posted
I have never re called seeing any rash or tic bites on my body. I am a 46 yo male. I was diagnosed with CFS, FMS 20 years ago. I also suffer from GAD, Panic Disorder, etc. I was on SSRI's for years. Have been off of them and connot tolerate them. I take xanax as needed. Recently, my eyes have become sensitive to light, severe stiffness in neck and face,nausea, etc. I have had blood tests for Lyme, but negative. My concentration has diminished, have confused and foggy episodes.
Posts: 9 | From NNJ | Registered: Jan 2010
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posted
Thank you so much!
Posts: 9 | From NNJ | Registered: Jan 2010
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Pripoli and welcome to our site. We're glad you came to us.
I also have sent you some information--it will help guide you in selecting a lyme practitioner.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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posted
he was not on the list. I just tested positive for Lyme. My symptoms have gotten worse. Not sure which strain or what lab, i will ask him. There is one on your list in also close to me
Dr. just put me on Doxycycline 100 mg twice a day. I read that if your pain is in the neck, shoulders, etc. also having digestive distress and trouble breathing just waling, it has affected the nervous system and probably need more aggressive treatment. Any thoughts?
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Pripoli, try posting this in the Medical Questions forum. Then, many more people will see it and reply.
This forum is just for getting doctors' names.
100 mg of doxy twice per day is the dose of doxy that non-lyme literate doctors give. You need a higher dose, like 400 mg to help you.
Then, you will need to add something for the cyst form of lyme also. In other words, you don't want to be on just one antibiotic. You want to be on combinations of antibiotics.
If you have not already done so, why not read and study the Burrascano lyme disease treatment guidelines. They are found here:
They are not an easy read because they were written to doctors, but they will give you your education on lyme disease.
Burrascano tells the dosages needed for the various meds, and he tells the combinations that need to be used.
So, you need to get to a doctor who has treated many, many cases of lyme disease and knows how to get a person well.
I strongly suggest you contact your lyme support groups in your state (see Support Groups on left side of the page) to find out about the docs on Siciliano's list.
I generally wouldn't go to a doctor who isn't on the LymeNet list. If you do, you get the kind of inadequate treatment you are now getting.
Many doctors treat lyme disease, but not many know how to get rid of it for a person.
I completed my lyme treatment over 5 years ago and I am still symptom-free, enjoying my life. I went to a doctor who followed the Burrascano guidelines. I suggest you do the same. The support groups can tell you who they are. Also, when you call a doctor's office, ask if he follows Burrascano.
All of my friends also got rid of this disease by going to a Burrascano type lyme doc. I had undiagnosed lyme for 10 years. I have at least 2 friends with the fibro diagnosis for 10-20 years, like you. And, they are well now.
The doc is the key to getting rid of this disease. I can't stress that enough. The doc is the key.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The digestive distress and trouble breathing indicate that you have lyme coinfections such as babesiosis and bartonella.
Babesiosis give you what is called "air hunger." And, bartonella will cause lots of digestive distress, but the gastro will never find anything wrong. Happened to me.
Lyme gets into the nervous system within hours/days of the tick bite. So, we all have it in our nervous systems.
From page 12 of Burrascano:
"After a tick bite, Bb undergoes rapid hematogenous dissemination, and for example, can be found within the central nervous system as soon as twelve hours after entering the bloodstream. This is why even early infections require full dose antibiotic therapy with an agent able to penetrate all tissues in concentrations known to be bactericidal to the organism."
Posts: 9931 | From Maryland | Registered: Dec 2007
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Pripoli, I am sending you my list again. You need to see someone from this list!
Please listen to TF, she is a wealth of knowledge!
You will understand a great deal reading Dr. Burrascano's guidelines.
We will help you!
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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posted
I left a voice mail with Dr. U right here in NJ, about 10 miles from my residence. She is also a DO, but on the list, I should've called her months ago. I know she is not on my health network, but at this point, I need to improve my quality of life.
You mention medicine for the cyst? I never remember a tick, bite, or a rash? My other DO who found I tested positive never called me back today, I want what type of lyme I tested positive for, and the lab he used, it must have been better than my PCP has used all of these years, I was probably tested 5 times over the years, all negative.
** moderator's note - edited to remove doctor's name and city, please see terms of use **
I returned to my DO to double check my lyme results. I tested positive for Bartonella, ther was a # it was 1.64? I believe the name of the lab at the top of the page was Westenr Nlabs, not sure, but he explained that the lab passed the Bartonella test to Specialty Labs Of California, that name was on the specific line for Bartonella. As he reviewed the test again, he did not see results for a Western Blot test he ordered?? He drew more blood for Western Blot?. For the 2nd day in a row, I have left a voice mail for the doctor.
I just received a call from my gastro, the biopsy results for H. Pylori from the endoscopy is negative.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Paul, please remove the name of the lyme doctor. Putting their names on the public board is against the LymeNet rules. It can be bad for the doctor.
You have to get in the habit of calling the doc by first letter of last name only. Thanks.
Posts: 9931 | From Maryland | Registered: Dec 2007
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