posted
I went for a consult recently with an LLMD who is an ILADS member. He's prescribing 6 weeks of daily I.V. infusions of Invanz, generic name Ertapenem. Because I had never heard of this drug before, I looked it up. I found out that this is a cell wall inhibitor, which Bryan Rosner very strongly recommends against in his book, "The Top 10 Lyme Disease Treatments," citing that this drug used in Lyme can often give short term improvement but long term refractory and debilitating consequences.
After 6 weeks of the Invanz, this doc's plan is to switch to a Cyst-busting antibiotic, not Flagyl, but something else, I don't remember the name. He admitted that this cyst-buster can cause problems with tendons breaking if care is not taken to watch out for early signs.
Well, all I can say to that is YIKES. No thanks. I don't want to get up to walk to the kitchen and experience spontaneous unexpected breakage of my achilles tendon.
I've known other patients who have gone to this same doc and were treated with other abx, such as Doxy, Rocephin, Amoxycillin, etc.
To what do I owe the dubious distinction of being chosen for these particular drugs? I heard that this doc doesn't take too kindly to questions that hint at challenging his judgment, so I didn't ask.
If I am wrong, and Ivanz is the new latest and greatest thing for Lyme with which some of you out there have been successfully treated, then I'd like to hear from you.
Anything that anyone call tell me about these drugs would be appreciated.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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seekhelp
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I think I know what LLMD you referring to and I know another here treated by him on IV Invanz.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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1Bitten2XShy
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posted
I know several he has treated with this drug as of late. I do not know why he made the switch from what he had been using....
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I received 7 weeks of Invanz before my insurance denied payment (5 weeks of Rocephin before that with NO improvement). I saw significant improvement on Invanz...decreased fatigue, decreased joint pain, huge improvement in mood. Also, I had no side effects at all! However, as soon as I stopped the Invanz, I went downhill quickly. I was not able to tolerate the oral meds my LLMD prescribed. I ended up right back where I started (very low functioning).
After research and discussion with my lyme-friendly PCP, I've decided to do Bicillin shots (2.4 mu) once a week. I've been getting these shots for 3 months and I'm seeing improvement again.
I would defintely recommend going forward with Invanz. If you see improvement after 6 weeks, push for another 6 weeks. I regret not keeping my PICC line and fighting my insurance for more Invanz.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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posted
I wonder if he heard of other docs using this with success, thus decided to switch, or if he's experimenting on his own. I'd hate to think that he's doing it on the advice of a pharmaceutical sales rep.
Usually when someone finds something that works, they stay with it. Apparently, his previous protocol wasn't working that well on a widespread basis?
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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MichaelTampa
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posted
Interesting, I hadn't heard anything negative about it. That's not one of the books I have. Can you tell a little more about why that author felt it could do harm long-term?
I had Invanz for 8 weeks, while rotating Tindamax and Alinia, weeks of the one, 2 weeks of the other, and back and forth. It made real improvements. I haven't been off it long enough to give a real long-term report.
Michael
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Staying on Invanz for more than 6 weeks would do nothing but set someone up for future disaster. Sure, you'll feel better at first, but by forcing the bugs into cell wall deficient form, you're creating a problem that's harder to solve later on. I'd prefer to start with a non-cell-wall-inhibitor antibiotic, then switch to a cyst-buster about 6 weeks in after they've been driven into cyst form. Then take a break, let them go into spirochete form again, and then start the process again.
