posted
I am kind of afraid to know the answer, because it feels like one of our last hopes.
Posts: 984 | From US | Registered: Dec 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I was wondering about this question as well. Doctor suggested IV Ceftriaxone, but in doing some research it seems most who have had it eventually relapse. I chose not to go that route. I suppose that could be said for alot of orals as well but I would rather relapse on orals than something that could possibly create a resistant bacteria.
posted
There isnt one thing that works for everyone with Lyme-- otherwise we'd all be doing it :-). There are a lot of people who do not get better with any type of abx. There are people who do get better with abx. No one is the same with this disease and you just have to try different things and see what happens.
I know you were looking for a yes or no answer, but it doesnt exist with Lyme, at least not now :-/
Posts: 844 | From CA | Registered: Apr 2010
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posted
Yes Me! Irritates the hell out of me. I thought IV was the way to go, Wrong. With a picc you are already at a quandary trying to keep the site from getting wet. Hard to take shower, bath etc.
So I had a picc in 11 months. Did 3 months Rocephin, 3 Zithromax, 3 doxy, 2/12 Cefepime.
Raised cd-57 from 3 -69. Still very sick. It just didn't work for me or I didn't have the right antibiotic.
Not knocking it some people do well with IV. You may as well give it a shot.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
Yes me too. 6 months ricephin and I was worse from not paying attention to what was my real problem - co-infections mainly Bart. cost me about 10 grand.
IV Ricephin is no better that Extencillin (bicillin shots) which is 3 euro a shot here in europe. I am glad I did it though now I can move forward and not be wondering what if.
I would have liked to try some IV bart meds while I had the line in but my LLMD was not happy with trying other drugs as I did not have a co-operative GP helping with my care at the time.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
I did 9 1/2 months IV rocephin. Felt a little better while doing it, but it only went so far. After going off in June feeling real bad. Fatigue is overwhelming.
I have heard of ppl whom it really helped though. Everyone is different!
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
count me in... I did 6 months and then 3 months. It didn't help me either. I still have the same unrelenting fatigue/exhaustion. I will say the rocephin took away the sore throat I had been experiencing for 10 straight months. Strange....
I also did bicillin injections 3X weekly for 4 months and no luck with those either.
I did have my gallbladder removed due to the rocephin even though I was on actigall...
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
DMC, Did you do 4 months straight of Tygacil? What was your dosing schedule?
I did 48 infusions over 3 months (my LLMD's pulsed schedule), and barely survived that!
Did you do the Tygacil alone or in combo with other IVs and/or orals?
I did 4 different combos with the Tyg, so wonder if that make it harder to tolerate. I'm also wondering if the combo caused too much toxicity, and is why I'm sicker than ever 5 months after my last infusion? I've also been on pulsed maintenance oral abx since (more toxicity!).
What have you been doing for rebuilding? My body is telling me I need to stop abx and focus on detox and rebuilding, but I have not idea what to do or where to start.
I'd really appreciate any advice and specific info you can share. Thanks! - Erica
Posts: 408 | From California | Registered: Apr 2008
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posted
Somewhat better, but I doubt it would have been any different if I had taken oral.
Posts: 375 | From Southeast | Registered: Sep 2002
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Wasn't one of your main problems headaches? That, along with fatigue now, is my daughter's main problem.
Orals are not making a long term difference at all, so far.
Posts: 984 | From US | Registered: Dec 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Erica,
I did the 4 months straight w/o any other abxs. It was fairly new for lyme treatment in 2008. I did the full dose of 50mg 2X day.
I just lived on ginger-ale & crackers the first couple weeks. (stayed in bed most of the 1st week).
By the 3rd month was eating while infusing. I didn't do any anti-nausea meds. Just "pulled up my panties & sucked it up."
I didn't have to work since am "disabled" so that wasn't an issue. So many here have to work & it's got to be tough on them. I just knew I had to do it to stop the downward spiral I was on.
Would have done it longer but I got a blood clot in PICC arm. I did too much since I was feeling better.
To rebuild I'm doing an upper cervical chiropractic treatment for my back issues.
I had a few concussions & injuries and my 2 axis/atlas bones are/were out of wack. Had back issues from injury prior to lyme diagnosis.
I also working on thyroid issues & doing a candida cleanse.
I just am happy I'm not plagued with headaches/migraines that I had for years prior to the Tigecyl. I can't remember the last time I had a headache.
I'm just so happy, 17yrs told MS found out Lyme. Treated 5 yrs w/orals with minor improvements but continued a slow spiral downward.
It is just great not having to watch the clock to make sure I keep an antibiotic schedule.
I keep praying others are able to get benefit from the Tigecyl.
