Hi to all,
I have MS and have been treating it because I found it's an infection. Yes, I have Lyme Disease.
My story is about my neighbor who has CFS. and Fibro, and IBS.
It' also about Lyme Disease.
I am not posting to start trouble or controversy; just sharing this woman's story for anyone who is venturing into reading outside the conventional box regarding these illnesses.
Please ignore this if you're not interested.
I will be as brief as possible.
I live in a suburb, an older neighborhood, and have new neighbors behind me. Our yards meet in the back and thankfully my new neighbors have begun the "clean-up" of the woodsy type areas that only I noticed....well, as luck would have it this spring, I was the neighbor NOT doing my part to keep the ivy and other incontrollable weeds from taking over!
I saw my one neighbor apologized for this and told her I have Lyme Disease and crawling into this mass of "stuff" wasn't going to happen. She asked me if I am fatigued because of the MS and I mentioned I was getting better, but yes, fatigue has been my constant friend my entire young life!
She then told me about her: how she had to stop teaching, and doesn't function as a complete person anymore. She has been to 25-30 different docs and is told she has CFS, Fibro, IBS, and the majority say a lot of her symptoms are in her head! She went through sleep apnea docs, slept with the machines, had a doc make a device for her head, neck, spent thousands of dollars over the years,,,,and still is suffering daily.
I mentioned going to a doc who specializes in Lyme Disease...she said she had a lyme test, an ELISA a few years ago (she gardens) and tested negative.
I explained that most of us do test negative: and yet most of us are underdiagnosed!
She did go to a LLMD, was tested and tested POSITIVE,,,,
Her new doctor told her she will get better.
She now is a statistic: WOW, I didn't test CDC positive. I tested negative (with bands positive).
She's angry, she's sad; she wonders how could all these doctors have missed this?
She's considering calling our local newspaper, and telling her story.
She is most upset about these specialists through the years telling her it's in her head! Telling her she's depressed. She threw out all her meds with Steroids, doctor’s orders. And she intends to throw out all her anti-depressants!
The day before going for her test results, her best friend told her; you don't have lyme,,,,you already were tested. A lot of "why" you feel so bad is because you are depressed!
She is looking forward to speaking to her friend with her CDC test results in hand!
So, why this post? If anyone has been tested for lyme,,,in the conventional way; perhaps you too will re think finding a doctor who understands this bacteria and all the co-infections that go with it; and give yourself another chance to get an answer.
Wishing you all health,
tory from the lyme board
Clickable: LUPUS INFORMATION & LUPUS RESOURCES.
Co-Moderator: Lupus and CFS Forums
It is unfortunate that we have to go through "so" much in order to get on a road to wellness.
and yes, for all the newbies it's also very important to understand that "testing alone" doesn't a diagnosis make.
Especially when it comes to lyme testing...
If I may ask: what type of Lyme test did you have?
I also had a negative result,,that's why I'm curious.
I used steroids for many years also, and I can say I always found them to offer such sudden relief too; like you I used to look forward to steroids!
thanks for the reply,
I've also been curious about this. I asked my Rheumatologist about it TODAY and she said the test can come out negative if you are tested two months after you get lyme, after that it will show up positive. I don't know whether this is true or not... ? I keep hearing about people getting false negatives for lyme and it makes me wonder!
The way conventional testing goes: if you have a bulls eye rash and get and ELISA immediately you have a 50-50 chance of testing positive. Research found even a percentage of these folks test negative.
why? testing is unreliable..
After a short few weeks our bodies don't recognize the bacteria, and we test negative; having this bacteria for years, we really don't have a chance for these tests to reveal anything.
Personally, I figure I've had it for 2yrs, and also tested negative. Lyme doctors believe in "chronic" lyme, conventional docs don't recognize the term.
Testing is a hardship, and as the FDA website states: Lyme should be a clinical diagnosis.
MS symptoms, like CFS symptoms like Fibro symptoms, etc can be clinically diagnosed because lyme is the great imitator.
How do we get through all the confusion? Find a lyme specialist, a doctor who is a member of ILADS. They allow the patient to dictate if treatment needs to continue longer than 6 wks.
It's funny, but kids with ear infections and teenagers with acne are on much longer than 6 wks of antibiotics...these doctors aren't scrutinized for that.
Why then is the Burgdorferi Borrelia infection limited to 6 wks? and why is there such a concern about becoming resistant to abx when treating for lyme? when there is a persistant infection abx has a job to do. Acne sufferers don't get resistant, nor do we.
I wish you luck in finding your answers, join us on the lyme board if you have questions. We all have different stories to share and the difficult road to wellness.
Many of us don't remember a tick bite or rash; this is more common than you'd think. Without seeing a rash makes us doubtful that this bacteria could be our problem. I never had a rash or ever pulled a tick off me..
Join us on the Lyme board, we can share the symptoms of Lyme. Burgdorferia burrelia also includes co-infections. Unfortunately, testing for both Lyme and the co-infections aren't very good. Many of us test "negative" for Lyme. Our immune systems can't make the antibodies in order to recognize lyme.
Most important thing I can offer is: Lyme like so many other auto-immune diseases is a Clinical diagnosis. Then the doc looks at test results, etc...
There are only a few labs that specialize in Tick-Borne Diseases and test for all the bands. The ELISA titer is simply unreliable.
Symptoms are Most important; both the CDC and the FDA websites state this.
again join us and we can offer you lots of information to get you started!
Ticks carry the lyme bacteria, but there are lots of co-infections that go along with it...and these are, well as bad as Burgdorferia Borrelia..some of them are: Babesia, Bartonella, Mycoplasma, Rocky Mountain Spotted Fever(can be fatal), Erhlicia,,,and there are more.
65% of us with Lyme never saw a rash or a bulls-eye ring! I'm included in that statistic! People with the bulls-eye rash and beginning symptoms test negative! hmmm, yup! testing is unreliable. That's why lyme is a clinical diagnosis!
When being treated for lyme docs treat for all the co-infections!
As for herbal therapy? yes, there are...but most us get into that as the bacteria load in down!
Vitamin C will only "help" keep your immune system strong! No harm imo, with Vit C it just won't kill the bacteria.
This bacteria and co-infections gets inside our cells; they replicate, and take over our cells!
Symptoms such as fatigue, head fog, JOINT pain, numbness, tingles, night sweats, OCD, on and on are Symptoms of lyme!
RMSF can infect you if the tick simply WALKS on your skin!
Lots to understand, I highly suggest you go to:
ask some questions, post under Medical Questions...they will offer you lots to read and you might be surprised to read "others" that are just like you!
ilads.org is another wealth of info...
wow, have a great time in Europe, and be well!