posted
Earlier Today, My Very Own Cousin Told Me to Just Forget This Whole Lyme Thing & To Just Get On With My LIFE !!!!!
I Am Still Speechless... !!! ??? !!!
I would never ever wish this horrible thing upon anybody, but maybe this one time, just this once, if they could only understand and feel.....
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Unfortunately, That is not uncommon, for family and friends to make thoughtless comments like that.
It almost feels like someone is watching an intruder hold you hostage bound and gagged holding a gun on you.
Then the friend or family member says "why don't you just untie yourself and walk past the intruder who is holding you hostage with a gun to you head?
You can't believe they don't see the intruder.
That's how mind bending it has felt to me sometimes.
Maybe you can get a copy of "Under Our Skin" and show it to your family or friends. Just try and focus on getting well,
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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posted
Eric, I think it would be helpful if you had some info to give these folks that don't know anything about Lyme. You have a really active Lyme group in your state - I believe it's the Southeastern PA group.
Click on SupportGroups/UnitedStates/Pennsylvania, then click on this group. I think they have materials to give out.
Here I hand folks a California Lyme disease brochure and one about local infections. Since we know what's really going on, we need to educate others, not the other way around. It's a dance you do with people. Some are really to listen and some aren't.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thank you Sandie, sometimes I just wish that those very same people could wear my shoes for say a week or two and then see what they would say then...
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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posted
Gael, I agree with you, but unfortunately most people today only want to see movies that make them smile, laugh or a cool science fiction movie and then ofcourse those who like horror, but to see a movie/documentary about someone else who is suffering, they turn their heads and go the other way...
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I am soo sorry Eric, those words hurt soo bad. I hav ebeen told also to not let this "lyme thing" over take my life. OK... if it was that easy right. Now my boss is trying to convince me that yoga will be the answer. So all you lymies out there, go out and do your yoga and we'll all be fine!
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Gael what a wonderful analogy! I love that.
Eric, I don't think there is one person on this board who hasn't experienced complete misunderstanding or even downright disbelief from friends and family.
In my opinion it's one of the worst parts of this disease. It's isolating and painful, and I'm sorry that you or anyone has to endure hurtful, insensitive comments like that. I've had more than my fair share, and it stings.
You have to learn how to be your own best friend with Lyme disease and nurture and be kind to yourself. Tune in to your own voice and block out the "negative nellies". Easier said than done, I know.
I've had Lyme disease for over three years and NO one in my family speaks of it. The few times it has been brought up it was to say something like, "you're still treating that?" or, "I knew someone that had Lyme's disease and they took abx for a month and they're just fine"
My Aunt who is a sweetheart and not much older than me (she's 32) came down with mono two months ago. Now, I really am sorry that she's sick, I really am...but it has been the talk of my family for two months now. "She hasn't been able to work, bless her heart. She is so sick"
Everyone in my family has rallied around her and brought her meals, helped out with her bills, etc. It's a little dificult for me to swallow this because I have been every bit as sick as her for over three years. I have been unable to work, struggled to pay for my meds, wondered how I was going to buy groceries AND pay my light bill...the list goes on.
I have to reach deep down inside myself and try my best to overcome any feelings of anger, bitterness and resentment that I may have. Sometimes that's all we can do.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
We live in a world where an issue is on the front burner for only a short time and then it is gone from public view.
Chronic lyme disease (and other chronic illnesses)don't cooperate with that notion.
Educating people on what exactly is going on is probably the right way to go, but I have found that I don't have the energy to keep having the same conversations with the same people.
My approach when asked how I'm feeling is to answer with one of the following:
"Do you really want to know the answer to that ?"
"Oh, I'm a mess, let's sit down and talk. Do you want to get a drink for this?"
...Or any number of other smart-alec responses.
I have found that some get the message and some don't. I don't have the time to try to educate the world.
Maybe that's wrong, but that's me and where I am right now.
