LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash
Topic Closed  Topic Closed
Post New Topic  New Poll  
Topic Closed  Topic Closed
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Bartonella Like Organism discussion thread (Page 1)

 - UBBFriend: Email this page to someone!   This topic comprises 2 pages: 1  2   
Author Topic: Bartonella Like Organism discussion thread
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
Myself and other posters have been having problems with the cult-like environment at MD Junction. They are censoring and deleting posts they don' ike arbitrarily.

I'd like to continue a discussion that was censored there.

Here is a protocol for a new treatment that I created which my medical doctor is successfully using on three patients with bartonella like organism.

From discussion at:
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/10838730-blo-bartonellalike-organism/limitstart/120

Warning: Must be medically supervised.

"protocol:

Supplements: Longvida curcumin (LVC), standardized green tea extract (GE)

Drugs: Either bactrim, levaquin or rifampin per MDs instructions.

Enzymes: wobenzyme 2-3 pills TID (3x/day). The right enzyme dose should decrease headache symptoms. Too much will make you feel sick/irritated.

Pain control: gabapentin for neuropathy (200-600 mg up to TID), acetaminophen 500 mg TID, ibuprofen up to 400 mg TID. Rotate drugs.

Use cross friction massage over painful ligament insertions to release nodules. This will decrease pain.

Liver support: N-acetyl cysteine 1 pill per day or per appetite of powder in 4 oz water.

Start by taking 1/4 tsp LVC powder in 4 oz water twice a day (BID).

Take 375 mg GE in 4 oz water after LVC to equal twice a day.

Do this for two weeks or until you have a craving for them, then increase amounts dosing 25% above appetite. My doses are above.

Contraindicated supplements: Alpha lipoic acid, resversatrol, milk thistle, japanese knotweed. When in doubt don't take it.

Nutritional support: (use by taste also) NT Factor Advanced Physicians Formula B-Vitamin Plus, B12, B complex, calcium, folate, copper, selenium, fish oil, walnuts/flax oil, trace mins, L-carnitine, CoQ10/ubiquinone (if older), potassium light salt, iodine, sulphur. May be foods or supplements. Protein: animal type (soy, red meat, liver, tofu), vegetable type (beans, whey protein, nonstarch vegetables).

If you're doing this right you'll get the most intense neuropathy you've experienced thus far which will be followed by healing and improvement. Coverage will depend on how long you've been infected. Expect neuropathy in all nerves you have increased abnormal function in, ear (tinnitus affects trigeminal nerve for face sensation, hypersensitive hearing), threat (gagging), teeth (nerves running to teeth through jaw), tongue (feeling), arms, back, etc."

[ 10-08-2013, 07:50 AM: Message edited by: fadingout ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
I'm not sure how to respond- I also have strong feelings about Bartonella, carrying it for decades, and passed in utero/breast feeding to 1 of my children.

What kind of feedback/ discussion are you looking for here?

I read part of the link you posted, it was uncomfortable.

I have treated and taken just about everything for Bartonella- everything. 1 year ago, my last 2 months on antibiotics, I was feeling great- and done,

went off antibiotics, few months later discovered I wasn't done treating parasites- huge co- infection issue for me- and I believe they hold bacteria-

I've had a 're-surge' of my Bart with tremendous die off of parasites, and am doing a round of Cipro for UTI now, and feel the Bartonella responding.

Your protocol listed does look good- I take and have taken all of it before except pain nerve drugs- never had to.
Best wishes.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
P.S.
I'm not sure I agree 100% with your statements-
acetaminophen can impair glutathione production in your liver,

it's not something I will ever take, and I love milk thistle,
but I support you getting better, as I know intimately

how destructive Bartonella or Bartonella Like Organisms
are to live with.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
They deleted all my threads and removed my username so so unfortunately the link above won't work. Good thing I copied the protocol over.

The basic rationale is this. BLO isn't bartonella so don't get them confused. The responses we see are consistent with a stealth intracellular pathogen that slowly colonizes by blocking the immune system. I first suspected this after losing the ability to have a fever response to pathogens after becoming disabled by it. It does this by blocking cellular apoptosis so it prevents new antibody production and destruction of infected tissue.

