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Newly Diagnosed with Lyme

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Posted 6/6/2009 1:40 AM (GMT 0)
Hi -

I have been recently diagnosed with Lyme, and the doctor prescribed me 30 days of doxcy twice a day.  Per the doctor I should not require any further treatment.  However, being the type of person I'am I needed to read and understand more about Lyme.  What I have discovered is people talk about co-infections and are receiving antibiotics for many months. 

Co-infections were not discussed with me, and I assume that I should be tested for them.  I use Lab Corp has anyone used them and received accurate results?  Also, it seems everyone goes to a LLMD doctor, but what I'm finding is they do not take insurance.  Has anyone had any luck with their regular doctor and getting the proper treatment? 

Any advice would be appreciated.

Warm Regards

Posted 6/6/2009 5:11 PM (GMT 0)

Hello, Welcome to the world of Lyme. I hope you have a short visit. You sound like you already know more than your Dr. keep up the fight. Not sure were you live I am sure someone on here can help you find a Dr in your area. I have never had any luck with regular docs in Oregon and have always had to pay cash to a LLMD out of State. It is just not fair.

I will be heading to Conneticut in July to see Dr.K. He of course only accepts cash.

When were you infected?

What are your symptoms?

Take care, Beth

Posted 6/6/2009 5:50 PM (GMT 0)
I was diangosed about one week ago - I'm not sure when I got infected because I never pulled a tick off of myself and never had a rash. I think I have probably been having symptoms for a while but they were vague and would come and go. However, over the past month I started having really bad health.

Numbness in my arms and legs - mostly on my left side
Severe headace on my left side
Numbness inside my mouth
tingling on my tongue
Tongue numbness
Fatigue...Fatigue...Fatigue - I have had this for a while - however - it has progressively gotten worse
Throat spasms - feeling like my throat is closing up
Shortness of breath
Stomach Bloating
GI issues
Hearing fading in and out
Ear pain
Eye pain
Twitching in my face
Chemical Sensitivities
Smelling things that is not there
I could go on...but I'm sure you understand

I ended up writing out a list of my symptoms - I had about 60 different symptoms
My doctor looked at the list and said Wow! I think it was the best thing I could have ever done. Because of my list he sent me to a Neurologist who ran all kinds of blood work on different disease and the only test that came back positive was my Lyme.

I'm really greatful to find out what is wrong with me, because I was at the ER 4 times in 3 weeks and no one could tell me what was wrong with me. I found myself laying in my bed thinking about what was going to happen to my family, because I felt like I'm going to die. I have never felt so sick in all my life.
Posted 6/6/2009 5:56 PM (GMT 0)
I was not finished but somehow I must have hit enter.

I started to read and research Lyme and I have to say I have been misinformed about this disease. I have learned a lot in the week and I'm sure there is so much more for me to learn. I realize after reading post after post that I need to more than 30 days of antibiotic. I need a doctor who can treat me - I live in Maryland. I'm positive my Internist will not give any more antibotics. Especially since he did not know what was going on with me.

I would appreciate and advise and help.

Warm Regards,

Angela
Posted 6/7/2009 7:25 AM (GMT 0)
Angela,

I'm so sorry you have to deal with this nasty disease but I'm glad you found out what it was. The girls here are very knowlegeable and compassionate. I'm sure you will learn a whole lot here.

Welcome to the board!
Posted 6/7/2009 10:58 AM (GMT 0)
Hi Angela,
You didn't mention how many mgs. of the Doxy you are on. I was on 100 mg bid, and it wasn't enough for me. It was working somewhat, but I didn't really improve until I started the IV ceftriaxone in May for 28 days. I'm not sure if that was enough either, but the ID MD believes that it is, and if my symptoms return believes that it wasn't Lyme in the first place. So I'm in a similar boat, just a little further down the stream. I plan to take an herbal treatment once I get my digestive system back in order. Also on supplements for immune boosting.

Original treatment in 2005, was doxy for only 10 days, and went on herbal stuff back then. Apparently it just went dormant, and my immune system kept it that way until March when I began a severe sinus infection and the Lyme resurfaced. Was on Biaxin 3 wks. and the doxy 5 wks. before the IV. I did improve and am slowly getting my energy back. I still have this issue with my back, that I'm realizing is not just from my fall down the steps in March. So for now will try the herbal approach again just to be safe.

I'm in PA, so I don't know of any doctors in Maryland. I have heard of an llmd in PA, in Kennett Square, who doesn't take insurance, and charges by how much time spent with the patient. I'm sure there are others around. You probably should also tested for co-infections. I wasn't, but I didn't have as many symptoms as you have. Hope you are improving!
Posted 6/7/2009 1:08 PM (GMT 0)
I'm taking 100 mg of Doxcy twice a day. A friend of mine was treated for Lyme Disease in the past and she does not think one month is enough. So my task next week is to find a doctor who will treat me longer. I need to be tested for coinfections too - I'm not sure why I was not tested when my WB came back positive.

I have a feeling it is not going to be easy to find a doc to treat me....I feel a little scared.

When you were tested for coinfections what lab did you use. My insurance pays for Lab Corp, but I here that igenix (not sure if I spelled this correctly) is the lab to use. I would appreciate any feedback.

Thanks for listening.
Posted 6/8/2009 4:57 AM (GMT 0)
you have the last stage of Lyme. You probably need IV therepy. you must see a Lyme md. Email [email protected] for a lyme lit doc tell your area that you need she will email you back with a doc closest to you. Then you must go. You will relapse soon when your antibiotics are done and hard that is happening to me right now. You are very fortunate to have had a positive test. but you are not fortunate not to have a lyme doc so get oon that now. I would also recomend that you purchase a copy of under our skin the lyme documentary that will blow your mind. and tell you much of what you need to know. You will relapse without further treatment. goodluck and get a doc.
LuV-V
Posted 6/8/2009 1:11 PM (GMT 0)
3whiteroses,

There is a list of all the LD symptoms, you should look at that and check off how many you have.  Even if you test thru Igenex they only test for a few strains and you may come back neg even if you have a co-infection.  Your best bet is to find a LLMD and let him diagnose by your symptoms, which is what the doctors are suppose to do anyway (they don't).  My advise would to read everything you can get your hands on.  The only thing I know for sure about LD is there is nothing FOR SURE with LD.

Take Care, KO

Posted 6/8/2009 9:23 PM (GMT 0)
 

"Hello, Welcome to the world of Lyme. I hope you have a short visit."

Nice quote... and a "short visit" in the world of Lyme should be defined as time spent that is less than 1 year. 

Chief

Posted 6/8/2009 11:30 PM (GMT 0)
I hope my stay is short too, I have an appt set up to see a LLMD - I feel so relieved. I will keep you posted.

I hope my symptoms clear up soon.

Angela
Posted 6/8/2009 11:36 PM (GMT 0)
W E L C O M E T O T H E H O T E L C A L I F O R N I A:

You can chck out any time you want, but you can never leave!

Well, then again, the you could be one pf the lucky ones!
Posted 6/9/2009 6:39 AM (GMT 0)
3whiteroses,

Only your doctor will be able to tell you whether you need a picc line/IV or not. My doctor doesn't do picc lines unless the patient is in a wheelchair or really bad off. Only he can decide that.

As far as relapsing after getting off of antibiotics....everyone is different and it depends on the individual how well their body heals. Antibiotics do work. Some people do antibiotics first then switch to herbal supplements later in their treatment.

Good luck with everything and don't let any of this scare you.
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