I'm a 22 y/o make currently at Bayshore Hospitwl in NJ with adrenal insufficiency and Lyme , Bartonella, Babesia. Feel really week and getting worse with hydrocortisone. Slowly weening off hydrocortisone and replacing with adrenal supplements because the steroid is suppressing my immune system. Would Jefferson Univeristy Hospital in Philli be helpful? If not are there any in patient clinics I can go to on east coast ?
Posts: 19 | From New Jersey | Registered: May 2016
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Sorry to tell you that there are no hospitals or in patient clinics on the east coast for lyme patients. In fact, we have all learned that it is best to AVOID such places.
The reason is that they do NOT understand lyme disease. Everything they "know" about lyme is wrong. And, they are not willing to learn.
If you don't already know, there are 2 camps in the medical field regarding lyme disease. The majority camp (hospitals and infectious disease doctors and nearly every other doctor is here) belives that:
1. lyme is extremely rare (so rare that they do not believe you have it, even with a positive lyme test), and
2. lyme is easily cured(generally all it takes is 30 days of doxycycline). After you get that treatment, you no longer have lyme. Instead, even though your sypmptoms are still the same, they call your illness post lyme syndrome. (They made this name up.)
The other camp is our lyme doctors who know that:
1. lyme is worse than an epidemic, and
2. lyme is extremely difficult to cure
So, you MUST get away from hospitals and get to a doctor recommended by those who have lyme disease. You want someone who has actually cured people of lyme disease. You will need to be treated for these diseases long-term (meaning months or years until you become symptom-free).
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
In May I offered to give you the name of a good lyme doctor near D.C., but you never responded.
Let me know if you now want the name. There is no wait to get in with him.
I hope you have STUDIED the Burrascano Lyme Treatment Guidelines. I hope you know that Burrascano says never to give steroids to a lyme patient unless it is a life-threatening situation. That is because when it suppresses your immune system it allows the lyme to go into niches in your body where it will be extremely difficult to kill it. Steroids allow lyme to spread like wildfire.
If you have taken them for more than a short course, you will now most likely need to go on IV lyme treatment to be cured.
Here are some quotes from Burrascano for you:
"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (p. 4)
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (p. 12)