posted
I have been on orals (amox, nystatin, zithro, malarone) for a little over two months. I have also been keeping a gluten & dairy free, and trying to avoid sugars although i could probably do a better job. at my llmd appointment on thursday, my dr. decided i should try rocephin iv.
i was symptomatic for 14 months before getting my lyme diagnosis. my symptoms included leg weakness, muscle tremors, muscle spasms, heart palpitations, chest pains, pin pricks/tingling, eye floaters, eye pain, seeing flashes of color in vision, hand tremors, derealization, panic attacks, axiety, depression, brain fog, memory problems, constant lymph node enlargement, and just general malaise.
i find that i am still confronted mostly by my neurological symptoms. especially the neuropathy and eye problems. my lymph node in my neck is also still hard and enlarged. i am confused as to what to do because i wake up some days and feel as though i am close to being well, i dont notice many symptoms and begin to question this disease. then i have days where it all seems to come right back.
i just don't know if im "bad" enough to be on a picc line? i am frightened by the idea of a picc line although it wouldn't stop me if i felt i really needed it.
i am 23 years old. my igenex tests were igm 4 bands positive, 1 band indeterminate, igg 5 bands positive, and positive test for bartonella.
does anyone have multiple days a week where it feels as though symptoms seem to subside, and you question the intensity of your illness? i am just very confused and feel very alone in making these decisions, especially because my father feels as though lyme cant be as intense as it seems to be.
thanks for your help and support. sorry for the rambling post.
Posts: 28 | From NYC | Registered: Sep 2010
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posted
I personally, don't like taking the slow road with this disease. A picc line is not as scarey as everyone says. You have to be careful, pragmatic in your daily living and learn how to go about respecting what is going on.
There are some better things with picc lines. I raised a toddle with one for a year. Kept it clean, covered it with cotten shirt while sleeping. And in public. I bathed and did not shower and it was fine. May cancer and chrohns patients have lines all the time. That being said it should be respected for what it is.
Good luck to you
Posts: 128 | From Raleigh, NC | Registered: Apr 2007
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posted
My question would be why the doc has not tried to treat your bart yet? The IV rocephin is supposedly bacteriostatic for bart but not bacteriocidal. And if you do in fact have babs you have not been treated for that nearly long enough.
Does the doc plan to continue the babs treatment while you are on rocephin?
Personally I would want to at least try treating bart with orals first. In my opinion the rocephin is more likely to be effective if the bart load can be decreased first.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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i will be on orals as well as the rocephin. its still new to me but i believe this will be my new treatment plan; IV rocephin, oral zithromax, oral septra ds (trimethoprim), liquid oral mepron, & nystatin. plus a bunch of stuff to correct my adrenals and my heavy metal toxicities.
im worried this is too much medication. im worried im not sick enough to really need all of this.
does anyone ever have times where it feels like you are symptom free for a window of time and then it comes back? has anyone improved on orals but then still needed iv to finish it off?
thanks again for everyone time and input. be well.
Posts: 28 | From NYC | Registered: Sep 2010
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