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Lyme Disease
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Posted 8/2/2010 4:04 AM (GMT 0)
 ey guys you all have been helpful in the past so I am hoping that you can help me in the past. I have been sick with Lyme and coinfections for 9 years now since I was 12. It SUCKS mad as Im sure you know. So I have been on everything from biaxon zitheomax and mepron to having a PICC line for 7 months. So I am always suffering from horrible head and eye pain, muscle pain and cramping and spasming in my calves, hamstrings, biceps, and forearms. Joint pain in all the joints like knees, ankles, fingers, feet, and toes. HORRIBLE back pain lower and upper neck pain that feels so bad it feels like gritty you know? I have all kinds of vision trouble blurriness, cloudiness, and doubled. And for the past year and a half I have been havinf horrible stomach issues like pain and nausea and also gerd. Like last winter I had this HORRIBLE stomach virus and my stomach has never been the same. My doc says he thinks I could have lyme bacteria in my gut so that could be why Ive been haning stomach trouble. I have lost almost 60 pounds and my doc says I amd manutritioned and have malabsorbtion. A few months ago I was on Ceftin, Mepron, and Zithromax and I thought that it was helping but than I got REALLY sick again so my doc took me off the Ceftin and gavw me Omnicef instead and I am to continue with the Zithromax and Mepron. So I have just been having such a hard time latley just all of my symptoms and so intense like ALL the time especially at night. I am up all night just crying because I am in so much pain. I have hydrocodone and tramadol but they wear off so quick. My doc dod just tell me I could up them so I hop that helps. My doc says I am herxing so I hope that is true and that I am kicking some bacteria but but this is really hard. I mean my mom and dad are always saying that it will get better and easier but like when? I mean this has been years and years for me laready and I just cant seem to catch a break. Does anybody have any tricks or anything you could suggest to help me with the pain or nausea or anything? Also just one more thing... my best friends was sic so she went to the doc because she thought that she had strep throat and her doc did a quick blood test and said she had mono so my doc told me to stay away from her and that if I got mono it would be really bad for me because I have a compromised. But my friend called me a fwe days ago and said that the second blood test the one that is more specific for testing for mono came back negative and that her doc said that it showed that she probably had mono at some point in her life but didnt have it now. So my mom who after the first test and diagnosis didnt want me to see her thinks that after the second test and the doc saying that my frind does not currently have mono that it would be okay for me to see her. what to you think? I mean shes my best friend and I do want to hang out with her but I really cant afford to get mono either so... well sorry for venting and thanks for any help you can offer. -Sandy
Posted 8/2/2010 4:29 AM (GMT 0)
I'm sorry that you are going through all of this. I wish I could be of more help. My symptoms have been more of the neurological kind than the pain related kind.

If you are on Mepron and Zithromax, then I assume that you've been diagnosed with babesia, since that is what these medications treat. Has your doctor mentioned anything about taking artemesinin? It's an herbal medication that has been shown to be effective in treating malaria and babesia. Mepron and Zithromax can be harsh on the digestive system, but I haven't had any noticeable problems with artemesinin. It might be something that you can tolerate.

Detoxing may help lessen your symptoms, but I'm not an expert on the subject. For me, the best way to detox is to drink plenty of fluids, especially tea, and to exercise. Obviously, with your pain issues, exercise might not be an option, but perhaps you might find some relief with some movement in water, like a swimming pool or hot tub. I have only minor joint pain, but I find taking a relaxing swim to be very soothing.
Posted 8/3/2010 2:09 AM (GMT 0)
Hi JIJI,
I am sooo sorry to hear of your troubles!
Does your doc know that you haven't already been exposed to the EBV virus? Over 90% of the U.S. population carries the virus, most have never had even 1 symptom because their immune system keeps everything in check.

I deal with enough pain. I seem to go through cycles about every 6 - 8 months, where my pain becomes waaaayyyy too much for me to handle. I go to my gp, who is very understanding, and he understand the kind of pain I have & will write a 'script for pain meds. I wouldn't be able to function at all if he didn't. Maybe you should ask?

I know detoxing has helped me a lot. I do detox bathes at least a couple times a week. With as ill as you are, I would suggest that you start with staying in a detox bath for only 5 or 10 minutes, until you know if it would be too much for you. Also be sure that you don't use too hot of water. When I first started detoxing, I would get a migraine, but Deejavu suggested I start off much slower & then the detox bathes didn't give me any trouble & I was able to quickly up my time in the bath each time. You may also only be able to handle a detox bath once a week to start.
The other thing I am sure to do is to drink anywhere from 3 - 4 quarts of water (W/lemon) each day, I did have to build up to that amount, as I was never much of a water drinker... until now. :)

I sure hope that you find something to help you feel better!!
Posted 8/3/2010 5:01 AM (GMT 0)
Have you taken any parasite meds? have you done extensive stool test to tell exactly what is going on. Mine was expensive but told the whole story with the parasites and the condition of my gut..I think for me this was the most helpful thing I did. and I hardly get stomach pains as long as i watch what I eat. I took nyastatin too for candida . ticks czrry deadly parasiites too. your symptoms are very much like mine before I got the stool test taken care of but you have to do a good test. mine was $50 from metmetrix but it save me so much agonizing pain.

have you ben on any steroids? 9 yrs of hell...I know the feeling
Posted 8/3/2010 5:54 AM (GMT 0)
yes I have taken steroids in the past because i used to get really bad asthma flare ups when i was a little younger but I have not taken steriods recently as I hear they are bad for Lyme.
Yes I have been tested for EBV as well as cfids mono and all the rest before I was diagnosed with Lyme about 4-5 years ago i really dont think it could be EBV. As for my stomach my gastro guy and nutritionist think I have a gluten intolerance but not full on celiac disease so I do eat gluten free which I do think helps like when I think of where I was last year at this time. Still awful and horrible but like a little better/difference with no gluten. Now I have had a sore throat for like 3-4 days? could it be part of this herx that my doc thinks im having? i know its not a cold for certain because i dont go out and my fam is really careful and NONE of them have been sick so I cant help but to think that it is from the lyme/herx. have any of you guys had that?
Posted 8/3/2010 12:18 PM (GMT 0)
Bucci, what parasite meds did you use that helped you?

Gary
Posted 8/3/2010 12:32 PM (GMT 0)
JIJI,

You may want to go to a Rheumatologist and get tested for Rheumatoid Arthritis. You have the exact same pain symptoms that I have and I have RA. Whether Lyme causes it or not, it needs to be treated.
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