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Lyme Disease Message Board


Lyme Disease Board Index


Hi qingche, welcome to the board!

Yes it is possible to have Lyme when your test is negative. No Lyme test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable and the one most doctors run first. Is this the test you had done?

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. The Lyme doctors I know of in NY who come highly recommended are Dr. Richard Horowitz in Hyde Park and Dr. Kenneth Liegner in Armonk. I have heard that Dr. Jeffrey Morrison in New York City is knowledgeable, but that is all I know. I don't know how aggressively he treats.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

I hope you can get some answers soon. Good luck!
Hi Everyone....

I'm a noobie here..but I thought I'd chime in.

Dr. M basically saved my life.

I was gonna say hello more formally but i guess this is a good spot to do it since we're talking about NYC LLMD's.

2 1/2 years ago my big toes went numb....couldn't figure out why but i knew it wasn't a good sign. Kept putting of going to a doc....bad move! As I am a dj/producer who travels every weekend I kept procrastinating. The day of leaving on a flight to belgium my scalp went numb. About 2 hours later I had difficuties walking along with heart palipitations. Fast trip to the emergency room. Hospitalization followed for 4 days while the dumb asses there tried to figure out what was wrong with me. First they said HIV. Then they tried to pin MS. 3 Cat scans..and a spinal tap later(btw don't ever let them do this!) A doctor came in and whispered, as he didn't want the other docs to hear, that he knew what i had. He questioned my wife about my moods..and one that kind of tripped me out..."does he fall asleep 2 minutes into any kind of activity that requires sitting down and staring? As in watching tv or videos" I thought it was just a manly thing to do! HAHAHAHAHA. He told me he thought i had lyme but the infectious disease doc would be afraid to diagnose this. He was gonna check me out immediately before I got pegged with an MS diagnosis. He threw on a bag of Rocephin but didn't keep me on. To make a long story a bit shorter....He put me on Doxy 250mg 2x a day. This got me back on track for a month. Then I collapsed again.....the brain fog was ridiculous. Major neurological issues. Unfortunately this doc's hands were behind his back as he was being investigated by the state for diagnosing too many people with lyme.
His options were limited. A classic situation if a doc takes insurance. I dealt with this for a year and after no improvements and a real bad back rash due to the doxy...I went searching for an alternative. I had to come out of pocket if my realisation of getting better was going to come to fruition.
Dr. M came recommended by a certain org that posts Burrascano's guidelines. Went to see him and he immediately ordered the Igenex tests. Something that the dumb folks at the hospital didn't do. Came back Pos.
He recommended a stronger dosage of doxy...but this soon failed to work. So this past Sept. he put me on this regimen:

Omnicef 1200mg daily
Biaxin 1000 mg daily
Nystatin 2x daily
CoQ 10 400 2x daily
Phosphatidyl Choline (2) 2x daily
vitamins b1 / d3 and b12 shots 3 times a week
Essential Formula Probiotics
Mineral 650
L-cystine
and DMSA for a highly elevated Mercury level after a urine test

this had an immediate effect...spontaneous....herxing was horrible. But i went from not being able to walk to the corner store to fully functioning. I was clear headed enough to finish up an album i was working on. A few setbacks, as i've seen with other LD sufferers, occurred in Oct. The wooziness and light headedness did a slow return though not as bad as it once was....it was more like a film. Turns out I had a systemic yeast infection which gives you Neuroborreliosis symptoms. He took me off the biaxin and introduced diflucan for 30 days. Instant miracle! Film was gone. Went back on biaxin but 4 weeks ago the film began creeping up. Back on diflucan again...and once again the film cleared up a bit but not much. These last 2 weeks my tongue became numb...but it was because of the buildup in my body of diflucan...off i went and back on the biaxin. I'm functioning again.

With all that's happenned lately...I'm beginnin to believe that there might be something to Dr. Fritz Schardt's theory.

Now Dr. M's been trying to get me on a yeast free diet..but it's so hard to do. I love my sweets and carbs. Though he's on to something regarding this. The 2 weeks i did follow the diet my symptoms(the film) cleared up. It's a tight rope walk with abx and yeast for me it seems. Honestly...I can't thank him and his staff enough. From utter despair to a functioning human being...wow.

The only thing..which is typical of great U.S. healthcare...is that it's gonna cost you dough. Unfortunately the powers that be have created an environment for LD sufferers and practitioners whereby the only way of not being reprimanded is by being totally independent of any reviews by the insurance carriers.

Take it from a person who's gone through both methods....he's amazing/caring/very knowledgeable and I think he's done Burrascano proud.

While I don't know if i'll ever beat this....I believe that there are practitioners out there that realize that this is an epidemic and we need all the help we can get. I'm not 100% and don't know if i'll ever be but he's given me hope and at this stage this is more than most of us have ever gotten from the "system"

To all who've had to read through this long post...I apologize. I just wanted to share a somewhat successful story with a fellow sufferer and introduce myself at the same time.

I've suffered 2 knockdowns and 2 10-8 rounds...but it's the 11th round and i'm comin' out swingin...

to all God Bless

df





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