posted
I have an upcoming LLMD appointment and my doc might want to start treating Bart.
This LLMD usually uses Levaquin and Rifampin. I am afraid of the 'tendon tear' stories about Levaquin. Are they well-founded?
Can anyone give experienced alternatives to Levaquin and/or Rifampin for Bart?
Trying to lessen burning feet from what is either Lyme and/or Bart. Have tx'd Lyme for last 7 weeks via IV Roc/Oral Zith/Flagyl - no improvement.
So Bart might be the new target. Please share ANYTHING you have so I can ask my LLMD.
Kindest Regards, MBB3
Posts: 247 | From The Country | Registered: Oct 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Levaquin and the members of its family can damage cartilage as well as tear tendons. Also cause extreme depression and anxiety.
Rifampin may have to be taken for a long time and can cause your parathyroid hormone to become elevated. Must check.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I was on Rifampin for four months. It helped me greatly. But did not get rid of it, because I still have symptoms of Bart. It did help a great deal though.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
posted
If I recall, I did Biaxin and Bactrim together and also Rifampin and Zith together.
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I took Levaquin for about 9 days last month, and got the tendon issues. I am still struggling with pain in the back of my ankles, calves, and knees, though I've been off it at least two weeks.
Others here have also had the tendon issues. It is very painful, and it doesn't go away right away when you stop the Levaquin. The risk of rupturing a tendon continues until the pain is completely gone.
I didn't have any other side effects, nor did I notice any good effects in the short time I took it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I am on IV Rifampin 600mg with 2gms IV Ceftriaxone - My LLMD got my SHBG checked before starting it and then 2 weeks after taking it as it can elevate the SHBG (Sex Hormone Binding Globulin), I also have LFT checked on a regular basis.
My husband who also has Bart is on Levaquin 500mg and was on it for 4 months and his symptoms disappeared although he stopped it for 1 week and they returned slightly so his LLMD (same as mine) said to restart it as some patients take longer to get rid or bart - he has had no problems on Levaquin - he takes it with Magnesium mylate in case of tendon issues and is not allowed to do impact exercise.
Both Levaquin and Rifampin are great for Bart as is Bactrim added to Rifampin but also Azithromycin and Doxycycline is sometimes effective in combo and also Moxifloxacin 400mg can be as good as Levaquin.
Apparantly my LLMD says Linezolid and Tygacil show great promise
I also want my LLMD to do a trial on IV Teicoplanin as way back I had a hickman line infection and this was used for that and after a week my symptoms totally dissapeared and I ampositive it kills Bart, or my strain of Bart/BLO
So you have many other options athough personally I would start with Rifampin with another antibiotic.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
please, please do not ever take levaquin or cipro.
read my post....i am much worse for taking these.
the joint and muscle pain is getting worse. i've been off it for 3 weeks now and other symptoms are cropping up.
this is NOT a herx....it was the leavaqun!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Keep in mind that if you take levaquin or Cipro and when you cycle off it you get unwell again or symptoms flare quickly and you feel worse that it means the bart has come out of their hiding places and you need to retreat right away.
This happened to my husband he took 4 months of Levaquin and then stopped it and his symptoms came back with avengence so he had to go right back on Levaquin again and they have gone again within days - his LLMD says that as bart hides in tissue and red blood cells that when you come off Levaquin you can often get severe bart symptoms back and need to cycle back on the meds - He said with a subset of patients he has to keep cycling them off and back on until they are bart free.
Obviously you MUST stop Levaquin or Cipro at the 1st sign of any tendon pain as it can esculate
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Levaquin is reasonably safe, aside from the Tendon issue and potential neurological side effects. Use Levaquin with a proton-pump inhibitor like Protonix, Nexium, Prilosec etc, and make sure to take 1 gm or 1,000mg of Magnesium per day, in two 500mg doses.
Also, with Rifampin in combination, it's wise to get blood tested at minimum, once per month to check RBC, and WBC and Liver.
You absolutely have to be aware of the risk you're taking when using Levaquin. If you get tendon issues, stop immediately. Things will possibly hurt for awhile, a month, sometimes two in some cases -- but, the decision to treat a serious infection, vs the risk of tendon damage -- is one that needs to be considered carefully.
-------------------- 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
Safer treatments include Rifampin, HH Capsules, Coptis, Allicin, and potentially Bactrim. However Bactrim can be as dangerous as other antibiotics if you have an allergic reaction to it or suffer severe side effects. It's a powerful drug for killing BLO (Bartonella-like-organism).
-------------------- 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
Bartonella Remedy by Deseret Biologicals is fantastic. It is homeopathic and a professional has to order it.
It worked wonders for my daughter. We still may do another round of it for my daughter, but we are using a different remedy now along with Bicillin and don't want to over do her.
Posts: 177 | From God's Grace | Registered: Apr 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Sparrow, do you know what the ingredients are for that treatment?
-------------------- 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
I used already the deseret biological...It worked for a little and actually had to go in LEVAQUIN when Rifampin was not working .