Again, I don't get why Invanz is being used.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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posted
Here is the excerpt from Bryan Rosner's book regarding the cell-wall inhibiting abx:
"Cell wall inhibiting antibiotics are true to their name--they kill bacteria by preventing production of the bacteria's cell wall. Some bacteria can, however, live without a cell wall and are thus not killed by this class of antibiotic. Furthermore, the survival of some bacteria is actually facilitated and bolstered by cell wall inhibiting antibiotics. Borrelia Burgdorferi, the Lyme Disease pathogen, is one such bacterium. Of the three known forms of Lyme Disease bacteria (spirochetes, cell-wall-deficient, and cyst form) spirochetes are the only type that have a cell wall and thus are the only form of Borrelia Burgdorferi susceptible to cell wall inhibiting antibiotics. This class of antibiotic has no effect on cell-wall-deficient or cyst forms of the bacteria. Cell wall inhibiting antibiotics can break down spirochetes' cell walls. However, this does not necessarily kill them. Instead, cell wall inhibiting antibiotics force the spirochetes into survival mode where they rapidly convert to both cell-wall-deficient and cyst form. These forms are much more difficult to treat and are also responsible for causing Lyme Disease to become further entrenched and more serious. So, because cell wall inhibit�ing antibiotics cause spirochetes to convert into the two more dangerous forms, use of this type of antibiotic to treat Lyme Disease can lead to in�creased severity of symptoms and a protracted disease course. Trevor Marshall, Ph.D., inventor of the Marshall Protocol, hypothesizes that it may be possible to prevent many of the "incurable diseases" that are caused by cell-wall-deficient bacteria simply by avoiding cell wall inhibiting antibiotics. Cell wall inhibiting antibiotics may lead to a temporary improvement in symptoms, but in the long run, symptoms_will_inevitably return and worsen significantly. This point cannot be emphasized enough. It is critical that Lvme Disease sufferers understand how dangerous and counterproductive cell wall inhibiting antibiotics can be. Many cases of debilitating, antibiotic refractory chronic Lyme Disease could have been avoided (or at least, rendered less severe) by avoiding treatment with cell wall inhibiting antibiotics. For these reasons, cell wall inhibiting antibiotics are never indicated in treating Lyme Disease. Rife machines can be used in the place of cell wall inhibiting antibiotics to kill spirochetes. The other antibiotics discussed below can also be used to attack the spirochete form, as well as cell-wall-deficient and cyst forms. For the sake of discussion, the only way I can conceive that cell wall Molting antibiotics could potentially be useful is if it were somehow beneficial to drive multitudes of spirochetes into cell-wall-deficient and cyst forms, and then to deal with the bacteria in those forms. If active spirochetes were causing more damage than the two other bacterial forms, then it could be argued that forcing conversion from spirochete to cell-wall deficient and cyst forms via the use of cell wall inhibiting antibiotics would be beneficial. This may be the case in instances of out-of-control, acute Disease, and perhaps cell wall inhibiting antibiotics would have their place in such cases. However, in any case, use of these antibiotics should approached cautiously. Once spirochetes convert to cell-wall-deficient forms, the damage has already been done. Many devastating and debilitat�ing diseases--ranging from autoimmunity to severe mental disorders--are believed to be caused by cell-wall-deficient pathogens. The notion that only the spirochete form can cause these conditions is false; the other forms of Lyme Disease bacteria are also very dangerous. The decision to employ cell wall inhibiting antibiotics to attack spirochetes, knowing that this can trig�ger conversion into the cell-wall-deficient form, should not be taken lightly. Additionally, it should be noted that in some cases of acute Lyme Dis�ease, cell wall inhibiting antibiotics have been effective in permanently eradicating the infection. However, this scenario appears to be quite rare, and even more rare in cases of Lyme Disease which were not treated im�mediately following infection. Unfortunately, most cases are not treated immediately following infection. In cases of Lyme Disease which have been previously treated with an�tibiotics, and in which the infection is not completely out of control, it would be much more difficult to justify use of cell wall inhibiting antibiot�ics. In these cases, because rife machine therapy is able to kill spirochetes without inducing their conversion to other bacterial forms, it seems only logical to conclude that rife machine therapy is a much better choice for attacking spirochetes than are cell wall inhibiting antibiotics. There are some physicians and researchers who would disagree with this position regarding cell wall inhibiting antibiotics. Because so little is known about the Lyme Disease bacteria, my position is admittedly investigational and open for criticism and/or debate. If you decide to use cell wall inhibiting antibiotics in your treatment program, proceed with caution. If this chapter does not talk you out of such a step, you will at least be able to proceed with full knowledge of the potential risks of these antibiotics, having been equipped with awareness of the issues and the debate surrounding their use."
So again, I say: "YIKES!"
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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feelfit
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Hey Chaps,
I'm on my 4th round of IV abx.. And I have seen and felt more improvement on Invanz than any other IV abx to date (rocephin, doxy, zithromax).
Progress is slow and somewhat steady. Using a rotation of Alinia and Tindamax with the INvanz.
other patients of this doctor have had success with invanz as well...as a matter of fact, some are no longer here after improving on this protocol.
I trust my doctor who is a professor, member of ILADS and an infectious disease doctor as well...over anything that Bryan Rosner has written.
Your Doctor is also cited in Dr. B's treatment guidelines....which says something, in my opinion.
Invanz is very easy to tolerate as well....
just my two cents, the choice is ultimately yours.
Oh! this doctor is very open to suggestion, talk with him. We create my tx protocols as a joint effort.
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
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oh! forgot to say that the doc who is recommending INvanz is also quite comfortable with IM bicillin....your choice.
Posts: 3975 | From usa | Registered: Aug 2007
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karenl
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I think I am at the same doctor. I am on doxy 200 mg and he wants me to add 1,500 flagyl for some weeks and then he talked about doing the Invanz.
I still have some weeks and hope I get more information on this new drug.
He also talked about bicillin but said then there has to be lidocain in the im bicillin.So it really looks that he likes bicillin as well.
