randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
sorry to say but yes lyme can be fatal. now how soon, no one knows, but my mom died of lyme at 83 and my ex-fil at about 90.
i believe mom had it her whole life. him, i think he got bit about age 60 or so.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi LL,
For your doctor to say that was not the best bedside manner or the entire truth. Many people have gone into remission and you can read the success stories on lymenet.
You have to be persistent with your treatment and believe in it. Does your LLMD use integrative medicine such as including herbs in your treatment?
Don't be discouraged with doom and gloom statements. I am almost in remission and you can get there too,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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For your doctor to say that was not the best bedside manner or the entire truth. Many people have gone into remission and you can read the success stories on lymenet.
I'm a success story! ( and I agree with statement number one! )
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I'm sorry~I should clarify that if you look at my LLMD's words in text, it could look very different from the approach he was giving.
He actually has a very good bedside mannor, and I feel badly if I made him out to be different in my explanation.
He's awesome...but he knew I was new to the disease, and wanted to set me straight about how serious this is.
He was making sure I understood the magnitude of the illness, hence the importance of maintaining the antibiotic course.
He was wanting to make me to understand that it would be a long road-but don't get complacent.
HEARING of success is crucial though becasue I have been home bound and most of every day, bedbound for three years now.
THANK♥YOU! For giving me hope for health.
I have so much to learn...like how long until I feel up to being productive all day? or even for more than 3 hours.
Now, there's something VERY disturbing that I recently learned.
IF you google "Lyme disease deaths" there's a mountain of misinformation that comes up on there. I have already stumbled into "quackwatch" a time or two and it's probably Allen Steere!
Anyway, I hope this gets straightened out soon-and if we can figure out how, we can start the change rolling.
I knew of a few people who'd lost thier lives to Lyme, so I was conerned that when you google "Lyme disease deaths", there's a LOT of misinformatin being sent out to unwitting Google searchers looking to learn about Lyme disease.
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Bless your heart.
What I should have included with my above answer is that the links were meant to provide evidence of what can happen with these diseases. NOT to provide evidence of what will happen.
I want to make that distinction clearly heard... so let me repeat it.
Having TBDs is NOT an automatic death sentence for anyone. It can happen, but there is NO evidence anywhere that it will happen.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Thank you Melanie & Everyone who is helping me with this.
Thank you all for your help and the links.
We have to keep the delicate balance of knowing the potential of this pathogen, and of course maintaining our positive outlooks during recovery.
The fact that this CAN be fatal needs to be driven home for the people getting their info from ABC, NBC, CBS and Google.
I think this is an important fact we want to integrate into our awareness efforts, because the general public has NO IDEA what this disease can do.
I'm SO sick of News clips saying bullseye rash bullseye rash, etc. SO many Never get this and THAT is what me think I couldn't possibly have LYME...for YEARS of suffering.
Also, if everyone is like me, they're thinking, "So? Of course if I feel a bug, I'll brush it off!"
"Oh Sure. SURE you will"...
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
posted
That's why, once you get the hang of the facts, you can also start to contact your media and other org'ns in town and have this dialogue with them about the seriousness of Lyme and co's.
Because who better to have this discussion than the very people like us who suffered due to ignorance and misdiagnoses.
Idea: make up a little flyer with those kinds of quotes at the top, then refuted, and post it around town.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Today I did learn something interesting from my new doc. He was most intrigued to learn that my mother and my cousin (her niece) both died of ALS. My doc said that it could have been advanced, untreated Lyme, misdiagnosed.
Since I am having speech and swallowing problems (both of them lost those faculties) I am worried. But he assured me that I am on the right track, being treated now rather than later.
My sense is that most people die when the disease goes undiagnosed and untreated for a long time. We are learning more and more, thank goodness, and getting treatment sooner.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Farraday, I too could not swallow. At first I was on the phone with my husband describing that I'd had pills stuck in my throat. They wouuldn't go down, and would not come up. This happened about once a week.
HE said, "It just FEELS like something is stuck in your throat." Only the NEXT time it happened, I was able to work them up better than down (proof).
Then, I had one so bad that water would not force them down, and had to get something thicker-yogurt.
I became so comfortable with it that I just called it my "slow spot". I was terrified of cancer, but kept putting it outta my head since I could do nothing about it.
Silly me. Knew NOTHING of Lyme until THIS YEAR!
The problem went on for over a year until in June, when it happened in the middle of lunch, not with pills. THEN I got nervous. I was in line for a swallow study when bitten in May.
A FORTUNATE bite indeed.
Robin...I LOVE your idea! Thank you! I think I will get right on that the next time I feel well enough. Know what? *I* was bitten in CA too.
Camped on the Yosemite valley floor, EVERY summer, and thought I'd returned from the camping trips ill from the cold air and lumpy ground (leaky air matresses).
Of all the irony, as I got weaker, I'd sit and read under a tree while everyone else ran around. (Bad Idea, I know now.)
I lived in the sacaramento area for 20 years (bay area before this) until moving to the Chicago area last year.
NOW I learn Califorinia is teeming with Lyme too.
Brilliant idea. Truly brilliant! Thank you
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
it's so hard to say as the IDSA says chronic Lyme just mirrors the aches and pains of daily aging and no one dies from it. I never know who is right.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
"it's so hard to say as the IDSA says chronic Lyme just mirrors the aches and pains of daily aging and no one dies from it. I never know who is right."
Seek... you must be joking, right?
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Thx, learned - ah - another CA Lymie - just sent you a pm.
I know someone who educates the park rangers in Yosemite every time the family takes a vacation there.
Which is a cool idea, yes, everyone? - if you or others you know take outdoors trips, to bring Lyme brochures with you to give to those who run/patrol the place.
Posts: 13116 | From San Francisco | Registered: May 2006
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Ok ,I hate to say it but mabey it is.
When we are young we can fight harder and have real nice periods of remission.I even climbed 14000 foot mountain peaks during remission.
Longs peak colorado,13800 foot grand teton,12880 foot middle teton,Tewinot mountain over 12000 feet,Medicenebow peak,various climbs at Seneca rocks WV.
I would take antibiotics mixing different ones,herx ,and leave on vacation,then stop the antibiotics and get that snap back to a real life for a few days and climb my hinie off!!!
I have had 3 months IV rocephin,months and months of biaxin,cipro,amoxicillin,suprax,and allmost every antibiotic oraly known to human kind,14 months of benzathine penicillan b injections ect.
But for me it has allways came back and as I age it is harder to fight this bear once again.
How many times in a human lifetime can a person take the doses of meds necessary to break the lymes back again.
Tolerating the antibiotics at my age is getting impossible.
It is like wrestling a bear as we get older we would get naturally weaker and the bear eventually will get us.
Immune system damage,and recently shingles. Holes in my bladder lining,blown tendons from cipro,the list goes on and on.
I still think that if treated properly while NOT going into a mechanic shop every day breathing toxic petrochems,while on antibiotics,there would be a chance to beat this bear.
For me it is to late without thousands of bucks for
Hyperbaric oxygen every day. Rife treatments every day. While living in a chem free environment like in wyoming. While on IV antibiotics switching them every 21 days to a different antibiotic. While using a sweat lodge every day to remove the toxins. For 3 years!!! Then taking immune boosters,and vitamins for years and not breathing any organic solvents or yard chem. fumes.
posted
Wow - you sure were fit - at least you must have some great memories...
Are you still working in that chemical envt? That would be tough on the ole system.
I cannot be around chemicals like that at all. I always have to work out solutions, as in I stay on the sidewalk and do not go inside a smelly bldg.
Re costs - I hear you. A lot of folks try to do alternative cost-effective remedies.
Posts: 13116 | From San Francisco | Registered: May 2006
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi Robin 123,No,last november the chemicals in the shop made me so ill I couldent even sleep due to the pain and I quit my job of 34 years.
Even going into Walmart sets off the pain.
I am fighting Social security for dissability,I have 10 dissabilities now.
Pre lyme I taught Dancing and was into martial arts,in my spare time,as well as the outdoor stuf. I started out in top shape.
I have had lyme 25 years.
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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posted
This is such a tragedy - have you been able to influence others to protect themselves as a result of what happened to you?
Posts: 13116 | From San Francisco | Registered: May 2006
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi,Yes,I have told everyone I know and a lot of other people about ticks and lyme.
I still like to hobble down trails when I can,however right now is the worst tick time of the summer here.
So I float down slow rivers in my kayak.
TICKS CANT SWIM WELL and get ate by fish,so the river is safe. HE HE HE
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
When I went to pick up my Igenex from my MD and we
argued about my neg/positive test. He said neg and
I had to tell him no and explain why. He said "Well
if you do have Lyme it is probably too late". It
would not have to be this way if the CDC and IDSA
would get off their XXXX's. Sorry.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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