posted
My daughter's LLMD has prescribed IV Vancomycin since other IV and oral meds have failed to get rid of her Lyme Disease.
Our insurance company has denied all 3 appeals and state that the FDA does not approve of Vancomycin for LD and they can find no supporting literature.
They have also consulted with an external infectious disease doctor who said there is no supporting evidence for the use of Vancomycin for LD.
I am going to do some research myself on Vancomycin and Lyme but what I find needs to be acceptable to the medical community. It can't be just anecdotal.
Would anyone know where to do research to get supporting evidence for Vanco and Lyme?
Are there specific research documents to which insurance companies and doctors will pay attention?
I'd sure like to find something that would prove that Vanco works for Lyme.
Thanks for the help. Paul
Posts: 80 | From Massachusetts | Registered: Feb 2008
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posted
I'm sorry that you are dealing with this...we ended up paying out of pocket for my daughters IV Vancomycin, they consider it "Experimental", since the IDSA Lyme Guidelines do not mention Vanco.
Posts: 371 | From CT | Registered: Jun 2008
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METALLlC BLUE
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Member # 6628
posted
Int J Antimicrob Agents. 2001 Mar;17 3:203-8.Click here to read Links
In vitro activity of mezlocillin, meropenem, aztreonam, vancomycin, teicoplanin, ribostamycin and fusidic acid against Borrelia burgdorferi.
Hunfeld KP, Weigand J, Wichelhaus TA, Kekoukh E, Kraiczy P, Brade V.
Institute of Medical Microbiology, University Hospital of Frankfurt, Paul-Ehrlich-Strasse 40, 60596 Frankfurt/Main, Germany. [email protected]
The in vitro susceptibility profile of Borrelia burgdorferi is not yet well defined for several antibiotics. Our study explored the in vitro susceptibility of B. burgdorferi to mezlocillin, meropenem, aztreonam, vancomycin, teicoplanin, ribostamycin and fusidic acid. Minimal inhibitory concentrations MICs and minimal borreliacidal concentrations MBCs were measured using a standardised colorimetric microdilution method and conventional subculture experiments. MIC values were lowest for mezlocillin MIC 90 , < or =0.06 mg/l and meropenem MIC 90 , 0.33 mg/. Vancomycin MIC 90 , 0.83 mg/l was less effective in vitro. Borreliae proved to be resistant to aztreonam MIC 90 , >32 mg/l, teicoplanin MIC 90 , 6.6 mg/l ribostamycin MIC 90 , 32 mg/l , and fusidic acid MIC 90 , >4 mg/l. The mean MBCs resulting in 100% killing of the final inoculum after 72 h of incubation were lowest for mezlocillin MBC, 0.83 mg/l. This study gathered further data on the in vitro susceptibility patterns of the B. burgdorferi complex. The excellent in vitro effectiveness of acylamino-penicillin derivatives and their suitability for the therapy of Lyme disease is emphasised.
Antimicrob Agents Chemother. 1996 Nov;40 11 :2632-6.Click here to read Click here to read Links
In vivo activities of ceftriaxone and vancomycin against Borrelia spp. in the mouse brain and other sites. Kazragis RJ, Dever LL, Jorgensen JH, Barbour AG.
Department of Medicine Infectious Diseases, University of Texas Health Science Center at San Antonio 78284, USA.
Borrelia burgdorferi, the agent of Lyme disease, and B. turicatae, a neurotropic agent of relapsing fever, are susceptible to vancomycin in vitro, with an MIC of 0.5 microgram/ml. To determine the activity of vancomycin in vivo, particularly in the brain, we infected adult immunocompetent BALB/c and immunodeficient CB-17 scid mice with B. burgdorferi or B. turicatae. The mice were then treated with vancomycin, ceftriaxone as a positive control, or normal saline as a negative control. The effectiveness of treatment was assessed by cultures of blood and brain and other tissues. Ceftriaxone at a dose of 25 mg/kg of body weight administered every 12 h for 7 to 10 days eliminated cultivable B. burgdorferi or B. turicatae from all BALB/c or scid mice in the study. Vancomycin at 30 mg/kg administered every 12 h was effective in eliminating infection from immunodeficient mice if treatment was started within 3 days of the onset of infection. If treatment with vancomycin was delayed for 7 days or more, vancomycin failed to eradicate infection with B. burgdorferi or B. turicatae from immunodeficient mice. [b]The failure of vancomycin in eradicating established infections in immunodeficient mice was associated with the persistence of viable spirochetes in the brain during antibiotic treatment.
Antimicrob Agents Chemother. 1993 May;37 5 :1115-21.Click here to read Click here to read Links
In vitro activity of vancomycin against the spirochete Borrelia burgdorferi. Dever LL, Jorgensen JH, Barbour AG.
Department of Medicine, University of Texas Health Science Center, San Antonio 78284-7881.