Carly
Posts: 797 | From New York | Registered: Feb 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
this is so sad. believe me ya'll now what i have been through.
mom had it, mess with sisters who don't believe i have lyme and one is a radiologist...
my own husband has told me "why don't you get a terminal illness then you'll have something to complain about."
you cannot convince people no matter what you do. i'm sorry guys that's how i feel. people do not want to hear you are ill.
mike's friend has cancer and all i've heard is "poor fred, he's undergoing chemo, poor fred, what about his family. blah, blah, blah..."
sorry, this is such a sore subject for me. i feel for you, i really do, but people do not want to hear about lyme because the medical community says "it's all in their heads. they're crazy people."
so naturally people believe them...even our own families...
i've done a lot of silent crying, but that's the way it is...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I'm tired of hearing these kinds of remarks, and I always travel with info now. I usually hand people brochures, like the California one, plus my local flyer.
I believe we are in the position of having to educate others, if we feel up to it - some days I do and some I don't - I gauge my own energy level in deciding if I'm going to engage or not.
I think for many people, they're going to have to hear the message many times in different ways before it starts to sink in. So we just to decide if this time is going to be one of those educating times. It's the long haul route...
But no, we don't have to be passive victims of "what People say" - I think we can take assertive action.
Posts: 13116 | From San Francisco | Registered: May 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have found that even if people that really love us are supportive and caring, they still don't get it. There is no way they can unless they walk in our shoes. For those that are hateful about it, I don't give them the time of day. We sure don't need that kind of stress in our lives. Like Lauren said, you have to love yourself and do what is right for you.
I do think we are in a position to educate people, but many people don't want to be educated. I hope that when I am much better that I will be able to do more to inform others about LD.
It is a sad consequence of having this illness, that we have to be ridiculed for being sick or for not getting on with our lives.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I work it more with people, if I'm in the mood to do so - like, this isn't like anything you know, this is like the twilight zone, think of science fiction, something off the map of usual experience -
I just keep going like this until I get a glimmer of connection. If not, ok, I give up for the time being.
Posts: 13116 | From San Francisco | Registered: May 2006
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I must own at least 10 pairs of really nice Puma sneakers, I would surely share a pair or two with some of my so called friends and so called family members, And allow them for just a week or two to FEEL and TASTE the True Pleasures of LYME !!!
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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posted
Go ahead, Eric - design your friends a Lyme Disneyland - a walk in your shoes experience.
Hm - tacks in the shoes for those sharp electrical sensations, novocaine for where we don't have any sensations
no doze for those sleepless nights, and we'll keep them up for three nights in a row for the fatigue element
high-pitched sound generator for the tinnitus
really, really bright light that it hurts to look at
too many things to remember on a list yet they're supposed to remember all of it upon first hearing
a very strenuous hike where all their muscles will hurt the next day
exposure to difficult-to-breathe chemicals that they have to run away from
and then tell them the duration of time they get to spend in Lyme Disneyland is unspecified, vague, unclear as to when they get to leave
Posts: 13116 | From San Francisco | Registered: May 2006
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And something to make their Spine and Neck hurt...
Oh and they have to wear them in bed to get the chills and the sweats.
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Sorry, not able to read what others responded yet.
But, it took me a long while to figure out I needed to avoid the any sayers or limit the time I am around them.
I mostly stay away from them.
Things got a lot better after that. It is difficult enough trying to battle this illness.
It beats you up enough.
I use to think we education they would change their minds and understand.
WAsted energy for the most part.
I find that some people just come along side of you and are pleasant to be around. Low stress.
Those are the best.
The ones you feel safe with and know if something happened you could trust them to take care of things instead of making things worse.
I find people like that are few and far between but much appreciated when you are around them.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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ajisuun
Unregistered
posted
I have to say that I'm one of the lucky ones. Since my co-workers are also my neighbors and my social network, we are extremely interdependent.
When one hurts, the rest feel it. So, while they may not get it completely, they know that I'm sick.
They watched me deteriorate until I could barely get out of bed and have watched me improve little by little over the past 3 years.
My family doesn't get it at all and they may never understand.
I'm in Africa (and have been for almost 4 years) and they are in the U.S.
They didn't see me at my worst and I really hope that when they see me in a few months most of the symptoms will be minor.
I know I will never be able to explain how sick I really was and they probably won't understand if the fatigue still forces me to nap every day.
We'll see. In a few months, I may be one of the ones complaining that my family doesn't get it.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Robin also please throw in a dead rat. I had that as one of my symptoms for much of my illness. YUCK!!! No one else could smell it so of course it was neurological. Let them deal with all those other things while smelling a dead rat 90% of the time. That adds a nice element, don't you think?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Ok, Mickey Rat now included in Lyme Disneyland, or is it Ricky Rat?
Eric, for the spine and neck, we'll make 'em play twister.
And the chills and sweats can get handled in an Arctic/Sahara temperature-shifting chamber.
Posts: 13116 | From San Francisco | Registered: May 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Also for vision problems they must wear clouded contacts, so everything looks blurry.
Administer high doses of caffeine to bring on anxiety attacks.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
oh and sand for the eyes to make them gritty.
and hit them on the head so their ears ring really bad...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
And they must walk around with a backpack that is too heavy causing the whole body to ache and shortness of breath.
A backpack full of bricks?
While climbing Mt. Everest without oxygen
[ 16. December 2008, 09:03 PM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
And let's see - to be strapped in a bed for a really bumpy ride, sometimes passing cattle prods for extra little muscle jolts.
With fun house mirrors to create weight shift appearances - from skinny to heavy.
And blurry signs.
And Lyme Disneyland characters walking around like these:
who tell everyone inside that Lyme Disneyland is really fun, for the whole family, and we don't know what you're talking about when you say you want your money back.
Posts: 13116 | From San Francisco | Registered: May 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Don't ya wish you could take one end of jumping cables and someone could hold the other end and they could feel it for just ten minutes!
posted
Robin123, the Lyme Disneyland is one of the funniest things I have seen.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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posted
Yeah, Lisa, and jump through hoops too. Lots of them.
Thx, Mazou - we're definitely still open for more Lyme rides...
Don't forget Snow White (Snow Bite?) and the seven dwarfs - they'll fit right in - Sleepy, Dopey, Grumpy...
And of course there's Goofy running around just to make us all feel at home.
Just look what Eric's cousin started...now who's going to get rich on this franchise?
Posts: 13116 | From San Francisco | Registered: May 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
Eric: i have been around here for 7 years now lyme for 15, undx for 7. I WOULD NOT WISH THIS DISEASE ON MY WORST ENEMY, EX WIFE MAYBE,.
It is important in the evolution of this disease to come to terms with the fact that you may be sick forever, never get better, never date again, and never get sympathy from a single soul.
i would suggest, since you are from where i used to live to contact one of the 2 lyme support groups in chester county and invite your friends or family.
Even my wife, though i was having a nervous break down ,when i had to stop work, without a dx. I had 3 dental offices, 3 dentists and many staff to support. I have to let go almost all of my staff just to pay my bills. My wife decided is was actually sick when the government said i was permanently disabled and the first check was in her hand. this was 4 years after i was dx and stopped working.
You must learn to live within yourself, not worry what others say,do , or how it makes you feel. you must come to terms with the fact that you have or may have a chronic illness, like any other chronic illness. Nobody really cares how you feel, sorry to say that ,but it is true. the lyme support group at chester county hospital is a nice group and will help you in this problem of getting over the hump.
YOU HAVE TO ADD HOT COALS TO THE BOTTOM OF THEIR FEET.Have them smoke a joint for lyme fog, put a bag over their heads for driving. just my 2 cents.pull out all their teeth and give them dentures that don't fit for all the mercury and tooth problems ie, GiGi
good luck and feel free to pm me about the above before the lol
docdave
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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but the fact that i may be sick forever really scares me...
i hope that would not be the case for any of us.
since so many do have this horrible disease, and so many just dont know it yet, plus many others who are either in denial or just afraid to admit, and then all those who are misdiagnosed. it is starting to get some attention in the media and our so called government,
maybe just maybe there will be a cure one day soon for us all.
after all, this is a bacteria, and if it lives, there has to be a way that it can die.
i hope and prey for us all.
