Looking for LLMD in Eastern Pa or Western NJ

ticker

Hi dch1112, welcome to the board!

Ten days of treatment is never long enough for Lyme disease. What med and dose did you take?

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. 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. Have you been tested for these?

The only Lyme doctor I know of in PA who comes highly recommended is in Hermitage. Is NJ closer for you? I know of Lyme doctors in West Caldwell and Jackson.

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 (on-line). 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.

langlee

Dear Ticker,

I would be interested in the doctor in West Caldwell. I understand there is a different test for chronic lyme disease and it's not easy to find. Someone recently recommended that I have my 16 year old son tested, based on some of his symptoms, and I am just doing my fact-finding now.

Do you know the difference between a standard lyme test and chronic lyme disease test? Any information you can share would be most appreciated.

Always,

Hope

ticker

Hi Hope, welcome to the board!

I am sorry your son may have Lyme. How long has he been sick?

No test for Lyme disease is completely reliable, and results can vary by lab. Some people who have Lyme do not test positive. It is my understanding that the titer or ELISA is the least reliable test and the one most doctors run first. The Western Blot is a better test, but it is important to be tested at a Lyme lab such as IgeneX in Palo Alto, CA. They use more sensitive testing and list more bands on the Western Blot.

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 knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. 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 doctor in West Caldwell is Dr. Leslie Fein. I hope your son can see someone soon.

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.

Keep us posted on how your son is doing okay?

langlee

Thank you very much for all of the information, Ticker. I really appreciate it.

My son has some, but not all, of the symptoms you mention. You mention IgeneX in Palo Alto. Is that a lab an East Coast doctor could send the test to?

Thanks for your help. You are obviously very knowledgeable.

Always,

Hope

dch1112

Sorry I don't remember the dosage.... I'm pretty sure it was doxycycline.(sp) I didn't experience any chronic symptoms. I really don't have any more symptoms I'm feeling strength wise pretty much back to normal..... just not as mentally sharp....but it's been a crazy couple of months. It is more for my piece of mind to be sure I'm "clean". I was tested twice once the common titer and I can't remember the other one. But I'm sure it wasn't anything intense. Thanks so much for your time and help.

ticker

Hi dch. I would recommend that you see a Lyme doctor for an evaulation. A knowledgeable doctor knows the best tests to run.

It sounds like your infection is early, which is good. Early infections are the easiest to cure. Getting the proper treatment early may reduce the chance of long-term complications. I am not trying to scare you, but it is hard to imagine how serious this can be if untreated or under-treated. Ten days is never long enough treatment.

Sometimes people can keep the symptoms at bay for some time, even years, and then they emerge. The longer an infection is present the harder it can be to eradicate and the longer it will take.

ticker

Hi Hope, thank you!

I think the majority of Lyme doctors use IgeneX Lab. Yes, East Coast doctors can send bloodwork there.

Good luck!

dch1112

thanks again Ticker.... I got a referral for a Dr. Leonard Schuchman in Chadds Ford, Pa. I'll be making a call to him next week. Have any info on him?
dch

dianneom

dch1112, Sorry about sticking my nose in but I've been to this doctor and don't recommend him.

dch1112

Hi Dianneom....can I ask why? Do you have a recommendation for a doc? thanks!

ticker

Hi dch. I remember hearing that someone who saw him did not feel he received proper treatment, but I cannot remember the details.

The only Lyme doctor I know of who comes highy recommeded in PA is in Hermitage. Is NJ closser for you? There are two good Lyme doctors in NJ, in Jackson and West Caldwell. Would you like one of their names?

dch1112

Thanks Ticker.... Hermitage is all the way on the western side of PA above Pittsburgh... I'm on closer to NJ. Yes I would like both of their names. thanks again

ticker

They are Dr. Leslie Fein in West Caldwell and Dr. Emilia Eiras in Jackson.

Good luck!

dianneom

Hi dch112,

This doctor will not treat on a clinical diaognosis. He uses only IV and will only treat as long as he acts as the infusion company. You will have to go to his office twice a week if you have a good insurance company or every day if you have a HMO or Medicare. I've been on IV a few times and he charged my insurance company a lot more then the regular infusion companys did. The last thing you want to do is get your insurance company mad at you.

After the insurance company stops paying for IV, thats it, your on your own, weather your well or not.

He thinks Igenex is garbage, says there is no scientific backing to Burrascano's guidelines. If you have coinfections other than Babs, he treats them with the same IV. Says the same treatment gets all of them.