My LLMD (well known and respected) asked me if I was interested in doing 3 weeks of IV GENTAMYCIN. He said in his experience it's really effective against bartonella, like within a few days! But I don't think he's used it on that many people. However....the side effects of this drug are nasty!
has anyone tried it, or heard of anyone who has?
Posted by Keebler (Member # 12673) on :
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You might ask what precautions will be used to prevent deafness and what precautions to prevent other vestibular damage.
I would really like to know as I try to gather all the research I can about ear safety with abx. If your doctor has had success, I'd really love to know the specifics if you could share those.
I looked into Gentamicin recently and, while not a complete search, here are my notes:
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Just a note of caution: IV Gentamicin can cause deafness. It is one of the most ototoxic drugs there is. It is rarely used because of that.
There are some studies indicating that NAC may help prevent ototoixicy, but it is still no guarantee of 100% protection, especially if one's liver or kidneys are overwhelmed.
The risk is huge - not just in hearing loss but also in damage to the balance system and function (vestibular system). When one's inner and middle ear are compromised, so, too, is nearly every function of living. Constant vertigo or tinnitus (with or without deafness) can result.
Once damage hits this system it is usually permanent.
PERMANENT GENTAMICIN VESTIBULOTOXICTY (2004) -- Black FO, Pesznecker S, Stallings V.
Legacy Clinical Research and Technology Center, Department of Neurotology Research, Portland, Oregon 97208-3950, USA
. . . CONCLUSION: Gentamicin can cause permanent vestibular and auditory ototoxicity.
There is no safe dose of gentamicin.
- Abstract at link above.
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Posted by CD57 (Member # 11749) on :
yeah...I saw this! But why would he have suggested it? He's aggressive but not reckless.
I was really hoping Tygacil would be the kickass for bart, but he says it's not turning out that way. Posted by Keebler (Member # 12673) on :
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Hey, I am really not saying turn your back on this. Maybe he has some ways to prevent ear damage.
I actually hope so. I'd love to see if he has some links or detailed method that has not yet been published.
Please let me know. I can't take many things due to ear problems and am always looking for preventative measures.
Oh, and in the gentamicin research, some abstracts suggests minocycline can prevent ototoxicity. However, minocycline is, itself, ototoxic. You won't find much at PubMed on that, but I have other medical citations about that.
Mino does not affect everyone the same, however.
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Posted by CD57 (Member # 11749) on :
How weird about minocin. I forgot to ask him, just said "no thanks" but perked up when I heard how it kicks bartonella butt!
Would love to hear from anyone who has done it.
Posted by Lymetoo (Member # 743) on :
I personally would not risk it. That's a scary drug. I hope you feel good about whatever you decide to do. Posted by feelfit (Member # 12770) on :
Cd57,
The only comment that I have heard about gentamicin is from JamesCase20's posts. He was using it but he is self treating.
Feelfit
Posted by lymeHerx001 (Member # 6215) on :
NO WAY!
Posted by Rianna (Member # 11038) on :
Try and get a few responses from your LLMD and in contact with patients that he knows has done it as he stated to me that Dr B & himself had seen some very positive quick responses.
Get in contact with the manufacturer customer services for the drug to ask them more about it and with all of this information make your decision.
I am still on Babesia treatment and then want to hit Bart hard and Gentamycin is my drug of choice as it is meant to be quick. Just a thought also ask him about any studies done on IV teicoplanin for Bart as last year I used this for a Hickman line infection for only 4 days and all of my bart symptoms totally dissapeared!!!!
Good luck and keep us updated.
Rianna
Posted by Rianna (Member # 11038) on :
How does it work?
Gentamicin belongs to a class of antibiotics known as the aminoglycosides that work on Gram Negative Bacteria.
Gentamicin is bactericidal in action (kills bacteria). It does this by causing the bacteria to produce defective proteins which are essential for their growth.
Once the bacteria have been killed, the tissues of the eye can be repaired by the normal healing process.
Gentamicin is used as drops to treat bacterial infections of the eye, such as conjunctivitis, and the outer part of the ear canal (bacterial otitis externa).
What is it used for?
Bacterial infection of the outer ear canal (bacterial otitis externa)
Bacterial infections of the eye
Warning!
Contact lenses should not be worn during treatment with this product.
Avoid prolonged use.
Prolonged use of an anti-infective may result in the development of superinfection due to micro-organisms, including fungi, resistant to that anti-infective.
Not to be used in
Known sensitivity or allergy to any ingredient
Perforated eardrum (increased risk of hearing damage)
This medicine should not be used if you are allergic to one or any of its ingredients. Please inform your doctor or pharmacist if you have previously experienced such an allergy.
If you feel you have experienced an allergic reaction, stop using this medicine and inform your doctor or pharmacist immediately.
Side effects
Medicines and their possible side effects can affect individual people in different ways. The following are some of the side effects that are known to be associated with this medicine. Because a side effect is stated here, it does not mean that all people using this medicine will experience that or any side effect.