Judging from response to supplements, it uses known apoptotic blocking pathways to do this. Three important ones we think are blocked are: upregulating the NF-KB inflammatory pathway, caspase-3 and PI-3.

Drugs for BLO are called bacteriostatics. They just stop it from reproducing for a while. Normaly with a working immune system the body can catch up and kill it. However BLO is different, it lives inside the cells and blocks the immune system so there is no catch up. This means all you get is a little die off which makes inflammation you feel as herx and then you never get well.

When the immune system works if there is an intracellular infection it undergoes a process called apoptosis-infected cells die to prevent the organism from using them to colonize. The supplements are contraindicated if they act to block apoptosis in a way that helps the organism stay infected. That’s why if you take them it stops improvement. You’ll feel that as less neuropathy.

Following this protocol gives a totally different response versus drug treatment. You get massive neuropathy that clears and heals. The longer you have the illness the lower your chances are of ever beating it because it takes over increasing amounts of tissue, leaving no uninfected cells to take over function and resulting in permanent loss of function.

[ 10-06-2013, 01:11 PM: Message edited by: fadingout ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
PS-We think the regimen may work against borrelia afzeliii which also blocks caspase-3. It compromises 25% of lyme cases.
Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
>acetaminophen can impair glutathione production in your liver

It's not the only factor. According to my MD/pharmacist stacking acetaminophen with ibuprofen and gabapentin is the best way to deal with the intense neuropathic pain you have to work through. It gets better after a few weeks as you work through the fibrosis.

By the way, I posted as NCrebel at MDJunction's Lyme Group.

[ 10-06-2013, 11:57 AM: Message edited by: fadingout ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post 
I am glad to see this because I am one of the ones who has not successfully treated bart with all the regimens. I have taken those medsbefore, althoughnot together.

I do agree that there is some blockage of immune response. I am unable to mount a fever to anything or get a cold.

I will PM uyou.

Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
I failed the ILADS/Burrascano BLO protocol as well.

Meds are just bacteriostatics so it's up to your MD what he wants to use. I've found bactrim useful and I like dosing 2 weeks on 2 weeks off. I've used levaquin and developed painful tendon nodules. I don't think it matters and I don't expect any of them to do more than freeze the bacteria's growth for a while. This is more useful in the early stages.

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post 
I still don't see what GE and LVC are?

So the supplements are really the key to managing certain pathways? I don;t understand how that makes the bugs die?

My symptoms are going to kill me, or this bug is.....I start meds, have one day herx, feel great the next few days, followed by a massive slide backwards. THIS MAKES NO SENSE.

Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post 
SORRY, now I see what those supps are. BRAIN FOG.
Where do you find your supps? I haven't seen LVC come in free form powder.

Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post 
So fadingout, do you get an immune response now? And all your symptoms were neuropathy related with this organism?
Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
>So the supplements are really the key to managing certain pathways? I don;t understand how that makes the bugs die?

It restores immune response. You can make antibodies to attack BLO in the blood and the infected cells can kill themselves, exposing the BLO to the antibodies and killer cells in the blood stream.

Green tea extract is important to regenerate nerves.

>My symptoms are going to kill me, or this bug is.....I start meds, have one day herx, feel great the next few days, followed by a massive slide backwards. THIS MAKES NO SENSE.

The drugs probably just slow down infected cells in the blood vessels, making inflammation come down for a while but it returns when you stop.

>Where do you find your supps? I haven't seen LVC come in free form powder.

http://www.nutrivene.com/view_item.php?id=344
Long vida curcumin powder

https://www.swansonvitamins.com/swanson-superior-herbs-green-tea-extract-500-mg-60-caps
Green tea extract

>So fadingout, do you get an immune response now? And all your symptoms were neuropathy related with this organism?

My pain levels have come down a lot and I’m taking less meds to manage. I’m working through the remaining areas, hands, sacroiliacs, left throat. It’s a progressive, gradual process and you have to be patient. However, the trigeminal nerve is almost totally fixed (gagging, tinnitus) and mental state (anxiety, depression) is almost normal.

Fatigue varies and I still have breathlessness that I think may be due to babesia.

Overall I’m doing well. A few months ago I was taking two naps a day and having to treat severe anxiety and brain fog.

