"The use of IV clindamycin has now become routine in our treatment protocol for advanced neuroborreliosis. This change came about after we began using oral clindamycin (with mepron) empirically for suspected cases of babesiosis coinfection in our most recalcitrant, unresponsive patients. We immediately noted some new and positive developments, e.g. absence of fever and night sweats for the first time in months/years, increased mental acuity, and so forth. Other patients had Herxheimer reactions that they had not experienced for weeks on prior therapy, even though we were treating aggressively with both intravenous and oral antibiotics. Since our most debilitated patients were already on IV therapy, we decided to try short courses of IV clindamycin and the effect has been consistently impressive, even more so than with the oral formulation. We have now gone back and retreated those patients who have had an incomplete response to prolonged IV therapy, and in 11/12 of these cases, improvement on IV Clindamycin has been dramatic. We are currently in the process of evaluating the optimal use of clindamycin, as we continually do with all of the therapies we employ. Our hope is that these more intensive therapeutic programs still provided in such a way that they are tolerated, will allow us to shorten the IV program by hastening the time to clinical improvement. "
Of course, I will be on orals. Regardless, I may want to try it now because of this. My night sweats have gotten rediculous in the past few weeks.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Clindamycin has been one of the best meds for me. I have never had any issues with C-Diff.
Make sure you take high-quality probiotics. I use one packet of VSL#3 Double-Strength daily, and I also take Nystatin twice daily.
I hope you also have good results with it!
Posts: 4681 | Registered: Oct 2000
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posted
I took it off and on .. repeated cycling .. for two years. I did not even know about the risk of c.diff!!!!!! I never took s.boulardii~!!!!
(I DID take Nystatin twice a day.)
I took clindamycin with quinine. I didn't get rid of my babesia until I took artemisinin and zith, however.
But... was it the clindy/Q that did most of the work?? I never took mepron. My LLMD said clindamycin had a 5% better track record than mepron among his patients.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Hubby was on clinda. Never saw one bit of difference. Now on vanco. Hopefully she'll take him off next appt. Pretty powerful drug. Maybe she'll ut him back on clinda
Posts: 305 | From United States | Registered: Nov 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
TuTu did you mean 5% ??
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Clindamycin was also one of my most helpful antibiotics. Very good for babesia and Lyme. My doctor is also reconsidering it now.
I take S.Boulardii and VSL#3 daily.
Posts: 5237 | From here | Registered: Nov 2007
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quote:Originally posted by nonna05: TuTu did you mean 5% ??
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Yes.. For example .. in his patients who took mepron there was a 60% success rate, in those who took clindamycin there was a 65% success rate... So 5% higher with clindy.
The percentages I quoted were just EXAMPLES. I do not remember the exact (real) percentages.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Just started IV Clindamycin along with Arteminisin. I am already on Mepron, Ceftin, Cipro and Flagyl two weeks on and two weeks off.
The Clindaymycin plus Arteminisin combo is kickin my butt. Definitely a lot more herxing on the IV Clindamycin.
I have diarrhea with all abx and am using lots of good probiotics. It was a conversation with Dr. J that gave my LLMD the idea to switch me from Rocephin (which I was relapsing on) to Clindamycin.
Praying that this one is the winner for me.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Question-does that mean LLMD"s are using clindy with Mepron, or as a treatment for Babs without it?
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I love clindamycin. Took it in IV form, one week every month for two and a half years. It hits babesia, lyme and mycoplasma.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
When hubby was finally tested for Babesia duncani and had a titer of 1:2048 we decided to get aggressive with babesia treatment.
He started with the standard IDSA treatment doses of IV clindamycin and oral quinine. Did 4 rounds of 10 days and 2 rounds of 21 days on both meds -- 10 days on only clindamycin in between rounds. He was also on 4 or 6 malarone daily.
This was probably one of his best treatments for babesia. But then when he tried adding in IV flagyl he started having daily low grade fevers and tested positive for serratia marcescens 3 of the 5 times he ended up in the hospital and ER with fever spikes above 101.
Wish we could have continued and done the 10 rounds of quinine and clindamycin the doc at the time wanted to do. But after the last fever and diagnosis of possible sepsis hubby's PCP would not write any more antibiotic scrips and his 3rd LLMD of the year would not replace his PICC line and basically fired hubby as a patient.
So he switched to orals.
But now hubby is back on IV's -- rocephin, zithromax and pulsing IV flagyl and will be adding in IV clindamycin next. Along with all his oral meds.
He can't do quinine this time as he is on lariam -- same class of drugs. So not sure how the combo will work.