Itching (pruritus)
Irritation
Sensitisation or allergic reactions
Burning sensation
Stinging on application
Inflammation of the skin (dermatitis)
The side effects listed above may not include all of the side effects reported by the drug's manufacturer.
For more information about any other possible risks associated with this medicine, please read the information provided with the medicine or consult your doctor or pharmacist.
How can this medicine affect other medicines?
There may be some absorption of gentamicin when it is used as an eye drop. Absorption of gentamicin from application to the ear is less likely to occur.
If gentamicin eye drops are used when cyclosporin or cisplatin are being taken, there may be an increase in the risk of kidney damage occurring.
Gentamicin may increase the risk of damage to the ear drum when it is used with cisplatin or diuretics such as frusemide.
Gentamycin may increase the effect of muscle relaxants.
Gentamicin may decrease the effect of neostigmine and pyridostigmine.
Posted by JesseSapp (Member # 16630) on :
quote:Originally posted by Rianna: How does it work?
Gentamicin belongs to a class of antibiotics known as the aminoglycosides that work on Gram Negative Bacteria.
Gentamicin is bactericidal in action (kills bacteria). It does this by causing the bacteria to produce defective proteins which are essential for their growth.
Once the bacteria have been killed, the tissues of the eye can be repaired by the normal healing process.
Gentamicin is used as drops to treat bacterial infections of the eye, such as conjunctivitis, and the outer part of the ear canal (bacterial otitis externa).
What is it used for?
Bacterial infection of the outer ear canal (bacterial otitis externa)
Bacterial infections of the eye
Warning!
Contact lenses should not be worn during treatment with this product.
Avoid prolonged use.
Prolonged use of an anti-infective may result in the development of superinfection due to micro-organisms, including fungi, resistant to that anti-infective.
Not to be used in
Known sensitivity or allergy to any ingredient
Perforated eardrum (increased risk of hearing damage)
This medicine should not be used if you are allergic to one or any of its ingredients. Please inform your doctor or pharmacist if you have previously experienced such an allergy.
If you feel you have experienced an allergic reaction, stop using this medicine and inform your doctor or pharmacist immediately.
Side effects
Medicines and their possible side effects can affect individual people in different ways. The following are some of the side effects that are known to be associated with this medicine. Because a side effect is stated here, it does not mean that all people using this medicine will experience that or any side effect.
Itching (pruritus)
Irritation
Sensitisation or allergic reactions
Burning sensation
Stinging on application
Inflammation of the skin (dermatitis)
The side effects listed above may not include all of the side effects reported by the drug's manufacturer.
For more information about any other possible risks associated with this medicine, please read the information provided with the medicine or consult your doctor or pharmacist.
How can this medicine affect other medicines?
There may be some absorption of gentamicin when it is used as an eye drop. Absorption of gentamicin from application to the ear is less likely to occur.
If gentamicin eye drops are used when cyclosporin or cisplatin are being taken, there may be an increase in the risk of kidney damage occurring.
Gentamicin may increase the risk of damage to the ear drum when it is used with cisplatin or diuretics such as frusemide.
Gentamycin may increase the effect of muscle relaxants.
Gentamicin may decrease the effect of neostigmine and pyridostigmine.
Why post this???? This has absolutely nothing to do with the original question at all. You cut/paste something on Gentamycin eye drops? Why?????? Nothing about this is related to IV administration, which was the question posted...
Posted by CD57 (Member # 11749) on :
Rianna: good idea re customer service. Our LLMD dropped that line of inquiry with me as soon as I said "no" so I didn't get more info...but he did say it's quick (3 weeks!) and effective! Ohhhhhhh....wouldn't that be great. BUT....I don't want my ears and balance destroyed.
Keep us posted if YOU decide to do it. I'm not ruling it out.
Posted by Rianna (Member # 11038) on :
quote:Originally posted by CD57: Rianna: good idea re customer service. Our LLMD dropped that line of inquiry with me as soon as I said "no" so I didn't get more info...but he did say it's quick (3 weeks!) and effective! Ohhhhhhh....wouldn't that be great. BUT....I don't want my ears and balance destroyed.
Keep us posted if YOU decide to do it. I'm not ruling it out.
_________________________________________________ Likewise if you go for it before me then keep us posted
Rianna
Posted by Rianna (Member # 11038) on :
[QUOTE]Originally posted by JesseSapp: [Why post this???? This has absolutely nothing to do with the original question at all. ____________________________________
I was tryig to find info listed in the UK for CD57, I was trying to be helpful - Sorry to have made the mistake.
Rianna
Posted by KS (Member # 12549) on :
This is a tough call....really have to look at the risk/benefit for your personal situation. I can tell you that a year ago, I would have taken the chance of becoming deaf over how I felt. Obviously, other drugs were effective so I wasn't faced with having to make that decision.
Maybe try to explore drugs you haven't tried yet and come back and revisit it. I think a previous poster gave some good advice....see if your doctor can connect you with a couple other patients that have taken it. That will certainly help guide you...
