OK - terrible Lyme brain today - one more thing. I have suffered NO ill effects from the removal - no diarrhea, my digestive function is beautiful. Sorry for all the posts.......
Oh, and I have a PICC (since 2/09) - LLMD keeping me on Rocephin for a year, so not sure how to advise about the port before/after surgery...can they do it the same day to save you an extra trip??...
Hi, I had my GB out on 8/13 - rocephin sludged it all up. It is irreversible and my LLMD said that actigall has worse side effects than removing the GB. Had the attack in July - at work - GB loaded...
Owwwww....my joints! Was doing so well then bam...the weather gets cold and I'm hurting so badly - hands, knees, hips, even the soles of my feet. Was hoping not to have to ask LLMD for pain...
Thank you all for your responses and I will talk to my LLMD about the Naproxen. Traveler, does it bother your tummy (ibuprofen and I do not get along in that department and I don't know how similar...
I was bitten October 2008, diagnosed in January 2009 (via CD-57 - level 16), put on IV Rocephin February 2009 (still on it), diagnosed with ehrlichia in April 2009, on doxy 400mg daily (still on it)....
Include me in the "temporary toothache club." I'm scared to death of the dentist, so I just kept dealing with it and putting it off. Then one day, no more pain and haven't had it since. Also found...
I've been on Rocephin since 2/25/09 - LLMD wants me on it for one year. Also taking 400mg doxy a day (oral) and 100mg Diflucan - 2 weeks on, 2 weeks off. I started noticing improvement about 4 months...
I bought a shower sleeve from Rite Aid. It has an adjustable drawstring on both sides so you can adjust it to the tension comfy for you (although you have to make it a little tight so water cannot...
I have been on IV Rocephin since 2/25/09 and my LLMD wants to keep me on it for one year. I am also on 400mg doxy daily for Ehrlicihia and Lyme (don't know how long yet - to be determined). When I...
OMG, I am finally seeing some light! Brief background: When I started IV Rocephin in February, my CD-57 level was 16. I was so sick - months went by with little change CD-57 went to 18 in April. So I...
The reason LLMD did not want me on Actigall is because it is normally not effective in gallstones resulting from bilary sludging. Also, it is hard on the liver and that, coupled with Rocephin being...
I've been on 2g of IV Rocephin since February 25. The plan is to have me on it for 6 months to a year. I was fully warned that bilary sludging was common in patients who use Rocephin long-term. My...
I had my results in less than a week. My LLMD has them faxed to her....
It's funny I saw this today. My LLMD put me on Cozaar (50mg) last month - bp was out of sight (has always been fine before Lyme) and seems to get worse around this time of the month (24-30) during...
I had a massage last Saturday and the entire day I felt horrible - I drank lots of water and rested and, although I was sore the next day, I felt a little better. But if you do get one, be prepared...
Oh, definitely. I take 400 mg a day and take a break on weekends. But from day one, herx city - especially the neuro herxing. Now I have this lovely little side effect from taking both the doxy and...
I too am on 400 mg doxy and 2g IV Rocephin (so I risk billary sludging as well). I've been on Aciphex for over a year (before my tick bite) for my acid reflux and so far (1 month on the doxy, going...
I have OneNet PPO (formerly Alliance PPO) through the Steamfitters Union. My LLMD told me that BCBS is not very cooperative but she has been succesful in appealing denials with them...sometimes for...
I have been approved for six months. I am going into my fourth month. My insurance company always approves me for 2 month periods. I know I am very fortunate because many will not approve it for more...
I was told by my LLMD that, even after IV is done, I will probably be on doxy or amoxi for the rest of my life - I will probably pulse with it, but she has so many patients who are seemingly well and...
Quoting Scorpio: Just think if it weren't for the select group of llmd's willing to treat us appropriately and aggressively at their own risk, we would be even much worse off. Thank goodness there...
Thank you for your kind words. Oh not to worry - I will definitely keep an eye out for symptoms of gallbladder issues. Oh, and you are right about the surgery - my mom had her gallbladder out and she...
Hello. I began IV Rocephin 2/25/09. PICC line has been fine up until a couple of weeks ago; I can infuse/flush, but nurse cannot draw from it so she is going to put me on Caflow and take the blood...
