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Posted 8/23/2010 2:36 PM (GMT 0)
This is a tread on this site, healingwell forum, that will be very helpful to read. It will answer many of your questions.

https://www.healingwell.com/community/default.aspx?f=30&m=1606610

Also, read this story (there are many others) and find out how this person (a writer) was misdiagnosed for years, and was not given abx for Lyme by the ER doctor, although he had the rash:

http://www.observer.com/node/44687

Lyme is a very controversial disease and SOME doctors don't recognize it as a chronic disease, although there are lots of lyme disease patients in wheelchairs. You are your own advocate, you will literally have to fight for your life! THere is also the risk that a tick will infect you with more diseases on top of Lyme.


THere is also a movie called ::under our skin

If you go to youtube, you will see some of the clips from the movie. Get educated and stay on top of it, or it will take over your life. Some people spent over $75,000 to get better. If you are worried about a few hundred dollars now, please be aware that it will only get worse and it will only cost you more later. I would give anything to be in your place now and catch it early on!
Posted 8/23/2010 2:53 PM (GMT 0)
Simela, you and others that have given me help/advice is truly a blessing for me because if I had not come here, more than likely I would have just waited or blown off seeing a doctor at all. I am sending healing thoughts your way. Thank for the links. btw I am just amazed the medical community is in denial or clueless or I don't know what about this disease?
Posted 8/23/2010 3:01 PM (GMT 0)
I am one who has spent over $75,000 to try and find answers...not to mention wasted time. Do everything you can, tribalrules, to get on top of this NOW....

Simela, how do I get the movie, Under Our Skin???? Haven't really looked for it and maybe I should have before asking.... Also, is there any easy way to get Dr. Jernigan's book at a discount or are folks biting the bullet and buying it thru his website?
Posted 8/23/2010 3:22 PM (GMT 0)
Mamyou:

Here is a link where you can buy the movie.  http://www.underourskin.com/store_home.html

It is very informative and it shows not only the politics behind the disease (LLMDs who had lost their medical licences treating the people featured in the movie that have lyme--it is a documentary about lyme patients and their docs). I think is a great documentary for anyone to watch. It you don't want to buy it, you can go on youtube and see many clips of it. The movie is much longer than the free youtube clips. I watched the clips first and then I really wanted to see the whole movie and I am glad I did.
Posted 8/23/2010 4:50 PM (GMT 0)
Oh boy, Tribal, you sure are getting the ole Lyme dance from those docs!!! I am sooo sorry!!! But as someone has already said, most of us get that. Hang in there!!! You are getting some great advice from everyone!!! Only about 40% of those infected with Lyme will get the bullseye rash, and also as someone else has said - bullseye rash is a definite identifier of a Lyme infection.

My journey with tick-borne illnesses started at the ripe old age of 5 or 7 with Rocky Mountain Spotless Fever. I was also one of those who never got the bullseye rash. I have had plenty of those "unexplained" rashes, though!

Simela~
My bad - you're right. Although my gp has been the one to help me to keep from going down the rabbit hole with no hopes of returning. I was the patient that convinced him of the existence of chronic LD!

Mamyou,
You could check with your library first, but then I would go to Amazon.com or even Ebay to see if you could locate a gently used book, before buying it new - if you wanted a cheaper option (I always do!), a;though be sure to do just a tad of homework first - find out what it costs brand new so that you will know whether you are looking at a good deal or not.
Posted 8/23/2010 6:05 PM (GMT 0)
Hi Mamyou and Trav, I guess I am being initiated right away into the weirdness of trying to get treatment for lyme. I did find some low cost clinics close to me and I am hoping to get help there. Have any of you been treated at low cost clinics and if so what was your opinion of care recieved?

For the past two or three days I have been very, very tired, I fee like a chunk of lead basically. Is this part of lyme so early?
Posted 8/23/2010 7:15 PM (GMT 0)
Try getting this BS from health providers for 40 years!!!! It takes a special doctor to listen and if he/she doesn't, then you ask folks like the ones in this forum for names. Keep asking until you're satisfied. I wasn't pushy until my crisis a few weeks ago because I thought you had to had rheumatoid symptoms for it to be really lyme......
Posted 8/23/2010 7:40 PM (GMT 0)
Trib:
If you can go to a clinique that will give you another prescription for more abx, do it asap. I wish I did argue for more abx, but I trusted my GP's judgement. You are ahead of the game compared to most of us here. I came here about a mo ago, when I felt something was terribly wrong. I wish I did my homework 2 years ago, when I found out I was + and not trust my GP, so blindly!
Posted 8/23/2010 9:48 PM (GMT 0)
Tribalrules

Assuming you live here in the U.S. - there should be a local clinic or health department you can go to (immediately) for free or very cheap for treatment. Depending on your state, they may be more easily convinced of your lyme possibility than the usual gp too.  Typically health departments work somewhat in conjunction with the CDC and with the CDC's reporting, some states show higher incidences of lyme - this could work to your advantage.

Good luck.

Posted 8/23/2010 10:19 PM (GMT 0)
Mamyou~ I can't imagine going through this for 40 yrs! I didn't understand what you were meaning by your crisis?

Simela~ you were tested positive for lyme a couple of years ago and they didn't give you enough or the right kind of antibiotics to help?

