my dear friend kelli went hiking and biking today (yesterday, technically) about an hour north of nyc. when she returned, she found a tiny black dot with legs behind her knee (a nymph, i assume?).
it was imbedded. she dug it out with her fingernail (i know, i know, but she did it before i could warn her otherwise) and saved the tiny f***er in a jar, which is now in her freezer.
so far, no rash, no signs of illness. the tick was on her for probably seven to nine hours.
i am trying, trying, trying to convince her to take abx (doxy, 400 mg per day) for at least four weeks. she is scared of taking abx that long. she is scared of abx, of pills in general. swallowing pills is really frightening and difficult for her. she doesn't want to do it and i'm so afraid she'll just decide to ignore it and do nothing.
part of her fear is the potential side effects of doxy - nausea and vomiting in particular. she has emetophobia so this possibility is terrifying for her.
she knows my story. she's seen 'under our skin' (it made her cry).
i love her and i just want her to be okay, but of course i can't force her to do something she doesn't want to do.
maybe this is wrong of me to post this here, i don't know, but i need help. i will show her this thread. her name is kelli. please, please tell her why you think she should take abx, even if it might be hard for a few weeks, even if the tick that bit her by some miracle wasn't carrying any infections. (one of her fears is 'bombarding her body with abx for nothing.')
thank you so much, in advance.
~heather.
[ 26. June 2008, 10:27 PM: Message edited by: heiwalove ]
Posted by NanaDubo (Member # 14794) on :
(one of her fears is 'bombarding her body with abx for nothing.')
Kelli - I hate antibiotics and I hate swallowing pills but maybe not to the same extent as you.
What do I hate more? Having Lyme disease and co-infections, losing 8 years of my life, not being able to be the kind of friend, mother, grandmother, wife etc., that I once was.
I think one can recover from bombarding our body with abx - even if for nothing.
A full recovery from the things that tick may have carried, not as easy, much more painful and much, much more debilitating.
Your friend loves you. Give a good listen before you make up your mind not to be treated.
All the best.
Posted by catskillmamala (Member # 12536) on :
I also hate taking pills. I was a non-antibiotic person. I hate doctors and hospitals so much that I had my kids at home.
I NEVER used antibiotics. But now I have been on oral abx for 1 year and just went to IV Rocephin.
I always hated taking pills. Part of the reason why was that I had the actual mechanics wrong. I would try to swallow a pill and then chase with water rather than suspending the pill in the water. Maybe your friend has this mechanics issue wrong.
Oh, and also, I HATE throwing up. I've only done it like 5 times in my life. Doxy gave me no major stomach issues.
As much as I hate pills and throwing up, I hate having a tube running into my heart much more.
Posted by roro (Member # 13383) on :
Its very difficult to believe something even when it stares you in the face.
I know someone who has an itchy red blotch where he pulled a tick off six months ago. something must be going on after six months.
most people will only listen to their doctor. I went for 15 years believing the doctor even though people were telling me about lyme. and i was very sick, and spending money on vitamins/herbs for CFS etc.
sometimes people have to learn on their own, or never and suffer and die. we really cant force anyone or change their mind. the way to change things is to educate the doctors
Posted by sixgoofykids (Member # 11141) on :
If she's afraid of abx, she should definitely take the doxy! That is only 4 pills per day! I take so many more than that!!!
Also, this is her only chance to get rid of it ... I know she doesn't know whether she has it or not, but I know if I were bitten, I'd treat.
I called my LLMD because my son was bitten, by a tick that was not a deer tick .... they said they would treat him anyway .... the risk is too big .... four to six weeks (they said six) is NOTHING compared to chronic Lyme.
Chronic Lyme is scarier than swallowing pills. At one point, I was taking 72 pills per day!!!!! Posted by lymemomtooo (Member # 5396) on :
Heather, this works for my friends. They rush to the phone and call me. Even when they are all sick of being told about the Hell of tick borne disease.
Tell them that one of the members on lymenet has a daughter that went without abx for years and the bacterias got into her central nervous system and brain and have caused brain damage and precipitated depression, severely impaired memory,fibriomalagia, OCD, type I diabetes, osteoporosis and more along with self mutilation and recently the 18th suicide attempt.
Family friends rush to the phone and call me and then go to the DR.
