posted
Hubby has tried so many -- trying to come up with something else that might work.
Levaquin -- took for at least 3 months 3 or 4 different times in the last 6 years -- was pretty much a miracle drug but not strong enough
Cipro -- took for a month or two -- didn't do much of anything
Bactrim DS -- took for an entire year -- didn't do a whole lot
Factive -- took for 3 months I think -- different pulsing schedules -- improved red blood count to normal which had been low for over a year -- has even stayed barely in normal range for last 6 months
Zithromax -- took 300 mg or 600 mg 3 times per week for an entire year -- didn't do much -- but recently at 600 mg daily seemed to help improve elevated bilirubin and increase red blood count for a couple of weeks but both are going in the wrong direction again after 2 more weeks
Rifampin -- took almost 8 months to get to full dose of 600 mg and then crashed after a month at 600 mg in fall of 2008 -- have finally after many false starts just completed 6 months on this med -- 4 months at 600 mg and 2 months at 900 mg -- helpful, but not strong enough
Clindamycin -- took very low dose with quinine -- helpful in years past -- but recently didn't do anything added to some of other meds listed above
Note -- Levaquin -- was taken by itself several times, but also tried in combo with rifampin
Current combo is rifampin, zith and mino
About the only other oral med I can think of to try is Gentamycin and I doubt very much I can talk LLMD into that.
Any other suggestions for oral meds?
I don't know much about the newer IV meds such as Vancomycin, Tigecycline or Invanz -- do any of those really work on bartonella or BLO or mycoplasma? Or has anyone had success with IV Claforan?
Hubby has also tried many herbal things while on the above meds -- HH and HH2 both at very high doses and a high quality olive leaf extract didn't seem to do much at all.
Cryptolepis and Stephania tinctures also at high doses were very helpful for awhile. The herbs at high enough doses seem to work like the meds -- neuro symptoms improve and maybe some mild bloodwork improvements for about 2 weeks and then symptoms start coming back until we try some new med or herb and then the cycle repeats.
Hubby has been in continuous treatment for bart for 2 1/2 years now and just seems to be spinning his wheels.
Main bart symptoms are neuro and G.I. -- episodes of tremors, myoclonus and dystonia with dry heaves. Also some sweats, global headaches, mild eye pain and mild stiff neck.
Any suggestions appreciated.
Next LLMD appointment is 4/27 and we will either stop meds for 2 or 3 weeks to do the Galaxy Lab and Clongen bloodwork or try some new med combo and wait another month or two to do the testing.
The switch to oral Zithromax at 600 mg daily seems to be causing increasing symptoms of encephalopathy and hubby is getting worried that another major crash is not far off. Just not sure what to do anymore.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Where is Biaxin? Many reported success with that one, although long term.. Combos too, Bactrim DS with Rifampin is supposed to be a winner, same with Biaxin and Bactrim DS.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I think clindamycin is Biaxin.
Wow Bea. You guys have been at this a long time and it sounds like you have tried everything.
I'm curious how do you know that it is Bart that is the main problem?
Have you treated Babs? If so did that help with the Encephalopathy?
I have Bart and most docs say brain stuff is probably Bart. I went on Mepron and found that it really helped, I didn't even have a positive babs test (I don't have results back yet).
I would be intersted in hearing your story one day.
Take Care
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Haley -- Hubby thinks the babesia is gone. Does not have the drenching night sweats anymore or off-balance feeling and he can exercise ok (before babesia treatment it was a struggle to even take a walk).
Also -- Fry slide no longer shows ring form of babs -- went away after treatment with low dose primaquine and chloroquine. But treated with Alinia for 8 months I think after that just to be sure. Also was seen on a bloodslide way back in the beginning in 2002 by the old Bowen lab.
Fry slides (3 of them) and Clongen bloodslide both show gram negative bacteria which we think are bartonella or BLO or mycoplasma. We are hoping that the new Galaxy lab can actually identify the bacteria as bartonella.
I think Clarithromyacin is Biaxin.
Hubby doesn't seem to produce antibodies to much or anything -- babesia and bartonella both diagnosed based on bloodslides.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Rife machine ?
