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Posted 8/23/2009 6:49 AM (GMT 0)
After doing better on bactrim for 2 months, ive relapsed and my llmd switched me to flagyl.  ive gone down hill on the flagyl and now i have high anxiety and panic, depression, facial tingling in the afternoon, afternoon 100 degree fevers, joint pain, flu feeling, burning, extreme fatigue.    i need this gone!  ive had lyme since june 08 when i started with the worst panic you could imagine.   i also have ulercative colitis/chrons which flared and i was on 7 months of prednisone and immunosuppresants and must have made me much worse.

my llmd has tried me on orals and i feel now back at square one,  i asked 2 months back for IV and he said my insurance will only cover 28 days.   however generic ceftaxonine is only $10.99 per 1gm vial and i can afford that fairly easily out of pocket.

whats everyones experience with IV?  please give me details, pitfalls, as much as you can so i can have as much knowledge as possible. 

for anyone who went out of pocket, am i underestimating costs?  i knw i need saline, and probably other things too.

any  info duly appreciated :)

Vin

Posted 8/23/2009 12:29 PM (GMT 0)
Vin-

So sorry you are having issues.

IV does not come without its risks. Many loose their gallbladder in spite of taking precautions. There is the risk of infection/septic shock and having to have the PICC line pulled.

Maybe you just have not been on the right combo of orals. Were you on Flagyl alone?

I know this is fustrating..lord I know. I have fought this for 2.5 yrs in treatment and am just now seeing the light at the end of the tunnel, and no, it is not a train this time!

Flagyl can be a very tough drug to take, and it sounds like you had one major big herx from it. It has been said by many that when you think you are done Lyme treatment, take Flagyl and see if you have a herx from it. If so, you know you are not done treatment yet.

What orals have you been on and in combo with one another? How long have you had Lyme and do you have any co's?
Posted 8/23/2009 3:23 PM (GMT 0)
I lost mine. (gallbladder)

I don't see in your description of your medical care a doctor that has any idea of how to treat a sick Lyme disease patient. If you are taking Flagyl as mono-therapy you are being abused, or experimented upon, or worse-yet have an ignorant physician.

The level of disease caused by cystic Lyme has never been proven to benefit being treated during active periods of infection. The Weldon protocol adds metronidazole to two other antibiotics to kill the cystic forms that become so as a result of other antibiotics in the regimen.

The conventional thinking is that under-reporting of co-infections is the primary reason for persistent cases of Lyme disease.
Posted 8/23/2009 7:30 PM (GMT 0)
1bitten2xshy, rdatman-

Some history:

Thanks for replying. I tested negative for all over co-infections. I most likely got lyme last june. the previous years i had been on alot of predinisone for my colitis/chrons disease issues and i am sure if i had lyme then, it would have flared. Last June 08, i started with having 24/7 panic attacks, crying, depression that lasted for almost 3 months. I was admitted psychiatrically twice. At the third month of my psychiatic issues(ausgust), i had what felt like the flu for a few weeks. but the panic and ridiculous anxiety made me not even care about that. afterwards towards the end of august, early sept, everything cleared. then about 1 - 2 weeks later, i starting running a fever, had severe depression, crying, and bad joint pains. my colitis was also flared up severely and i was in the hospital in IV steroids, cipro, flagyl. Its been a struggle ever since but at least the colitis has been in remission since december.

I was diagnosed by my gastro in february 09 based on a high lyme titer(i think it was like 1.81) and also the presence of 4 lyme specific bands on quest WB which most likely would have been fully CDC positive but I was still on high doses of steroids which suppress my immune system big time plus being on a chemo drug for maintence of the colitis issues. I then sought out an LLMD in march and was diagnosed on the spot, tested for co-infections, and started oral doryx 200 mg for a month to start fighting what he considered was a bad infection. The next month, i went to Bactrim twice a day, and i herxed severely for about a week, but then afterwards it felt like i was making some progress. I thought I was on my way back to being cured. Mid-May of this year, I got very sick again and didn't get any better as time went on. LLMD changed my drug to flagyl 3 times a day( he told me to start slow as he was expecting severe herx, and each time i increased my dosage i thought i was going to die. panic, couldnt breathe, extreme fatigue, chest pain, crippling joint pain, brain fog, etc). I was only able to stay a little bit stable on the 2 pills of flagyl(250mg each) a day. I was also taking 1 bactrim pill a day with flagyl because I could tolerate nothing higher. just too sick.

Current:
A few weeks back I felt i was getting better so I was able to wean off my pain medication(3 percoset 5mg a day.) I felt like i was making progress again and in fact had one good day where i felt normal, but then 7 days off pain medication, panic, depression, crying, fever(100 every night by 7pm ..starts around 2-3 pm, breaks by 11 pm), big time fatigue, flu like, burning, etc all came back. On thursday my lyme dr told me to stop antibiotics until I see him tomorrow. I went to the ER on tuesday and saw my lymphs, and abs lymphs were low and he thought my body needed a break. Tomorrow we are going to talk about some other things.

He did say he would put me on IV antibiotics from the beginning but my insurance wouldnt cover but 28 days and he thought i would need a bit longer than that. My girlfriend works in CVS pharmacy, and Generic rocephin there is 10.99 per 1 gram and $50 for brand 1g. I can easily afford that out of pocket if necessary as I do have a good job and have somehow maintained it.

I am getting to the point where I can't do anytihng without pain medication and i do feel more cravings for it but unfortunatley its the only thing I can do to live as of this point. I can't change my psychiatry medicine for cymbalata or something like that because i am able to at least work through this mental BS with my current combo and i am not willing to endure greater mental suffering. Ultram doesn't seem to work for pain and i tried that for 3 months.

This is a tough road. I feel like ive gotten worse and I just want this to be over. I have hope for the future, but living now is almost impossible. Thankfully I have a good team of doctors(i believe) and good support from family, friends, and gf.

Vin
Posted 8/23/2009 10:53 PM (GMT 0)
Welll the meds you have been on to date are not enough. You need to be on a combo..Flagyl alone will not do the trick.

Did you test positive for co's? If so, many many LLMD's feel they need to be treated first before we can get rid of Lyme.

Infuserve (google them) are a pretty inexpensive place to get IV supplies and all the good stuff that you will need if you choose to do IV.

Please know however, for alot of people IV has not been the "magic bullet" as we all hope to find. Some people have found they have to be on it for 6 months or more..and do find improvement in symptoms but not totally well.

After IV you need to follow up with orals as well.
Posted 8/23/2009 10:54 PM (GMT 0)
Also wanted to add that Walgreen's OptionCare is another pretty decent place to get supplies as well..and they do take insurance.
Posted 8/23/2009 11:18 PM (GMT 0)
Yes I had tested negative for all co-infections. Not sure how reliable those tests are. I was on a combo of bactrim and flagyl, could only tolerate up to 2 pills of flagyl, and 1 pill of bactrim at the same time though. I guess you are right it is not enough. My llmd said to increase them once i was able to plateau and become somewhat functional again, but alas I have not. And yes I understand that it might not be the magic bullet. This is so frustrating! I will discuss all of this with my LLMD tomorrow. I am going to have a nice list of things to go over. Thanks so much for your insight. This place is truly great :).

Anyone else with rocephin experience let me know. If we decide to do it, it really kicks my butt, i can always work from home so hopefully i won't have to miss time.


Vin
Posted 8/24/2009 12:17 AM (GMT 0)
I did do the IV...did not see any improvement. After 2 years of treating I am almost to the very end (yeah) and it was on a triple abx combo that I did the best!
Posted 8/24/2009 1:02 AM (GMT 0)
which did u do the best on? and which symptoms have resolved and how much of ur life is back ? :)
Posted 8/24/2009 1:50 AM (GMT 0)
I agree, and that is what I was getting at. I took 600 Rifampicin, and 500 doxy for 6 months. Then I added levaquin, just to make sure about the Bartonella even though I tested negative (because I have some odd but clear-cut Bart symptoms.)

I am now taking Flagyl and Roxithromycin and might add Claforan IM 1G BID.

This is an illness that requires much more aggressive treatment than your 'LLMD' is offering-- are you sure he deserves the title LLMD?
Posted 8/24/2009 2:18 AM (GMT 0)
I think you are correct rdatman. this needs to be more extensively treated.

he has been treating lyme for 25 years and he does seem knowledgeable as i have done extensive research myself and he seems up on the latest info. i will dicuss with him tomorrow options. he did tell me he doesnt necessarily treat aggressively right away because of how severe the herxing is. he likes to kill it in stages and get more aggressive as we go. does this seem unreasonable? Its been very hard for me to go on the stronger antibiotics because of how severe the herxs are and me not wanting to miss more work so he does tell me to stay on a lower dosage until i can tolerate it. so it may not be all his fault as i have been trying to ease into the treatment but i guess this is just not the way to do it. my own feelings make me wonder how much of this 'herx' is truly lyme versus just a reaction to the antibiotics themselves. should ignore how sick the herxs make me and just bite the bullet and murder this thing? i am going to him tomorrow with a list of questions and concerns and ill see how he answers them and ill review them with you guys here. if it seems unreasonable i will try to find another llmd. i am in new jersey and i know there are some good ones around.  

i guess im frustrated by as of the past 2 months, being back to square one even after i thought i was getting better.   ive also been sick with colitis and chrons for years too, and through it battled to still succeed against all odds, have a great gf, friends, a life, etc and its hard to believe that its all being taken from me a little at a time.  i just want a break from the fighting so i can sit back and relax :).   but so far this has been the straw that broke the camels back.  i know one day this will be over,  but im used to fighting tooth and nail and its frustrating to not see results and feel so helpless.   ugh.   my wah wah is on tonight :).

btw, rdatman how are you doing with treatment? how long have you been sick and are you seeing any improvements?

Vin

Posted 8/24/2009 7:51 AM (GMT 0)
Vin,

You sound alot like me. I herx on low doses of antibiotics too. I think your doctor is doing a great job. He's listening to you. If it's important for you to continue working, you may want to stay at the lower dose. Herxes can get pretty bad. This is just my opinion of course:) I hope you feel better soon.
Posted 8/25/2009 2:13 AM (GMT 0)
Very productive discussion with llmd. the issue wtih him is he is very soft spoken and doesnt necessarily hand out information. but he is very bright. He said his plan all along was to first was to titrate me up on flagyl, and then put me on a full dosage of bactrim that i had been taking.
he said based on my history i have to go slowly as i herx extremely bad.

he said based on my higher fevers, panic, high constant anxiety, depression, pounding headaches, burning feet, and some other symptms, and since i havent seen improvements in a few months, hes clinically diagnosing with me with babesia and suspects thats why i haven't been getting better and why i am very very sick still. he said the igenex lab only tests for one strain when there is at least 11 strains documented in humans.

he said IV is not an option right now as it will do nothing on the babesia.

as per discussion also, he wants me to work from home as much as possibe(i can alot if times beacuse i am a system analyst/computer programmer), and to really just batten down the hatches. my new scripts are 2 bactrim, 2 zithrowmax, and 2 malarones per day. also re-iterated that he will get more aggressive as time goes on.

I am going to research maralone to see what this drug is gonna do to me.


Vin
Posted 8/25/2009 2:33 AM (GMT 0)
Vin,

That's great that you can work from home. Good luck with everything.
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