Hubby takes 6 s.boularrdi a day to prevent c. diff. Also takes goldenseal capsules and I am thinking of putting him back on oregon grape root tincture.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
faithful -- Hubby gets his IV meds from Rite Aid. His prescription coverage pays 60% of the allowance up to 5,000 per year and then hubby has to pay 100% of allowance -- IV meds are covered the same as any other med for him. But fortunately he has a catastrophic insurance policy which pays whatever BCBS does not pay for. But of course we have to come up with the money up front and then file for reimbursement.
I order IV bags and tubing from Medhaus in Alabama and then mix the meds myself.
The bags are considered pharmacy and the tubing is major medical so deductibles are the same as for other medical expenses.
Fortunately right now rocephin, zithromax, flagyl and clindamycin are all generic. Hubby has never done any of the newer more expensive meds such as vancomycin or tigecycline etc. Primaxin is the only other IV med he has done.
Right now the oral malarone is more expensive than all hubby's other meds put together.
The major expense is going to be the meds -- supplies can add up but we go the cheap route and use large bandaids and peroxide for dressing changes for example.
If your insurance will not cover IV meds then Infuserve would probably be your best bet.
IV tubing costs $4.00 per set -- I currently mix 2 doses of meds in a 250 cc normal saline bag and keep the meds refrigerated overnight before doing the 2nd dose the 2nd day. I am not reusing the tubing but have done so in the past. Since hubby did have sepsis once we are not taking any extra chances.
We get boxes of 100 cc syringes from Rite Aid as well. Used to use Walgreens but actually Rite AId charges about $10 less per box of syringes -- think the last box cost $36.00 Use these to mix meds and flush out the line.
We do not use heparin. Stopped using that 3 or 4 years ago when hubby went on high dose lumbrokinase. If you have never had a PICC line then you probably will need the heparin at least in the beginning.
There are a few docs out there who will train you to do your own meds and do not charge an arm and a leg to supervise IV's but you have to look really hard for those docs.
Hubby does weekly bloodwork and sends a written update by fax to his doc every 2 weeks and has monthly appointments -- either in person or by phone. But some docs want weekly phone appointments and others will only deal with home health which we could never afford as insurance would never approve it.
Hubby has had a few infusions done at a hospital infusion center and the amount they charged insurance was astronomical -- just the copay on a week of that was probably almost as much as a month of meds doing it ourselves.
Bea Seibert
Note -- Hubby is not on all IV's. He takes malarone, lariam, flagyl (5 days per week) and ivermectin and low dose rifampin orally. His current IV's are rocephin, zithromax, flagyl (2 days per week) and soon to add clindamycin. He is also on herbs including sida acuta and artemisiinin. Plus he remains on oral phenergan and oral ativan.
Now that he is on IV's I also have phenergan and ativan to use IM or IV for emergencies which unfortunately right now are pretty much a daily occurance. Adding in the IV flagyl has really stirred things up.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Bea, How much lumbrokinase does your hubby take daily? Is that the same as Boluoke?
Thanks, I'm starting Boluoke in hopes of preventing frequent clots in my port and I'm excited to hear that it works for you two.
Posts: 5237 | From here | Registered: Nov 2007
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posted
MY turning point was long term treatment for babs 7+ months) using Mepron, azithromycin, Cefdinir, cipro checking blood levels monthly, then adding in Metronidazole. Using all orals..
(15+ years undiagnosed)
Quoting "Dr.B" (Treatment failures usually are related to inadequate atovaquone levels. Therefore, patients who are not cured with this regimen can be retreated with higher doses (and atovaquone blood levels can be checked), as this has proven effective in many of my patients. Artemesia (a nonprescription herb) should be added in all cases. Metronidazole or Bactrim can also be added to increase efficacy, but there is minimal clinical data on how much more effective this will be.)
There maybe no known data, but this is what has worked.
TREATMENT Treating Babesia infections had always been difficult, because the therapy that had been recommended until 1998 consisted of a combination of clindamycin plus quinine. Published reports and clinical experience have shown this regimen to be unacceptable, as nearly half of patients so treated have had to abandon treatment due to serious side effects, many of which were disabling. Furthermore, even in patients who could tolerate these drugs, there was a failure rate approaching 50%.
