My husband began tigecycline in Oct 20th. So far so good, and I know a lot of people are interested in this drug (I was always hungry for first hand reports) so I'll try to keep an update for everyone.
Hubby has a midline for administration of the Tygacil, and we are shooting for three months on it. He has felt some reactions very quickly----mostly returning symptoms that he has had before like eye pain, giddyness/brainfog, headache going up his neck and into his head and vertigo.
He had been having increasingly violent tremor in his leg (whole leg was moving involuntarily) and within 24 hours on Tygacil this has stopped. Night sweats have subsided. He is a bit fluey, but so far no giant herx.
He has not had nausea yet, but that is big concern. Would nausea show itself in a few days or does it take longer??
Again, I'll let ya know how it goes----fingers and toes crossed!
Posted by 2roads (Member # 4409) on :
Can you only get this drug in IV form?
Thanks
Posted by dmc (Member # 5102) on :
I loved it's results. First month tough but it was the best treatment for me. (MS type manifestations of the TBDs)
Nausea hit first few days. First week I was in bed most of time. Just felt very fluish..headache, weak. Nausea came in waves.
After first month much less, then 3rd month I was eating while the IV going. Planning the future. Had to stop after 4 mon. due to blood clot.
Just have your husband keep popping the probiotics. I never had any diarrehea while on it.
Posted by Sojourner (Member # 9424) on :
Yes only IV.
DMC-Thanks---he is MS type of lyme too---Great to hear of your success.
As far as probiotics, can one take probiotics at any time while on IV abx......of course, when doing orals he would always wait a few hours, but we are thinking with IV he might not have to.
Posted by seibertneurolyme (Member # 6416) on :
Thanks for the update.
Is the IV just once per day?
Also curious as to what other IV meds your hubby has done?
Bea Seibert
Posted by Dancer (Member # 11039) on :
I just restarted tigecycline and would like to join this conversation.
Earlier this year, I did 3 months IV combo rocephin and tigecycline, with a month of rifampin thrown in at the end. I was lucky - did not develop any diarreah or vomiting, it was quite manageable. The first week I had some mild nausea. Bonnine helped with that and then it stopped. I did develop pain in my stomach. My LLMD recommended Prilosec - that took care of 90% of the stomach discomfort, stayed on it the whole time. I had some sparkling clear days and also some fogged out ones. By the end of 3 months I felt fantastic - sparkling clear-headed, no vertigo, no joint pain or aches anywhere, normal energy and enthusiasm. Like who I was years ago. It was bliss. I went rollerblading for the first time in years - it was so joyful. I felt like I'd made a prison break and I had to live as much as possible in the short time I had before they tracked me down and hauled me back to jail. This experience changed my entire outlook about my future. If I got it all back once, I can again.
I then took 4 months off abx totally, figured I'd let the spiros think the coast was clear and they could uncyst and come out to play. I did have gradual relapse of sx, but retained some improvements. (Unlike previous abx breaks, where I would get slapped with hefty sx after 4 or 5 days off.) For example I could finally sleep unmedicated, after years of constant ambien.
So now I have started tig and rocephin again, 10 days in. I have just added something new - lumbrokinase - the purported biofilm buster. I am not herxing much from the tig and roc - it was only the first few days - but within an hour of taking lumbrokinase a herx kicks up. I am also adding in one more novel Rx med that I won't go into right now.
I'd love to hear from anybody else that's tried lumbrokinase with tygecycline - eg how much do you take?
Thanks! - Dancer
Posted by Sojourner (Member # 9424) on :
Hi Bea- The infusion is 2x per day, and he has done no other IV meds, but a lot of orals.
Dancer-That sounds like a good plan, and I am glad to hear you've had lasting improvements. I'll keep my ears open about your lumbrokinase experiences!
Posted by peter j (Member # 11825) on :
Helped me. Good improvement. Not great, but definitely good.
Posted by Pinelady (Member # 18524) on :
I have read the package insert and research
online. It says 14 days. Is that it? Is that all
a body can handle? I did read reports of death
non specific. Patient may have been too far gone?
