Tick problem getting' more serious!

Another overlay, almost direct ruler line from Lyme, Connecticut through high incident regions.
Worldwide incidence of ALS(Lou Gehrigs Disease)
dyw061f2.png
 
More fodder.
Baseball great Kurt Gibson was hobbled with knee and leg pain toward the end of his career, you may remember his famous walk-off home run when he hobbled around the bases in the 1988 world series.
Kurt was born in the woodland area of Waterford, Michigan.
He was an avid deer hunter throughout his life and still owns a hunting lodge in Michigan.
He was recently diagnosed with Parkinson's, or could it be that he was bitten by a tick?
http://www.freep.com/story/news/loc...yme-disease-exploding-into-michigan/98218954/
 
Guys and girls i promise I will try and write more about my Lyme experience but typing, spelling, and thinking are very difficult for me
It took me a good 45 min just to write what is below.

Conversation I was haveing with a fellow AK'r

Two in fact...if I may?

Firstly, did you go through the different stages with the "bull's eye" being one of the first?

Secondly, how effective were the drugs to date and how informed were the medical people dealing with you?




Sure no problem
As far as the rash thing as far as I know they say it only happens to about 30% of people.
For months I was trying to find out why I was feeling so bad (seeing my docs and testing) then one day my then girlfriend saw a rash on my side about 5 inches below my arm pit which at this stage was about 4-5 inches long. I think this lead to the Lyme diagnosis. "Sorry but my mind is so messed up now I can hardly remember what I did two days ago"
I then think (about three months into it now) I started some antibiotics with my primary care and read up on Lyme and found out about Illiads which is the leading Lyme disease group and called them for a recommendation for a Lyme doc. At the time he was one of 3 I believe in the state (NH) then it took me over 3 months to get in to see him. My primary fed me antibiotics here and there.

Now the funny thing is once you have Lyme it's possible that you can test positive for life even though you are not having any symptoms. So when you get tested they don't know if its recent or you got it when you were a month old. Now get this carefully.. "MY DOCTOR TREATS SYMPTOMS"
This is key, as there are so many symptoms that are symptoms of a hundred other problems and diseases.(see above posts as there are connections) A few are, eye issues, fatigue, extreme joint aches and pains, memory loss, confusion, sleep issues. I am sure you can already see the problem here.

I have seen my Lyme doc for 5 years (every six weeks or so) and he has not told me point blank I am suffering from lyme.(he is a good guy but deals with facts only) you couldn't take him to court on anything as he does not guess, mislead or anything like that. Why? Because you cannot prove it's the cause of your problems without a shadow of doubt. There are tests which are not very accurate (one more accurate but very expensive and paid on your dime which I have) that he uses to show the body is "in fact" actively fighting something and he uses the words "appears to be" often. He treats Lyme related symptoms but he will rule out any other possible issues first. It took a good couple of years knowing me and trusting what I tell him before we got real aggressive with medication. I mean, just think, you walk into a docs office and tell them you are fatigued, sore, extremely depressed and can't sleep well. Could be a million things right? Ya it could be, which is the problem. I will write more in awhile. And answer your drug question. Also if you don't mind I might copy this and just put it in the thread as I've been thinking about writing some stuff down to educate people on here it's truly scary stuff
 
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NH-MAN said:
Guys and girls i promise I will try and write more about my Lyme experience but typing, spelling, and thinking are very difficult for me
It took me a good 45 min just to write what is below.e him.
Click to expand...

Thanks for taking the time and effort to write what you did.

My daughter's doctor is a Lyme Literate Doctor (LLD) who has been treating her symptoms now for many years (more than eight) after many more years of misdiagnosis. As a teen, my daughter suffered joint pain and cracking noise in many joints, headaches, and other body aches which eventually progressed into slurred speech and memory loss. She's better now but is constantly being monitored for co-infections that all seem to go along with Lyme.

My doctor is not a specialist but a GP with an open mind about Lyme and experience coming from the Northeast. She reminded me that not only do very few cases manifest in the circular rash around the infection site, but the "ring" can also appear elsewhere on the body away from the the bite. She's cautious but has never failed to prescribe Doxy when I'm worried about a recent bite. I've said this before but if Doxy is okay to give to teenage girls for acne over a decade, or more, I'm not going to worry about taking it for two-weeks even several times a year.

Better safe than sorry!
 
Thanks NH for coming out of the woodwork and sharing with us your tale of woe with the encounter with this nasty critter that got the best of you...for the time being. I'm sure if they can do something for the canine world, they sure as he## can do the same for the human species! And B for your share as well.

I know that I will try to do my part and get some emails off to my local gov't reps, both Prov and Fed that there is an apparent urgent need and we should be calling an international program together in order to call in what everyone knows in terms of what has been accumulated in the way of an info bank and collectively address this problem.

If in fact, as I feel there is an inherent connection of nerve damaging agents that cross the board of infections, then there is urgent need to look into this situation.