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Eric,
This is Lyme Complex. Start searching on here so you can arm yourself. We are dealing with more than one pathogen. You cannot depend solely on an LLMD to get you well.
I sent this info to you before.....www.lymephotos.com
There is a MAJOR parasiite and worm component to this disease. As well as mycoplasma, viruses, fungus, mycobacteria, borrelia etc.
The parasites and worms protect these pathogens and also produce some of them. If you get rid of the main offenders, you can hopefully put this into remission. 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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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
yes glm you are correct, this is more than a single pathogen. even lyme itself is over 200 genotypes. thats a possible 200 totally different diseases.
and yes i WILL HAVE IT IN MY BLOOD STREAM OR AT LEAST MY TENDONS,JOINTS AND MUSCLES WHEN I DIE.
this disease is extremely complex and works like a virus in a computer. it can be stealth, it can change its appearance to wbc's , it can hide. it may even change from dna to rna. it may as i have proposed that it can morph from bacteria to virus. Also are concepts like hla-dr4 that if positive,make for an almost impossible healing from lyme. you can not let your goal be to cure this disease. you must be happy to get it under control as asoon as possible and live with some of the milder symptoms. most destructive symtoms will not go away ie. neuro function.my IQ went from 175 to 132 now. so it is a permanent damage. maybe younger people repair better you must understand this concept or you will never be happy,always complain and never, never get close to getting better.
so i give you the pep talk and now hit you with the reality.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
First time posting. I have been thinking about what I read on some other place on the internet that said most people do not understand, and it is better to talk about it online with those who DO understand. So Here I am. Because, although most of my friends and family try to be supportive, I can tell they are somewhat flummoxed by the variety of symptoms and the unconventional treatments -- MONTHS of antibiotics???? So I just decided unless I was so sick with a herx (just learned that one!) or just a regular Lyme symptom, I would refrain from "sharing."
My husband is so worried about me, that to him I only want to say I'm getting better -- which of course would be a lie -- since it goes so up and down -- so I try to just say a good day or a bad day. A good friend that really tries to understand actually had a little insight, asking me if when I feel good that I just want to get all the things done that I can't do the other times. That was pretty understanding, I thought. I feel mostly so fortunate that I found a doctor who could diagnose my odd symptoms -- that I had just thought was aging, inactivity and overweight. She kept thinking it was Lyme (I did live in the Wisconsin woods for 8 years before moving to Minnesota)Then finally I paid for the Western Blot and it came up positive. She said fortunately I am a clear case - I did get some reimbursement from my insurance for the test.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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posted
Welcome, Judy - that's fortunate that your doctor figured out it might be Lyme. Now that you've had it confirmed, you can also make a post in Seeking a Doctor here to find an LLMD near you who's experienced in treating it.
Since we're all different in terms of which diseases we have, which strains we have, and how our bodies respond, I think it is also a matter of trying various treatments to see which ones we're going to respond to.
And you can never know that until you try. That's why I encourage everyone to study online here about all the various ways people are treating, with not just antibiotics, but also supplements, energy treatments, etc., and then decide what you might like to try.
For me, antioxidant treatments are working - mangosteen juice, noni juice, grape seed extract - but that's just me - others will respond to other things here.
Posts: 13116 | From San Francisco | Registered: May 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
welcome judy, and sorry for the somber post above. but it is reality for a lymie treatment is important. i would suggest gradual treatment rather than mass treatment. when i first got treated with iv, my treatment was massive, shocking and scary.
the symptoms that came from the initial killing of the bb were quite overwhelming. i would now go thru the procedure, knowing what i do now with a pulse treatment or gradual increasing dosing. i was sicker from the inital kill than from the lyme disease.
one thing lyme disease does usually during treatment is cause herxing, and lyme rage. this is m=normal but extremely frightening. it turns a nice quite person into a raging fool and sometimes a maniac. lots of yelling and screaming occur. your spouse must be made and informed of this condition, or you will be on your own.
