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tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/1/2007 7:15 AM (GMT -7)   
 

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,,,,

CDC 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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/1/2007 10:49 AM (GMT -7)   
Tory thanks for sharing your story and your neighbor's story. It really illustrates how very hard these diseases are to diagnose, especially since they share so many of the same symptoms. For anyone new who comes here I always encourage them to exhaust all other possibilities before accepting a cfs diagnosis and always encourage them to see a LLMD for the proper testing and interpretation of the tests.

It's sad that so many of us have to go through years of not knowing what is wrong and to have some docs try to tell us it's all in our heads. I really encourage people to keep looking for answers and for a doc who will really listen and take things seriously.

I went through all the Lyme testing back when I developed cfs and my cfs turned out to be a result of having EBV and never recovering from it. When I developed lupus symptoms a few years ago I again went through lyme testing again just to make sure. I have heard that people with Lyme disease react poorly to prednisone. For me, prednisone has been my miracle drug (although I hate the side effects), so that helped to ease my mind that I didn't have Lyme disease. I do know that there are many many people out there who have undiagnosed Lyme, which is terrible. I had a co-worker who found out he had Lyme Disease, but unfortunately it took so long to get a diagnosis that his symptoms became chronic and some days he was in a lot of pain.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/1/2007 11:40 AM (GMT -7)   

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,

tory

 


Ra Ra
New Member


Date Joined May 2007
Total Posts : 12
   Posted 8/2/2007 9:58 PM (GMT -7)   

 

 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!


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/3/2007 6:18 AM (GMT -7)   

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. :-)

tory

 


Zilpha
New Member


Date Joined Aug 2007
Total Posts : 5
   Posted 8/8/2007 3:15 PM (GMT -7)   
I also have been diagnosed with CFS, neurally mediated hypotension, postural orthostatic tachycardia syndrome ( POTS ), IBS, Interstitial cystitis and severe allergies and hives ( dermographism and pressure hives ). Oh, yeah, and TMJ. I feel that they're all really connected ( the low bp prevents enough blood flow to the brain so all sorts of things can go wrong, plus, who could really have that many different things wrong with them? ) and I have been tested for lyme disease and it came back negative. I'm wondering if I should be tested again, but can lyme disease cause the low blood pressure problems? I know a long time ago when I was initially trying to find out what the heck was wrong with me, I looked up the symptoms but I can't remember them now. I was struck with a severe case of mono 20 years ago ( I'm 36 ) and never recovered. Taking blood pressure meds to constrict my blood vessels ( midodrine ) and drinking lots of water throughout the day while eating salt helps, I don't pass out everyday anymore. For the last 5 years I have been able to work as a special ed teacher assistant ( I LOVE my job ! ); I started out volunteering a few hours a day, then was able to work part time and now am up to 6 and 1/2 hours a day. It was very hard but I love working. I'm exhausted when I get home and my husband cooks and helps out a lot with the housework ( he's amazing ). I can't exercise; when I'm able to any housework ( like vacuuming, laundry, dishes ) I consider this my exercise. If I try any real exercise I pay for it for days after. I used to be very active before all this happened, weren't we all. I would be so angry to find out that all these years I had something that could have been treated, but at the same time, extremely grateful that something real could be done - not just covering up symptoms with lots of medications and still struggling through each day. Let me know what you think. Thank you and take care. God bless.

lebowski
Veteran Member


Date Joined Jan 2007
Total Posts : 593
   Posted 8/8/2007 9:24 PM (GMT -7)   
there was an article in cpnhelp site about a research that they d found chlamidia pnemonia in almost 100% of the cfs sufferers .. wish i d bookmarked it .. that cp is also very hard to find with commercial tests .. i dont come to cfs page of this site very often and u guys probably know about that research here but i wanted to be sure ..

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/10/2007 7:10 AM (GMT -7)   
Zilpha,

Geez, sorry to hear you have so many days of feeling lousy!

Do I think you should be retested for Lyme Disease? yes.

Actually, you should find a doctor who we call Lyme Literate Doctors in your area...they will not only test you for Lyme, but run full blood testing for things like CD57, Immune Complexes, CIQ to name a few.

Testing for Lyme: all testing is unreliable..makes getting a "positive" test almost impossible...especially if you were tested by a large commercial lab using the ELISA titer! People who test there with a bulls eye rash come back negative! hmm

Finding a doctor, reading about Lyme Disease: becoming your own advocate is your best defense...

