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Old 09-06-2007, 06:00 AM   #1
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Not Sure What Yo Do!!!!!

Hello All,

I was clinically diagnosed with Lyme Disease last November. It was based on Igeneix test with positive line in the IGM of 30++,31Ind, 39Ind, & 66+. the IGG test showed 34Ind, 39Ind & 41 +. I was put on a picc line for 3 1/2 months which consisted of Rocephin and Zithromax.

My line was pulled in April and I have been on oral antibiotics ever since. I have however taken some breaks here and there. The last break I took was 1 month off of Antibiotics so my liver enzymes would come down. I began experiencing a tone of ankle pain, so bad that I can barely walk when I get out of bed. I was also experiencing a lot of swelling in my right eye,right ear pain and right jaw pain. Also really bad right sided headaches.

I have had a ton of MRI of the brain and neck. The last test I had was a CT-Scan of the neck with contrast which showed some rather large lymph nodes on both sides but the biggest ones were opn the right side. I had been on 100mg of Doxy for 1 month prior ot that. After theses results came back my doctor put me on Levaquin 750mg. This medication is kicking my bootie!

I experienced no side effects form it for the 1st three days. Then on the third day I started to expreience a lot of anxiety, and vertigo and a basic feeling of unstableness. So much that I do not want to drive a car. I have also started feeling a soreness all over my body.

I do get weekly neuromuscular messages so some of the soreness I am experiencing could be form that. However my message therapist says she has never experienced someone with so many tight muscles.

I think all of my body pain, especially in the neck and upper back region is muscular. They are so tight and cramping that even the deepest message cannot break them up. Is this normal with LYME? Does it casue a lot of muscle involvement?

Does the Levaquin get into the muscles and could that be why I am experiencing the constant pain?

I am so confused though because my last Dr's visit he walked in and said that he did not think it was Lyme anymore. I was shocked. I am not going to an LLMD. I am however going to an ID doc that works closely with Dr. Jemsek and Dr. Jones. He treats many patients for them. I thought I was safe becasue of that. I am not so sure now. However the good thing is that he is very open to my suggestions. I guess it is time I start telling him what to do.

I don't kmow what to do. It is almost a year and I am feeling like I am going in reverse. I live in GA and there are no other LLMD's near here. I have family in NJ which is convenient and I can go stay with them but I am not sure who is the best Dr. to see in the NJ, NY area.

I am sorry this is so long. I have been very riddled with anxiety and sadness which is making htis even tougher. I have been putting up a front for my family and my coworkers pretending half the time i am feeling way better than I do.

I am currently on Vicoprofen 7.5/200 three times a day, Soma(which does nothing for me) and Xanax .5mg. I am constantly in pain and think I have grown accustomed to my pain meds. Help!!

Any suiggestions woudl be greatly appreciated!!!!

One more thing I have not been tested for co- infections but I have the kit on the way form Igenex as we speak so we can get thoise tested for as well as restesting for Lyme!

Onmyway

 
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Old 09-06-2007, 10:19 AM   #2
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Re: Not Sure What Yo Do!!!!!

Hi -

Sorry to hear you are having such a rough time! I was diagnosed with Lyme last August too. Did 6 mos. of Doxy twice a day (200 mg) and then 2 months of Rocephin (prescribed by my PCP - but I think the dose was 1/4 of what I've heard it should be). Now I am just trying to figure out what to do next (I am a married father of two young boys and currently out of work).

Anyway, just wanted to let you know some of us understand!

Dr Daniel Cameron in Mt Kisco, NY is supposed to be one of the best LLMD's. I live in MA so I am pretty much screwed....

I wish you luck. Take care and God bless, Andy

 
Old 09-06-2007, 12:21 PM   #3
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Re: Not Sure What Yo Do!!!!!

I am sorry to hear that there is someone else in the same boat. I actually think that there are a lot of us in theis boat.

I understand the work thing. I lost my job as soon as my Dr. sent the dr's note over that I was going to be out for 6 weeks for treatment! They gave me the old heave ho.

