Topic: Please tell me there's a way out of this bartonella/BLO hell!
CD57
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Member # 11749
posted
help! I can't stop crying. I've treated bart aggressively for over a year, I quit Levaquin because I was having continuing toxicity and pain, I've already done Rifampin, and I FEEL LIKE THERE's NO WAY OUT OF THIS HELLHOLE. My LLMD is on vacation. I have a call in to LLMD psychiatrist.
I know that bart has to be treated several times before it's gone but what if you run out of options that work???? I'm sorry to scare anyone but I'm really desperate, completely non-functional. I can't live like this, I just can't.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I believe there is a doctor in Florida who specializes in bartonella. I think he just wrote a new book on the subject. He is quite confident that he can effectively treat it. He mentioned something about HH from hempro to me when we talked about bart.
Maybe you could follow up on that route
Hope you feel better.
Posts: 219 | From Michigan | Registered: Apr 2008
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lymielauren28
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Hey CD, I'm sorry you're having such a rough time. I second that on the HH capsules. I haven't tried them but you can get them from Hepapro w/o a prescription.
I know that Dr. Schaller wrote a book on Bart and he says that HH is better than any abx in getting rid of it.
Hang in there!!!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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I know where you are at and I am glad you have called the psychiatrist. Do you have anyone araound you? Or are you home alone?
If you are alone, please call a friend or family member and have them come stay with you for a while.
Is there anything that makes you feel better when you are in a funk? If so, please do that as shallow as it may sound.
As for treatment, it will get better it just takes time and you know this. you need to get in touch with your logical side as hard as that is, I know.....
The HH is suppose to be a good option so we have all been told. I too hope it correct. I did stat the entire Zhang protocol last week and will say I am feeling better. Of course the herx is on the way too I suppose but for today and the past few days it has been a bit better.
Suddle changes noted but an increase in energy and especially clarity for the time being. Also have to say, my mood is better and much more stable....I even felt rather chipper this morning!
Hang in there, this too shall pass and you can make it! If you are alone and cant find anyone, pm and we can talk!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Alv
Unregistered
posted
Order HH capsules asap from HEPAPRO.com and also take some allicin and BANDEROL ..
YOU are right ...my rifampin is not working anymore either and I want to see my LLMD tomorrow as it SLOWLY is comming back and you can not be cold turkey with nothing as this one comes BACK SO FAST
I take 10-15 HH a day and also rifampin and azithr and 250 drops of banderol....
I know it sucks ...and I just want out of it.. ...it is not easy I KNOW...do not want to scare you but at least herbs can do something ...also take resveratrol!!!!
YOu should not stop treatment for it until you have no symptoms....DR JS says on the book that you need to retreat it ...but no body knows how many times.
So you can still go back on rifampin and azithr and add herbs...asap....THE BEAST COMES back FULLY force in 2 weeks....
CD57
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Member # 11749
posted
I am taking resveratrol, six HH capsules/day, Rif+mino+Bicillin+supplements+glutathione+and the list goes on and on and on....
I think IV Avelox may be next.
Does resveratrol DO ANYTHING????
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bejoy
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posted
I made great progress with the Bartonella homeopathic series remedy from Deseret Biologicals. You have to get it from a health professional who prescribes homeopathics. It can be used in conjunction with other treatments and antibiotics, if needed.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Alv
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posted
Bejoy ...I do not think you have BLO that CD57 and I have.
ByronSBell 2007 what are you taking righ now for BARTONELLA and how long are you on this IV.
Our strains seems HORRIBLE( BLO /MUCO) whatever this is ....Resveratrol just stops it for reproducing...based on Buhner...and detox the brain form the toxins that BLO reproduces..
The homnepathic formula ( that I have tried ) does not even touch this kind of strains...as this is more as a parasite that goes in our blood cells and BOY ...I do not know how we can get rid of it...
That i swhy I decided LEVAQUIN before we attempt HIGH DOSAGES of MESOSILVER that is TOXIC for the body ..
THE POINT is that in order to KILL it we NEED TO TAKE MEGADOSAGES!!!!I have tried RELEIF only on MEGADOSAGES....but HOW LONG can you keep on taking them ?
I even tried more than 1 month of 15 HH capsules and reached 250Drops of banderol on top of it.