Hope you get relief and best wishes on your journey to health.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I know some ppl that did not get well using IV's. I personally have not tried them. I am getting better, ever so gradually on orals.
I think its just a matter of hanging in there and treating the right stuff. I have always felt like time was the biggest cure; and that no matter what protocol you use......its going to take Time!
How long has your daughter been treating?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
She has been treating for 2 1/2 years. All of her symptoms are neuro.
She isn't getting better, gradually. That is the problem.
She lays in her bed or on the floor 95% of the time. She has had times of improvement on different protocols, but it doesn't last.
Even then, she is only up for maybe 1/4 of the day or less. In 2 1/2 years of treating, she has had maybe 4 months of times like that, but not consecutive.
When we started she had symptoms of a mood disorder. Now, she doesn't have that, but it has been replaced with severe fatigue.
If anything, she is worse than when we started.
Posts: 984 | From US | Registered: Dec 2007
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posted
I just want to say how sorry I am. I feel so bad that you and your daughter are going through this! How old is she? Mine is 16 and only been in treatment for 5 months. Still really sick, and has some good days which we celebrate, but most days she lays in bed 99% of the day. I can relate!
Hang in there! Healing thoughts to you and your daughter!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
IV is not your last option...there is rife, herbs, and still other things. My husband did 3 months of Rocephin and didn't see a change. But this class of drugs has not been helpful to him. It took our 5th LLMD to figure this out. I think IV can help if you have the right drug. That's where electrodermal screening can help determine which drugs are working for her if you find a practitioner who will do this.
I think my husband's main problem is bart b/c most of his issues are neuro. Dr. B says, "think bart" in this case.
Will respond to your pm soon.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I did 3 seperate courses of pic-lines, mostly rochephin. At first it helped tremendously then after one year of great progress I relapsed. It took 2 more pic-lines, about 10 different orals and 4.5 years to figure out that I had babesia duncani all along. I've been treating that for 2 years and my life has changed drastically for the better. I strongly believe that until you address all the coinfections and detoxing many will have a hard time getting better.
posted
JKmom, I understand what you're going through. My DD has been sick for almost 4 years. She started lyme treatment (orals) 2 years ago. She started to improve after 3 mos on IV rocephin. Stayed on it another couple of months. Once the IV stopped, she slid backwards.
I think in retrospect that had she been treated for babesia before the IV, it would have been better. Also, because she was sick for 2 years before treatment began, her immune system was shot to hell, so probably nothing would have brought her out of it.
She currently is on the Schardt protocol (50-60 days of 200mg diflucan alternating with 30 days of Pen-V-K 500mg twice a day. This has been her most successful protocol so far. She is also on numerous supplements, as well as an anti-viral.
I know it's so very difficult, but please hang in there. You too Kelly. Seeing your daughter laying in bed unable to do anything is absolutely devastating. Kinda like having your heart ripped out and stepped on. Just try to remain optimistic and send that message to your daughters. I always told mine that she would get better because I will go to the ends of the earth if I have to. I also told her she might not get well next month or even next year, but she will get better. Nothing lasts forever.
Lots of luck to you and your daughters. Will keep you both in my prayers.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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There are so many ways to treat. I wish I knew what her answer is.
One of my concerns with the IV is getting the right drug since we'll probably only get one chance. Unfortunately, I know there's not one answer for that, either.
I am going to ask her LLMD about adding Diflucan. Some of her best times have been when she was on Diflucan.
I'm seeing some response now to Tindamax, but her positive results don't usually last, so it's hard for me to feel good about it yet. She seems to improve at first and then get worse. She takes it one week on, 2 weeks off. It is probably the only med I have felt pretty sure caused her to herx. I'm hoping that is a good thing.
Posts: 984 | From US | Registered: Dec 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
There is a product called Purge Parasitis by New Roots that my daughter responds to very well. It's amazing what a difference it makes when everything else doesn't seem to work!
If she responds to this I would take that as a definite parasite issue. Its taken 2 weeks on and one week off.
I always make note of her symptoms during that time to see the progress being made.
posted
I thought tindamax was a cyst-buster that should only be used on 2 consecutive days?? Never heard that tindamax was a "main" abx.
If you think you only have 1 shot at the IV, I'd investigate other options first. I'd especially try to determine if she has coinfections that need to be addressed.
The diflucan has made the most difference for my daughter too. Maybe you can ask your LLMD about the Schardt protocol (some aren't aware of it).
The protocol consists of diflucan WITHOUT ABX, followed by a round of the penicillin (or something equivalent in the event of penicillin allergy). There have been a couple of threads on the board about it.