My CD-57 was a 19, retested 2 months later was a 16 - now I'm on IV Rocephin and 400mg daily oral doxy. All of my other bloodwork was within normal limits (and I have a CBC, CMP done weekly and labs...
Add me to that list. My worst is dropping things - it's like my brain tells me I have it but I don't. Can't tell you how many things I've broken. And sometimes the tremors are so bad and hands hurt...
I'm not sure how much different it would be to do it that way as opposed to IV (except IMs hurt like hell, but hey, Lyme's pretty freaking painful too). But my doc said IV Rocephin is very good for...
I'm on IV Rocephin (since 2/25/09) - are you referring to IM Rocephin? If my insurance does not approve at least 6-8 months IV treatment (I go month-to-month), then my doc is going to try IM...
Been on Rocephin since 2/25/09. LLMD hopes to keep me on in 6-12 months, but my CD 57 went DOWN from a 19 in January to a 16 in April so she put me on the Doxy. So now the herxing is awful, but today...
I got sick in 2002 with Lyme and Ehrlichia, went on heavy abx for 2 years (orals) and felt fantastic - So from 2004-2008 I was fine. I was exercising 5 days a week, lost 40 pounds, felt wonderful....
Why did she think it was not necessary? Just curious. My nurse tried everything last night, more saline, flushing harder, more heparin, having me lie down, move my arms, all kinds of stuff - nothing...
Possibly. Mine was more neuro herxing on Rocephin - brain fog, fatigue, STM loss, and some physical but most definitely more neuro (still on it and still herxing cyclically), but just added Doxy to...
I have had my PICC line in since 2/25/09. Infusion nurse came last night and could not draw blood from my line. Infusing is not a problem - she flushed me out several times and my meds went in fine...
Oh, have you showed your doc Dr. B's guidelines?...
Find a new doc (JMHO). Why bother taking something that isn't going to do you any good? I am on IV Rocephin (since 2/25/09) and and if my insurance keeps approving, will be on that for at least 6...
Oh and sorry - I called you veronica instead of veromia - again - brain is bad today........
Veronica you are absolutely right about us knowing more than the doctors and you are so lucky (like me) who has a doc who will treat aggressively based on symptoms. I had two Western Blots - the...
I too am extremely sensitive to cold, heat, light and sound (can't handle high-pitched sounds or loud music). My startle reflex is through the roof. Unfortunately, another great feature of Lyme and...
I started herxing within 15 minutes of my first IV infusion of Rocephin - the exact same symptoms you are describing. Since I had to have my first infusion at the hospital, they made me stay an extra...
I have been on IV Rocephin (2g 1x daily) since February 25. In January, my CD57 was 19. I herxed terribly for the first three weeks, then that subsided a bit but still pretty foggy and still in pain....
You are having a bad herx from it. This abx is breaking open the cyst form so the other abx can attack what is hiding in the cyst form. If you're only taking it for two days at a cycle, I would try...
I was initially bitten in 2002 - went on orals - did very well...took about 2 1/2 years. Got bitten again in October 2008 - doc put me on orals just to be safe - well, that went over like a lead...
(((((HUGS)))))) I know you're upset - I got my first CD57 in January at it was 19. I didn't get to my doc until late February and she started me on IV Rocephin (2g), increased my CO-Q10, fish oil and...
You don't supplement with low D25 with high D-125 levels because you'd just be feeding the Bb. The Lyme causes the D-125 to take from the D-25 in order to feed the Lyme....
Evidently if the D25 is low and the D125 is high, supplementing can make symptoms worse. I don't know the technical part of it (my doc explained it to me, but my short-term memory is gone), but I...
And I was told NOT to supplement - to just get it natrually from the sun....
I cannot remember my levels - but D25 was low - D125 was too high -...
Wow..that is fantastic! I'm getting ready to start the liver cleanse & fish oil (already do the probiotics, diflucan, IV Rocephin, Doxy-400 mg daily, CO-Q10, atenelol (for tachacardia), and Xanax. My...
I have OneNet and they have paid for two CD-57s at 80% (but that's how they cover all of my labs). It's the only test I've had that proved I had Lyme (normal levels 60-300, mine is 15). But if you...
That test means squat. Ask for a CD57 Striker Panel (LabCorp is the only lab that does this test)- normal levels are 60-300 (mine is 15 and I had a negative Western Blot as well) - I am now on IV...