posted
Some background info before I ask my questions. I am a 21 year old male. I was told by my doctor when I was 12 or 13 that I had lyme disease. I was living in tennessee at the time and there had been a few very bad cases when I was living there. I went to camp for a week and had roughly 20 ticks that I pulled off. I got the bulls eye rash and was put on anti biotics. I have not done anything else about my lyme disease since, thinking that it was all over.
I went to the doctor here in Maine where I am currently stationed. THe military sends us to a local clinic where they are into the natural healing and all that stuff. I had been having joint pain in my knees even after doing nothing all day; it was as if I ran a marathon the previous day when in reality I sat on the couch all day to relax and rest. So I mentioned lyme disease to the PA who was "treating" me, and in return I was told that I was lying and there was no way it was possible. My mother and fiance have been bugging me to see a doctor again thinking my lyme disease could be the issue. So my mom's neighbor who has a port sent me all this information about lyme disease and Igenex(?) that lead me to this forum.
My question is where should I go from here? How did you get set up with a LLMD? Any information provided will be greatly appreciated.
Sorry for such a long post.
CCP
Posts: 5 | From Maine | Registered: Mar 2010
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posted
Welcome!! We're so glad you found us!! and thank you for serving your country in such a way as you are!!
Go to Seeking a Doctor here and someone will help you with names of drs who treat Lyme. We call them LLMD's... Lyme Literate MD's.
Yes, get tested thru Igenex Lab.. www.igenex.com Test #188 and 189.
(It costs about $200)
Sure sounds like the Lyme has come back on you...so don't give up until you get further treatment. Oral meds DO work for most people, so don't get too worried about having to go on IV at this point.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
CCP,
Glad you found us. To get set up with a LLMD, go to our "Seeking a Doctor" forum and post there.
Make the title of your post something like "Seeking Dr. in Maine"
It helps to put the state in the title of the post. That way, the people with the lists of doctors see the state you need and can help you without having to spend time opening your post and reading it.
Just know that they will give you the names of ALL docs who treat lyme disease in Maine, regardless of their expertise or success record in getting rid of the disease.
You are very wise to pursue this. I believe your symptoms sound like lyme.
Be encouraged. I had undiagnosed lyme disease for 10 years. Once I got to a good lyme doctor, I got rid of my disease. It has now been 5 years since I completed my treatment and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
This can be you also, but the doc is the key to getting rid of this horrendous illness. The doc is the key.
I prefer a doc who follows the Joseph Burrascano protocol because that is what got me and all my friends well. I suggest you call lyme support groups in your state (see left side of page, "Support Groups") and ask if they know of any doctors who follow the Burrascano protocol. Then, make an appt with that doctor if you can.
The wait to see a lyme doc can be long. So, if you run into a long wait, make the appt and then go to a lesser doctor while waiting to get in with the good doctor.
Be prepared to pay a lot of money for the initial appt and Igenex tests. (Igenex is a tick borne disease specialty lab in Calif.) But after that, the costs go down considerably.
Also, be prepared to travel to see a good lyme doc.
There is no reliable test to diagnose lyme disease, so you need a very experienced lyme doctor to make the diagnosis based on his interview and exam of you. This is not my opinion. It is a statement from the Burrascano lyme treatment guidelines found here:
"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."
Sorry you have already gotten treated poorly by someone in the medical profession just from asking about lyme disease. That's a very common story among us unfortunately. It is because lyme disease is embroiled in a medical controversy that has been going on for years. People have taken sides. If you see someone who believes lyme can't stay in your body for 7 years and you tell your story, you will be yelled at.
Know that when you go to one of our lyme doctors, you are seeing a person who believes lyme is difficult to get rid of, can remain in a person's body their entire life, can go into remission and reappear later, etc. You won't get yelled at. You will be taken very seriously.
I suggest you read and STUDY the Burrascano Guidelines to learn as much as you can about this disease. It will really help you in your search for good medical care just to be informed.
Also, a Boston TV station did a great show on lyme disease a little over a year ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
I wish you the best. Keep posting so we can help you more.
And, thank you for serving our country. May God bless you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Reading that you're in the military and a question came to mind. Have you had a combination of vaccines recently that could of set off dormant lyme? Accident? Some big stressor?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Welcome.
I was infected at 5 years old and had symptoms off and on for years until I became disabled so yes, it could well be lyme. That said, it could be something else.
As others have said, it would be best to see an LLMD.
ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
You can go here and register and get a list of ILADS doctors that are closest to you. http://tinyurl.com/6na364
posted
Hi everyone. Thanks you so much for all the replies. Sorry it took so long for me to get back. Been busy with work. I am so grateful for all the information everyone has given me and for the very timely response. Also thank you to the people who thanked me for serving. Its nice hearing that considering all the people who are against the military these days.
To answer your questions MAP, I am not really sure what vaccines would set off a dormant lyme disease. I have had a bunch of vaccinations in the past few years but have also been kept up to date with all of my vaccinations since I was a kid. And to the stress and accident question I can easily say yes to both of those questions. The accident was a few years ago and was in the hospital for a week on lots of medicine, not work related though. Would an accident have an effect on lyme disease? Would stress have an effect also? I guess that is something I had never really thought about.
Thanks again for all the information. Any information to be offered is appreciated. Im going to research more on LLMD's in Maine and talk to the medical guy on base here to see what my options are with getting referrals to doctors and what my insurance will do.
Posts: 5 | From Maine | Registered: Mar 2010
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posted
If you have dormant Lyme, then stress, accidents, surgery, a death in the family, or other physically or mentally stressful events can depress your immune system, leading to a relapse.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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That could all have an effect on me then. I had an accident followed by surgery, death of my best friend, and obvioulsy stress from all of that within three weeks of each other. Although my knees and feet have been feeling horrible for years, im guessing that still could have affected it. Thanks you all for the responses. It gives me a lot to think about while I am looking for a doctor.
You all seem to be caring and good people as a whole. And i am thankful I have a place like this to ask questions. If I can be of any help to any of you I would love to help.
CCP
Posts: 5 | From Maine | Registered: Mar 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
CCP, it is well known the service likes to give you guys all your vaccines at one time. Something like this could be a stressor for someone with non-symptomatic lyme that's laying in wait.
Believe it or not vaccines have some very questionable ingredients. Many have questioned whether soldiers with Gulf War Syndrome was triggered by the mass vaccines they loaded them up with before going off to foreign lands.
Many folks on this site became ill after a major stressor in their lives. Many after car accidents also.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
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