Borrelia burgdorferi, a spirochete and the causative agent of Lyme disease, has been reported to be susceptible to a variety of antimicrobial agents. In this investigation, the action of vancomycin, a glycopeptide antibiotic not previously known to have activity against spirochetes, against borrelias was examined. The in vitro activity of vancomycin against a variety of strains of B. burgdorferi and one strain of Borrelia hermsii was determined by use of a microdilution MIC method L.L. Dever, J.H. Jorgensen, and A.G. Barbour, J. Clin. Microbiol. 30:2692-2697, 1992 MICs ranged from 0.5 to 2 micrograms/ml. MICs of the glycopeptides ristocetin and teicoplanin and the lipopeptide daptomycin against strain B31 of B. burgdorferi were all > or = 8 micrograms/ml. Subsurface plating, time-kill studies, synergy studies, and electron microscopy were used to investigate further the activity of vancomycin against B31. The MBC of vancomycin was 2 micrograms/ml. Time-kill curves demonstrated > or = 3-log10-unit 99.9% killing of the final inoculum after 72 h by vancomycin concentrations twice the MIC. Synergy between vancomycin and penicillin was demonstrated at concentrations one-fourth the MIC of each drug. In electron microscopy, B31 cells exposed to vancomycin showed a disruption of cellular integrity and were indistinguishable from those exposed to penicillin. These studies demonstrate another class of microorganisms susceptible in vitro to vancomycin.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Not only did I provide information on Vancomycin working, but also not working -- notice I did so while demonstrating persistence.
If used early, the infection was cleared using Vancomycin, but once the infection was established, the antibiotic was ineffective in the mouse model -- notice they were immune system deficient.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Joseph Burrascano, Jr., MD Southampton Hospital
Use of Vancomycin in Chronic Persistent Lyme Disease
Because symptoms of Lyme disease that persist despite aggressive antibiotic therapy have been related to persistent infection, an expanded search for newer antibiotic regimens was undertaken.
Vancomycin has been shown to be effective in killing Borrelia burgdorferi in vitro, and a case report demonstrated the efficacy of this agent in a patient with ongoing symptoms unresponsive to other treatments. An expansion of that trial is now reported.
Twenty one patients with severe chronic Lyme disease unresponsive to more conventionally used oral and parenteral antibiotics were prescribed standard doses of vancomycin using a pulsed dosing schedule. Two patients had to drop out due to allergic reactions. Of the nineteen remaining patients, eighteen had a favorable response; in eleven the response was significantly greater than with any other agent previously used. In two such patients there was no apparent cure. None of these nineteen patients had any treatment related reactions, signs of nephro- or ototoxicity, or significant superinfections.
I conclude that vancomycin may be a safe and effective alternative for treating patients with severe, resistant Lyme disease when other agents have failed.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Lyme-Associated Parkinsonism: A Neuropathologic Case Study and Review of the Literature
David S. Cassarino, MD, PhD,a Martha M. Quezado, MD,a Nitya R. Ghatak, MD,a and Paul H. Duray, MDa
aFrom the Laboratory of Pathology, National Cancer Institute, National Institutes of Health, Bethesda, Md (Drs Cassarino, Quezado, and Duray); and the Departments of Pathology and Neuropathology, Virginia Commonwealth University, Richmond (Dr Ghatak)
Accepted April 11, 2003
He was readmitted in January 2001 for another episode of aspiration pneumonia. He had a sputum culture that was positive for Staphylococcus aureus, and he was treated with IV vancomycin. In February 2001, a sputum culture was reportedly positive for B burgdorferi. A repeat serum Western blot for Borrelia IgM and IgG was positive, and PCR for Babesia organisms was also positive. Despite continued antibiotic treatments (IV vancomycin, azithromycin, and atovaquone), the patient's neurological status continued to decline, and he finally succumbed to infection and respiratory failure in April 2001. A full autopsy was performed.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Ironic how they use the same studies "against" us that demonstrate the infection persists when the drug isn't used correctly in a clinical setting.
Well, there is "some supporting" literature there. It is effective in two studies, although it may not be "great" in the second study, it still had effect.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thanks JKMMC09 - How is your daughter doing? Did the Vanco have postitive results? I've heard that 6 weeks of Vanco costs $8,000 to $10,000. Is that in the ballpark? You can send me a PM if you'd like.
METTALLIC BLUE - Thanks for all the great info. I'm going to study through each entry and try to make a decision on what to do next. I appreciate your effort.
Paul.
Posts: 80 | From Massachusetts | Registered: Feb 2008
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WildCondor
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posted
What other IV did she do/ IV Vanco is usually reserved for deadly infections, and its probably not a good idea to be on it unless you REALLY have to be. There are other options, especially combinations.
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posted
I'm not sure what your previous experience has been with IV abx - but the medicine itself is not that expensive (relatively speaking) if you're able to infuse her yourself at home.