I was out of work for 3 months and fianlly went back to work part time and am workign for a friend of the family's tht understands this disease. I am now working from 10-4 everyday. I have however been out of work since last Wednesday with this nasty relapase I believe I am having!

I really appreciate your sincere reply.

I hope you get well soon!

Take Care!
Onmyway

 
Old 09-06-2007, 05:42 PM   #4
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Re: Not Sure What Yo Do!!!!!

Hi OMW...Just breaks my heart hearing so many people going through all of this mess. And here I use to think I was the only one.

Yes Lyme cause muscular problems. The bacteria (s) imbedded themselves in every inch of our bodies and bone...I use to go and have massages done also and I would be very very tight in alot of areas. I feel massages are very good in helping release toxins in the body...So keep them up. Let your massage therapsit know it is normal....

You need higher doses and much longer treatment with the doxy. I have been on antibiotics pretty much for almost going on 8 years...misdiagnoised for eons of years...Way too long ...so just remember to fight for getting the proper treatment. And get through those yucky herx's. You WILL get "better"

Wishing you a fast recovery...

Hugs


 
Old 09-06-2007, 05:45 PM   #5
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Re: Not Sure What Yo Do!!!!!

P. S.

I am sure others will come on here and help you with more info. There are a couple of people that see a GREAT Lyme doctor in the N.J. area...And they seem to be dong a heck of a lot better...

You might want to post a new Thread if you don't read them on here ...and ask for a doctor in the N. J. area...I do feel you will be happy with this doctor...

Best Wishes

 
Old 09-06-2007, 06:22 PM   #6
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Re: Not Sure What Yo Do!!!!!

Hi onmyway. I am sorry you are feeling so bad.

I think it is possible you may be herxing.

You definitely do need to be tested for all the co-infections. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective.

I believe that Bartonella can cause swollen lymph nodes, and it is often treated with Levaquin. Maybe you have Bartonella?

Lyme and co-infections can cause muscle pain and/or stiffness.

Do be aware of one possible side effect with Levaquin. It can cause severe tendon pain. If this happens, be sure to call your doctor immediately.

I know of two Lyme doctors who come highly recommended in NJ: in West Caldwell and Jackson. Would you like one of their names?

Hang in there okay?

Last edited by ticker; 09-06-2007 at 06:22 PM.

 
Old 09-07-2007, 12:11 PM   #7
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onmyway HB User
Re: Not Sure What Yo Do!!!!!

Thank you Ticker for the informative response!

I was really beggining to think this was herx! This is good, This explains a lot of the neurological and ocular symptoms I am having!

I am on day 9 of this Levaquin and I am still feeling very out of it. I wake up in the morning and I am very dizzy, brainfog, and a very swollen eyes. Every morning and every night I have this swollen eye. It never really goes away. Actually the entire right side of my face does not pull up all the way like the left side does. It is almost like a slight Bell's Palsy.

I have ntohad any tendon issues at all with this medication so far but I will definatley keep attention on that!

One question though if this is Bartonella I have never ran a fever the entire time I have been sick? Is that possible. I thought you ran really high fevers with Bartonella? Did you run fevers?

I keep waiting for this vertigo and all to pass but it keeps hanging in there! I need to go back to work on Monday. My mom offered to take me and pick me up if I needed her to. Thank god for mothers!!!!!!!! Pretty humbeling that I am 34 and may have to have my mother drive me around. What is wrong with this picture! This medical community has got to get it together!!!!!!!

Thanks for all the support!!!

Take Care, Onmyway

 
Old 09-07-2007, 04:34 PM   #8
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Re: Not Sure What Yo Do!!!!!

Hi onmyway. Bartonella is the only infection I did not get! If it is like the others though, some people get fevers and some do not. Hopefully others who have it can comment.

I am glad that your mom can help out. I think moms are very special!

I hope you are killing a lot of those buggers!

 
Old 09-07-2007, 06:47 PM   #9
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Re: Not Sure What Yo Do!!!!!

Me TOO!!!!

Thanks and have a great weekend!

 
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