For me LEVAQUIn works.Probably will start on it again.I have tried it 2 times and still have bart going on .Not severe like before as I can walk and felt Ok to a certain degree but tried if I could cover it on HERBS.
Am afraid that RIFAMPIN that I have been using almost for 1 year ( 11 months) is not working anymore.Need to go to something stronger as I feel like it is comming back slowly since 3 weeks ago that I stoped LEVAQUIN.
YEs it gave me knee problem.But as METALLIC BLUE said treating that infections is WAY more important than having the knee problems.
Honestly I would have given up my leg to feel OK as I felt to a certain point almost BART free 2 weeks ago.WELL it is still there so for me is worthit the trade.
Everybody has their own point of view and they might want to try many things...I ALREADY have spent a fortune...$$$$$$$on many things and LEVAQUIN with the other herbs have been the best thing so far.Without LEVAQUIN ...I have relapsed slowly.AGAIN WITH THE HERBS -not alone.RIFAMPIN Stoped WORKING RIGHT NOW for ME!!!!
IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
ALV, I have to eat dinner in a short while. If I call, I'll have to let you go in about 10-15 mins.
-------------------- 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.
By the way..NOw I recall that on my old records ...I have been using every time that I was having sore ear pain ....and througth pain ..BACTRIM and than followed by the DIFLUCAN 2 weeks.That kept my BLO and lyme in beeing ASSYMTOMATIC.
I recall my shivers in the middle of the summer and shaking .....WHO knew that I was HERXING....NOW everything makes sense.
BACTRIM works.Today I felt the same pain in my ears as 10 years ago.WELL bart is back.
IP: Logged |
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Nutramedix Cumanda (and also their product Banderol) is also supposed to hit Bart. 30 drops 2X a day.
posted
Yes Banderol works on BART and Mucoplasma also.
But in my case with 15 HH capsules....and 250 drops of banderol on top of azithr and rifampin and mino....bart is creeping SLOWLY back....or better say the layers after introducing MINOCYCLINE 200x2 that hits lyme are WAKING UP !!!!!
I do not want it back ...and I want it out...SO maybe is the time FOR THE BIG GUNS again!!!!
Also Dr J S says you need to retreat it...and no body knows how many times.I had it for VERY VERY LONG ...so it makes sense that I need to be on it for a longer time than others.
BUt honestly this week I have been able TO STRETCH MY BODY and it FELT SOOO GOOOD!I had years that I could not do that ......I have been stiff as a stone for more than 5 years ...in pain ( manageble) more than 13 years .
IP: Logged |
posted
I think there is a relationship between tendon damage and low mg2+ levels.
My ex LLMD advocated heavy supplementation of Mg2+ with sublingual troches before starting Levaquin. Apparently there is a large amount of bio-accumulation that can occur with Mg2+; therefore he wanted me on Mg2+ supplements for at least 1 month before Levaquin.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
| IP: Logged |
posted
First, let me say that I do not understand homeopathic medicine,so I may not be answering this right.
My understanding is that this company has taken 7 individual strains of bartonella and combined them to make this remedy. The dilutions go from weakest to strongest--200x is weakest and 5x is strongest.
This is my best explaination. Maybe someone more literate in homeopathy can jump in here and help.
I just know this helped my daughter.
Posts: 177 | From God's Grace | Registered: Apr 2007
| IP: Logged |
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Alv: 250 drops of Banderol? Yikes, how long did it take you to reach that dose. I take 30 drops 2 x per day - on the full Cowden. I rotated in the Banderol instead of the Quina.
posted
My understanding of homeopathic medicine is that it acts in a similar fashion to a vaccination.
Very, very diluted amounts of an organism are added into the tincture.
Not enough to cause infection (by any means), but enough to allow the body to recognize the organism as an invader so that the immune system will then seak out similar invaders already within the body and destroy them.
Lymer
Posts: 63 | From Humboldt County | Registered: Jul 2008
| IP: Logged |
Alv
Unregistered
posted
yes , I already finished my 6th bottle of banderol.I take 250 drops in one cup of water.I take it before I sleep.During the day I take 15 HH capsules , mino , rifampin , azithr and at night banderol.....but is COMMING BACK.
IP: Logged |
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Sparrow & Metallic Blue:
My LLMD tried to explain the theory of dilution to me but it started sounding like a college lecture that was too confusing for me to absorb. I consider myself fairly intelligent but soon my face became glazed over and it went right over my head. I was embarrassed to press onward.
However, I know people like Bejoy, Sparkle and now Sparrow have mentioned it with success and I'm very interested in it for a maintenance program (and/or for more killing).
I clearly have more killing to do as I'm herxing a little on the mesosilver, however, I always wonder if that's just a scary "silver" thing and not a herx.
My LLMD totally promotes these Deseret Biologicals so maybe I could take better notes in my next phone consult (on Monday) so I could articulate the methods and ingredients to you guys so we'd all have a better grasp on the concept.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic