posted
I couldn't keep track of the last topic. There were 57 posts. So here is a new one.
Humanbeing, how are you doing?
I am just going without counting the days or weeks. I think I am in week 10 or maybe 11 or 12. LOL
This stuff has cleared my neurolyme. I can think clearly and remember things. I can get organized.
But my mind/body still gets so tired and achey. And I am still, at times, irritable. I feel this underlying anger at the world . . . so unlike me . . . and it comes out sometimes or wants to come out inappropriately.
So I am wondering what my next step will be, even though I have six months of this stuff, plus supplies, and I plan on taking it for six months if my LLMD thinks its a good idea.
I am interested in how any of the rest of you are doing on rocephin. My daughter's neuro relief has not yet come. She is getting her THIRD picc line. They keep coming out.
That's all for now. I've got to write my check to the Lymenet group.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Glad to hear that it's easier for you to think now! That must be a great relief! Sorry your daughter is getting her third PICC line! How old is she? That was the scariest part for me! I was so afraid the line would go the wrong direction and end up in my neck!
I'm off the Rocephin now...almost 4 weeks now. I'm still feeling pretty good but I have swollen hands and feet that just won't go away! I'm still weaning off the Prednisone so that may be part of the problem...but I'm on a very small dose.
My next step is trying to get the insurance company to pay for the drugs. I even got a letter from my primary stating that the Rocephin was an appropriate course of therapy to correct my "Inflammatory Myopathy." (I never tested positive for Lyme...but ALL the docs agree on this diagnosis.)
I also have a letter from my former boss stating how sick I became and was unable to continue to work. I'm hoping that the before and after "pictures" will persuade the insurance company to have pity on me!!!
Hope you continue to feel better...and hope your daughter's PICC will be her last one!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Hi guys--I hope you don't mind my popping in.
I just started IV rocephin four days ago and I'm an absolute mess. I'm glad to hear you're both doing better. I can't imagine feeling better from this stuff the way i feel now.
The funny part is all it does is make me extremely tired and neurologically challenged to say the very least.
I'm only on it for 28 days, but I don't feel like I'll make it.
It's been goos to read your Iv rocephin posts though!
Take care and good health to you both, ' Ashley Posts: 77 | From New York | Registered: Oct 2006
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posted
Ahsley, and anyone else who wants, pop in! It's all good.
Hang in there. The rocephin is probably causing a herx. My 19 year old daughter is in the same situation. I just support her to keep going with the medicine. I felt like she does, and like I imagine how you do, and it does get better. But man is it hell.
Glad to hear your news Karen. I don't want to butt in, but it seems like a lot of people on here have said that steroids often made lyme worse . . . ?
I am trudging through. I worked today from 9:30 to 7:00, with a few hours break in the middle -- incredible! But now I am exhausted and achey.
The thing I hate the most right now is when I get irritable -- noises, people, little things -- and I just vibrate with frustration and have to remove myself from other human beings, for their sake and mine. lol
The second thing I am afraid of is that the rocephin is treating neurocog lyme, but the joint and muscle aches remain. In this area of improvement, I am only 30-50%. But you know what? I can live with that.
And now, for my drip, drip, drip...
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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I know that the steroids are not a good mix with Lyme...but it's a very low dose and was approved by my LLMD. It was one of my first questions because I had read about that prior to seeing the LLMD. At the time I started, it was the only thing to give me some relief from the pain while the docs continued testing to figure out what was wrong with me.
I'm in the process of weaning...but it has to be slowly because I've been on it since May and my body has to start producing it on it's own. My goal is to be off of it completely by the end of the year.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
hi everyone- just wanted to give my experience with
rochephin... well, one year ago i took 20 shots @
3 per week and felt like it was the best treatment
i had come across for lyme!!! I started to "overlook" the pain that each shot
came with knowing of it's positive effects it had on me.
THEN...my life got crazy with a divorce (long sordid story) needless to say i stopped TAKING EVERYTHING that i had been on for years, (due to the financial mess that marrying a con-man can bring!!!)
funny thing is that i felt very good... for about 3-4 months... then it came back with a vengeance like never b-4.
Sooo, i was able to sell my car and get more rocephin (i was always on I.M. not I.V due to financial restrictions)
My doc upped the doses to 5x's per week and i
started to find my way around town, could type
again, etc.... until the old gall bladder decided
to take an ugly turn! It will be removed but i am in a long line of others(life w/o ins.) I cant take anymore rocephine until it is removed!
then i WILL graduate to the I.V. picc (finally)
once again with rocephin, but no gall bladder.
I hear from all the posts that no one misses there's, except tincup?(some difficulties?)
but i look forward to getting on the I.V.
It has taken me 4-ever to retype this post(mixed up letters and all!) and i have been in bed for a week now, with lots of symptoms back... My take on R.....
i really like the effects of the clarity of mind it seems to bring to my brain! hopefully this all makes sense, and i will keep all posted with my progress...or lack of
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
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posted
I had to stop Rocephin because I was in tons of pain in the place where my gallbladder is. I never got an ultrasound, it went back to pain free in two weeks after stopping. As I didn't know where my gallbladder was before Rocephin I would say it was probably my gallbladder, but I have no proof.
It hurt so much I couldn't walk. Or eat. Or move. I think it must have been inflamed.
It is apparently unheard of to get a reaction that quickly, and I doubt my Dr.'s believed me but I also turned gray (gray skin, gums, not pretty) on minocycline after 4 months and it usually takes 2 to 3 years, and that at least was concrete.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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I have been rocephin now for three weeks. The last 4-5 days have been brutal. I just feel lousy-flu like with awful headaches. I usually feel pretty good in the mornings but after infusion 2-3 hours later it gets rough.
When I first began IV my sx were mostly physical flare-ups within 48hrs. Left arm felt like it had been beaten. This was always my more symptomatic arm in the beggining. I also had terrible ankle and wrist pain. This was a symptom I suffered with as a child. Probably my 1st sx ever.
I was first diagnosed with Lyme 21 months ago. I took orals for 20 months with marked improvement. However when I stop them I would get terrible headaches within days. I also have brain lesions and pos for lyme in spinal fluid. I will say my reaction to IV is nothing compared to starting the orals but the rocephin has really been kicking me to the curb. I was beddriden for 2 months on the orals. Feeling like I had been beaten head to toe.
Don't feel like I am headed back there. Just wanted to know if this sounds familiar to anyone? How long will this last?
Take care and peace.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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Here's just one perspective on the effects of Rocephin infusions.
Our daughter has been infusing Rocephin via a PICC line since June of this year. She initially did infusions for 16 weeks.
She was then put on oral antibiotics (Ketek) only, for a period of 3 weeks.
She's now back on the Rocephin and is continuing the Ketek.
During her initial treatment with Rocephin she became extremely ill. For the first 6 weeks, she was either confined to her bed or wheelchair.
She slowly began to improve after those hellish times. Her joint & muscle pain significantly subsided as well as the severity of her migraines.
In addition, her cognitive abilities also improved. She was really struggling with her ability to think or speak clearly.
During the 3 weeks she was off the Rocephin, her symptoms began to worsen again.
She's been back on the Rocephin since November 3rd. She's again experiencing the same Herx reactions as before, increased pain, increased flu symptoms, etc.
We're hoping that everything will again improve. The Rocephin has really been the only treatment, both Abx and holistic, that have provided any real tangible relief.
Hope some of this helps.
LymeDad
Posts: 681 | From California | Registered: Oct 2005
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My daughter was prescribed Actigall as part of her treatment with Rocephin. Her LLMD has checked her liver/gall bladder/kidneys once a week since June.
Isn't this a normal procedure when Rocephin is involved? We were told from the very first day that Rocephin is known to adversely effect the gallbladder.
Posts: 681 | From California | Registered: Oct 2005
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Thanks to Jeff for continuing the buddy post. I have been on rocephin 2gms/day for about 10 weeks.