It is only available IV and still in infancy for
treatment of borrelia. But could be promising. I
hope it works out. Does cross placenta and not
for children yet. Borrelia is not listed in the
trials of specific bacteria as yet. Surprisingly
Legionnaire disease is. Reports it attacks
abdominal and skin bacteria the best. Get rid of
ecoli and get rid of lyme defense? There is also a fungus
Dancer's experience could have be written by me. I did 5 mons amoxi after the IV was pulled. More for my insecurity (fear of relapse) than need.
Been off all abxs since April. Started LDN sept.
So far so good...knock on wood, fingers crossed.
Posted by Dancer (Member # 11039) on :
Soujourner, thanks, fingers crossed!
Forgot to say, I am taking Allergy Research brand lumbrokinase, 1 capsule 20mg twice a day.
DMC, that's great! What is LDN? How have you done in the time since April? Gradual return of sx?
Posted by Dancer (Member # 11039) on :
This is also interesting. Since the tigecycline turns off the spiro's efflux pumps, so they can't "spit out" abx, there is opportunity to coadminister other abx which can take advantage.
I heard a talk by Dr B. and he said tigecycline, besides being very effective for borrelia, is also somewhat helpful for bartonella and mycoplasma, and if you can get it, to stay on it as long as you can.
Posted by jenny76 (Member # 18205) on :
I'm on it as of this past Monday and the nausea is SO bad. Also food aversions with it. I wonder if that will subside??
I called my LLMD and he has pulled me off for a while to try and calm my system down. This has been the hardest IV drug for me to tolerate but I want to hang in there.
Any suggestions? I am on a ton of anti-nausea drugs too. :-(
Posted by Dancer (Member # 11039) on :
Jenny, maybe try prilosec. I know it's not for nausea specifically, but it made my stomach pain stop, it may be helping keep nausea down too. My doc recommends it with tig. Hope you feel better and can get back on and stay on
Posted by jenny76 (Member # 18205) on :
Thanks so much Dancer!! I think I will give this a go....besides nausea it causes a TON of abdominal discomfort. I want to give this a good try though as my LLMD says that it has helped so many!
Posted by Dancer (Member # 11039) on :
Jenny, good! The prilosec effect was dramatic. Went from whole abdomen SORE like stomach virus, improved within 24 hrs of prilosec, fine and eating salsa a week later! Lifesaver.
Posted by garunner (Member # 19474) on :
I made some nice progress on Tyg, but every dose was brutal! No meds even began to touch the nausea. If you're looking to drop some weight (which I wasn't), it's practically guaranteed! Was also on Rifabutin, Mepron/Art, and 2 weeks of Merropenon at the end. Had to stop the Mepron as I could not even bring myself to look at the bottle. Had a few near fainting moments. I recommend it to anyone who can swing it. A friend who has MS/Lyme is on it now and making miraculous strides.
Posted by jenny76 (Member # 18205) on :
Looks like we see the same doc garunner! My protocol exactly except I am on IV Lev now with the Tyga and will add the Merrem with the Tyga (maybe if I can tolerate) the last two weeks in my cycle. Mepron had to be dropped as of yesterday as I couldn't even look at it.
Posted by Marnie (Member # 773) on :
"Tigecycline is a glycylcycline antimicrobial structurally related to minocycline. Like minocycline,
tigecycline binds to the bacterial 30S ribosome, blocking the entry of transfer RNA.
This ultimately ***prevents protein synthesis***
by halting the incorporation of amino acids into peptide chains and thus
You might want to read the above link in its entirety to make an educated decision.
Your life, your choice. You call the shots.
What causes Bb's growth?
Bb has a transferrin gene. Although it does not use iron to replicate, apparently it may iron for GROWTH (in a very round-about way).
"These results indicate that B. burgdorferi may be capable of growth ***using transferrin*** directly as a sole source of available iron. Furthermore, iron acquisition from transferrin may be inducible, and may involve at least two different gene products.
So that abx is also suppose to inhibit an efflux pump?
This efflux pump?
Hepcidin Regulates Cellular Iron Efflux by Binding to Ferroportin and Inducing Its Internalization
Hepcidin is a peptide hormone secreted by the liver in response to iron loading and inflammation.
Decreased hepcidin leads to tissue iron overload, whereas
***hepcidin overproduction leads to hypoferremia and the anemia of inflammation.***
***Ferroportin is an iron exporter*** present on the surface of absorptive enterocytes, macrophages, hepatocytes, and placental cells.