Posted by jamescase20 (Member # 14124) on :
I just did 2 very short one 5 day and one 3 day stints on gentimicin, why do IV?
I got IM shots.
It did wonders for me, but the herx...is VERY VERY VERY bad.
Posted by Lymetoo (Member # 743) on :
Cured in 3 weeks?? Doubt that. If it were true, no one would be hanging around on this board.
Posted by CD57 (Member # 11749) on :
Not talking about a cure....not for Lyme anyway.
My LLMD says bart/BLO may have to be treated 4-5-6 times, that it can be much worse than originally thought. My personal opinion is that there must be a more virulent west coast strain, because no one out here is done with 1-3 months of Levaquin as seems to be the case/opinion on the east coast. No one I know here has had an easy time getting rid of bart. I don't think it's b. henselae either, a lot of people here are testing positive for b. quintana and mycoplasmas.
For me, it's my biggest problem, we think. I've already been after it, HARD, for over a year. I'll improve, then slide back. It sucks. The symptoms are primarily psychiatric and insomnia. Give me pain any day over this ^%&*!
I really don't think many LLMDs are Rxing this which is why we don't hear about it.
James, who Rxed you IM gentamicin? Why did you do 5 days?
Posted by METALLlC BLUE (Member # 6628) on :
Might as well use IV Levaquin or IV Vancomycin if you're going that route.
Posted by seibertneurolyme (Member # 6416) on :
CD57,
I don't know who you have been talking to, but I don't think many people on the East coast are getting rid of Bart with 3 months of Levaquin.
Even Dr B now says 4 or 5 months if I remember correctly. And I personally don't think even that works.
Can't decide at this point if the Rifampin quit working for hubby or if it worked too well and caused all the brain swelling/brain inflammation which caused him to stop Rifampin.
I was hoping to talk his LLMD into prescribing Clindamycin to try next, but too many things went wrong during LLMD appointment for him to agree to any antibiotic changes this month.
In my opinion the herb stephania could be helpful for Bart. Dosing is a big question mark though. Definitely would not start with more than 500 mg capsule (hubby ordered the powder as we couldn't find capsules anywhere).
Bea Seibert
Posted by CD57 (Member # 11749) on :
Bringing this up bc I had another discussion with my LLMD about this. He said Dr B. used to use it with great success, and that he's had 6-7 patients do very well on it.
He said that the damage possibility is greatly reduced if the levels are MONITORED constantly.
We didn't talk about IM because he apparently thinks IV is the way to go.
Posted by Rianna (Member # 11038) on :
CD57: Apparantly as long as the dosage is set correctly with weight you will not have a problem. if this is the way to go and you are in a position to have this in his office and be monitored then you MUST go for it.
Ensure whilst on it you have full office support i.e dont do it over the holidays.
Withhout a doubt if I was near his office and after what you have been through I would JUMP at it without hesitation.
Rianna
Posted by CD57 (Member # 11749) on :
Bringing this back up....LLMD has more patients on this now, in combo with some other things. Says its too early to figure out the results and that monitoring peak and trough levels is tough. But I am interested in the results as the bartonella research talks about this drug as effective against bartonella. My LLMD will treat aggressively and is not afraid to do so.
Posted by TO LIFE (Member # 12371) on :
Is your LYME MD going to give you Vancomycin afterwards???
Posted by CD57 (Member # 11749) on :
I don't know if he does this. Is that important?
Posted by TO LIFE (Member # 12371) on :
I just hope it works well for you. I have been on the A bomb of antibiotics because of my heart.
I am considering going to Mexico to find am MD their for Vanco.
Posted by joysie (Member # 11063) on :
CD57, As far as side effects..my daughter was on IV gent( with ceftriaxone) for 2 months at the age of 9 for a nasty osteoporosis.Johns Hopkins is very happy to do this for any reason but lyme . Her levels were monitored 2x/week. she ultimately had renal failure, but it was caused by ceftriaxone. She then went back on the gent with oral cipro and did great. As Rianna said, I do think it is an issue of proper weight calculation and monitoring levels. Interestingly, the pharmacist for the home infusion supply place had expressed concern about the ceftriaxone dosage. Good luck to you Kris
Posted by joysie (Member # 11063) on :
CD57, As far as side effects..my daughter was on IV gent( with ceftriaxone) for 2 months at the age of 9 for a nasty osteoporosis.Johns Hopkins is very happy to do this for any reason but lyme . Her levels were monitored 2x/week. she ultimately had renal failure, but it was caused by ceftriaxone. She then went back on the gent with oral cipro and did great. As Rianna said, I do think it is an issue of proper weight calculation and monitoring levels. Interestingly, the pharmacist for the home infusion supply place had expressed concern about the ceftriaxone dosage. Good luck to you Kris
Posted by Doomer (Member # 11013) on :
Bringing this back up and wondering if anyone has done IV Gentamycin?
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