Q
 
From my readings, Lyme an autoimmune disease, inflames and weakens the immune system, zapping the energy and strength of the body which would normally be able to defend itself from the invading bacteria.
Strengthening the immune system seems tantamount to declaring war on the disease especially for those who've been infected for some time.
No doubt a regime of antibiotics when a person is first is the best way to kill the (anerobic) bacteria when it's still in the blood stream and not yet found it's way into the bloodless tissues of the joints, tendons, brain, heart etc.
I've also read antibiotics administered over long periods of time weaken the immune system and that can't be a good thing for fighting this disease in later stages:dunno:
 
tubed said:
I've also read antibiotics administered over long periods of time weaken the immune system and that can't be a good thing for fighting this disease in later stages:dunno:
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Again, if it's okay to give to young teens for their entire teenage life for simple acne, why the debate over whether or not it should be prescribed for chronic Lyme? My daughter takes more than one antibiotic, and alternates with probiotics and other cocktails from her compounding pharmacy. Hell, if it was legal in my state, I'd give her medical marijuana if I thought it would help.
 
BMWCCA said:
Again, if it's okay to give to young teens for their entire teenage life for simple acne, why the debate over whether or not it should be prescribed for chronic Lyme? My daughter takes more than one antibiotic, and alternates with probiotics and other cocktails from her compounding pharmacy. Hell, if it was legal in my state, I'd give her medical marijuana if I thought it would help.
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Lyme is a complicated, controversial disease as is it's methods of treatment.
Antibiotics are a miracle drug however long term administration(in general) has it drawbacks.
What works for some doesn't seem to work for others.
There are articles, opinions, facts concerning this all over the internet.
The first that popped up on a Google search was this article that included a statement article from the CDC and post treatment with antibiotics.
https://www.statnews.com/2016/03/30/chronic-lyme-antibiotics/
https://www.cdc.gov/lyme/postlds/

That being said I'm sincerely happy that the treatment direction your daughter has taken is working for her:thumbsup:
 
Controversial?
Hell, I saw a new primary care internal medicine doctor this morning who wasn't aware of Lyme on the west coast and that she had not studied the disease in school.
She said she was very interested in my story and was going to "look into it" after she prescribed me some drugs to try and help my symptoms:lurk:
 
Not quite a month has gone by and there have been 1700 that have looked into this thread.

Many others have chimed in with both first hand experiences and others who have contributed to the knowledge base what was pretty scant not the onset of our sharing.

Imagine the ground swell we as a community could create if shoulders were put to the wheel in order to get movement, more so than e been able to detect from my POV by those who are in positions to do something positive about this urgent med problem that's out there... one more serious that we think it is at present, or has more devastating effects than is thought to be


Q
 
Today I have an appointment with my Medical psychiatric doc . Not a shrink but deals with med and brain function. The last few years I have had rapidly decreasing brain function and memory loss which is really worrying me. We will probably do some cognitive testing again which I already have done years ago. I am really stressing doing the tests again as they are timed and take hours and my brain really cannot focus more than a minute or so on something. (this took me 8 min just to write the above)

Memory and thinking functions are believed to caused by the co-infections you also get with Lyme which are really hard to get rid of. My lyme doc and I have been treating these co-infections aggressively for over a year until I sort of hit a wall and leveled out a few months ago. I am now on my summer meds as you cant take Doxy in the sun as you will burn and being in the sun hurts real bad. ( I am not talking taking them for a week or two) I mean for months and months at a time. For example your driving in your car and rest your arm on the door panel by the window. within thirty seconds you can feel the infrared heat just going thru you skin into deep tissue and within 5 min it hurts. Its really bizarre and not pleasant

I am really nervous about links to Alzheimer's and such as I have a front row seat to watching my brain functions fade away. My lyme doc says he has patients that were like me and their brain funtions came back but I am not feeling that way. I am just on the search to head off what ever it might be early instead of later.

Be careful out there, you dont want to be me.

If any questions feel free to ask

I promise i will still write some on the meds issues I am already 25 min into writing this.
 
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BMWCCA said:
Again, if it's okay to give to young teens for their entire teenage life for simple acne, why the debate over whether or not it should be prescribed for chronic Lyme? My daughter takes more than one antibiotic, and alternates with probiotics and other cocktails from her compounding pharmacy. Hell, if it was legal in my state, I'd give her medical marijuana if I thought it would help.
Click to expand...

I have had many discussions about long term antibiotics with my doctor (I go on stretches as long as 8-10 months a time) yes there are issues with them but we keep constant tabs on liver function and such and do blood test every two months or so. He feels they are mostly safe if you can tolerate them.(alot of people cant) Remember he deals with these drugs with people like me for years and years so he know first hand what the issues are not what some medical journal says written by people who do not deal with these drugs on a daily basis. Either way I do not have mush to lose I will try what ever.
 
