Hey everyone...went to my neuro appointment yesterday...have my appointment with the llmd next Mon. Anyways, he did a neuro exam and found no abnormalities. The good news is that I can rule out MS, ALS, etc. Also, my brain MRI was normal. I am going back for a spinal cord MRI just to be sure. I talked to him about my concern for lyme and he said that if I had a blood test that was negative (which I have), that it was impossible that I have lyme. I told him about how many people have negative blood tests that are diagnosed with lyme and he basically said it was a crock of s@#$. He thinks that lyme specialists who diagnose people without a positive blood test are just trying to make money off of people. Like I said in my first post, my Mom and step brother were both diagnosed with Lyme and never had positive blood tests. My question is, what now? How many of you had negative tests? I know there are more specific tests that the llmd will probably do, but will those definitely come up positive if I have lyme? Any insight would be helpful... Thanks!
Hi sickinVT. I am glad that you were able to rule out things at your appointment.
No Lyme test is completely reliable. Even the CDC who is behind the times on Lyme treatment states that a negative test does not rule out Lyme disease. It should be a clinical diagnosis. If the neuro understood Lyme at all, he would know this. Too many doctors are ignorant about tickborne illnesses.
To confirm or rule out Lyme, you need to see a Lyme knowledgeable doctor.
I can't tell you how greatful I am for heading this advice. I thought I was ruling OUT lyme because my symptoms, even my LLMD were so non-specific (her words). She ran several other tests as well and I came back with full blown lyme through IGENEX labs. FYI, I do not trust this particular doctor, in hindsight and am so greatful I knew to request IGENEX - thank you again, Ticker. I've since heard from others, she's stated that lab choice is inconsequential. Insurance game? I don't know. I was paying out of pocket.
Back to Ticker's advice: To confirm or rule out Lyme, you need to see a Lyme knowledgeable doctor.
I do hope you push to make this happen. I no longer feel crazy AND within the first month of antibiotics, some symptoms have lessened. cj
My son's test have always been negative with conventional labs, and even not highly positive with Igenex.
Now, with that being said--he has had many days where he could not walk w/out pain, can't sit indian style still, unexplained fevers, rashes, severe fatigue, anxiety, sleeplessness, buzzing and ringing in his ears, severe dry eye, throat clossing shut, constipation, severe h'aches, blurred vision, dizziness and loss of balance, shaking, muscle pain, twitching, electric shock pains, hallucinations,and very tender points on his body that cannot be touched to this day.
Everything else possible has been r/o. When he goes on abx, he gets better. When he goes on abx he herxes. When he goes off abx he gets much worse. He has days, many days that he is completely normal and plays sports, runs around and laughs and is no head case--a very active, normal boy with a normal life and normal parents--(well up until about 3 weeks ago--but that is another story.)
There is NO way this is not Lyme disease, Simply no way. He has had more bloodwork, bone scans, MRIs, neuro exams, allergy tests, pulmonary tests, and specialists visits from all the "best" in the county's docs than anyone I know or have met. He has been sick for three years.
Believe me I have been where you are with the doubts--no one was going to scam me or use my beloved son as a guinea pig!!! You will be tested at every pass with conventional doctors saying if you have a negative test or test that you do not have Lyme disease. Simply NOT true.
You must read lots of information about WHY it is not detected in so many. There are valid, scientific reasons for this. It is not quackery--it is basic science. Once you understand why it is not being detected, it is much easier to breathe easy and stop questioning it so much in your head.
Then you must pay attention to your symptoms. Only YOU know how you are feeling. Only YOU know what has been r/o as far as aother possibilities--and things like fibro and cfs are a joke of a diagnosis!! It's what they say when they do not know, and do not care to get knowledgable about. It's also something there is no cure for which keeps you on meds.
Specifically antideprressants, anxiety meds, DMARDs, and arthritis drugs. The drug companies BIGGEST money makers. No cure, and you keep them in businees with a need for these drugs. They have got you, the docs, the insurance companies, and our leaders believing this crap!!!---but science is proving SO many of these diseases have a bacterial cause. BACTERIAL??? Well, we have abx--we can get bacteria!!!
Of course they can! But that doesn't keep you coming back again and again, now does it? The reason we do not have better tests for Lyme? See above--that's why!! Get yourself well and get educated about what I call "the real deal" about Lyme disease. Fact is it's HUGE. HUGE!!! Fact. Not doctors yammering it's not, and not "quack" LLMDs saying it is. It is a fact. Hang in there and get informed--knowledge is power!!!
I saw a neurologist late last summer and this is what he told me. He said that Lyme Disease can cause damage to certain areas of the brain that are so small an MRI cannot pick it up. I also had a normal MRI like many of you. What is then needed then is a SPECT imaging which shows the cerebral blood flow and consequently the metabolic activity patterns of the brain. This test, allbeit moderately expensive, can give you and your doctors a true look at what it is occurring inside the brain and drug treatment choices can be made accordingly and specifically to your needs. It is an amazing technological breakthrough. I, myself, didn't bother to get one done because I'm so intolerant to those kinds of medications anyway, it wouldn't help me to see what happened to my brain and then not be able to do anything about it. For many of you, it could help though...ask your doctor about doing this.