Andrographis ? (As in Buhner's book "Healing Lyme . . .")
Holistic Approaches to Lyme Offer Much Promise An Interview with Dr. Amy Derksen, ND - by Scott A. Forsgren
Excerpt:
`` . . . Andrographis can be important if Borrelia is present and is helpful for Ehrlichia and Bartonella . . . .''
=============
Page 106, Buhner's book "Healing Lyme" mentions Japanese Knotweed as helpful against Bartonella (an author's correction from the ehrlichia misprint, 5th line from last). -
[ 04-20-2010, 06:27 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I am currently taking an herbal remedy for Bartonella called Bar-1 by Healthy Directions Inc.
It is STRONG! I had to start with 1 drop every other day.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
Since you've done all the meds- what about the AI treatment-- or stem cell treatment?
Posts: 200 | From New England | Registered: Dec 2009
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posted
Bea- your mailbox is full!
Posts: 819 | From East Coast | Registered: Apr 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
You said that Levaquin seemed to help some.
Did you try IV Levaquin?
-------------------- "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
Deseret Biologicals Bart remedy is very good. My daughter almost seemed well after one round of that--it worked better than any antibiotic that we tried. We maybe should have done more than one round with that. She got shingles about 9 months after doing better than she has in years and crashed.
Posts: 177 | From God's Grace | Registered: Apr 2007
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posted
keebler -- Hubby is on the core Buhner herbs and has taken them in varying doses for 2 or 3 years now in addition to his antibiotics.
Kitty -- Cleaned out my messages and sent you a p.m.
larkspar and Sparrow and fl3girl -- Have not tried any of those ideas yet.
Amanda -- Hubby did try IV Cipro for a few days about 3 years ago in the hospital when we started really concentrating on bart -- had a bad experience -- don't think his current doc would prescribe IV Levaquin. Actually not sure I can talk him into any IV bart med.
Tgym -- Hubby took tindamax with the factive -- did not do well on tindamax which probably means he needs a cyst buster. Please post on how the Invanz is working out. Have heard that that is hard to take plus I think it is very expensive.
Thanks everyone for all the thoughtful responses.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Bea-
I found great success with bactrim/rifampin combo. Got me to remission after 2 years of other treatments for lyme and co. But, I relapsed after three weeks and got C diff. So, I'm not sure your hubby and I have the same thing going on.
I'm still struggling to get rid of whatever this "thing" is. But, I've done all the hardcore bart and BLO meds so, I don't think that is what I'm dealing with. Some symptoms never went away with bart meds.
I did Gentamycin with doxy. Twice the length of recommended time (four weeks total). I did three months of IV levaquin and rifampin as well.
The only thing that touches my symptoms is bactrim/rifampin.
My symptoms are: messed up body temp with cold/hot episodes throughout the day
unrefreshing sleep
sensativity to light
sensativity to heat/cold
floaters
dry skin
low stamina
feet hurt when standing too long
I just wanted to share my experience and symptoms in case it might help you.
That being said, are you sure what he has is bart related?
Posts: 1104 | From N.California | Registered: Jan 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
is there any way you can get the doc to RX Tygacil? These bugs are really strong and I personally think IV is needed.
My current doc told me to get a Rife machine and get stem cells and he thinks my immune system is overreacting to a very few bugs (I disagree but he may have a point).
Posts: 3528 | From US | Registered: Apr 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Has he tried the BLT tincture from one of the ND's out West?
I think I have narrowed down what indgredient in the BLT is making me herx, and it's Teasel or Black Walnut. Since it seems to be a Bart or Lyme herx, I'm pretty sure it's Teasel not Black Walnut.
That might apply more to Lyme (teasel), but still thought I'd throw it out there, since the tincture is supposed to be for Bart or Lyme.
When we're talking Bart, for me, Zith is meaningless without Plaquenil.
So if he has never done Plaquenil and Zith together, that would be something to try. The whole process of herx to improvement was less than 2 months, I'd say. 3 months max. It'll take a week or more to start working, since the Plaquenil needs to build up in the body.
Posts: 4590 | From Midwest | Registered: Jun 2008
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