Posted by heiwalove (Member # 6467) on :
thank you so much, everyone. up for more replies.
also, lymemomtooo, i am so, so sorry to hear about your daughter's recent attempt. my thoughts and heart are with you both. <3
[ 26. June 2008, 10:30 PM: Message edited by: heiwalove ]
Posted by lou (Member # 81) on :
Have the same situation right now in my own family. Sister-in-law bitten, thinks the tick was on for two days. Identified it under microscope as "deer tick."
So I am hounding her and hubby, sending books, doing every possible thing to convince them to get some abx. Her local doctor says they don't treat prophylactically, wait and see if symptoms develop!
Haven't heard anymore from them, afraid they are ignoring me, assuming that I am overreacting. Meanwhile I am biting my nails up to the elbow, but have done everything possible to convince them.
What is even worse is that their daughter also has had some suspicious health problems this year, and I am worried about her too. Nothing is being done about them. How can people take such chances?????
[ 26. June 2008, 06:35 PM: Message edited by: lou ]
Posted by heiwalove (Member # 6467) on :
another question -- she cannot afford an LLMD. how does she convince a dr to give her enough doxy??
Posted by Keebler (Member # 12673) on :
-
People don't like to listen to friends or family.
A LLMD should look at the bite site - she may need a doctor, with magnification and surgical tools to remove the remains and, regardless of what treatment she may get - of tick parts are still in there, they could possibly be problematic far into the future.
In one eastern European country, it is standard for ticks to be surgically removed - a simple task in the doctor's office. They remove a tiny circle of tissue around the bite to be sure not to leave anything.
--
give her Savely's article, Nicolson's works, ILADS' site.
You have the literature to share, that is the best way to show her your concerns. Let her read it for herself.
-
Posted by Keebler (Member # 12673) on :
-
Share information about RMSF - a couple of current links here about that.
=======================================
Co-infections must also be considered with each tick bite. The full range of co-infections is not a focus of Savely's article below. Still, it holds much important information regarding the ``lay of the land'' as one seeks a qualified doctor to properly assess - or rule out - tick-borne disease. Bottom line: tests are not enough.
Issue Story From the May 2007 issue of Clinical Advisor
Controversy continues to fuel the "Lyme War" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
My bff was bitten about 3 weeks ago, the tick was on about 3-4 days I think
She put herself on 400 mg doxy (accumulated from various sources)
She is still not feeling well and complaining of bad fatigue and shoulder pain etc
Meanwhile, I got her the name of several lyme friendly docs in her area several weeks ago, but has yet to make an appt because she wants to "wait and see"
So yesterday, after she told me how she fell a sleep in her car in a parking lot a few days ago and was at the time talking to me on her cell phone driving and saying wow "I'm lost"
I kind of freaked out on her to be honest. She needs to make an appt with one of the docs I gave her and now! I asked her what the h%** she was doing. I was very firm and told her this is not something you mess around with!
Posted by Larkspur (Member # 5131) on :
Oh - I just read the bottom part of the original post - you want a message for Kelley to convince her to take antibiotics
Well, basically my message is, I'm totally get your fear and unease about putting yourself on antibiotics. It might not be fun, it is possible you might have some unpleasant side effects, which can be minimized if you take probiotics.
Bottom line, you don't have a choice. You know the realities of Lyme disease and what havoc it can cause. You are very very lucky that you even have knowledge of this tick bite and have the opportunity to treat it early.
I think this is even an opportunity for you to overcome/face your fears.
Evidence is overwhelming that ticks can transmit lyme in only minutes and the majority of ticks are carriers.
Oh - go to the finding a doc section and see if you can find any info about "Lyme friendly" docs in your area. At this point, your friend just needs someone who will be willing to prescribe antibiotics, not necessary a "LLMD"
"Face the fear and do it anyway" - Susan Jeffers
Posted by heiwalove (Member # 6467) on :
was the tick on her long enough to transmit lyme? can someone point me to medical literature that states a tick DOES NOT have to be attached for 24-48 hours to transmit infection? thanks.
Posted by heiwalove (Member # 6467) on :
she just talked to some immunology guy in NJ who said that ticks have slow metabolisms so they can't transmit the spirochetes until they've been feeding on you for 48 hours.
i know this is bull**** but i need factual contradiction/evidence.
thank you in advance.
