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» LymeNet Flash » Questions and Discussion » General Support » Recently having issues that could be lyme

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Author Topic: Recently having issues that could be lyme
jamie1977
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Member # 13215

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This might be a bit of a long story. Back on January 1st 2007 I became violently ill. Before this day I was having issues for a couple of months with some light headedness, but thought nothing of it. It started with a trip to the ER. I was having heart palpatations and was very shaky. The ER did an EKG with some X rays and said everything looked OK. They tought I might be dehydrated and sent me home. I then ended up there a couple of days later because my body would not stop shaking. It was the weirdest thing. My legs and arms would not stop shivering. Very scary. Hard to explain.

I ended up being very sick for the month of January. I missed work for the entire month. I had horrible diarrhea for 3 months. I was also very light headed, dizzy, and naseau at times. I went to my PCP numerous times and he had no idea what was wrong. He tought i had some kind of flu virus. Influenza, Norwalk, or something. He did numerous stool and blood tests. Also did CT of all major organs and lungs. Nothing was found. He checked me for food allergies which turned up nothing. He pretty much had no clue what was wrong. I lost 25 pounds in two months and i looked like a zombie. My face was very pale. He just kept waiting for me to get better and kept telling to eat and keep hydrated.

I then went to a GI doctor who told did every GI test imagineable in two months. Colonoscopy, endoscopy, Small bowel series, mri of abdomen, CT of abdomes, pill cam, all kinds of blood work. All he found was some gatritis of the stomach and deudom. He put me on prilosec and zantac for 7 weeks. All the while I still had diarrea, dizziness from time to time and chills. He said there was nothing more he could do for me. He almost seemed mad because he couldn't find anything. Like it was my fault. He basically gave up.

I then went for a second GI opinion. He did a small bowel series, endoscopy, CT of abdomen, and gave me 1 week of flagyl in case of a parasite even though none was found in any of my stools. Everything looked fine he said.

I even tried accupuncture, holistic medicine, wasted all kinds of money. All for nothing.

I even saw an infectious disease doctor who did some blood and stool test. All were normal and she wanted nothing to do with me. She felt I didn't need her help.

I then chnaged my diet about 4 months ago. I only eat healthy organic foods and exercise 4-5 days a week. Still not myself.

I then started looking into lyme. I remember being out in woods a lot last summer doing work for the yard. I developed a bad looking rash in both legs, but assumed it was poison ivy. I had never had it before. Lived in the city before this.

I mentioned this to my doctors and they disregarded it. They said they didn't see a rash and that tests for it were negative. I then mentioned that most tests can produce a false negative. They didn't want to hear it.

I then found this infectious disease doctor in Boston who specializes in lyme. He said a lot of my symptoms could be lyme. He wrote me a prescription for 6 months of antibiotics before even doing the blood work. I'm kind of unsure if I should take these before the blood work.

I notice most people with lyme have a lot of arthritis and joint pain which I don't have. Basically where i stand now: I have shortness of breath on and off. I get light headed, dizzy, and fatigued from time to time. It can get pretty bad some times. I feel like I am coming down with a cold or flu from time to time. I almost feel like I can never get better. Like I'm always sick. My bowel movements still arent' what they used to be and I have only put on about 5 pounds. I sometimes get naseau and feel like I have heart burn. I also have a lot of trouble sleeping. Not matter what I try. I am also very emotional and irratible at times. Crying out of the blue. Things like that. I do look and feel better than in January, but no where near my old self.

I even saw a psychiatrist for a couple of months. Didn't help

I am basically at my wits end and very depressed. These last 8 months have been hell. Not sure what to do. I am afraid of taking all these antibiotics if it is not lyme disease. I was just hoping for some opinions from people on this site. Please help. I don't know how much more I can take. [Frown]

Posts: 11 | From massachusetts | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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I had Lyme for years and years before I ever had joint pain, so that is entirely possible. I also have the GI symptoms, weight loss, air hunger, heart palps, etc. The fatigue is crushing ... worse than the flu.

Did the doctor do the blood test and you're just waiting for the results?

He might want to see what your reaction to the abx is because that can help with a diagnosis ... but it is unusual for a doctor to prescribe abx for Lyme without doing the testing.

It seems to me, and I'm not a doctor, that the lesser danger is taking the abx and having it not be Lyme ... the greater danger is not taking them and having it be Lyme.

With the air hunger and heart palpitations, he should be testing you for babesia as well. Do you have night sweats? That's another sign of babs.

What did he prescribe?

Welcome to Lymenet, sorry you need to be here.

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sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
jamie1977
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I have some night sweats and chills. He prescribed trecycline. Probably spelled it wrong. I'm going to wait for the blood work before I do anything with the antibiotics. The blood was taken today so hopefully I will know soon. How's your story go.
Posts: 11 | From massachusetts | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Well, it's a long story ... I contracted Lyme/Babs/Bartonella 35 years ago! I was able to live normally most of that time with four flare ups that were severe enough that I spent most of my time in bed.

This time I got sick about four years ago. Last November, after researching on the internet, I demanded a Lyme test ... I had been diagnosed with Somatization Disorder. So, all this time, I didn't know I had Lyme!!!

My Lyme test was very positive, and I started treatment in Jan.

Treatment takes a long time ... but I am seeing improvement.

I saw my LLMD (Lyme Literate MD) this week and he says we're in it for the long haul, it's going to take a lot of time because I've had it so long.

Do you know where your blood work was sent? Is it doxycycline? How much did he prescribe per day?

With your "classic" babesia symptoms, I'm with your doctor, sounds like Lyme. Lyme tests are notoriously inaccurate, so you will probably want to treat even if you get a negative test. Personally, I would start the abx. If you have a Herxheimer Reaction, that will be confirmation that it's Lyme!

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sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Geneal
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Dear Jamie,

Your symptoms sound very much like my babesia symptoms.

Sense of imbalance, air hunger, night sweats, etc.

I don't know about doing 6 months of antibiotics prior to testing.

I do know that Igenex in Ca. (the lab that I would recommend to do your Lyme Western Blot)

Recommends 30 days of antibiotics with ten days off and then drawing the blood.

Please make an appt to see a LLMD.

BTW, what antibiotics did the doctor write a Rx for and what dosage if you don't mind me asking.

Hang in there.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Itsy_bitsyone
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I had Lyme for 7 years before my joints started. Mine was just fatige, memory, and eye problems until then. And I was a kid.

I, like Six, went almost all my life without dx (30+years), with about every wrong dx in the world plus being told I was mental, until this past spring when they finally tested me and I, too, came up very positive.

I wouldn't sweat the tests too much. Take your tetra as perscribed and STAY OUT OF THE SUN. I cannot stress this more. You don't want to know what direct sunlight can do to people on tetracycline. I am taking 1000 mg of it daily, because I cannot tollerate the 1500 prescribed to me!!

I know a lot of folks recommend getting off the abx for testing but I wouldn't myself. Even after several months on abx, I still test positive.

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Lymester
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Hi Jamie,

Sounds the same. originally infected in 96, 3 wks abx. Got through it, but around 2001 IBS etc. 2003 vertigo, numbness, pain, fear of seizure, I knew something was going on. Progressively got worse with neuro issues, slurring, eye darting, staggering, pain.

Went to LLMD for over 1.5yrs with abx treatment and combo for babesia.

I feel that the season changes or barometric pressure changes make me feel the WORST. Today it is happening and that's why I am writing.

Please see an LLMD for yourself. Don't delay. You can feel better. Be prepared for "herx".

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Lymester

Posts: 519 | From CT | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
   

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