It comes that my body wants 1000mg of LEVAQUIn every time I ask...on what works....BUT 1000mg will kill the BUGS and ME at the same time!!!!!
I think that is what reaches this BUG!!!!!!VERY HIGH DOSSAGES that are really poisoning for us or be in maintanance for LIFE.
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mojo
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posted
For bartonella I am using IV vancomycin for the bartonella and lyme. I am also using heparin, Calci Clear AM & PM, along with bouluke.
There is no sense in treating bartonella if you can't get the ABX to reach them or to get them out of the red blood cells.
I will most likely treat for bart on IV for atleast 7 months.
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CD57
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Member # 11749
posted
Byron, do you think it's working?
Vanco is not supposed to kill gram negative bacteria, which is what bartonella is. I don't get why the doc is using that one. Did you ask her?
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ByronSBell 2007
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posted
My friend who was treated before me had bartonella for over 20 years. With this combination, it knocked out her bartonella in 6 months, her fry labs is 100% negative.
Getting the bartonella out of the red blood cells is the main focus to treating bartonella, just about all LLMD's over look this.
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CD57
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posted
That's good news. How tolerable is the vanco by the way?
I've gotten a lot of nice emails from my freak out posting, thank you. I wanted to let you know that I talked to the LL-psych who said I had too much die-off in the brain (drugs, herbs, bugs) and that was responsible for what I was going through. I did some nebulized glutathione and feel a lot better.
thank god for all of you!
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Angelica
Unregistered
posted
I am so glad to hear that you are feeling better!
What is nebulized glutathione and where do you buy it?
********************************
Well my Fry bart test is negative too only I have bart still so we really cannot say someone is over bart because their Fry test is now negative.
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Clarissa
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posted
C:
So sorry you are going through this hell. I think your best remaining options are posts from:
Byron: IV
bejoy: Deseret Biologicals (my LLMD wants me to use these products and I think I'm going to partake)
Alv: Banderol and HH capsules
You still have plenty of options. I have to tell you that, although my Bart has been declared in remission, taking just one teaspoon of Mesosilver a day for the last 2 weeks has been killing SOMETHING inside of me.
I've definitely been herxing so it may be a good one-stop-shop for a BLO-like phenomena. The silver hits everything and I think it's killing something in me that I might not even know I have.
This could be the case with you. You haven't found the right abx to hit this parasite that clearly doesn't even have an official name yet.
Please try and keep the faith...I know it's SO hard and you've been through hell.
Cyber hugs to you and if you need to talk, please pm me and I'll give you my digits.
You may need to vent to a fellow crybaby Bart Simpson.
posted
Well my Fry bart test is negative too only I have bart still so we really cannot say someone is over bart because their Fry test is now negative. [/QB][/QUOTE]
That is true, even though it is negative and there are no bartonella in the image there can still be others lurking around but bartonella's best friend is the red blood cell (it is what the bartonella uses to protect itself and when you start to see healthy red blood cells in your Fry Labs test results, you can take hope that your bartonella is defeated and the immune system can keep it under control.
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posted
2 months of levaquin 3 months of rifampin 5 months of moxifloxacin
these were done in combos with mino/doxy/malarone/valtrex/zithro + HH capsules + resveratrol + banderol + other herbs + deseret bartonella homeopathic remedy. Still positive for bart via Igenex IGG, with a higher titer then when I started treating. Nerve pain is my main symptom and it is still here. Will be stopping abx soon to see where I am at and since I don't believe they are working. My LLMD doesn't thinks there is benefit to heparin, as he tried it with some bart patients and these was no difference between them and the non heparin group.
Since nerve pain is my main (only?) symptom, I will be focusing more on this then some occult bacteria. That means megadosing fish oils + NAC ALA + L-Carnitine + B12,B1,B6 + Magnesium, no sugar, saturated fat, gluten and in general eating healthy.
My big hope for the future is IVIG, if/when push comes to shove - since so far I can still live with this and am hoping it will get better with everything I am doing to fight it.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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Clarissa
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posted
Thanks for the clarification regarding clear Fry Bart test, Byron.
My second test was clear after treatment and I'm hoping my immune system will take it from here.
However, I do want to continue some kind of maintenance, clean-up protocol to remain vigilante.