Last week I would've said I was completely out of the woods and on my way back to normal.
Then during my normal monthly flare, the pain level went off the charts.
I had five straight days of full body nerve pain, headache, nausea, difficulty breathing and a severe ache under my right rib which is certainly gall bladder.
Today, it is receeding. I will now come out of it and feel great for a few weeks till the dreaded flare.
I wonder if cyclic flaring will last forever with or without treatment and why the flares don't get LESS intense...I'm pretty discouraged.
But I am grateful for the few weeks of the month where rocephin gave me my life back...
Jeff, did you experience worsening of symptoms on rocephin at month 3 and beyond?
Thanks for bein here Kim
-------------------- We are spiritual beings on a human journey...
I am experiencing alot of regression in the past few days. I've been off abx since Oct. 17th and I'm back to constant joint stiffness and some muscle pain. I don't think the muscle weakness has started again...but it's hard to tell when everything hurts.
I go back to see my LLMD tomorrow...and am hoping he puts me back on some abx. I was on Rocephin along with Azithromycin...so I don't know which brought the most relief. I will go back on IV if necessary but hoping orals will work.
One of my early symptoms (besides joint and muscle pain) was gaining 15 pounds...but all in my legs. While on IV, I suddenly lost 10 pounds without diet or exercise and noticed most of the swelling had disappeared - now it's all back again!! Just wearing socks leave a horrible mark on my ankles!
It's the little things that set me off...like not being able to get shoes on, not being able to wear my wedding rings, not being able to squeeze the toothpaste, etc. And I really get aggravated by not knowing how long this will last!!!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Michelle, On orals 8 months before IV. Felt better enough to get outa bed month 3
Don't know how long on IV but hope at least 6 months. The IV gave me the biggest jump in recovery...I am wrestling with the 28 day flares...some months are really bad still and I don't know if it is herx or drug not working??
Karen, why did doc stop all your abx...were you symptom free for a few months? This is all such a pain.
Jeff...glad your feeling better. Cant wait to be there all month long. Kim
-------------------- We are spiritual beings on a human journey...
posted
Michelle, On orals 8 months before IV. Felt better enough to get outa bed month 3
Don't know how long on IV but hope at least 6 months. The IV gave me the biggest jump in recovery...I am wrestling with the 28 day flares...some months are really bad still and I don't know if it is herx or drug not working??
Karen, why did doc stop all your abx...were you symptom free for a few months? This is all such a pain.
Jeff...glad your feeling better. Cant wait to be there all month long. Kim
-------------------- We are spiritual beings on a human journey...
My symptoms go up and down. They do get worse during the full moon. I was quite sick yesterday and today, but I think that is because I overdid it with traveling and some consulting work.
I did not notice any difference @3 months -- i think I am just there right now on IV. On orals, i did not really notice any difference until I treated babesia with mepron. Then I saw a big difference.
right now all i want to say is: I HATE THIS DISEASE
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
I don't take flagly or tini since my ID doesn't believe in cycts causing probs...(this is probably why I am still sick?)
I have an apptmt today at noon. The office called and said "we need to see you"...I have a bad feeling that the IV is coming to an end but will keep yall posted..
Blessings for a good day!!!
-------------------- We are spiritual beings on a human journey...
posted
Doesn't believe in cysts causing problems????????? Well, that is a unique perspective.
I took 250 mg flagyl 3 x day. I had to pulse it because it causes for me some bad reactions. I am just getting ready to start again. Yuk. I hate flagyl. I want to start on tini.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Kim, I had been basically symptom free for about 5 weeks before stopping the IV. I asked the LLMD yesterday about needing to be symptom free for 2 months and he disagreed. I don't know if that is based on my specific case or his years of practice.
He did give me a new RX of orals, but I'm waiting to see how my blood work turns out since they were able to measure the degree of muscle involvement during the course of my treatment. If the levels have gone back up then I'm definitely starting the abx, if they are still normal, then I'm not sure if I will take the abx...will definitely be filling the Rx though!
