posted
I.V. ABX always worked better for me than oral ABX. I also would recommend HBO treatments (perwith ABX. I was able to wrk and have a pretty good like with no meds, even pain meds for about 4 years.
I have slipped again, but on my way to getting better God willing.
6
-------------------- Lisa Hines Posts: 18 | From Orange Park, Florida | Registered: Jan 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Does IV always always mean getting a PICC line or are there people
who get IVs once a week or at a doctor's office/hospital as
recommended?
If you got a relapse then the IV abx wasn't a complete cure (is there
really anything that is a complete cure in any case for chronic
Lyme?).
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Sparkle,
The most any of the placebo controlled studies have looked at is 3 months of IV. Neither of those two studies found it was a cure.
There is a lack of research in Lyme treatment. So you are not going to get the numbers you are looking for.
For many chronic people, a relapse seems to be the best you can wish for. But there are people who never seem to have symptoms again. I think it depends on your situation, how long you've been infected, etc.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I only know about IV's an it's sucess in treating Lyme related vasculitis, hyperprofusion.
One study showed 13 of 13 people showed marked improvement.
Other studies have stated that all treated w/IV rocephin found markde improvemnet in vasculitis, hyperprofusion.
You can PubMed these studies Key: Lyme Vasculitis and you will get plently of results.
This is serious stuff and these studies were enough to convince me. Cure? Who knows.
I'll take what I can get and let God handle the rest.
best, Rhonda
Posts: 3975 | From usa | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
In my experience as a support group leader for 8 years+ IV is one of the few things that will send longterm chronic Lyme into full remission, although you have to transition to orals and then off abx. No, it is NOt a cure for everyone or guaranteeed for anyone. It is the best and sometimes only thing for late neuro Lyme.
It has risk and IMO should never be done before orals unless the person is declining rapidly or has potentially life-threatening Lyme- or is very neuro neuro Lyme-
It saved my life. I love IV and what it gave me, my life back. Orals did not work anymore for me.
The studies show improvement while on IV but there have been no longterm IV studies with what LLMDs have seen work- transitioning to orals and then off- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
My LLMD used to use IV on some people and found that they didn't get better any faster than those on orals. He uses mostly orals now, except in extreme cases.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I was told IV Rocephin just pushes the spiro in to a cyst form, that will re-appear later, so you will get some patients respond well although as soon as you stop it you should then treat with long term Orals AB's - includng cyst busters.
Personally 5 months of IV Rocephin helped to get my brain swell down (was in hospital for 6 weeks) although it was only when I switched to IM Bicillin and then orals that I got any marked improvement and or course under the correct LLMD, still a very rocky road and very far from well but making progress.
I do think IV definatly has a place and is necessary for severe neuro Lyme, although it is a mixture of IV/I.M & Orals AB's plus Heparin, Hormone and detox that will get you better and of course time on this regime
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
It all depends on what ie meant by "cure". This disase is widely accepted as being a permanent affliction, the best that you can achive is putting the infection into a sleeping state (latent). This same thing happens with many other bacterial infections, the big difference with lyme is that the immunue response cannot eliminat it on its own with the result that if it wakes up, it will be able to expand with not much opposition from the body.
Without question ceftriaxone has pushed the infection into a latent state (ie remission) for many people. Sometime with as little as 2 weeks of IV.
Note that IV is not always needed. If there are not really bad neuro or heart problems it is usually not used. Also many Dr's first will try orals on non critially ill patients to see if it works. Often orals alone will do it.
Iv gives a more predictable blood and tissue concentration than does oral and gives higher peak concetrations than can be acived with orals. IV are also used if the patient has GI proboems and cannto tolerate orals.
Hope that helps.
Posts: 1184 | From north america | Registered: Feb 2003
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thank you!
Someone here mentioned that they had a hard time getting their
doctor to give them an IV. They also mentioned that Dr. B
(ILADS) treats celebrities with IVs & not "normal" folks (implying
that celebrities get the real deal treatment & not the rest of us). I
just wanted to check out opinions of people out there to see if
IVs are really necessary. My doctor told me that they aren't & you
can get the same effect with oral abx (as per his review of
studies & data). It seems that IV abx can be usful for people who
are extremely ill.
All of us are different & we really have to try to find what's best
for each individual. I don't usually do well with extreme
treatments or most drugs for that matter. Herbs & supplements
or alternative approaches are usually better for me. I've been ill
with Lyme for 10 years & I was told that I had Fibromyalgia.