Here we report that ***hepcidin bound to ferroportin*** in tissue culture cells.
After binding, ferroportin was internalized and degraded, leading to
***decreased export of cellular iron.***
The posttranslational regulation of ferroportin by hepcidin may thus complete a homeostatic loop: Iron regulates the secretion of hepcidin, which in turn controls the concentration of ferroportin on the cell surface."
[ 10-30-2009, 02:53 PM: Message edited by: Marnie ]
Posted by Pinelady (Member # 18524) on :
I get what you mean Marnie. What would block that cause and effect? More electrolyte going in? Vitamin C? Zinc? Bind the Iron?
Posted by dmc (Member # 5102) on :
Dancer - LDN is low dose naltrexone I take 3.0mg. Some LLMDs using it for lyme & it's autoimmune isues
Hey dmc, dancer and others who had experience with tigecyline. What was your dosage and how many times a week did you had to do it?
Posted by Sojourner (Member # 9424) on :
50mgs 2 x per day, everyday.
Posted by Marnie (Member # 773) on :
Lactoferrin might HELP. It binds iron.
LDN...look very very closely at how it works.
Bind the receptor...get something to lock onto CB2 (our own antibody should be doing that, but it is damaged)...and then hit Bb.
Binding to that receptor = inflammation goes DOWN.
Then hit Bb.
Sorry, I don't have the links for this...and am working fast, but:
"We report that CB2 receptor inactivation by knockout decreases sepsis-induced mortality, and bacterial translocation into the bloodstream of septic animals.
Furthermore, CB2 receptor inactivation decreases kidney and muscle injury, suppresses splenic nuclear factor (NF)-κB activation, and diminishes the production of IL-10, IL-6 and MIP-2."
But I can link this:
Cannabinoids have been shown in clinical trials to be moderately effective at reducing neuropathic pain, but doses of cannabinoids currently in use are severely
***curtailed by psychoactive side effects through actions on the cannabinoid CB1 receptor.***
A relatively new class of drugs, selective cannabinoid CB2 receptor agonists, have shown considerable efficacy in a variety of animal models of neuropathic pain.
Importantly, these drugs lack the psychoactivity of non-selective cannabinoid receptor agonists. The mechanisms by which CB2 receptor agonists reduce neuropathic pain are under intense investigation, and there are a number of plausible mechanisms by which CB2 agonists have antinociceptive effects.
In this article, we review the preclinical evidence for the efficacy of CB2 agonists in the treatment of neuropathic pain. We also review the state of clinical development and trial of CB2 agonists, and argue that the need to test CB2 agonists for neuropathic pain in humans is urgent."
CB2 receptor agonists (helpers) are currently being explored also for MS!
Low dose naltrexone maybe doing just that.
Once again...get the inflammation (and resultant pain) down AND hit Bb.
It appears we don't want to interfer with CB1, but only CB2. "Pot" works on both CB1 and CB2.
Okay...let's take this another step forward.
Is Bb's PKC inhibitor PKCB2?
If Bb is camped out in our defense cells, as a result of PKCB2 inhibited (inside the cell), do those cells then express on their surface, a "call/signal for help"...CB2 receptor help?
Unfortunately our own antibody to CB2 is "broken" because our Mg levels dive at the outset to lyme.
And Mg apparently is very much needed.
The beta lactam antibiotics work by ligating (binding) Mg+ to SAM...
Direct quote:
Here's how the beta lactams work:
"In this model, ***the 7-hydroxy group of the β-lactam ring
ligates the Mg2+
with its α-side facing the methyl group of SAM***
at a distance that would allow methylation of the hydroxyl-group."
But Bb looks to have beta lactamase....so we not only have to give a beta lactam, but give a beta lactamase inhibitor too..as well as anti-histamine support (Mg is an antihistamine).
Keeping beta lactam high is the goal apparently....so it can ligate (bind) Mg from SAM.
Are the cells undermethylated? Or over? Any biochemists here?
[ 10-25-2009, 10:11 AM: Message edited by: Marnie ]
Posted by jenny76 (Member # 18205) on :
My LLMD had me on 50mg once per day, M, W, F with other IV meds as well. I am sensitive to meds so he felt like once a day would be fine for me. I can't even tolerate that.