I don't think the Mesosilver's the answer for me but I am intrigued by the Deseret Biologicals.
CD57: STILL THINKING ABOUT YOU!!! makes me so sad that you are sad.
posted
I completely relate to your frustration!!! I find that going to very high dose of Houttuynia (I use powder, not the HH capsules) helps, but my bartonella is nowhere close to gone. It is so frustrating.
I did Cipro for about 7 wks (had to stop due to tendon pain) and have been on Rifampin for 6 1/2 months -- I am also taking Knotweed, Red Root, and Boneset, and have tried Cumanda and Banderol.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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CD57
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posted
Something else the LLMD-psych and I talked about today, which I think many of you know: back east when this all came about they only treated Lyme, and people got better. Was this because people weren't co-infected, or because once you get the Lyme load down the immune system can handle co's? Like bart/BLO?
Net net: she wasn't sure that the fluroquinolones were curative, or Rifampin, etc.
Clarissa: very interesting re: the mesosilver. Where do you buy/dose?
Angelica: I get nebulized glut thru the LLMD-psych, but your LLMd can get you an RX thru Key Pharmacy in WA. You need to buy the nebulizer kit.
Thank you all for the support! I am better now and am taking a short abx break per LLMd psych. Never done this before hope it goes ok.
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Boomerang
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posted
Interesting about the IV Vaco and the bart.
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METALLlC BLUE
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Member # 6628
posted
Dr. Burrascano said IV Vanco treatment and Bartonella aren't compatible given the high relapse rate. Just and FYI, I'm not saying it's a fact -- it's just what I last heard during his 2006 lecture.
-------------------- 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
Herxes I'm getting: crying jags depression whole left side (my bad Lyme side) numb/tingling/driftwood-like stiff neck tight bathing cap on my head
Clarissa ...don you know that this is BART!!!!
The more I treat it the more comes back with a ventage.Read the TMJ post .
I came back from my doctor.Mucscle testing shows that I have load of toxins still hanging around in my lower jaw ( thanks to TOO MUCH OF TOXINS form Injections and dental WORK done and metals PUT in my mouth).
It is exactly where the bugs hang around.
IT is LYME and BART.I still have mucoplasma but My HOT spots are where LYME and BART is hanging and they are flaring SO BADLY when I do something that has to do with chelation.
We all know how tought it is to get the metals and toxins out the SPINE , and head.
I remove metals and BAM GET SO WORST and the bugs flourish once you remove the toxins.....
I think this people that had less mercury and toxins level recover faster...and I can tell as I am living proof until you get this metals out and toxins OUT ..there is NO WAY OUT!
Mesosilver might be the answer but I am concerned as in regards to metals...I do not want to shut their mouth and leave them in the cage.I am trying to get this TOXINS out so they have less chances to stay there.
THAT is just my opinions ALL muscle testing from diferent doctors ( biologist dentist -best in North) my llmd , my other ND leading to the toxins in this place and that is why I have more pain than ever when I flare....
I can not keep up with very high dosages of Medications to keep them in their cages...I need to find a balance on getting this toxins out and kill them at the same time.
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Rianna
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You will get through this I just know you will. It ust does not help right now that he is on holiday as that takes your comfort blanket away but he will be back soon.
I discussed this exact issue with our LLMD and he said you sometimes have to keep cycling all of the bart drugs and with some IV is the only way so you still have that and so many other options. When he returns discuss the IV Rifampin route taken with Trental and heparin and an anti inflammatory IV like Ceftriaxone and an intracellular.
Again he confirmed to me that some patients need to treat with several combo's to finally get the bart but they will get it in the end so you just have to be really really strong and know you are with the very best
I know so many patients who have to plug away at bart for up to 18 months but they will get it eventually even if you need to go the IV route as I have.
HUGS and many Kisses and remember everything is transient and you WILL get through this Rianna
[ 14. September 2008, 12:38 PM: Message edited by: Rianna ]
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CD57
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Rianna--wow! Docs fly from all over the world to attend his courses? And he's at the forefront of bart(I did know this). He's had some difficult bart patients (I think I'm one of them).
So we WILL get it in the end?
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Clarissa
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posted
C:
Sorry to interrupt your thread but I think Alv is right about me and Bart. All of these symptoms are Bart-ish and Lyme so clearly I'm not done killing either.