My husband just finished a 6 week course and we purchased the medicine directly from the pharmacy for approx. $10/1g vial (powder form). No special pharmacy - we ordered it from one of the major grocery chains in our area.
We then paid an additional amount to our dr. to have the powder drug reconstituted w/ saline, and tubing, saline and heparin.
It was maybe $1500 total for the 6 weeks for the medicine, mixing and supplies - we were surprised as we had been told that Vanco was really expensive as well. I think the prices must have come down in the last year or so.
Posts: 39 | From wdc | Registered: Aug 2007
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posted
She had done IV Rocephin for 6 months. Also, IV Rifampin and IV Levaquin for 1 month. She's also done a number of oral meds including Zithromax, Minocycline and Ketek...
Mepron and Artemesisin for Babesia.
Her main symptom now is an unrelenting head pressure she's had for 2 years. The Rocephin took it away for 2 months but then it came back full force when she started Flagyl. It hasn't gone away again since July 2008.
She's taken quite a few supplements along the way including B Vitamins, CoQ 10 etc.
She took B12 injections and a supplement infusions which included glutathione and magnesium and others but nothing helped the headache.
The only thing that gives her relief is potent pain meds that leave her in a state in which she can't work or finish college.
She's positive for Lyme and Babesia with a strong suspicion towards Bartonella also.
SL10 - I'll take a look into this option.
Thank you all for your input. Paul.
Posts: 80 | From Massachusetts | Registered: Feb 2008
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Paul,
Have you talked to the Patient Protection Agency in Boston, MA? They may help you get the medicine you need for your daughter. Contact me for info.
Di
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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Infuserveamerica do vanco cheap, Here is some info I got from them a while ago. I get my ricephin through them.
I know there are toxicity isues with this drug so maybe a test dose with your PCP would be smart.
Vancomycin 1gm - $7.94 The vanco can be compounded into a ball pump, however if the dosing is more than 1gm, a 250cc ball will need to be used ($20
Take care
-------------------- 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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METALLlC BLUE
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Member # 6628
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1gm should be enough.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
"Twenty one patients with severe chronic Lyme disease unresponsive to more conventionally used oral and parenteral antibiotics were prescribed standard doses of vancomycin using a pulsed dosing schedule. Two patients had to drop out due to allergic reactions. Of the nineteen remaining patients, eighteen had a favorable response; in eleven the response was significantly greater than with any other agent previously used. In two such patients there was no apparent cure. None of these nineteen patients had any treatment related reactions, signs of nephro- or ototoxicity, or significant superinfections.
Does anyone know if the pulsed doses of vancomycin were oral or IV? Thanks.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Amanda
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posted
The Director for the CA Lyme disease Association is an attorney. She has written a form letter that you can download, for what exact language to use for insurance appeals.
Because of Conn Attorney Generals findings regarding anti trust violations of the IDSA, you can note that in a letter, and request that a LLMD review your appeal.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Thanks everyone for all the great information.
We decided to side-step the insurance company and order the Vanco through a Wal-Mart pharmacy in Massachusetts. Thanks for the idea SSL10.
It came out to about $8.50 per 1 gram vial of powdered Vanco.
We ship it to Infuserve in St. Petersburg, Florida and they reconstitute it and ship it back to me with all supplies.
It was a very fast turn-around from Infuserve and it got here the day after they shipped it and the price was very reasonable. Approximately $20/day for the 2 infustions.
Total cost for 6 weeks is approx. $1,600 vs. the $10,000 my insurance company said it would cost me if I got it through them. What's wrong with that picture???
My daughter's first infusion was yesteday at the doctor's office. She did start to get red-mans syndrome but they slowed down the infusion and she went back to normal.
From what I understand, this syndrome is a release of histamines caused by the medicine but not an allergic reaction to the medicine.
On the 45 minute ride home she slept deeper than I've ever seen. She gave herself the second infusion yesteday evening (1 gram each time). Again, she fell into an extremely deep sleep for the rest of the night.
She hasn't mentioned anything about herxing yet or had an increase or decrease in her neuro symptoms.
She hasn't had much energy for a long time (pretty much a couch potato) but today she went shopping with her mother, vaccuumed the whole house and cleaned her room. I was a little worried but she didn't want to stop. (She's 22)
I asked her where all the energy was coming from but she said she didn't know. She said she just felt like doing those things, which is unusual.
I realize that it's very early in the Vanco process and we're not getting our hopes up because of years of disappointments but we'll just have to wait and see what happens.
I'll believe in the medicine when her 2+ year-old headache goes away.
Thanks again everyone and I'll let you know how this works out.
Posts: 80 | From Massachusetts | Registered: Feb 2008
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feelfit
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Dear Paul,
Pls keep updating. I too have had a 2 year headache with headpresure and lightheadedness EVERYDAY.....so far no relief for me.
I hope that this is your daughters key!
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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