posted
I recently discovered this site . We are seeking a diagnosis for my 18 yr old son. Based on the Lyme symptom list , my son has 23 of the 38 symptoms which have been present for nearly two years. He's has 4 MRI's within the last six months , and given an endless list of scripts for pain/muscle relaxtion. At the suggestion of a massage therapist and accupuncturist I asked our FP if they had considered lyme. To date he's only had one " titer" test which came back negative . I've insisted a Weston Blot be performed. We've been referred to a local neurologist, but I fear we'll be led down more endless roads of tests only to be told " something is going on..we don't know what..here's another script " We're in the RTP area in NC. Any guidance is appreciated.
Posts: 32 | From NC | Registered: Jan 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi PDavis!
The neurologists will do the same thing -- negative "titer" (that's an ELISA test) and "you don't have lyme."
They fail to consider that about 75% of people with late lyme are negative by ELISA but positive on western blot. Sometimes WAY positive!!
However, don't get a standard western blot (even if they'd do it, which is questionable). Get one done at IGeneX (website by same name). Tests 188 and 189. You must pay up front then ask insurance to reimburse. They send you a blood draw kit plus a self-addressed FedEx mailer. You take it to your local lab (after getting ANY doc to sign off on it) and do it.
I would strongly suggest you post in "Seeking A Doctor" to consult with an LLMD. Neurologists have joined ranks in declaring there is no such thing as chronic lyme, despite overwhelming evidence to the contrary.
Best of luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter is 19. She has been sick for several years, in treatment for two. Getting the proper diagnosis will take a special doctor.
As Michelle said, post in seeking a doctor. Go ahead and go to the neurologist, it will give you some back up. My daughter had migraines for a couple of years before her Lyme diagnosis.
When you go to every specialist for all the body systems that are failing, you pile up a nice supply of syndromes to call your own.
Give your son hope. It's a long road, it takes commitment and courage, but my daughter is taking some college classes now. She still has a ways to go, but two years ago, she could only walk from her bed to the couch.
Take care Kelmo
Posts: 2903 | From AZ | Registered: Feb 2006
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bettyg
Unregistered
posted
welcome mom, quoting you...
" We're in the RTP area in NC." what does RTP mean
I've just sent you my lengthy newbie's package of info galore. do a EDIT, FIND, and type in IGENEX for very detailed info on the western blot igm and igg.
glad you found us. post in seeking dr. and we'll help you. your state has LLMDs, lyme literate mds!!
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Welcome to this website. I'm sorry about what your son is going through. All of us here know how difficult it is.
You want to get to an LLMD, which a term that means Lyme Literate Medical Doctor. It is not an official medical specialty, but used to describe doctors who are really knowledgeable about treating Lyme disease.
Unfortunately, NC is not an easy place to find a doctor. You will probably need to go out of state. There are numerous LLMDs in Virginia and one in SC.
If you post in the seeking doctors forum you will get suggestions. Many doctors will work with somebody out of state by having phone consults in between office visits.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
With all that expensive testing, has anyone checked a vitamin D level? If not, now would be a good time.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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posted
My 15 yr. old son was ill for 6 years before we found out he had Lyme/Babesiosis and Bartinellosis. We saw many doctors (="ducks") who wasted our time and money and were given many diagnoses, even the classic "it's all in his head" one!
This website has been such a wealth of knowledge for us and for so many suffering with this terrible disease. I thank God for bringing me here and for all those who take time to share information to help others.
You need find a LLMD and go where they are. If there are none nearby or in your state (we have to go out of state to see ours). Look/post in the "Seeking a Doctor" section and check your state's support groups for recommendations (see left side column and click on "Support Groups").
My son is slowly getting better under our wonderful LLMD's care. Please take your healthcare into your own hands and never give up - take one day at a time. God bless you.
Posts: 9020 | From Illinois | Registered: May 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME- sounds like you may indeed belong here on your sons behalf!!! YES Lyme, especially neuro Lyme, can be blood negative in some people & spinal negative in 90% of people!!! That makes negative spinals the rule and positives the exception! Best wishes, Sarah p.s. Here's an old article relating to that:
From "The New York Times", 1993. Lyme Disease: Does It Really Linger?
Those who claim long-term ailments pose a puzzle. By Elisabeth Rosenthal
From her bed at Northern Westchester Hospital Center, Vicki Logan begs to differ with academic scientists who claim that there is no such thing as chronic Lyme infection and that Lyme is cured with at most four weeks of antibiotics.
Since 1987, Ms. Logan has battled headaches, fevers, fatigue, progressive paralysis, seizures, periods of dementia and memory loss so severe that she remembers only the previous three weeks out of the last year. For much of her illness doctors told her she could not possibly have Lyme disease and prescribed no antibiotics.
Two years ago Dr. Kenneth Liegner, a Westchester internist, decided to buck conventional wisdom and try giving her prolonged courses of antibiotics that could kill the Lyme spirochete: she improved somewhat during each course of the drugs, and relapsed when they were stopped. Dr. Liegner became convinced that Ms. Logan had chronic active Lyme infection that could be controlled but not cured through daily drug treatment.
Others, including consultants at the Mayo Clinic, disputed the diagnosis, saying that after months of antibiotics, Ms. Logan- if she ever had Lyme- had certainly been cured. But recently, Dr. Liegner was vindicated: scientists at the Centers for Disease Control andPrevention in Atlanta found the Lyme spirochete, Borrelia Burgdorferi, swimming in a sample of Ms. Logan's spinal fluid.
A handful of cases like Ms. Logan's are challenging conventional assumptions about Lyme disease and igniting a fiery debate about the usual course of this increasingly common infection: Are disastrous experiences with Lyme like hers the rare exception or the rule?
The Lyme organism is extremely difficult to culture, particularly when the disease is advanced, so doctors are left relying on indirect and imperfect tests to determine if a patient with continuing symptoms is infected. The current Lyme test detects the patient's immune response to the parasite and is prone to false readings. In most cases it is impossible to say with certainty that a patient harbors the bacterium. Even among patients whom all doctors would agree have Lyme infection of the central nervous system - who have a known tick bite, a typical Lyme rash and test positive on all current tests - only 10 percent have spinal fluid samples in which scientists can find the germ.
"In most infectious diseases, you don't diagnose until you identify the organism - which is the sine qua non- anything else is inferior," said Dr. Mark Klempner, a Lyme expert at Tufts-New England Medical Center. "But in many cases of Lyme we're stuck. We can't find the bacterium. Until we have a better diagnostic test that actually finds or measures multiplying bacterium, we're going to have problems knowing which if any of these patients have an ongoing infection and who might benefit from treatment."
Researchers have come to believe that chronic Lyme may be difficult to detect and treat because it is caused by a very few free floating organisms that are confined to the joint spaces and central nervous system- sites that many antibiotics do not reach. Recent work in Dr. Klempner's lab has shown that the spirochete may spend at least part of it's life cycle inside cells, where they are similarly protected.
Unfortunately, scientific advances have not clarified whether the small number of well-documented cases of chronic Lyme represent anomalies or the tip of a huge iceberg.
There are similarly loud disagreements about how often people who test negative on the standard Lyme antibody tests can nonetheless have Lyme disease. It was because Ms. Logan initially tested negative on this test that she went untreated for years. The newer lab methods have proved that this is possible, but no one is sure how common it is.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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