Posted by Pinelady (Member # 18524) on :
Marnie I think your are right. Lactoferrin may be worth a trial here. I wish I could try it. I have these high above normal red counts and hemoglobin levels and low protein. So I think it would pull it together?
Posted by Dancer (Member # 11039) on :
First day was one dose of 100mg. After that, 50mg twice a day, every day.
BTW I have been doing this (along with Rocephin) with a peripheral IV - I'm lucky, I have hefty veins for a woman. Makes me and my doc happy - lowest risk of clots.
Posted by coltman (Member # 21272) on :
quote:Originally posted by Dancer: First day was one dose of 100mg. After that, 50mg twice a day, every day.
BTW I have been doing this (along with Rocephin) with a peripheral IV - I'm lucky, I have hefty veins for a woman. Makes me and my doc happy - lowest risk of clots.
I wonder actually why most do PICC as outpatients. When I was in hospital I had peripheral IV in my hand for 5 days or so. And it was trivial to place -took nurse all 5 minutes and no equipment beside cat itself
I am going to ask about this option on monday, as I cant go PICC route - too many logistical problems (get it approved by insurance, get it checked daily, clotting risk (with my high fibrinogen seems possibke) , expensive )
If I just could get peripheral cat and replace it once a week or so it seems like best option!
Posted by Sojourner (Member # 9424) on :
Coltman--what about a midline? Kind of in between a picc and a peripheral. This is what my husband has.
Posted by Lymeorsomething (Member # 16359) on :
Coltman, I agree. I'd much rather have a peripheral installed as needed than to deal with PICC-related risks. I'm not sure that the midline reduces risk all that much.
Posted by Dancer (Member # 11039) on :
Coltman - exactly, I generally go for about a week with each peripheral and my prior course I went for 3 months like that.
As my LLMD explained it to me, with a PICC you have about 18" of line where you could potentially get a clot; with a midline about 9"; with peripheral about 1".
Also don't let anyone tell you you can't do tigecycline with a peripheral. I have 2 LLMDs and the one managing the IV was at first under the impression it was too caustic and I've heard another claim similar. LLMD #1 researched it and says in fact it is so non-caustic that he suspects it could even be injected intra-muscularly safely, but Wyeth wouldn't tell him yes or no.
>>Please note I am not a doctor and I am NOT suggesting anyone experiment with off-label delivery methods such as intra-muscular. My doctor does not advocate this. Please please always follow your doctor's and the pharmaceutical co's directions!
[ 10-26-2009, 02:59 AM: Message edited by: Dancer ]
Posted by coltman (Member # 21272) on :
quote:Originally posted by Dancer: Also don't let anyone tell you you can't do tigecycline with a peripheral. I have 2 LLMDs and the one managing the IV was at first under the impression it was too caustic and I've heard another claim similar. LLMD #1 researched it and says in fact it is so non-caustic that he suspects it could even be injected intra-muscularly safely, but Wyeth wouldn't tell him yes or no.
Hey thanks for feedback ! Replacing peripheral cat every other week seems not very big deal if I could get IV abx covered by insurance I would be all set. Albeit I do wonder how you take showers with it ( couldnt be worse than PICC I guess)
Also I wonder with its long half life (42h) seems one can get away doing it every other day 100 mg
IM wise - interesting , but it seems not formulated this way. You would have to inject larger doses (even if you can do IM) to achieve same effect as IV . From papers I seen IM as 2-6 times less effective than IV for drug delivery.
Anyways I wouldnt be the one to risk IM with it Posted by Lymeorsomething (Member # 16359) on :
What is the most common peripheral placement site? Hand?
And why can't they make some of this stuff sub-Q? I guess that would be too easy for everyone. Posted by Dancer (Member # 11039) on :
quote:Originally posted by Lymeorsomething: What is the most common peripheral placement site? Hand?
My nurse has placed the peripheral on underside of forearm as far as 2/3 of the way to elbow, and most frequently around sides of wrist. Back of hand has been last choice as it is easier to dislodge and less comfortable, sometimes painful. Back of hand IVs also didn't last as many days. I don't know what is common though.