i suggest that you get a white board and post it on refrig. every morning you can draw a smiley face, sad face,angry face, moodless face. your husband or spouse needs to understand these faces and what to expect for the day. pushing your buttons on the angry day will surely start fights, loud fights. explain to him that you are going thru menopause early and he must abide by this rule of following the face on the refrig.
consuling is also sometimes very important in a long running disease process. also check to the leftabove and look for a lyme support group in your area, and make sure your spouse goes with you to the meeting. this is a great experience for you and spouse, since many others will be there with the same issues.
docdave and yes i am a real doctor, dentist 23yrs.
quality not quantity
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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bettyg
Unregistered
posted
welcome judy,
please UPDATE YOUR PROFILE and then go to bottom of it and show YES TO ENABLE PRIVATE MESSAGES! that's how we send private info on llmds/lyme literate mds, etc. thanks!
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! ------------------------------------------------------
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posted
We are in the exact same position as the veterans with Gulf War Syndrome.
They were sick all right, but the Government kept saying "no such thing".
t has just recently been acknowledged as real, after how many years?
We too will be vindicated some day, but it may take a very long time.
Jan
Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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posted
I've gotten this "oh, come on, get off of it!" attitude as well.
People who say this don't understand; they honestly don't. Alot of people cannot fathom an illness that can do what this one does.
Or on the other hand, sometimes they too are so overwhelmed by all of the symptoms, etc, that it's just a reaction due to fear.
People react to extreme situations in different ways. May not make a reaction right, but it is what it is.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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just read that whole thread and figured i would interject because my view is a bit different.
Your cousin is an insenstive jerk..i agree. I've been dealing with a family(and so called friends) of them for the past few months.
BUT...and this is a big but for my recovery. Anger is just wasted emotion...if your upset or angry go take it in the gym so you benefit.
The bottom line with any disease is that some people are empathic and some are not. Some will gain understanding if they see under my skin some will not.
But what is the healthiest option for you?...stay strong, stay tough and let all of that BS go. Every dog will have his day...and you will have yours. The difference is you will be there when someone needs you becasue of the understanding you've gained(yeh crappy way to learn)
So take Peace in the fact that you(that goes for all of us) are one Tough SOB and can beat this. Don't look to others except for the few who know and undersatnd...mostly look inward. They will never know....
Find inspiration in what your battling especially on those bad days. I have a picture of IWO JIMA on my desk. Do you think anyone in the states knew what those guys were up against? so throw a few bucks to the next homeless person you see because now you know what life is really about.
Okay ..dude i'm off my soap box. Keep your chin help high and Merry Christmas.
Never let the *******s drag you down- U2
Keep the faith, Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
Eric, I suggest you learn as much as you can about Lyme so you will know what we're really dealing with, and then it will be you who informs the public, not the other way around. It takes a while to absorb what this strange experience is all about and how to deal with it.
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by Robin123: Eric, I suggest you learn as much as you can about Lyme so you will know what we're really dealing with, and then it will be you who informs the public, not the other way around. It takes a while to absorb what this strange experience is all about and how to deal with it.
hi,
i am learning day by day and night by night,
and the saddest thing of all is that when i try to spread the word to those on how horrible this disease really is, to those who are not online, they all dismiss it as that its all in my head or that i spend too much time online.
but according to my blood work (2 labs), skin rash, symptomps, and llmd visit, i am sick and do have lyme.
and that makes me very upset when others just dont understand.
especially when its family members, friends, the doctors, insurance companies and our so called government officials.
best regards, eric
[ 24. December 2008, 01:17 PM: Message edited by: eric555 ]
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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posted
Thank you everybody for responding to me. I've been away from the computer for a while and I was so touched with the replies and the offers to help
I got the message to put space between -- sorry about that.
To some of your responses -- I now feel even more fortunate since my doc is following the Buscannos (?) guidelines and advised me to read and follow his suggestions for other things to do re: supplements.