(oh, he also said taking abx for a month if you don't need them is 'terribly dangerous' and toxic. my poor friend has found herself in the middle of the lyme wars and doesn't know what to do.) Posted by Larkspur (Member # 5131) on :
Oh - people were talking about this on the board not to long ago - I don't remember the citations.
Perhaps do a search or start a new thread looking for this info. the infections can be in the ticks saliva or something, and transmit very very quickly
Posted by heiwalove (Member # 6467) on :
another question from kelli:
if she doesn't get symptoms from her bite in the next few days, is she in the clear? (i know, the answer is no. i need factual rebuttals because this NJ guy claimed he HAS chronic lyme and was still spouting IDSA crap.)
thank you!
Posted by Larkspur (Member # 5131) on :
I think you have plenty of information here. And Singleton's new book, as Schaller's, too, should help.
You have let her know the risk she's taking by not seeing medical attention. Beyond that - let it go. It's up to her now whether she will make an intelligent choice or not.
It does seem to be a statement, though, when friends and family do not trust the research we've done - had to do - denial is huge but it's hard not to take it personally.
-
Posted by groovy2 (Member # 6304) on :
Hi Love --
this is a post I wrote to a person who thought he was to cool to get lyme-
Below I included the link to the posts where about 40 others trying to get Pinster to take ABX so he dose not get sick--
So Pinster-- do everything you ever wanted to do in your life--in the next six months while you still can.
Get a good comfortable bed-- you are going to be there alot.
Take some pictures of how you used to be.
Run around the block and jump up and down as many times as you can--just to see how it feels for the last time.
Spin around till you get dizzy- it will be good practice for whats to come.
-- You are going to have to learn alot of medical terms--so you might as well start now while you can still remember.
--Eat all the food you Really like- dont worry about your weight-this wont last long.
You are going to spend the rest of your life as a drug addict - just not the fun kind -so get on good terms with your doc and pharmacy. Closer the better
Learn how to use spell check and get a lot of sticky notes-make some real easy type of file system so thing dont get lost ( I pin everything to the wall)
Do some simple math on paper-and save it- to prove you used to be able to do it. Hay-there you go- this could be the first thing you pin to the wall.
Clean your home for the last time-Do a good job its going to have to last a while.
Bookmark Lymenet.org -you will be comming here alot. Oh yea- did I say to learn how to use spell check.
Also get a good comfortable chair - for when you not in bed.
Take up some hobby that you can do from the comfortable chair. Paint by numbers is perty good except for all numbers and lines. Get a big paint brush-it wont matter.
Go to work and be productive-- build up as much sick leave as you can- it will come in handy.
Get hooked up with Meals on Wheels-- They deliver .Time is a waisten.
Talk to your neigbors - so they know who that was standing out in front of your house yesterday and wont call the cops. -This will save you from getting out of bed and having to find some ID. Did you pin it to the wall?
Go to a bar--have some fun- Get Lucky if you can. Have Safe Sex--You dont want to give them anything.
Write down the names of the friends you used to have-Pin to wall--Look your doin good --you already have 3 things pinned to the wall.
Get to know your kids--they wont be around much from now on.You know how kids are.
Take a vacation- your not going to be going very far from home - perty soon.
--Make a list of the 5 stupidest things you ever did--Leave room at the top of the page for not taking enough ABX for long enough when the Lyme disease was easier to Kill.
There wont be that many more stupid things you have done because you wont be able to do many more things. -- Pin list to wall.--Jay-- [URL=http://http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=033426;p=1][/URL]
Posted by adamm (Member # 11910) on :
Doesn't she know how much more nausea and vomiting there'll be
if she gets Lyme?!?! Doxy didn't give me either of those side effects,
BTW. Could you have her read Cure, Unknown?
Posted by Keebler (Member # 12673) on :
Jay/Groovy, I LOVE YOUR POST!!! Tongue in cheek doesn't EVEN begin to describe what you wrote! God, I just love what you wrote!!!
Posted by bettyg (Member # 6147) on :
...
jay, good post; just telling it the way it is.
kelli, he was NOT pulling your leg or trying to be a COMEDIAN! THIS IS LYME REALITY.
i ask that you watch this 4.44 minute tape of this precious 14 yr. old teen, ALEX; she is dying from bartonella, co-infection of lyme, and NO one can help her!!!!