I wish there was a quicker cure!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
My worst symptoms were joint pain affecting every joint, severe muscle weakness, irritability, not able to find the right words when talking, sweating profusely and overall "not feeling good"...ALL AT ONCE!
My 5 weeks of "symptom free" were more like operating at 90% of what normal used to be. My joints no longer hurt, muscle strength improved, irritability disappeared, word confusion disappeared, etc.
What remained was inability to walk long distances or walk quickly - it brought asthma type problems. And my hands and feet remained slightly swollen but didn't hurt.
With the regression, the joint stiffness has come back, the hand/feet swelling increased which makes them hurt, and irritability is coming back.....or maybe it's just my kids today!
The LLMD thinks the swelling may be causing the stiffness and that the small dose of prednisone I'm still on may be causing the swelling. Can't wait to get completely off the stuff!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Gambler- have you had an ultra sound of your gallblatter?
I started Rocephin and within a matter of weeks had pain so badly I ended up in the ER.
They told me the usual-I had indigestion (I've been told that almost every time I've gone to the ER-despite me NOT actually having indigestion).
I made the doctor do an Ultra Sound and he found a gallstone. SURE ENOUGH-but he said that it had been there for atleast a year.
Although you may have only been on Rocephin for a short time, it could have prevoked the gallstone-as it did me.
The pain can come once in five years or more often-but if you have a gallstone-you will be in pain again.
I have had my gallstone removed since I had 3 attacks in 2 months.
I guess my point is-that just because the pain went away doesn't mean you don't have a gallstone-so you may want to get that checked out-because people can get them for all sorts of reasons and maybe you had it before u started the rocephin! Just a thought )
Linds
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
Kim, Yes I take flagyl off and on. It makes me depressed and symptoms so worse . . . I pulse it. I also like to take breaks when there are vacations or holidays so I can have a glass of wine. I take 750 a day, 250 3 times a day. I hate flagyl.
Karen, your symptoms sound exactly like mine. EXACTLY. Weird, huh?
I think I will change my web name to: Sicko from San Diego
LOL
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Hello everyone! I just wanted to say I enjoy reading your posts for advice. I have been on orals for ~8 months and my LLMD is considering IV rocephin soon. I am pretty nervous due to all of the side effects, esp gallbladder, but also optimistic that I may finally start feeling better.
I would love to hear any advice you guys would like to share to one who is considering starting IV rocephin. I am definately taking notes!!
-Amy
Posts: 73 | From just outside of Lansing, MI | Registered: Jun 2006
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I started Bicillin shots Oct 18. I had my line pulled after 8 weeks.
I not holding my breath because I don't look good in blue, but I have to say I am feeling pretty ok.
I do Bicillin 2X a week. The shots don't hurt however my behind is bruised all the time. Who cares though cause I don't have to look at it.
I just added a low dose of thyroid med which is really helping with fatigue, and regulating body temp. I am sure the lyme totally screwed up my thyroid, and like so many other things thyroid symptoms are alot like lyme symptoms. It gets so confusing after awhile.
I keep my rocephin peeps in my prayers every night.
I dont know your whole medical situation so take this for whatever it's worth . . .
The rocephin has been GREAT for me and I have had few side effects. My doctor is not doing anything for gallstones, she does not believe it is that big a problem.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Amy, my doc wasn't concerned about gallbladder issues either, but did tell me to report any unusual pain any place in my abdomen. I also took Milk Thistle to help my liver function tests...not sure how that may have helped avoid gallbladder problems. I do know that I can live without a gallbladder but not a liver!
Kathy, Glad to hear you are doing well. I'm wishing I was getting shots today! My hands and feet are badly swollen but the LLMD doesn't think it's a relapse but did give me a RX for orals which I will start today. I've been stockpiling abx so I probably have enough to last 3 - 4 months.
Thank you for your prayers too, Kathy! I know the Lord hears them, and I know that some nights just knowing others were praying was all that got me through the night!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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