Sometimes I wonder if the IV is necessary. In my case, I think I
can manage with oral abx & supplements. I recently found a
great sauna & I've been going there. I do feel alot better from
just that. I think I'm going to go there more frequently &
continue with the oral abx. I'm also thinking of adding the Dr. C
herbal protocol. It's probably best to exaust all possibilities
before doing something as invasive as a PICC line but I can see
that they are helpful to some of you.
Good luck & continue posting!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
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posted
The ILADS guidelines seem to indicate that it is recommended in certain cases.
"Concurrent risk factors (i.e., coinfections, previous treatment failures, frequent relapses, neurologic involvement, or previous use of corticosteroids) or evidence of unusually severe Lyme disease should lead to the initiation of prolonged and/or intravenous antibiotic treatment. Physicians should always assess the patient's response to treatment before deciding on appropriate duration of therapy (i.e., weeks versus months)."
My doctor has offered it to me and I will take him up on it as soon as I get rid of co-infections and metals in my teeth. By then I hope to have the funds. It's not cheap.
My doctor's office gave me this info:
Controlled studies of peristent lyme disease
Krupp 2003 4 weeks of IV cetriaxine 64% showed improvement on fatigue and no improvement on cognition
Klempner 2001 4 weeks IV cetriaxone then 2 months of oral doxycycline - no improvement on SF - 36
Fallon 2004 10 weeks of IV Cetriaxone Cognitive improvement
Non-Controlled Studies supporting longer treatment approaches or retreatment
Oksi 1999 Donta 1997 Oksi 1998 Fallon 1999
Good responses but longer treatment and a variety of abx. It's a lot to type in and my arms and hands are hurting so I'll try to come back later and type more.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sparkle7
Frequent Contributor (5K+ posts)
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posted
Thanks Terry-
I don't think the studies went back to find out if the patients
remained in good health or had lasting improvements, though. I'd
have to go & read through all the data but just from what you wrote
- it doesn't seem like it. I could be mistaken, though.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
My LLMD chose IV for my wife because orals are harse over time to the gut and IV isn't. Both require the use of probotics for flora stability. As I remember it, all abx require a "saturation level" to be effective and the doctor administers either oral or IV to reach that level by using gram levels or strength of choosen method.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Typing the rest of the info from the post above:
Non-Controlled Studies supporting longer treatment approaches or retreatment
Oksi 1999 9 of 13 patients (69%) with disseminated lyme disease who were initially treated for 3 months with oral or IV abx but subsequently relapsed had good response to retreatment with IV ceftriaxone for 4-6 weeks. *Treatment with appropriate abx for even more than 3 months may not always eradicate the spirochete and long term abx may be necessary.
Donta 1997 277 patients with chronic lyme treated for 1 - 11 months. 20% cured, 70% improved and 10% had treatment failure.
Oksi 1998 30 patients with disseminated lyme treated for 100 days, 90% with good or excellent responses, prolonged courses of abx may be beneficial in this setting
Wahlberg 1994 Success rates for 100 patients with late lyme disease 31% (4 of 13) with 14 days of ceftriaxone; 89% (50 of 56) with ceftriaxone, then 100 days of amoxicillin and probenecid; and 83% (19 of 23) with ceftriaxone, then 100 days of cephadroxil.
Fallon 1999 18 patients retreated either with intravenous, intramuscular or oral abx scored better on overall and individual measures of cognition. Those retreated with intravenous therapy showed greatest improvement.
The studies described above are necessarily limited in the choice of abx tested and the duration that the abx were given in the study. They do not tell us what would happen if patients were treated with different abx or for longer periods of time.
Finished with the printout info
My comments - I don't know what kind of follow-up has been done. I imagine that many of the patients have continued on with some form of treatment except perhaps for the small percentage that were cured if indeed they were cured.
I've read here time and time again how someone suddenly started to improve when they got the right abx I think so I think their point about abx choices is important. Also, longer treatment times.
What we don't see here is how many people were treated for all the possible co-infections since not being treated for them can cause one to fail treatment.
In my view, another factor that can affect outcomes is the number of people (like me) who cannot get rid of biotoxins. If you don't get rid of them (and you will be creating even more with treatment), you may never experience improvement (at least according to what I've read).
Another factor that raises eyebrows among some here but in my view is critical is the effect that amalgams have on the immune system. The recent study on mice infected with borrelia makes it very clear that it is harder to get rid of borrelia if you have amalgams.
I think if one is willing to address this and possibly other issues, success rates will be higher.
Terry
[ 15. November 2007, 12:47 PM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
Just when it seemed as though the denialist foxes had completely taken over the chronic Lyme henhouse, a new study in the journal Neurology, "A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy", concluded that lengthier courses of antibiotics are helpful in reducing neurologic symptoms related to chronic Lyme disease. This study was conducted by Dr. Brian Fallon et al at Columbia University (possibly the only major American medical school that is not under the thumb of chronic Lyme denialists).