My daughter is also still taking mepron for the babesia. Technically, she should be taking zithro, but it kills her stomach. The mepron on its own helps her though.
Also, if your LLMD is familiar with naturopathic stuff, ask him/her what you can do to build up her immune system. My daughter is on theralac, vit c and some homeopathic things.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
She is taking Omnicef and zith along with her Tindamax pulse.
The Tindamax is for cyst busting. I have seen it pulsed different ways. I took it for a full month and only got off from it to do Malarone instead. Another LLMD gave it to me 2 weeks on, 2 weeks off.
I need to figure out what to do about parasites. Her LLMD thinks he covered that because he did a stool test, but I am not totally convinced.
I picked this LLMD for her because he uses naturopathic things, too. He actually prefers them to pharmaceuticals, but thinks pharmaceuticals are necessary sometimes.
I'm getting panicky now so I was wondering about IV. I doubt this LLMD is ready to do it now, but he said he has done it for other patients. I am back to thinking he is the LLMD that I trust the most, though, to help us.
Thanks everyone for the responses.
I guess I will have to supplement his treatment with my own additional ideas.
She has had 2 abx breaks with this doctor. Both times, she took Diflucan. I was nervous about her being off the abx but those were some of her best times. The Schardt protocol might be helpful to her.
Posts: 984 | From US | Registered: Dec 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Has she tried Low Dose Naltrexone?
I did IV...it didn't help me too much. It may have helped very slightly, after it was all over, but I wish I would have gotten some other medical ducks in a row before attempting IV. I started making more progress with treatment after starting LDN. I feel it is crucial for some. CRUCIAL.
Has she had her IgG subclasses checked to see if her immune system is normal enough to fight off infection?
If those numbers are off, she may be able to get IVIG. However, I consider LDN a "poor man's IVIG."
Either LDN or IVIG may be necessary before I would try IV abx. Because if she is making NO progress, one could speculate her immune system is not recognizing the infections....so why would abx in another form matter? If you follow my line of thought.
Also, look into other diseases too. Very rarely does someone have just Lyme/co's, in my opinion (i'm not a doctor). If you aren't making progress with Lyme, might as well try to make progress with other things that may be wrong (while continuing to treat Lyme) like dysautonomia, sleep issues, hormonal issues, detoxification, vitamin imbalances, etc.
I would try to make SOME kind of progress, in SOME area/disease, before throwing IV into the mix. There is a reason she isn't responding to orals, and I would try to solve that problem first. My opinion.
Hope that helps. Best of luck to you. A lot of this is just trying things until something works. I'd at least try the LDN. Prayers being sent your way.....
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Yes, her IgG subclasses were low last summer when they were checked.
An LLMD we went to for a second opinion, thought we might be able to get IVIG. At the time, she was doing a little better and we had just started with her current LLMD, so we haven't pursued it.
Her current LLMD wanted to build up her immune system with supplements.
I will add LDN to my list of research topics.
Posts: 984 | From US | Registered: Dec 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Parasites don't always show up in the stool. It's a hit and miss. If they are in the cell walls they will not show up in the stool.
posted
I have been on IV Rocephin, Zithromax, Primaxin, and Claforan and made excellent progress until I stopped. I don't think my co-infections have been addressed properly and this accounts for the relapses. If I had to choose between orals and IV I would go the IV route- much easier on the stomach and hits neurological symptoms better without needing large doses of orals. I was on orals before IV and in my opinion IV is more effective but a lot more trouble and risky.
Posts: 425 | From NY, United States | Registered: Mar 2005
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I did IV with minimal response.
The key for me I believe was Babesia.
This past winter, I did round of Riamet/Coartem with relief of the fatigue. Also noted on my bloodwork my total IgG increased for the first time in five years along with the subclasses.
I, unfortuantely, relapsed and so did my bloodwork regarding my immune system. It was a BIG indicator that babesia was holding me back despite all of my previous protocols.
It feels like I've started treating all over again but at least I'm not bedridden this time.
I've seen where global(entire head) headaches are babesia and frontal and/or top of the head aches may be bartonella.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
I think everyone is different and it depends on how long you have been sick. Rocephin for me is a big reliever of my symptoms, but it alone is not a cure. I added IV zith and my neuro symptoms increased then added oral flagyl 1000mg for 4 days with increased symptoms. IV is not a cure, but it can make a lot of progress when a good protocal is used. You must use a cyst buster and/or intracellular ABX.
I am still on IV and feel 85-90% myself. I dont even want to switch to orals. Once I am done with IV, I will have to go on either IM bicillin or orals to continue progress and hopefully not backslide.
Everyone is different. For neuro symptoms I think IV is great.
Posts: 747 | From Utah | Registered: Apr 2010
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