Located in South Jersey and looking for someone here or in Philly (or even beyond--at this point, I'll travel wherever!).
I've been tested for lyme three times but each one, including the Western Blot, was negative. Still, I have persistent symptoms that may indicate a lyme infection, so I'm trying to find someone who will help with a firmer diagnosis (despite the 20+ docs I've seen for my condition, none has been able to tell me what the hell is wrong).
Symptoms include (the onset was 3.5 years ago, following a flu):
CHRONIC brain fog. Feel drunk much of the time, and there is never any relief--only degrees of severity. Often, eating and drinking alcohol increase the fogginess. I have a very low tolerance for alcohol at this point, and I've tried all sorts of diets and none has brought me any relief.
Poor memory/trouble thinking
Eye floaters/diminished sense of space and peripheral vision
Exhaustion
Tingling legs (comes and goes); neck stiffness, but not severe
Anxiety/depression (though I am fairly certain that this is not the source of my other symptoms, despite what numerous docs have insisted)
Poor digestion (for years prior to this. Was previously diagnosed with fructose malabsorption)
Slight hand tremor. Feel shaky sometimes
Nystagmus
Sinus fullness
And I used to have night sweats and frequent low-grade fevers, though these have subsided over the years
Sensitivity to light and noise
Thanks in advance for any input.
Posts: 1 | From NJ | Registered: Dec 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, it certainly sounds like lyme to me. Chances are, you have never been given a good test for lyme. The Quest and LabCorp tests are junk, including the Western Blot. They can miss at least half the cases.
So, your best bet to get to the bottom of this is to go to a very good lyme doctor who will test you through a tick borne disease specialty lab like Igenex in California.
Not only that, but you will be tested for the so-called coinfections also. So, if you turn out to have babesiosis or bartonella, or ehrlichia, you definitely have lyme also no matter what the test says.
No test is totally reliable, so the lyme docs run a number of different ones. Then, they diagnose you based on your symptoms, past medical history, test results, and response to a trial of lyme treatment.
Sorry to say, but to get a very good lyme specialist, I recommend you travel to the D.C. area. This doc can see you quickly. And he will do telephone or Skype appointments so that you only have to come in person every 3 months.
Folks from all over are going to him and like him.
If you want the name, prices, etc. just let me know. In the meantime, it would be well worth your while to read the Burrascano Lyme Treatment Guidelines found here:
Also know that lyme specialists do NOT take insurance so you will be paying out of pocket and then filing a claim yourself for some reimbursement for the tests and doctor visit. It isn't cheap.
But, based on all that you have said above, it would definitely be worth your while to do this. You are naming common lyme symptoms and no doctor can figure out what is wrong. That is the history of all of us. Then, they want to blame the anxiety and depression. The truth is that lyme causes these symptoms also. See the list of common lyme symptoms that Burrascano gives on pages 9-11.
You will see your symptoms there.
Sorry that there is nobody I can recommend to you in NJ or the Philly area. Many try the docs there and then come to the D.C. area for better treatment. So, that is what I suggest you do right off the bat.
You need a skilled doctor to even diagnose this disease. See this quote from Burrascano:
"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
Were all your lyme tests through Quest and LabCorp?
Also, you can contact the lyme support groups in your area. See Support Groups on the left side of the page. You can ask them for names of doctors who are curing folks of lyme diease.
You see, many doctors treat lyme disease, but very few know enough to get rid of it for a person.
I and at least 5 of my friends got rid of lyme by going to a doctor who followed the Burrascano protocol. It is now 10 1/2 years since I completed my treatment (for lyme, babesiosis, and bartonella) and I am still symptom-free, enjoying my life.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
So, read and STUDY this document. Then, you will have an education on this disease. Then, you can evauate any doctor you go to for help. You will know when to hold 'em and know when to fold 'em.
You may want to take a train from NJ to D.C. That is often quicker than driving and practically effortless. Then, take the subway to very near the doc's office. You could come down and back in one day. Let me know if you are interested in this guy. I believe you would get some good help from him.
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