Posts: 1834 | From US | Registered: Oct 2008
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seekhelp
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I wish I lived by that LLMD. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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How many doctors use Invanz? Did Dr. Burrascano use it? How long has it been used? Has it been used long enough to stand the test of time, such as 5 years symptom free with no relapses? How is it that the pitfalls described by Bryan Rosner are avoided with Invanz? Has it been proven not to force the bugs into cell wall deficient form?
Do you have to be on it long term in order to avoid the pitfalls of cell wall inhibitors? If that's the case, then I guess I'll be in trouble if my insurance company stops paying after six weeks.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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feelfit
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Chaps,
Invanz will not get you well in six weeks, i'll tell you that much....
it is slow and steady, if anything. Same as bicillin.
you are obviously very uncomfortable with this protocol, which in and of itself is not good.. I would talk to the doctor and ask for Bicillin or Rocephin
If you feel more comfortable with them. Bring the information that you've printed here to your appt. and speak of your concerns.
Again, Bryan Rosner does not treat patients. I doubt that this doc would be using this med if results were not seen in his patient base....
Bring Dr.B's tx guidelines...he is familiar with them..ask to try treating according to them.
Are you severely symptomatic? Able to work? socialize, drive? if you're able to do all of these things, i would not do IV's until exhausting oral combinations.....
Maybe you would be better suited to traveling East and seeing a doctor who treats exactly as Dr. B suggests?
Whatever your decision, make it count! Don't waste time w/ someone who you're not comfortable treating with.
Feel free to PM me with any Q's that you may have.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I treated with 2 months of IV Invanz. Now, I am on IV Vancomycin. I haven't had any releif from any of my symptoms yet, but I have had lyme for 20 years, so I think it will take me years to get better.
Curretly, I am on Vancomycin, Alinia, and Zithro.
Good luck.
Posts: 893 | From Florida | Registered: Dec 2008
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MichaelTampa
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Alinia is meant to treat the cysts. I wonder if Tindamax could deal with concerns regarding turning into cell-wall-deficient forms?
Posts: 1927 | From se usa | Registered: Mar 2010
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Dawn in VA
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I think the key to a lot of this is to use combination therapy. Use something to knock out the cell-wall (active 'chete, often beta-lactams and such) form, something to knock out the cell-wall deficient form (often a macrolide), and something to knock out the cystic form (Flagyl or Tindamax).
So that you're not just pushing one form to morph into another and so on without artillery on hand for when they do.
I've found that pulsing the latter is OK as a surprise attack and works well for me personally, while others have found that pulsing all three in rounds to surprise attack all of the forms is useful, while others stay on them all constantly.
I have to be honest and say that I've never heard of anyone else mentioning that Flagyl can cause tendon issues. Levaquin (for Bartonella) to be sure, and in my experience too, but not the former. Hopefully others will chime in about that.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Chaps, did your LLMD not give you the medical literature suppporting the use of Invanz to treat Lyme? He gave it to me, ask him for it. He knows what he's doing, trust him. Some would kill to have the opportunity to see him. And yes, he IS mentioned in Dr. B's guidelines.
I wish you the best, it's a long road. We just have to be patient and resolved.
Posts: 246 | From south florida | Registered: Mar 2010
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posted
No, the doc didn't give me any literature on this drug. Being that my case is not as severe as many, I'll have to ask him why such an aggressive protocol. The labs I presented him with are not that convincing that Lyme is even the problem. I'm going to ask him to order more tests instead of assuming based on symptoms.
I appreciate everyone's input on Invanz and the well wishes. It seems to be effective and well tolerated according to your accounts. Perhaps Invanz does not have the same pitfalls of most cell wall inhibitors. I will have to ask the doctor about this.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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posted
I think this doctor likes to hit it hard and fast, and he likes the drug of choice to get through the Blood Brain Barrier which many orals do not.
He has made people better, for now, I am going to trust him. I am assuming we see the same doctor being in the same state and having similar treatment.
Posts: 893 | From Florida | Registered: Dec 2008
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posted
My husband used Invanz at the tail end of 18 months of IV antibiotics without any side effects. Most of his symptoms were resolved before he took it so we didn't notice any great improvement. There was no decline after taking it.
He has been off all antibiotics now for about 7 months now and is doing well.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Need Lots of Help is correct. I think he believes in something like an antibiotic atom bomb. I'm sure we're all talking about the same guy. Don't ever underestimate Lyme, that's one lesson I've taken from all this.
Not trying to be an alarmist, just realistic...you can be not "too bad" one day and the next day you're bedridden. Take the hard and fast approach. You'll never regret overtreating Lyme, although I don't even know if that's possible. Again, I wish you the best.
Posts: 246 | From south florida | Registered: Mar 2010
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