My doc told me to get the grapeseed extract and the milk thistle - I am also doing the other supplements CoQ10, etc. She is now adding Azithromax to my Doxy -- I really have confidence in her and her allopathic and naturopathic treatment.
After reading how so many suffer for so long, I feel good that I am actually feeling better. I don't seem to have that angry feeling (and I am already through menopause -- that was no fun!)
Of course, I realize I am only two months into the treatment and two months off everything as was suggested without symptoms seems like a good goal before ending treatment.
I have no idea when I got bit - but there were ticks all around all the time where I lived and on me too -- I don't think one was ever embedded for long, but I really didn't pay much attention.
There is a lot to do with educating the public!
My supportive worried husband has adjusted and the idea of the morning blackboard or something might be good.
I do feel better in the mornings -- is that usual for people? Also I have swollen ankles on and off -- do people have that symptom?
I think this is enough -- I have looked at all the newbie stuff -- THANK you.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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posted
Judy, I get swollen ankles, and knees, too. For me, the antibiotic clindamycin works within three days to reduce swelling in these joints. Initially I did 4x/day 150mg clinda, then dropped to 2x/day.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Ugh, my mother said the same thing to me. I can't get over how people just don't acknowledge that it's an actual illness. No one would ever say "Why don't you get over this whole cancer thing and get on with your life?" or "Are you STILL taking insulin for that diabetes? Get over it already!"
Very frustrating. Oddly enough, the thing that finally got my husband to understand was him getting a terrible flu. He told me how he was achy, and sick, and he couldn't hardly eat anything, and can't sleep, etc. And I said, "Every. Day."
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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Thanks, Robin, for the tip. I will ask my LLMD for a script for clyndamicin for the swollen ankles. Like everything else it comes and goes, but I do seem to feel worse, generally, when my ankles (and fingers, etc) are swollen.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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GLM, I checked out the Lymephotos website. I am just wondering if anyone reading this has tried the Salt/vitamin C protocol, and if so what happened?
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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Judy - just to make sure you know - we're all different when it comes to our responses to meds. For me, clindamycin is it. If you try it, go slow at first to make sure you tolerate it. I hope it may help.
Posts: 13116 | From San Francisco | Registered: May 2006
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-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I haven't even been diagnosed yet, and I've had people telling me to stop wasting my husband's money and just get over myself. One friend told me to start eating yogurt and fruit and drinking water (not that those aren't good suggestions) and stop trying to find out what's wrong. i get so mad when people say things like that. That's what the doctor told my dad when my dad was puking for 3 months--it's jusst a bug, rest and drink fluids and it'll pass. he died from colon/liver cancer 3 years ago, and i still want to kill that doctor! I feel for you, and I agree that it's a matter of educatibg people. I also said to a doctor who believes my illness is real, that I wish I could cast of these symptoms on these other doctors, the ones who say I just need a psychiatrist, just for a few days. Then they'd know what I feel is REAL. Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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quote:Originally posted by Starfall1969: I also said to a doctor who believes my illness is real, that I wish I could cast of these symptoms on these other doctors, the ones who say I just need a psychiatrist, just for a few days. Then they'd know what I feel is REAL.
What about writing a script for a play or film on this idea?! My turn for a Posts: 13116 | From San Francisco | Registered: May 2006
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Oooooh, Robin, if only I had the talent, the time, and the ambition to do that! I used to write poetry, but I haven't even done that for so long. Not so much from the illness end of it, but time constraints with 2 preschoolers. Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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my father also died from colon cancer, im sorry for your loss and feel for you...
just curious which idiot doc told him that ?
my dad too had an idiot who first told him that he was sick and going to die soon, and was very rude about it, it was at fox chase cancer center in phila, pa.
they have no heart there, infact unfortunately they they see it all so often that to them its just like a basic oil change for a car.
i wish that all doctors would also have a heart and a genuine will to help people and understand them, rather than the standards from which they all learned their basics from and thats all they go on.
best regards, eric
[ 05. January 2009, 10:15 AM: Message edited by: eric555 ]
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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