posted
Hello everyone. I just registered to this blog because i have many questions. Just a bit of background first: I've been not feeling well for quite some time - 10 years probably. Started with some migraines and bathroom issues that led to finding out that i had a gluten intolerance. Everything seemed ok for a while as long as i stayed away from gluten. Then i started to have other strange symptoms appear. Things like numbness and tingling on my left side. Face, arm, hand, leg foot. Sometimes feeling so week i could hardly pick up a gallon of milk, and started walking mostly caring my weight on my right for fear i would fall. I was also starting to have memory problems, fine motor skill issues, speech difficulties just to name a few. This led to many tests and to many doctors. Every test has come back completely normal. MRI, chest CT, heart, thyroid, hormones, etc. The most recent was a lyme (ELISA) test as a last resort. Absolutely everything came back NORMAL! So my question is . . . Is it possible to have Lyme when "on paper" you look like the picture of perfect health?
Posts: 3 | From Michigan | Registered: Mar 2011
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posted
Yes you feel bad and everything is normal on labs thats when you should look for lyme .ELISA is not worth a penny is less then 10%sensitive to lyme Do western blot at Igenex. Find a LLMD ASAP. Take care
Posts: 482 | From Nebraska | Registered: Feb 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Oh, yes. People with lyme disease get perfect bloodwork. That was me for 10 years. Perfect thyroid test. Also a perfect colonoscopy, ultrasound of the uterus, complete body scan, and on and on.
And, just so you know, the lyme tests miss about half the people who have lyme disease.
Because of this fact, lyme disease has to be diagnosed by a doctor who understands lyme disease. He goes by your story, your symptoms, your history, a physical exam, and your lyme test--everything all together to make your diagnosis.
This is not just my opinion. Read it in the Lyme Treatment Guidelines published by Dr. Joseph Burrascano, lyme disease guru and lyme pioneer, who treated people with lyme disease for nearly 25 years. They came to him from all over the world because of his success in treating this disease.
Here is what he says in his Guidelines:
"I must very strongly emphasize that all diagnoses of tick-borne infections remains a clinical one.
Clinical clues will be presented later in this monograph, but testing information is briefly summarized below.
In Lyme Borreliosis, western blot is the preferred serologic test. Antigen detection tests (antigen capture and PCR), although insensitive, are very specific and are especially helpful in evaluating the seronegative patient and those still ill or relapsing after therapy. Often, these antigen detection tests are the only positive markers of Bb infection, as seronegativity has been reported to occur in as many as 30% to 50% of cases. Nevertheless, active LB can be present even if all of these tests are non-reactive! Clinical diagnosis is therefore required." (page 5)
"DIAGNOSTIC HINTS Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
When he says that lyme is a clinical diagnosis, it mean that the clinician or doctor has to make the diagnosis looking at the person's history, symptoms, and (one factor) test results. It means that the test results CANNOT make the diagnosis.
Look at pages 9-10 of the Guidelines. You will find all of your symptoms listed there.
Lyme eventually affects the brain in every case. The longer you are ill with it, the more symptoms you will accumulate and the more bodily systems will be affected.
Because I never saw an attached tick or got the bulls eye rash, I went for 10 years with lyme disease, going from doctor to doctor trying to figure out what was wrong with me.
The solution is to get to a lyme expert. That doctor will make your diagnosis the Burrascano way. Your response to treatment is another proof that your ailment is actually lyme disease.
I cannot emphasize this enough. The doc is the key to getting rid of this disease. Many doctors treat lyme, but only a few know how to get rid of it for a person.
Get the names of some good lyme doctors from this forum (post in "Seeking a Doctor") and also from your state's lyme support groups (see Support Groups on the left side of the page).
Also, read and study the Burrascano Guidelines. See where he says the ELISA is a waste when it comes to testing for lyme disease.
From page 7:
"The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. I therefore recommend against using the ELISA. Order IgM and IgG western blots...."
Lyme doctors order Western Blots from a lab in California called Igenex. This is a lab that specializes in tick borne diseases. Lyme doctors also test you for other diseases the ticks carry, called coinfections. Rarely does a person get just lyme alone from their tick bite. For example, in Maryland, everyone with lyme disease gets babesiosis and bartonella also.
A good lyme doctor treats the lyme patient for all suspected tick-borne diseases based on symptoms rather than blood tests. We just don't have reliable tests for any of these diseases.
Here is a lyme video for you to watch. It was done by a Boston TV station about 2 years ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
Good for you for finding this site.
It is now 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life. That is thanks to a doctor who followed the Burrascano Guidelines.
Get a good doc and get well. Keep asking questions and we will help you in any way we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you so much for the information and support. Just hearing from two people allows me some dignity back that this is not just "all in my head".
Posts: 3 | From Michigan | Registered: Mar 2011
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You sound just like me. Felt better gluten free temporarily, then symptoms increased.
The ELISA is only 50% accurate. Lyme is a clinical diagnosis anyway. Please post in seeking a doctor to find a Lyme specialist near you for proper diagnosis.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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