You can get better!

lymenet.org
ilads.org
publichealthalert.org

are good places to start!

wishing you the best,
tory

BBmd
Regular Member


Date Joined May 2007
Total Posts : 76
   Posted 8/10/2007 2:04 PM (GMT -7)   
I felt like a ton of bricks had been dumped on me, soooo fatigued and weird stuff going on................I went to lots of doctors - good doctors- I kept saying "I think I have Lyme".......but tests would not give a 100% positive result...so they turned me away , one guy shouted @ me "stop chasing Lyme"............so then when my friends and family would bring it up I got angry ....I remember shouting @ my poor mom"It's not Lyme - the tests are negative"....

so long story short - it was lyme, eventually I did test positive - But the Lyme doc (who has studied the organism that causes the disease since the 70's) told me a large number of folks with the disease won't test positive..........

the fact is - a percentage of people in here have it- same with some other forums............I always wanted to beleive the doctors - they are smart, nice with white coats.and they are good @ what they do - but they are given bad information about this particular infectious disease.

One of my best friends is an MD in New Hampshire- or was until Lyme.........she has been soooo ill - but improving with treatment. I bring her up becasue she told me she was totally mis-informed about the disease, and even fears now that she did not treat or diagnose sick people correctly.


People from the lyme forum feel compelled after uncovering the layers of unknwn - to share with others, we have all been down the road- of being told "People get Lyme on the internet"............and that it does not exist ........and that folks who talk about lyme are quacks. It is good to share this info. We know you are suffering, and maybe ,just maybe this is why.

auroara
Regular Member


Date Joined Jul 2007
Total Posts : 20
   Posted 8/16/2007 10:28 PM (GMT -7)   
I have also heard about Lyme disease going undiagnosed. I have a question, how do you know if what you have is lyme disease if you don't remember getting a rash and the typical side effects of the tick bite? I feel ignorant but have been wondering. I have just been diagnosed with Fibro. Thanks.

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/17/2007 5:27 AM (GMT -7)   

auroara,

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!

the best,

tory 


auroara
Regular Member


Date Joined Jul 2007
Total Posts : 20
   Posted 8/17/2007 8:48 AM (GMT -7)   
My next question would be about the bacteria. Can we get it from other places not just ticks? My mom thought this was my problem but I told her I never had a rash or tick bite. My doctor didn't mentions it and was very vague like the others mentioned. Im about to go abroad to study and well I can only hope that I just have fibro. brough on by a lot of things I've been dealing with. But its hard to be sure. I have a follow-up with my doct upon my return to the states and I will mention it then. And hopefully get onto antibiotics. Are their any natural antibodics, is vitamin c one? i feel so ignorant asking that question but ya'll would know. Thanks again.

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/17/2007 6:00 PM (GMT -7)   

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:

www.lymenet.org

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...

publichealthalert.org

wow, have a great time in Europe, and be well! yeah

tory


twinofdar
Veteran Member


Date Joined Mar 2006
Total Posts : 1837
   Posted 8/22/2007 5:45 PM (GMT -7)   
Aurora: Many scientist and Dr's think that Lyme can be transmitted through other insects and spiders. They have found the germ in spiders, black flies and misquitoes.

It can also be passed "congenitally" from mother to baby. Lyme Spirochettes have been found in semen, tears, breast milk and saliva, so some Dr's think it may be "contagious" and sexually transmitted.

One guy even says it's "airborne" and has a book coming out soon! I think that's taking it a little (LOT) too far.

I definately believe it can be transmitted by other means than "ticks" but the jury is still out on exactly how. I've been infected for many years, as has my twin, but we are both recently diagnosed. I was diagnosed in 2/2006 and my sister 2/2007. Neither one of us remembers a tick bite or a rash.

It's a very strange and controversial disease but the good news is - it's treatable! I now know of quite a few people that were very very ill (bedridden) and are now leading normal healthy lives.

Hugs from a "Lymie" who likes to visit from time to time:

Molly
Too much of anything is no good - moderation is the key.


auroara
Regular Member


Date Joined Jul 2007
Total Posts : 20
   Posted 8/22/2007 6:56 PM (GMT -7)   
I will definitely talk to my doctor when I return. I've been bothering her a little too much lately about changing my medication and well if I had time to schedule an appt. I definitely would see her about it. Thanks so much for all your information. It's been wonderfully helpful. I'm starting to get slightly paranoid that maybe this could be my problem.

twinofdar
Veteran Member


Date Joined Mar 2006
Total Posts : 1837
   Posted 8/24/2007 7:23 PM (GMT -7)   
Auroara: Remember there's always support on Helaingwell! You are not being paranoid - just being mindful of your health which is a good thing - and it sounds like you are doing a good job.

Many Hugs

Molly


Too much of anything is no good - moderation is the key.

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