posted
I tested positive for lymes a month ago and completed 21 days of doxy. In the last 2 weeks.
I had 2 bouts of intense chest wall pain that lasted 2-3 days each. Each time the doctor prescribed prednisone, as well as oxycodone as needed for pain (the pain was very intense.
CT scan showed no clotting in the lungs. Ekg was normal.
The last bout came on as I was drinking strong coffee preparing to leave the house to catch an early morning flight. Within 10 minutes I went from no pain to Excruciating pain in my right chest wall.
It's been 36 hours now and the pain has subsided markedly. I wonder whether this could Lyme related and who to see to get the root cause.
[ 08-03-2016, 03:56 PM: Message edited by: Bajapaul ]
Posts: 3 | From Bucks county, PA | Registered: Aug 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
First of all, do NOT take anymore prednisone or any other immune suppressant. If you have any chance of lyme disease, that is the rule.
Read it in the Burrascano Lyme Treatment Guidelines found at the top of Medical Questions. It is here:
"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."
Since you tested positive for lyme disease, I would NOT take anymore prednisone. Only if your life depended on it (like your throat is swelling up and you can't breathe).
21 days of doxy was obviously not enough to get rid of your lyme disease. If you have had lyme for some time, this is a common occurrence. So, it appears that you will now need long-term lyme treatment plus testing for coinfections.
"Undertreated infections will inevitably resurface, usually as chronic Lyme," (page 3)
If you have had lyme for some time, you most likely have coinfections (babesiosis, bartonella, ehrlichia, etc.) Read about it in Burrascano.
So, now you need to go to a doctor who specializes in lyme disease, meaning that his entire practice is lyme disease or at least a great majority of it.
Costochondritis is a typical lyme disease symptom. See pages 9-10 of Burrascano and you will see "Chest wall pain or ribs sore" among the list of common lyme symptoms. This can cause you to think you have pleurisy, but it is just lyme diease.
If you have babesiosis, you can experience breathlessness or "air hunger."
So, now the question is how far you are willing to travel to get good and fast treatment.
There is a doctor in Maryland who can see you quickly. His practice is strictly lyme diease. He will do telephone or Skype appointments for 2 months, so you will only have to appear in person at the office once every 3 months.
Let me know if you want his name and price info, patient reports, etc.
You can also check with the lyme support groups in your state or nearby states. See Support Groups on the left side of this page.
Get lots of input from current patients before paying the big bucks to see a lyme specialist. I have lots of input on the doc I recommend. I know the big name doctors in the east. They all have long wait lists or are not taking new patients.
That is why I am offering the name of this doc to you.
Try to figure out when your lyme symptoms may have started. The classic lyme symptoms are pain here, then pain there, travels around, comes and goes. Also, in the beginning, lyme symptoms can be episodic. But, if you don't get proper treatment, it will eventually be nothing but continual symptoms.
Since you are new to LymeNet, I want to be sure that you understand that lyme disease is embroiled in a major medical controversy. It has been going on for over 25 years.
There are 2 "camps" when it comes to doctors' views of lyme disease:
1. the majority of doctors in the U.S. have been miseducated about lyme disease by the Infectious Diseases Society of America (IDSA). The IDSA has taught our doctors that lyme is RARE (so rare, your doctor doesn't ever expect to see a case) and EASILY cured (like with 2 weeks or 28 days max of antibiotics).
So, based on this, they believe lyme is no big deal. If you don't get well after a little treatment, you must be a mental case or have "post lyme syndrome"--a syndrome they made up to explain why you are still sick with the same symptoms.
2. the other "camp" is our lyme speciaists, most of whom have had lyme disease themselves. This caused them to research and think for themselves rather than relying on the information put out by the IDSA. These docs know that lyme is worse than an epidemic in this country and that lyme is very DIFFICULT to cure.
So, there you have it. Your primary and virtually 95% of all other doctors are almost certainly in camp #1. That is why you can't get any information about lyme from them. Everything they THINK they know about lyme disease is WRONG! They have been miseducated by the IDSA.
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 diagnosed with lyme and also get good lyme treatment.
Welcome to LymeNet! We are glad you found us and are asking for a doctor here. We will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for your quick and informative response. I would like the contact info, pricing, etc. for the doctor in MD.
My first inexplicable possible lymes symptom was last fall when I woke up with excruciating pain in my ankle. I crawled to the car and my brother drove me to the hospital.
They run a bunch of tests and send me home with prednisone. 4 days later all pain was gone. 2 months later I had pain in my hip for a few days...took megadoses of Advil and it went away
. I got tested for Uric acid levels..came back normal. That's about it. I'm 5'9", 150lbs and very active...normally
[ 08-03-2016, 03:58 PM: Message edited by: Bajapaul ]
Posts: 3 | From Bucks county, PA | Registered: Aug 2016
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The bacteria which cause Lyme Disease (Borrelia burgdorferi) can cause Lyme Carditis and other problems with the heart.
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.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the name and lots of information.
It sounds like you got lyme last fall. So, now you need more aggressive antibiotic treatment and you will need it for a MUCH longer time.
I am glad you found LymeNet.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Welcome ..find out your coinfections .. tf gave very good info ..do not take steroids
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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