ARRRGGGHHHH!!!!!! Ok, I am better now...sorry sickinVT - but sitting here sick in NC and having to revisit my anger at the medical community makes me CRRRRAAAAZZZZZYYYYYYY!!!!
That is not directed at you sickinVT - I just haven't found a good way to channel this negative energy I am walking around with yet.
So, my story is this. Got accutely ill in May 2004 after experiencing some smaller issues for about 2 years...but these small issues would come and go. Anyway, saw over 15 doctors from May 2004 to October 2004. I had two ELISA tests for Lyme. The first was from LabCorp here in NC - the other was from an extremely GREAT Infectious Disease Doctor from John's Hopkins - I hope your neuro heard that - JOHNS HOPKINS - just in case he didn't hear the first time Anyway, the doctor at JH sent my bloodwork - lyme and all coinfections - including other bacterial infections I had never heard of through to QUEST Labs. All Negative. All of them. But JH Infectious Disease doctor said I think you have a tick borne illness - here is a big supply of doxy until you can get home to NC and see someone else to figure this out. I was on vacation - worst vacation I have ever had - but nonetheless was away from home. I hope your neuro caught this too - JOHNS HOPKINS Infectious Disease doctor CLINICALLY DIAGNOSED me with tick borne illness.
I then got home and found an LLMD. My bloodwork was sent to IgeneX Labs in Palo Alto, CA - It turns out I was equivocal for lyme IgM antibodies (the ones in early infection), EXTREMELY positive for lyme IgG antibodies (which are found in late infection - Chronic) and my Ehrlichia both hme and hge were positive as well as Babesia.
Ok, so I could have died, could have permanent damage from this. That is one point. The other is that the nature of the lyme bacteria is extremely complicated and is not easy to test for...thus it is supposed to be a clinical diagnosis.
Because of attitudes like the one your neuro has it was even hard for me - sick as a dog for 7 months, lost 15 lbs., bruising all over my legs, couldn't breath well, chest pains, periods all off, migraines, headaches, eyes starting to track strangely and spasm at times, major digestive issues, vascular issues, dizzy, body temperature low, blood pressure extremely low, the list could go on forever - to accept that this could be lyme and coinfections even with positive tests because they were not done by an FDA approved lab.
Did I mention I was a perfectly healthy 34 year old just a year ago before this happened.
So I started treatment because I was desparate and then I realized that I wouldn't have responded so well to the antimalarial drug Mepron if it was not malaria or the coinfection babesia I was dealing with and I had tested negative for malaria....So I felt more confidant that IgeneX was right on the money and that LabCorp and Quest basically know squat about testing for tick borne coinfection just like our mainstream doctors.
So pardon my anger - it is not directed at you but at your Lyme ILLliterate neuro. It kills me how some doctors can throw around the majority accepted beliefs - while having done no research of their own. I wonder what his explanations to me would be. Thanks to other doctors that have the same opinion as he does our medical system does not have a grip on lyme and patients are left wondering what philosophy is right.
It is sad there is this polarization and patients are caught in the middle and as the medical profession takes its time and debates our bodies are left under attack.
Sorry SickinVT - caught me on one of my frisky days...To answer your neuro and your question - These were my test results...
Two negative ELISA tests which I had only a 30%-50% chance of being correct anyway since I am Chronic...multiple negative test for coinfections
One Positive from Western Blot and two positive for coinfections...
I am just really disturbed to hear your neuro preaching this without taking any of the variables into account...it just shows how little he knows about lyme...
1) How long has person been infected? That would determine the outcome of an Elisa test. Did the Elisa test for IgM antibodies only or IgG's too?
2) Was it the Elisa or Western Blot Test?
Lyme truly is a clinical diagnosis using pretty definitive symptoms to diagnose.
If your neuro knew anything about lyme he would ask these questions - He would also ask these questions if he was a skilled clinician in any respect dealing with any issue and just goes to prove he is practicing medicine with absolutely no component of creative thinking what so ever. I would find another neuro just for this reason alone.
I am sure your neuro would think my LLMD is a charlatan despite the fact he is a respected Infectious Disease Doctor. He is not just some witch doctor...he actually was looked down upon many years ago for his aggressive treatment of AIDS patients and guess what - now he is winning awards for his work - actually accepting bronze placks in fancy big city hotel banquet rooms...SO I am living for the day when his lyme work will be recognized too and all these lilly-livered, pansy M.D.'s will be administering his protocols to lyme patients and understanding that 3 weeks worth of abx will not treat a new lyme infection effectively.
I feel better Sorry SickinVT but thanks for giving me a window to vent...I really needed that!
Last edited by ncgirl88; 03-04-2005 at 02:02 PM.
Reason: add info...