OneWearyChick~Today I took my chances on a free mobile clinic and believe it or not the Dr. took my blood and sent it off to be tested for lyme. He honestly didn't believe I had lyme because he said there were only 4 cases of it this year in Ohio. He also said that the tick would have had to been attached for 36 hours to infect lyme. I had never heard of that? Seems like I would have noticed a tick on me for that long?
Posted 8/23/2010 10:49 PM (GMT 0)
tribalrules - about my 'crisis'...go to Page two of the forum listings and read "Don't Make Suicide An Option"...that was my lyme story and how I came to get help. Certainly substantiates the weirdness of this whole mess....

OneWearyChick - I hope everybody figures out one of these days that lyme doesn't necessarily come from a tick bite. If that's the case, how are entire families testing positive? Surely every member wasn't bitten....and it's a known fact that dogs and cats have it. It's a bacterial infection so why couldn't you get lyme if Fido gives you a big sloppy kiss across your mouth????

Oops...I'm afraid I'm the whiner and complainer of the forum....All the others offer good, sound advice and websites for referral....
Posted 8/23/2010 11:01 PM (GMT 0)
Don't worry Mamyou!!
You fit right in here!!

I don't believe that any of the tick-borne infections can be passed quite so easily, although I am a big believer in any insect that can 'bite' a mammal and survive to bite another mammal (including us) it has the potential to pass along all kinds of "goodies"!! From mosquitoes to deer flies to all ticks - including the brown dog tick.
Posted 8/23/2010 11:11 PM (GMT 0)
OneWearyChick~Today I took my chances on a free mobile clinic and believe it or not the Dr. took my blood and sent it off to be tested for lyme. He honestly didn't believe I had lyme because he said there were only 4 cases of it this year in Ohio. He also said that the tick would have had to been attached for 36 hours to infect lyme. I had never heard of that? Seems like I would have noticed a tick on me for that long?

 

Obviously he isn't up on things. He may only have knowledge of 4 cases, but it is unlikely for such a decline

 

http://www.cdc.gov/ncidod/dvbid/lyme/ld_rptdLymeCasesbyState.htm

Get your labs, maybe he will humor you and give you the doxy anyway and in the mean time go to another dr/clinic (I would). It is such a shame more doctors aren't proactive to nip it in the bud - now when this window is your opportunity. Go from one to the next if you have to.

OneWearyChick - I hope everybody figures out one of these days that lyme doesn't necessarily come from a tick bite. If that's the case, how are entire families testing positive? Surely every member wasn't bitten....and it's a known fact that dogs and cats have it. It's a bacterial infection so why couldn't you get lyme if Fido gives you a big sloppy kiss across your mouth????

Mamyou, I do believe lyme comes from other means than ticks and I do believe that many domestic animals carry it, knowingly or unknowingly to their owners.

It's okay to whine and complain sometimes, we all need to once in awhile smhair

Posted 8/24/2010 3:35 PM (GMT 0)
onewearychick~ I guess that dr. doesn't read charts very well! Kind of scary!
Posted 8/24/2010 3:59 PM (GMT 0)
It truly is scary how much MIS- information is out there! Most docs think they know 'enough' about tick-born illnesses, when in reality they really have no clue as to what they are really trying to get rid of!
Posted 8/24/2010 4:04 PM (GMT 0)
That "must be attached for 36 hours" has been disproved. There are anecdotal cases that transmission has occurred in as little as four hours. No one knows for sure.

If you get treatment right away and for long enough, you will be one of the lucky ones quite possibly and beat this before it has a chance to become chronic. Do whatever you have to do to get treatment and DON'T rely on tests. They are terribly inaccurate. You have the right to demand appropriate treatment. If you rely on docs, you may lose. You must educate yourself and be your own advocate. Have you tried to find an LLMD (lyme literate medical doctor) in your area?

Posted 8/24/2010 4:52 PM (GMT 0)
Trav and caldonia sun~I am finding that out very quickly as the first dr I saw said I would have a high fever and lots more rashes and like I said the second dr. said the tick had to be attached for 36 hours and he just wanted to prescribe antidepressants for me...gave me the feeling he thought I was just a crazy old lady looking for a disease to have....sheesh! As far as going to an LLMD I can't afford that right now and have to make due with free clinics or low cost ones at the moment. I guess having a bullseye rash is still not proof for these MD's.
Posted 8/24/2010 5:30 PM (GMT 0)
The MD's that think a bullseye rash isn't enough are not the kind of docs you want to be around anyway!! This can be beat even without a LLMD, although it is much more difficult as you will have to be able to think straight & absorb what you read - a pretty tall order for some of us Lymies!! Although, Deejavu is a member that still posts here & managed to direct her own treatment. I am using acupuncture & Western & Chinese herbal meds, as 'natural' means of healing have always helped me to recover much more completely.

I don't believe I have ever had a tick stay attached for a full day & a half!!!! The one that was attached the longest on me was on my pointing finger & was there for only about 4 -6 hrs, as it had attached while I was asleep. I woke up in the middle of the night & 'discovered' it & immediately pulled it off -not using any of the 'approved' methods of course - I was still half asleep!!! By the time morning had come around, I had some really 'pretty' red streaks running up my finger & up the back of my hand. The doc told me I had blood poisoning & said - here, take these. Not knowing any better I never gave it another thought, but that was by far, not the first tick I had attach to me over the years.
Posted 8/24/2010 5:57 PM (GMT 0)
I have heard good things regarding chinese herbal meds and acupunture from friends who went that route for treatment of other illnesses. And that is wonderful it is helping and working for you. Like you I don't believe I have had a tick stay on that long...seems one would notice that? I have found many crawling on me every year during tick season (part of my job required long hours in nature areas).
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