So you're not alone!!! We will get this thing in remission from the West Coast to the East Coast.
Yes, Alv, I have figured it must be Bart, albeit, thankfully, in a lesser form than months ago.
I will address this with my LLMD tomorrow and maybe I'll get some tips for you, CD57, too.
Meso clearly brought it out but I don't think it's what I want to use to attack it again.
I'm going to get the 411 on the Deseret Biologicals and also consider the HH and Banderol.
Rianna
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Member # 11038
posted
Be reassured he will not leave you like this as he always has another alternative up his sleeve for Bart.
So he will get this Bart no matter what it takes and to confirm he has so many other AB's than you have not yet been on - Hang in there and pm me any time you need support.
XXXXXX Rianna XXXXXX
[ 14. September 2008, 12:39 PM: Message edited by: Rianna ]
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Clarissa
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That's great news, CD57 and Rianna! I'm so psyched for you guys.
CD57
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Thank you, you guys! I SO needed to hear that bart can be gotten, even if I have to go after it for a long time. I know one person who went after it 2.5 yrs before remission.
I am also stepping up my exercise regime, hope that will help.
Rianna, what is Trental? Is that what you take with your IV cocktail? and heparin? The thing that is great about Dr H is that he customizes protocols for all of us. No one is doing the same thing!
Posts: 3528 | From US | Registered: Apr 2007
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posted
hi Not that it matters much regardig treatment.But you may not have Bart but this new mycoplasma-haemobartonella bug found by Fry in the smears.I had very high and rising titers for bart,but they were negative in the reference-lab in france.I think trhat this new bug often cross-reacts with the antibody tests for bart. Know what you go through-all the best. gale
P.S. Rianna- if you know any doctors from europe could you send a PM?
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CD57
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posted
What is a mycoplasma-hemobartonella bug? Has anyone called the Fry Labs to find out? How is it treated?
I test negative for b. henselae so I don't think I have that one. b. quintana maybe?
Posts: 3528 | From US | Registered: Apr 2007
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Alv
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posted
I think yuo have the BLO/Mucoplasma.
I have the same symtoms as yours.
Came back from my doctor.My body is covered on green veins if you look through my skin and have some red lines on my thighs also.
I feel like I am a spider man person with all these lines in my body.I got this BUG here in USA.NEVER had them before.
That is when my neuro problems started followed by chocking feelings , panick atacks , vibrations , numbness and sharp pain in my shoulder that WISHED I WAS DEAD.
My last muscle testing showed that my Bart henselae is not creating any bloocakges on my system as in not a problem.I do now that is not completly gone.IS still hanging in my JAW .
But this lines came right after I started treatment and SO does my son and so does my daughter.
Ok .I showed this time that I have LYME and MUCOPLASMA ONLY as Active and problematic.
So when I started treatment I was showing viruses , babesia ehrlichia , than mucoplasma showed up and than rotated on other bugs ...while chasing them ..now babesia , ehlrichia and bart ( first time) shows are in remission even though I am still taking things that cover them ...My body wants LEVAQUIN.
All along LEVAQUIN was the Drug of choice in my case even in dosages 1000mg.
I restarted it back again for the 3rd time .So far I have done 3 months.I will continue on 1 month and see what hapens.
Well my joint deep bone pain is subsided only thanks to levaquin ...use.Still have pains but more MANAGABLE.
My neuroproblems are still there and mostly VERTIGO type.
But I am way better than I was last year while I was holding myself into walls to walk and could not walk..Still strugling on my vertigo problems that comes and goes but not 24/7 as it used to be !!
It is mostly as yu feel as you have MENINGITIS type problems.back of the head and spine and neuroproblems !!!!!!!
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Rianna
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[QUOTE]Originally posted by CD57:Rianna, what is Trental?
Sorry for late reply but I am away right now. Trental is used to help Rifampin or AB's penetrate and work at a deeper level. Its used for sticky blood originally but Dr H says its grat when used with Bart meds.
XX Rianna
Posts: 1172 | From UK | Registered: Jan 2007
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CD57
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posted
Update on this post: I took an abx break and focused on detoxing and am much better! don't know what is next for my bart......
Hope you all are as well. REALLY appreciate the support.
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