at risk of Lyme.

 

Special Invitation — Live Webcast: Lyme Disease in Canada

The US Centers for Disease Control stunned the world in August 2013 by revising the number of Lyme disease cases occurring annually in the United States upwards from 30,000 to 300,000, Despite sharing the longest undefended border in the world with our American neighbour, the annual number of new cases of Lyme disease in Canada, last reported in 2011, was only 258. Although this number can’t possibly be remotely accurate, Health Canada has yet to revise its statistics or devise any meaningful way to address the coming epidemic. Within the next six years it is estimated that 80% of Canadians will be living in Lyme-endemic regions and the current response and lack of policy are unacceptable for Canadians.

 

“The failure of the agency to recognize the existence of the majority of Lyme cases in this country is increasingly placing the health of Canadians at risk,” says British Columbia-based journalist and speaker Vanessa Farnsworth, author of the recently published Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada.

Canada falls far behind other developed countries when it comes to adequate diagnosis and treatment for Lyme disease sufferers. The current state of affairs will be explored in a live two-hour webcast about Lyme disease in Canada led by Vanessa on June 23.

 

 

Watch webcast preview:

 

http://www.orchardtv.com/vanessafarnsworth

 

 

Vanessa will address research policy and procedures, as well as the testing, diagnosis and treatment Health Canada currently recommends for Lyme sufferers in Canada, many of whom abandon Medicare in their own country to seek treatment in the United States. The webcast will include a question and answer session with the studio audience, and on-line viewers will be able to send questions to Vanessa during the webcast via email.

 

Vanessa is touring Canada speaking about Lyme disease at a series of events in public libraries, bookstores, and in radio and television interviews and she uses all of these opportunities to accurately inform people about the current situation. Vanessa is not an activist or crusader, nor is she politically motivated, but she has battled Lyme for many years and is extremely knowledgeable about the personal, political and scientific aspects of this disease.

 

Anyone who has Lyme disease — or knows someone who does — should watch this free live webcast. Although Lyme Awareness month ended on May 30, the spread of Lyme disease did not. By using this platform we hope to reach a wide audience to inform, educate, and publicize the dramatic need for better Lyme disease policy and healthcare. It is the only way we are going to effect change.

 

We are contacting Lyme disease organizations worldwide to request that they post the event details as well as notify their contact databases. We need to raise awareness about the state of public health care for Lyme sufferers in Canada, properly diagnosed or not, and how they are being woefully untreated or under-treated due to a lack of any comprehensive strategy to address this serious problem. We hope that Lyme sufferers in other parts of the world can also learn from the mistakes being made in Canada. Your support in helping us get the word out for this live event is critical to its success and very much appreciated. If you relay this message to your contact list please let us know and we will try to thank you during the webcast itself.

 

There are no sponsors for this event and nothing for sale. The entire webcast production, including studio facilities and all technical support and labour, are being donated by Orchard TV. Orchard TV is Canada’s leading webcasting service and has worked with many artists such as the Allman Brothers and Jane Siberry and facilitated live webcasts from various major event venues in Canada and the US.

 

No sign-up or account is necessary to view the live webcast. Simply use any web-enabled device such as a desktop, tablet, or smartphone to visit the site at:

 

 

Live webcast:

 

http://www.orchardtv.com/vanessafarnsworth 

 

June 23, at 8:00 p.m. EDT

 

 

Thank you for your time and consideration of this request.

 

Sincerely,

Michael

 

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