The Columbia study, while confirming the effectiveness of lengthier courses of antibiotics for at least temporarily improving symptoms, was unable to draw any conclusions as to whether lengthier courses of antibiotics might have produced a more permanent improvement in health:
Conclusion: IV ceftriaxone therapy results in short-term cognitive improvement for patients with posttreatment Lyme encephalopathy, but relapse in cognition occurs after the antibiotic is discontinued. Treatment strategies that result in sustained cognitive improvement are needed.
The conclusions reached by this study not only agree with the experience reported by many clinical doctors and their chronic Lyme patients (it is important to note here that many patients have experienced permanent improvement in their symptoms using more varied and lengthier treatment protocols than those employed by Columbia), but are also corroborated by a wealth of existing research documenting the Lyme bacteria's ability to evade treatment."
The studies you posted, TerryK, were fairly old. You would think
there would be some newer data (?)... Thanks for typing it out.
I'm going to check out Columbia University & see what their
program is like.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Don't forget the IM approach as a possibility.
Bicillin and Rocephin can both be administered by injection into the hip.
They give you longer lasting meds without the gut assimilation problems, and without the IV risks.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
This is drifted off the main IV topic, but since so many were talking about permanent cures, i'll add this, even if it should be posted somewhere else.
I do personally know a woman who was completely cured, by Dr D, by a regime of 18 months of Biaxin + Plaquenil, and NO B vitamins; B-vitamins forbidden; and all supplements forbidden; except she did take a little Vit C.
On the Internet i read that Dr D looked at the records of all his patients, and divided them into two groups: those who were cured and those who weren't. The only difference they could find was that the ones who were cured, didn't take supplements; while those who were not cured, did take supplements.
Posts: 1226 | From USA | Registered: May 2007
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sparkle7
Frequent Contributor (5K+ posts)
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posted
Thank you pamoisondelune. That's very interesting! Do you have
any further info about cutting out vitamins?
I usually try to avoid all supplements about 1 hour prior & 2
hours after taking abx. I did the plaquinel/biaxin for a couple of
months but it became too much for my abdomen - I started
getting pretty bad cramps. I was supposed to add Flagyl but it
was too much. My Dr. switched me to Minocyclline for now. I've
been herxing pretty bad from it. I'm supposed to take 4 pills a
day (100mg) but I can only stand about 1 a day. My dr. also
recommended this stuff called Juice Plus. He really went out of
his way to get me to use it. It has clinical studies that it improves
immune function. Maybe I should try cutting out all the other
vitamins I'm taking? The Juice Plus is just made from fruits &
veggies. It doesn't have alot of additional supplements added.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
IV is 5 times! more efficient than orals, states my german LLMD. He's been in business treating lyme for 15 years. He uses mostly IV as it is so much better.
I believe most of hos patiients are actually cured. He's had many severely ill patients that have been ill f�r 20years++ and most are cured.
Posts: 347 | From sweden | Registered: Feb 2008
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I've done Juice Plus. They even make a chewable version if you are tired of swallowing pills, like me.
I have also done the mangosteen. Great stuff.
I have been treated for 5 years by the best lyme literate medical doctors. I have never gone into remission, despite having 5 months of I.V. rocephin in the beginning.
However, my husband did have 5 months of remission last year, after 3 years of treatment, only with oral antibiotics.
Each person is different, like everyone said above.
I.V. is not the answer for everyone.
I should tell you that I am now on I.M. claforan. I take 4 grams a day for 5 days, and then two days off antibiotics. I also take biaxin and mepron for the babesia that I was never able to get rid of despite 5 years of aggressive treatment.
My point here is that the I.M. claforan has been just as aggressive as the I.V. rocephin, and I don't have to have a line in my arm. Yea, the shots hurt like heck, but for me personally, I'd rather have that than a line in my arm.
So, there are other choices.
WE went to the I.M. solution because my insides were a total wreck from pills going through my stomach and intestines for so long. But without the medication, I'm totally in a wheel chair.
Tough choices.
Anyway, I didn't mean to make this about me. It is about you.
A lot of people swear by the I.V. rocephin, but remember that it is not intracellular, so you still have to have biaxin or zithro, and also a cyst buster.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Dear Swedish Lyme Sufferer:
Can you private message me with the contact information for your German llmd? I recently relocated to Switzerland, and although I'm trying to continue with my American doctor I love so much, I'd love also to have a name of someone local in my back pocket.
Thanks so much. I know of anther American here in Switzerland that sees someone in Germany that seems to be very good.
mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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