Very interesting thread here. While I never had the disease, I did grow up in SW Connecticut, knew people who contracted it, and kept up with the literature on it throughout my scientific research career. I am treading on thin ice in the medical community, but I feel the neurological symptoms are undeniable and directly related to inflammatory and autoimmune responses. I do agree with extended antibiotic treatment, it works most of the time, but for treating the immediate effects including co-infections. The problem is long-term. Once the immune system is triggered in people with a certain genetic makeup (still unknown), the degeneration carries on even in the absence of the bacteria. How else can one explain the neurological effects when the bacteria does not cross the blood-brain barrier?? The relationships established above between Lyme and other autoimmune diseases are very telling. So are the anecdotal examples of relief through selective dietary exposure. There is so much to discover about this disease yet very few dollars are spent researching it. It's a damn shame. The prospects of a general vaccine are nil, as the spirochetes exchange multiple plasmids (extra-genetic material) and hence are constantly changing. The tools are there to find other ways to eliminate this disease, but the funding is not I'm afraid. If current budget recommendations (huge NIH cuts) go through, the prospects are even more grim.
 
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phantomrebel said:
Very interesting thread here. While I never had the disease, I did grow up in SW Connecticut, knew people who contracted it, and kept up with the literature on it throughout my scientific research career. I am treading on thin ice in the medical community, but I feel the neurological symptoms are undeniable and directly related to inflammatory and autoimmune responses. I do agree with extended antibiotic treatment, it works most of the time, but for treating the immediate effects including co-infections. The problem is long-term. Once the immune system is triggered in people with a certain genetic makeup (still unknown), the degeneration carries on even in the absence of the bacteria. How else can one explain the neurological effects when the bacteria does not cross the blood-brain barrier?? The relationships established above between Lyme and other autoimmune diseases are very telling. So are the anecdotal examples of relief through selective dietary exposure. There is so much to discover about this disease yet very few dollars are spent researching it. It's a damn shame. The prospects of a general vaccine are nil, as the spirochetes exchange multiple plasmids (extra-genetic material) and hence are constantly changing. The tools are there to find other ways to eliminate this disease, but the funding is not I'm afraid. If current budget recommendations (huge NIH cuts) go through, the prospects are even more grim.
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Great post thanks. The CDC has been downplaying Lyme for a long time. Please understand The CDC is a government entity and hopefully your old enough to realize the "government" only cares about itself, its friends or its business partners.
Good video below, I hope the link works. Please excuse her talking as she is very enthusiastic about this and a lot of us lymies bounce around while talking as it's is extremely difficult to focus for such a long period of time.

https://www.facebook.com/jennifer.heathdarr/posts/1802831829733552
 
Please remember as I feel they might throw us a bone here and there I don't feel a solution will be easy to come by. it's not good for business to cure one disease that will probably cure a hundred others.
I asked my doctor the other day "what about the drug they give to animals. Now I am sorry I can't remember exactly what he said but it's become normal for for me to forget things seconds later. He told me what animals go thru the following days after treatment. Remember exactly what it was but I do remember it was kind of shocking and horrible and he said people would not go through that that's why we don't take it
He said something is in the works possibility sometime next year.
 
NH-MAN said:
Please remember as I feel they might throw us a bone here and there I don't feel a solution will be easy to come by. it's not good for business to cure one disease that will probably cure a hundred others.
I asked my doctor the other day "what about the drug they give to animals. Now I am sorry I can't remember exactly what he said but it's become normal for for me to forget things seconds later. He told me what animals go thru the following days after treatment. Remember exactly what it was but I do remember it was kind of shocking and horrible and he said people would not go through that that's why we don't take it
He said something is in the works possibility sometime next year.
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You've opened yet another portal with your share.

Q
 
Willy Burgdorfer, the renown Lyme researcher who discovered the Borrelia Burgdorferi bacteria, stated he was might have been infected with Lyme eventually died of "complications" Parkinson's disease.

http://www.telegraph.co.uk/news/obituaries/11265730/Willy-Burgdorfer-obituary.html


"In fact Burgdorf thought it possible that he himself might have contracted the disease when he contracted an eye infection after washing out the cages of laboratory rabbits that had been infected with it. Two weeks later he broke out with what looked like the typical Lyme’s “bullseye” skin rash and was given antibiotics. But he admitted that he could not be sure that it was beaten: “Who is there to prove that I had it or that I did not have?” he asked in 1991. “I just hope that if I had it, that it’s gone and that one morning I don’t wake up and find I can’t walk anymore. Where does the bug go? How does it behave? What causes the symptoms? How does it relate to the immune system? We don’t know. It’s all still up in the air.”

Burgdorfer’s first wife, Dale, died in 2005. He is survived by his second wife, Lois, and by two sons.

Willy Burgdorfer, born June 27 1925, died November 17 2014"
 
Thanks for the post above btw my appointment got cancelled today as he had an emergency with a patient, I go Friday now.
 
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