.. http://www.youtube.com/watch?v=W40ZI1nSpX0 4.44 length story about Alex Hermstad, 14, Iowa, paralyzed and on ventilator slowly dying from Bartonnella and other UNKNOWN DISEASES; her daily life being assisted 24/7.
please watch this then find MIKEJ's post about Oprah, and click on the direct link of my post there requesting Oprah do a show on ALEX SOON since she is critical!!! NO TIME TO WASTE! thanks all!
Posted by WildCondor (Member # 434) on :
All this BS about the tick having to be attached is just that, BS! As soon as a tick bites you, it's saliva transmits the infection into you within minutes. The longer it is attached, the more germs it will give you. Look at the biting and sucking mouth parts a tick has and the fact that they are filthy creature who live in the dirt and feed off the blood of other animals. Of course you can get sick, and quickly! If you have a known tick bite, get treatment the same day! Waiting=not smart! wait and see=very bad idea.
Posted by adamm (Member # 11910) on :
My tick wasn't even attatched btw! It had merely injected
me with whatever fluids it does to prepare its feeding site.
Now I'm 18 and losing everything that ever mattered to me. That
non-attached tick, quite literally, sent me into a state
of death-in-life.
Posted by heiwalove (Member # 6467) on :
wow adamm, i had no idea your tick wasn't even attached. that's craziness.
thank you so much to everyone who's responded so far. up in case anyone has further thoughts.
Posted by Clarissa (Member # 4715) on :
Dear Heather's friend:
Here is a list of my symptoms caused by a tick bite when I was a child. Because I wasn not privy to the knowledge you have through your lovely friend, Heather, I have suffered off and on my ENTIRE life.
Here is a list of the symptoms I experienced because I did NOT know I had Lyme and did NOT treat with antibiotics.
You decide the path of your life right now:
I wasn't diagnosed until I was 34-years old.
A list of my symptoms: clinical depression stomach aches (kid trying to get out of school) fear of having BM's (as a child) accused of being a hypochodriac/faking/weak constitution over-sensitivity EXTREME anxiety, SEVERE OCD by the time I was 8-years-old allergies swollen eyes codependency on Mother (anxiety) fear of leaving home (anxiety) homesickness (anxiety) mono thyroid problems mytral valve prolapse of the heart horrific mind-blowing two weeks worth of PMS (every month for over a decade) mind blowing stiff neck (like in a vice grip) freezing feet, hands and nose even in CA & FL severe lower back pain (had to take steroids for my "slipped disk") herpes simplex on my chin in a clock like circle? skin tags conjuctivitis bladder control problems melasma of the skin chronic insomnia extreme daytime fatigue rage impulsivity "psycho" risk taker crazy one in the family; black sheep promiscuity heart palpitations acid reflux extreme stomach pains/GI Tract issues chronic sore throats thrush (several times) frequent vomitting dehydration horrifying panic attacks sensitivity to light, noises, smells clusters of plantar warts all over heels of feet severe cystic painful burning acne germ issues compulsive washing/bathing tmj/teeth grinding clumsiness, dislocated knee from swinging a bat self-hate weird reactions to food...swollen lip suicidal thoughts hopelesness, envy, jealousy due to low self-esteem fungal toe infections soft teeth (14 cavities first check up as a child) roasecea of the skin anorexia/overweight, yo-yo up and down body dysmporphic disorder night sweats delusional thoughts ritualistic behavior horrific headaches severe/persistent cystic back acne reclusivity/turning off phone/towels over windows overdose of xanax actions without thinking of consequences smoking cigarettes and other incapable of trusting or being truly intimate on an emotional level inflexible/afraid of change intolerance to alchohol self-blame for almost everything irreverence alone/emptiness due to tortured brain
Please make the right decision and nip this hell in the bud!
Blessings,
Posted by heiwalove (Member # 6467) on :
clarissa, you make me cry. in the best way, of course. *thank you*
and as an aside, i'm so, so happy you're in remission now. god knows you deserve it (we all do!). hope you're having a blast!
i'll always feel a special connection to you for literally saving my life all those years ago.
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