Because of these dismal statistics, the current regimen of choice for Babesiosis is the combination of atovaquone (Mepron, Malarone), 750 mg bid, plus an erythromycin-type drug, such as azithromycin (Zithromax), clarithromycin (Biaxin), or telithromycin (Ketek) in standard doses. This combination was initially studied in animals, and then applied to Humans with good success. Fewer than 5% of patients have to halt treatment due to side effects, and the success rate is clearly better than that of clindamycin plus quinine. The duration of treatment with atovaquone combinations for Babesiosis varies depending on the degree of infection, duration of illness before diagnosis, the health and immune status of the patient, and whether the patient is co-infected with Borrelia burgdorferi. Typically, a three-week course is prescribed for acute cases, while chronic, longstanding infections with significant morbidity and co-infection will require a minimum of four months of therapy. Relapses have occurred, and retreatment is occasionally needed. Problems during therapy include diarrhea, mild nausea, the expense of atovaquone (over $600.00 per bottle enough for three weeks of treatment), and rarely, a temporary yellowish discoloration of the vision. Blood counts, liver panels and amylase levels are recommended every three weeks during any prolonged course of therapy as liver enzymes may elevate. Treatment failures usually are related to inadequate atovaquone levels. Therefore, patients who are not cured with this regimen can be retreated with higher doses (and atovaquone blood levels can be checked), as this has proven effective in many of my patients. Artemesia (a nonprescription herb) should be added in all cases. Metronidazole or Bactrim can also be added to increase efficacy, but there is minimal clinical data on how much more effective this will be.
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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posted
I have a port so I have to use Huber needles. My insurance pays for them if I get them from Infuserve which is more expensive, but when I buy them elsewhere at half the price, my insurance won't pay for them.
With a pump (on loan for free) and using syringes for the meds, my Clindamycin cost is a little over $100 a month. Can't use bandaids over my port. I have all kinds of problems with adhesives so I have to use Sorba View bandages. I did find them online at a good price. If infuserve carried them, my insurance would pay but they only carry tegaderm and another brand of bandage that both cause irritation of my skin.
I am in the same place with saline flushes. Insurance pays for them, but they have to come from Infuserve. My insurance will not pay for heparin at all. With a port, I can't afford not to use heparin even though I am on nattokinase, and vitalzyme, not to mention 5 grams of fish oil daily. This port has to last. I do access myself, but my LLMD wants a nurse to make sure things are okay.
Thankfully, my insurance is paying for all of it now that all deductibles in and out of network coinsurance was met early this year. The nurse draws blood from my port every two weeks and I don't pay for that, it is covered by insurance.
I don't have anyone to help me with mixing meds. My husband also has Lyme. He is working, but for how long, no one knows.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Sammy -- Hubby takes 6 lumbrokinase daily. He takes either 2 three times daily or 3 twice daily -- at one time was taking 2 four times daily. He also takes 5 wobenzyme once daily. He uses the Allergy Research brand of lumbrokinase and gets it from Vitacost. If you place your order thru Extrabux.com you can get a 10% rebate on VitaCost orders.
Faithful -- I agree it is ridiculous the hoops insurance companies make a person go thru. Medhaus does file with insurance when they can and that is one of the reasons we use that mail order pharmacy. It might be worth checking with them on the bandages -- don't know if they carry that brand or not but couldn't hurt to ask.
Hubby used to take vitalzyme but found that the lumbrokinase worked much better. He also tried nattokinase in the past and it was very expensive at high enough doses to do any good.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Wow, lumbrokinase is so expensive. I would need it for two people. Thanks for the Extrabux link. I have been using ebates, but Extrabux is more money back.
I use syringes for my meds and a free pump. I will check to see if Mehaus has my sorba view bandages.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thanks Bea.
Faithful, I've purchased hard to find IV dressings through jrsmedical.com. At the time they were cheaper than other websites. I noticed that they carry Sorbaview's in different sizes so you may want to compare prices.
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
quote:Originally posted by seibertneurolyme: Right now the oral malarone is more expensive than all hubby's other meds put together.
Hi Seibert...
you do realize that Malarone has gone generic, don't you? It came out about a year ago. I had to request it but my Pharmacy had no issues getting it. Co-pay went from greater than $50 per month to less than $5
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Yes I know malarone is generic, but hubby's prescription coverage is 60/40 -- he pays 40% of the allowable cost for meds. At 6 malarone per day that medicine is over $100 per week. And now that he has maxed out the $5000 annual medication cap he will pay the full cost and then have to file with his catastrophic policy and wait for them to reimburse him.
We are so lucky to have the catastrophic policy, but it will only pay for one more year and then hubby will have to pay $25,000 in medical expenses before the policy pays anything again. So we have this window of time that is going by awfully fast and progress is going slowly if at all.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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