posted
Hello I am seeking a LLMD in New Jersey. Central NJ to be exact.
I am a 29 year old male.
For the past year, my head has felt "off". I have difficulty describing it but it is a floating/foggy/lightheaded feeling that inhibits my daily activities. It is worst when I walk around.
It can happen at any time of day for no rhyme or reason. I have been to the doctor many a time and nothing has worked.
I have been to the ear, nose, throat doctor, MRI of head, cardiologist, and general physician and so far have gotten no better. The general physician recently put me on Cymbalta for possible anxiety but it has made no difference.
I also am an avid runner and for the past year have had a terrible ache/knee pain that I thought was running related but have also been treated numerous times by different doctors and gotten tons of shots and nothing has helped my leg at all either.
The timing of my leg pain and head feeling off is hand and hand so I'm thinking maybe it's connected.
I would give anything to feel like my normal self again so please help me find treatment asap. Thanks
Oh and I also should note I live in a area vastly populated with deer and have as many as 15-20 in my yard nightly. They are like pets almost they come so frequently. And I am outdoors all the time.
Thanks so much
Posts: 2 | From New Jersey | Registered: Jul 2016
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi, Thor and welcome to LymeNet!
Unfortunately, many doctors treat lyme disease, but there are very few really good lyme doctors who treat properly and know enough to cure a person.
I do NOT recommend the NJ lyme doctors or the Philly or NYC ones. Connecticut has one good lyme doc that I know of.
I am in Maryland and I recommend a doctor right outside of D.C. You would only have to go to him in person once every 3 months. The other months, he will have phone or Skype appointments with the patient.
I know that right now all you want is a diagnosis. But, the way it goes is, you need a really good lyme specialist to get a good diagnosis. The first appointment is the extremely expensive one. Say, about $600 for a one hour appointment.
You are paying for expertise here. It takes a real expert to evaluate your symptoms and history and decide if it is lyme or not.
The lyme tests are not reliable, but if you get a positive test result, you can bank on it. (Negative test results are common for folks with lyme, so a negative result means nothing.)
So, if you want to try to get some doc who takes insurance to just test you for lyme disease at this point, you can try that. Quest and LabCorp will do a lyme Western Blot test.
Just know that if it comes back negative, you can't trust it at all. If you get any positive "bands" on the test, they could indicate lyme disease. You could post your Western Blot results here and we could tell you if it looks promising for lyme.
It is really complex getting a lyme diagnosis. I went undiagnosed for 10 years. For 10 LONG years I went from doctor to doctor trying to find someone who could figure out what was wrong with me.
So, when you get to the point that you are willing to pay the big bucks to see a doctor who specializes in lyme, to once and for all find out if this could be lyme, then perhaps you would be willing to travel to see someone good.
At least half of all lyme patients go out of state for their care. Many have to fly to their doctor's office.
If you want the name of the doc in Maryland that I recommend (near D.C.) let me know and I will send it.
Lyme docs use better labs and you have a better chance of getting an accurate lyme test result. The best lab is Igenex in California.
If you can get a regular doctor to order an Igenex Western Blot for you, that only costs $200. Look at Igenex's website and call them for a free test kit. Then, get a doc to sign the order for the test and have your blood drawn and be sure the one drawing your blood follows the Igenex directions for shipping the blood to Calif. It has to be done immediately. And, not on a Thursday or Friday so it doesn't sit in the post office somewhere.
If the blood sits too long, it will clump and then you get a negative lyme result due to the clumping.
I know NJ is full of deer. Here is a quote from the premier lyme specialist and pioneer, Dr. Burrascano on how lyme is diagnosed:
"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." (p. 7)
So, just know that if you never see a bulls eye rash or an attached tick, you generally can't get a doctor to even consider lyme. But, a lyme specialist sees this all the time--people with no rash or tick bite coming in with your types of symptoms.
The lyme specialist will take this seriously and hopefully get you an answer. Too bad it has to be so difficult and costly a process. But, all of our docs have been miseducated about lyme that it is RARE. They only know to look for the bulls eye or a swollen knee and joint pain. Not everybody gets those symptoms.
Lyme can cause hundreds of different symptoms. See pages 9-10 of the Burrascano Guidelines. Make a list of all you have. Take that to your first lyme specialist appointment. The symptoms are extremely important in making the diagnosis since none of the tests are reliable.
A good lyme doc will then give you a trial course of lyme treatment (antibiotics) to make the final diagnosis. So, diagnosis often requires a trial course of treatment.
As Burrascano says at the start of the quote, lyme is diagnosed clinically. That means that it is diagnosed by a doctor using his knowledge of various diseases and considering the patient before him (history, symptoms, test results, etc.)
So, for all these reasons, you want to go to the best lyme specialist you can even at this stage. Then, you will get an expert opinion about the likelihood of this being lyme or not.
Let me know if you want the name of the Maryland doc.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Thanks TF. In addition to the symptoms I listed here, many other symptoms match to the ones listed in Burrascano Guidelines.
Do you think there is a good chance this could be Lyme?
Coincidentally, I actually am planning on going to DC at the end of this week. Do you think I could get an appt that quickly?
And also do you think that would be the best course of action? Or should I try to get more recent blood work done first. I did have standard blood work done recently. Thanks
Posts: 2 | From New Jersey | Registered: Jul 2016
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You would have to tell me your entire list of symptoms if you want my opinion of the chances that you have lyme.
The more symptoms you have, the more likely it is lyme. So, do you have 15 symptoms, 32 symptoms? See what I mean.
It is very possible that if you called on Tuesday you could get an appointment in 3 days. I don't know the chances of that happening.
You don't want seen on a Thursday or Friday if you want tested by Igenex. If you are willing to be tested by lesser labs, then I guess it is OK to take an initial appointment late in the week. I never was tested by the lesser labs.
Blood work is done at the first appointment. They do the blood draw at the doctor's office. So, there is no sense getting blood work done before you see a lyme doctor. The lyme doctor generally doesn't care about standard bloodwork. It is not what he needs.
The blood tests that he will do are not done by other doctors. So, you have never had these tests done before. (Tests for ehrlichia, lyme, babesiosis, bartonella, perhaps EBV, mycoplasma, CD-57 etc. It all depends on the symptoms you list.)
So, tell all the lyme-related symptoms. That is the most important indicator of whether this is likely lyme disease or not.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the doctor's name and lots of other info. You can spend the holiday reading all of it and then hopefully you will know what you want to do on Tuesday morning.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
posted
is the doc near dc dr. M. we are going to see him next month. also OP you can call igenex and get a lab result before seeing a dr this will allow the dr to start meds upon seeing him...
[ 07-11-2016, 01:47 PM: Message edited by: faithful777 ]
Posts: 12 | From New Jersey | Registered: Jan 2016
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic