LymeNet Flash: has rocephin failed anyone?

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Posted by cigi (Member # 6600) on :

after 6 mos of rocephin, my nerves are almost gone (mind seems already), doc is starting me on mino oral, taking me off iv. emotionally loveless, feelingless. scared to death I already lost my personaity, life existed before...but am desperate. depersonalization before belief, taken off lexapro,just left with thyroid med, heart med, xanax and now mino and expected to be a wife,mother, daughter, human being. Am humiliated beyond belief but docs don't know what to do next. bladder out, problems with sodium upkeep...did mino help anyone. took it over ayear ago when mind was going more ocd/panic, but not feeling as lost as i am now. had positives from igenex months ago, spect said global moderate hypoperfusion that no doc has made a big deal about. lexapro off for 2 days, depression beyond belief. anyone familiar. how did you cope without being institutitonalized and mind being busy with thoughts that aren't reality, even though you function as if youve been the same person you've always been? sounds crazy everybody, but if you know me, was one of the most logical people you would ever know. cant take ssri's or tricyclic drugs, cause sodium deficiency with me.
cigi

[This message has been edited by cigi (edited 02 July 2005).]

Posted by Lymetoo (Member # 743) on :

I've heard LOTS of Rocephin failures and/or relapses. After all I've read and heard here, I would never want that drug in my body.

Hopefully someone with experience with it will come along shortly.

I'm sorry you're having such a terrible time with it. Is that the only drug you've been on for the Lyme?

Have you been checked for Bartonella and Babesia yet? Maybe one of those is responsible for alot of your symptoms...??

There are plenty of other abx out there that are very effective. Does your dr have alot of other plans in his "arsenal?"

Why did you stop the Lexapro?

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by cigi (Member # 6600) on :

thanks too too, i stopped the lexapro because its an ssri and in me all ssris drop my sodium. I got my gall bladder out last tuesday out hospital wed., went to commit myself mon and they wouldn't keep me because my sodium dropped down to seizure level. i can't go beyone 1 liter of fluid per day or get sodium deficiency that causes me in hospital and more insane if that's possible. i don't know anymore. I hope your bladder surgery goes well. it was easy compared to the minutely mental stuff.

good luck - mino and maybe if not allergic to penicillin, amoxy. think i just cracked with the pressure of the life, often wonder if its the lyme, but I have a constant reminder of the wrist pain that I know it plays games. God, we all need you.
cigi

Posted by docdave130 on :

i've had 2 goes at rocephin without success, but then again i went undiagnosed for 7 years.
i am presently on zithromax and flagyl after 5 months herxes decreased every month, then bam, back again full force joints and cfs.
next venture will probably be iv doxy i think, who knows may just live with symtoms.

Posted by janet thomas (Member # 7122) on :

C'mon guys and gals, never give up.

Doc, my sense is that zithro is not that great for Lyme-I got that from a vidoe I watched of Dr J B from www.lymepa.org It's $12.

cigi-I don't seem to feel good emotions like I used to- I hardly even care to pet my dog some days

gotta keep trying

janet

[This message has been edited by janet thomas (edited 02 July 2005).]

Posted by pippy (Member # 6005) on :

Cigi,
I have similar symptoms...pain cleared up but head did not as much...so
maybe you should suspect babesia or bartonella like lymetoo said...
read the post I did in General and Medicl article about Vietnam Vets PTSD actually being Post Malarial Infection!!!!
These bugs can wreak absolute havoc on the brain!!!
Babesia is a lot like malaria. and treated the same way with the same drugs..put two and two together!! these vets aren't crazy but have infection simmering...
please have your llmd look into this as a serious possibility if you have not yet.

Posted by mlkeen (Member # 1260) on :

After 3 months of rocephin the minor symptoms were reduced( arthritis) the neuro scramble was still theere. the really GOOD news is that orals afterward have made all the diference. I've been on orals(tetra and relatives)) 2+ years and have gotten much of my life back, I laugh, sing, dance, don't fly off the handle so easily and feel human again.

I try to eat more alkaline inducing foods than acid, I do hot soaks, mag and other suppliments and now exercise. My memory is still scattered but getting better all the time.

Posted by david1097 (Member # 3662) on :

It depend on what you mean by no success...

First time on ceftriaxone - tremendous recovery from REALLY bad neuro stuff. Improvement in about 2 weeks. After about 5 weeks switched to orals.

Then relapsed several months later with some new neuroligical problems (these even more scarry than the first) that where different that the first

The back on IV cefriaxone. it took 6 months to see good improvement, but this time I also had babesia meds at the same time. Stopped babesia meds and relapsed while still on IV.

It took 4 months to recover from from that (again while still on IV) after babesia restart.

Stopped IV at the 1 year mark. Relpased startng 2 weeks after IV stop. It took 2 months to confirm relapse. Relapse appeared to be bartonella related (very specific symtoms, including neurologial things). Started new doxy IV + bartonella meds/ This was a very difficlt time with Doxy IV for first 8 weeks. Continued for 12weeks with doxy IV.

Stopped IV again and relapsed again. This time joint and neurological problems, bartonella seems to be suppressed though. Just restarted doxy IV and waiting to see what will happen.

So far it has been a step by step process. As each co-infection has been identified (after relapse) appropriate treatment has resulted in continued improvemen. It looks pretty sure that there is still another co-infection present that is weakly responsive to doxy + levequin. Might start to add flagyl again on the guess that it might be parasitic in nature.

(I had a very good response to ceftriaxone+babesia+flagyl meds while in IV the second time.)

Don't under estimate the power that various co-infections have to retard or prevent the drugs from working. For me it has been a tremendous wake up call.

Posted by GiGi (Member # 259) on :

Rocephin did nothing for me - I was as sick after 3 months as I was before.

This approach got me totally well: www.neuraltherapy.com/articles. "Lyme Disease: A look beyond antibiotics". I still did a few antibiotics, but went way beyond that.

Take care.

Posted by no2lyme (Member # 6978) on :

I was on Rocephin IV for 9 months. Felt horrible and insane the first two weeks. At about 5 weeks felt good, then just got worse from there.

Switched to Ceftriaxone for 5 months and again felt bad a couple of weeks then saw improvement for awhile and then downhill again.

Now IM Bicillin for 8 months, along with every oral possible...or pretty close to it.

Rocephin is IMO poor for neurolyme. I think LLMD's know it may not work but try it first. I hear countless stories of relapses. Two SPECT and a LP show neurolyme. Rocephin to me was a waste of time and money, but how do I know it did not help all along. I don't.

I have bartonella and babesia as well. You should get tested for co-infections.

Posted by minoucat (Member # 5175) on :

cigi, I second Tu-tu's question -- do you have any idea of where you are with coinfections? What you're describing could be babs as well as bart, and none of the drugs you've mentioned will address those.

Posted by cigi (Member # 6600) on :

I have no idea of coinfections due to testing negative. Took levaquin for a week or two for bart, then bladder surgery. same symptoms, only worse. I've heart irregularities, v-tac, shortness of breath, what co-infection is that responsible for? I had a positive igg in 2003 for bart, then 2 mos later it was within range. Can't figure it out but hope and pray someone will.
was ok for a month and a half but did 8 doses of iv zithro instead of orals. could the iv zithro shook that much up with the regular outside stress of regular stuff to cause this insanity?

thanks for your responses - and i hope everyone gets the peace that we all need and deserve after this curse.

cigi

[This message has been edited by cigi (edited 02 July 2005).]

Posted by Gabrielle (Member # 5329) on :

I also think that a coinfection might be your problem. You could make a try with Artemisinin for Babesia. If you react on it this would indicate that Babs could be your problem.

My husband took lots of different oral abx combinations (also for Bart) for 1,5 years and had only very little improvement (only night sweats and stuffy nose improved a bit).

Now, after 3 weeks of Babesia treatment, including Artemisinin, his extreme, uncontrollable blood pressure fell to nearly normal, his sleep apnea and breathing problems are gone. It's like his symptoms are just falling off of him.

For myself, the Babesia meds brought my period back after two years - it's like a miracle.

I've often read here people saying that they only started feeling better after they started Babs treatment. I always thought, these were special cases, but looks like these cases are not so rare.

Gabrielle

Posted by Nancy-OH (Member # 3567) on :

I would not say IV Rocephin failed me. My LLMD only had me on it for two months. Maybe I was lucky, but my doc followed with 6 months of or Spectracef to wipe up any leftover keets.

When the joint pain and fatigue ceased, he released me. I followed with several months of detoxing and that's what cleared my head.

I was doing great for 4 months and then just starting relapsing, so I am back on the orals.

Doing good on Spectracef and hoping to be off it again in a month or two.

I attribute the IV Rocephin for getting me over the 'hump' of Lyme.

I think you just have to keep trying until you find what works for you. It's a life altering journey, but you can't give up!

Best wishes!
Nancy

Posted by Monica (Member # 224) on :

I'm so sorry you are suffering so much.

I was on Rocephin for 2 1/2 months during the summer of 2002. I never had the issues you have, although I take Effexor for depression and have been taking an SSRI for the last 11 years.

Anyway, lost my gallbladder, followed up with orals for 4 months. Then foolishly my doctor at the time had me off all abx and I relapsed big time.

You mention Bartonella. IMO, and I am no doctor, you should be treated for it even though your most recent test did not show a positive. The fact that you had test indications of its presence once may be enough to indicate treatment is necessary.

Good luck.

Posted by tempe (Member # 5000) on :

[QUOTE]Originally posted by Nancy-OH:
I followed with several months of detoxing and that's what cleared my head.

Nancy Oh, what methods of detoxing did you use?

Tempe

Posted by auntybiotic1499 (Member # 2998) on :

CiJi.

Sorry you are feeling so bad. What dosage of Lexapro were you on and for how long??
Did you just stop or wean?

The Lexapro withdrawal causes big time depersonalization. Youi may also notice electric like shocks/zaps to the head and limbs. Dizziness, nightmares, sinus congestion and stomach cramping. these usually occur about the sixth day after stopping or reducing your dose of Lexapro.

You may also notice anxiety and mood swings and extreme rage. This is all documented withdrawal symptoms from Lexapro.

Bach's Cherry Plum Flower Essence is safe and can help the feeling of detachment from reality.like you are dreaming or watching from a distance. You can order it from the Vitamin Shoppe at a cost of about $14.00.

Also Fish Oil Omega 3''s help with the hopeless feelings and depresion.

Let us know how you are doing.

aunt y

[This message has been edited by auntybiotic1499 (edited 03 July 2005).]

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by Monica:
IMO, and I am no doctor, you should be treated for it even though your most recent test did not show a positive. The fact that you had test indications of its presence once may be enough to indicate treatment is necessary.

ABSOLUTELY! Tests for all TBD's are pretty lousy. Go with the SYMPTOMS.

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by cigi (Member # 6600) on :

Dear Aunty,

Was on 10 increasaed to 15mg lexapro, then back to 10 , then off the last 3 days. I need help and will get the cherry plum and fish oil omega. Thanks and hope to salvage some of my life back. Iwas so spontaneous, energetic, loved life and now just LOST. Thanks, i know you have your hands full and your family members are in much pain also. You still have the time for advice and I thank you. Time is so warped also. No one can know hell until you are living in it and I can honestly say, this is hell on earth.
I have ocd that all I can think about how I don't recognize my loved ones and the connection is lost. It's a vicious cycle.

God bless,
Cigi

Posted by trails (Member # 1620) on :

Rocephin was helpful for me: 2 mo's of it in 2001 followed by 6 months orals gave me almost 4 years of no symptoms and no meds!

But I did relapse, and it may be due to the 3 other TBDs they found. Back in 2001 the coinfections werent thought of as being the big deal they are today.

Many have rocephin failures though. Didnt you just have surgery cigi? If so those meds are killer on your emotions. Even without lyme I have been suicidal and INSANE for at least a month after surgery.

I am sorry to hear things are so bad over there. I hope you can find some pain free and relaxing times in between the horror!
Trails

Posted by cigi (Member # 6600) on :

hi trails. Just had my gallbladder out two weeks ago due to stones from rocephin. Now I'm taken off rocephin. Thanks for your input and if you have an in with God, please think of me. I do think of all going through this hell and wouldn't wish this on my worst enemy. Losing emotion and connection with your life is one unacceptable symptom that I have to accept for now. God is good,he won't let this go on forever. For everyone suffering, there is an answer to this for everyone, it's just so hard. Two times in the hospital in two weeks. people have it worse though and Ihave to thank God that at least i get up, although I wish I could knowing who I am and what my routine usually is for the past 11 years with my family who are strangers to me now. This too shall pass.

Cigi

Posted by trails (Member # 1620) on :

It will pass, even though it doesnt feel like it. MANY MANY MANY people have gotten better and we dont know about them coz they are out there enjoying life again. IT CAN HAPPEN and it will. I know you will recover.

I dont have an in with God by any means, but I think about you and hope your able to get through this without too much MORE hell.

Thinking of you,
Trails

Posted by auntybiotic1499 (Member # 2998) on :

Ciji,

This will pass with the proper nutrientsand vitamins, the lexapro depersonalization. I need a wayto e-mail you.

aunt y

Posted by auntybiotic1499 (Member # 2998) on :

Ciji,

I have e mailed you many people's accounts of their experiences after stopping Lexapro. Many are very similiar to yours as you will read.

The depersonalization is common with Lexapro and Celexa. This lasts about 4 months and can go on longer in some.

If you like I can give you a few phone numbers that you can speak directly to people that have gone thru this in the past year and are doing better. I have three people that would be willing to talk to you and help you thru.

I have not personally experienced these feelings but I suffer with my daughter as she experiences the withdrawals..

When you are feeling better, please read the emails to see that you are not alone and as you continue reading you will see that as time passes.......these people have improved.

I have also given you links for nutrient recommendations to help your mind heal after the SSRI's.

It is a tough road..........just hang on for the bumpy ride and in time the road will smooth out. Just keep reminding yourself that you are not losing your mind that it is all the withdrawal. You will see after reading the e mails that your feelings are common.

I will continue to forward more information to you.........you will get thru this. Please let us know how you are. God has helped me thru so much...............I will add your name to my list of favors that I will ask special help with. Ciji, it is not YOU but the WITHDRAWAL causing these bizzare feelings.

aunt y

Posted by cigi (Member # 6600) on :

Thanks aunty, they might put me on anafril for the ocd to get me under control. Xanax doesn't do much but sedate me. I'll read the e-mails and thanks for caring so much. I know I'll appreciateit even more when I wake up from hell,but for now, please accept my thanks and calling people.

Cigi

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