Re: showering, surgical supply stores have plastic sleeves for the arm with a rubber gasket opening. Before I got one I got creative with plastic bags, rubber gloves or bubble wrap well secured with tape.
Posted by suki444 (Member # 18960) on :
Does Tigecycline have to be IV or can you get oral meds?
Posted by Lymeorsomething (Member # 16359) on :
Suki, it's only available as IV currently I believe...and thanks, Dancer...
Posted by coltman (Member # 21272) on :
quote: And why can't they make some of this stuff sub-Q? I guess that would be too easy for everyone.
Same reason they dont have IM - too irritating for tissues. It goes like this -SubQ can only be used for non-irritating stuff, IM for somewhat irritating , and IV for most irritating stuff (if you ever had IM shot of ceftriaxone without lidocaine you would know why its done IV usually ). IV is also better biovailability and more convenient in hospital setting.
Orals of course are most convenient but most orals have more side effects and are harder on liver, harder on gut, and less effective overall
Posted by Pinelady (Member # 18524) on :
The best place is between the elbow and the
shoulder, if you can find someone in trauma to
place, they are often used. It is easier to
stabilize, keep dry and you can run line thru shirt
and you can use both hands!
Posted by Pinelady (Member # 18524) on :
[ 10-27-2009, 09:20 AM: Message edited by: Pinelady ]
Posted by Sojourner (Member # 9424) on :
Wanted to bring this thread up again.
My husband has been on Tigecycline for 3 mos as of Feb 1st. He is having great improvement. He is an MS dx lymie so most of his problems are neuro.
When he began the tig his right leg had an involuntary spasm that was getting worse, his eyes were quite jumpy (nystagmus) and his gait was off. He had positional vertigo and brain fog. Plus stiff neck all the time, sensitive to touch,and other mild things. Also, night sweats were fairly constant.
He had been on ALL known orals (for co-infections too) for almost 4 years with improvement. He backslid quite a bit in the last 6 months and we knew it was time for IV.
Tigecycline is tough, IV is a pain in the butt, however, this is, without a doubt, the most improvement he has ever seen.
Of course, there are the downsides-expense (we were very lucky and have insurance that is covering everything), nausea (very bad for a while, he lost about 20 lbs., and was not overweight to begin with). Picc line issues (he had a mid-line with a clot, had to be on lovenox and had a picc line put into his other arm--no trouble so far).
He is going to stay on it at least until early March. LLMD wanted to add rocephin (which is one drug he has never had), but our local doc, not understanding the more complex issues of lyme and synergies of meds, didn't feel comfortable prescribing both at the same time, but is very impressed with my husband's improvement-and so are WE!
Posted by Dancer (Member # 11039) on :
Sojourner, that is great news! It is so good for the spirit to have that kind of improvement. I'm glad he's staying on for a few more months. I'm rooting for you guys.
I will update too. 2 1/2 weeks ago I finished my 2nd round of tigecycline & rocephin together (3 months) and I'm off all abx. I'm unsure of what's going on. I have alot of symptoms (neuro, joints etc) but I also know I have a candida problem. I'm herxing just from Nystatin and oil of oregano, within hours of taking them. I take a few days off of them, and I'm not as bad. I start again and I herx. Nystatin and oregano definitely exacerbate my symptoms.
It's unrealistic to think that ALL my returned symptoms are candida and not Lyme, so I probably don't have the additional leap forward I was hoping for. But until I get the candida beaten back I won't be fully sure.
Staying off abx a while and learning about Rife.
Onward and upward! Dancer
Posted by dmc (Member # 5102) on :
awesome news Sojourner, & you too Dancer. I've been offg all abxs since April 09.
Tigecyl was the ticket for me. Now dealing w/thyroid & hormone imbalances.
I do take 3.0 naltrexone. That's when thyroid issues went ka-phooey.
Posted by Haley (Member # 22008) on :
Wow, I don't know how you guys did it. I was on it for 2 weeks, actually 3 weeks at a lower dose. I couldn't get the 50 mgs down 2 X a day. I had nausea and diarhea. I took the nuasea pills and stoch pills. I saw a well known LLMD last week. I asked him if he has been prescribing it, he said yes and everyone has a difficult time with it. It sounds like if you hang in there it is well worth it. I hope you continue to recover!
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