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
In Buhner's new book about co- infections, he addresses inflammation pathways (I've been out all day, don't have the energy to pull the book and check the formal pathways you wrote)

Anyway, he states address/ block these pathways, (Bartonella) cannot survive- he uses high dose green tea caps, arginine, and certain herbs...

I did Buhner's full Bart protocol including supps (green tea does nothing for me, could be brand). Didn't feel a herx like I do with fluoroquinolone antibiotics, but, I had already treated extensively.

I did combine Levaquin and Rifampin together one time per my LLMD, and I had serious brain zaps- for days- discontinued rifampin and kept w/ Levaquin.

At times, it can be hard to distinguish very high dose antibiotic combination side affects/ interactions or infection die off -
when I combined those 2, I couldn't tell- and it was serious enough not to chance (for me.)

I've had improvements, and after my retirement account spent, a family to care for, at some point have to move on. I feel like I'm trying to do this now.

I need a healthy lifestyle to continue, expensive supplements- I use Enhansa now, but love Longvida and took it for 2 years- it is hard to find lately (?)

I don't have the money or emotional availability to send new samples to Galaxy or Fry labs to look for creatures in my blood-

I'm sure some are there- so I continue to work on parasites, see them in the toilet instead, and believe my immune system is improving this way.

By the way, I never mount a fever, either. Ever.
Please keep in touch here as you move through this protocol and improve, and how. Appreciate it, thank you.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
rowingmom
LymeNet Contributor
Member # 41213

Icon 1 posted      Profile for rowingmom     Send New Private Message       Edit/Delete Post 
Trouble is Buhner suggests the use of knotweed, while fadingout suggests not to use it.

--------------------
13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement.

Posts: 265 | From Canada, Ontario | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
Buhner also advises (for Bartonella in his book)
high dose milk thistle.

I think if you have Bart or BLO and can somehow make it through combined Levaquin, Rifampin, and Bactrim DS

ALL taken at the SAME time without dying,
then you will eradicate it and feel better.

(lol, sorry)

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
I don’t consider Buhner an expert, just a lay herbalist with no science background. Although the NF-kB pathway concerns inflammation, the others do not (PI-3, caspase-3). Inflammation is not the primary underlying problem here so his advice is useless. I could give you 600 mg of ibuprofen which will block all the inflammation for example, does that get you well? No.


>Anyway, he states address/ block these pathways, (Bartonella) cannot survive- he uses high dose green tea caps, arginine, and certain herbs...

BLO isn’t bartonella.


>I did Buhner's full Bart protocol including supps (green tea does nothing for me, could be brand). Didn't feel a herx like I do with fluoroquinolone antibiotics, but, I had already treated extensively.

If you take the contraindicated herbs it blocks the response.

>I did combine Levaquin and Rifampin together one time per my LLMD, and I had serious brain zaps- for days- discontinued rifampin and kept w/ Levaquin.

Interesting. I’m glad I never did that.

>Please keep in touch here as you move through this protocol and improve, and how. Appreciate it, thank you.

I’m already so much improved that would be redundant. My MD is using this on three other people. It works.

I've already felt a "sick" response for the first time in years. If i actually get a fever I'll let you guys know.

Knotweed has resversatrol. You can't use it. It blocks apoptosis.

(Chen, F. Resveratrol Protects Vascular Endothelial Cells from High Glucose-Induced Apoptosis through Inhibition of NADPH Oxidase Activation-Driven Oxidative Stress. CNS Neurosci Ther. 2013 Sep;19(9):675-81. http://www.ncbi.nlm.nih.gov/pubmed/23731528)

He's only using it because it inhibited growth in a petri dish and is an anti-oxidant. The drugs already do that (inhibit growth) and for the nth time, bacteriostatics can't cure you so there's no need for it. Milk thistle is an unnecessary liver support herb that also blocks apoptosis. Both are a waste of money and will keep you from responding to my protocol.

The drugs won't kill this thing. They are bacteriostatic. You guys did the Buhner protocol and it didn't work. Enough said.

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
Well, I can see why the other board shut down your thread-

You also just went back and edited your earlier post here where you stated:

'Levaquin, Rifampin, and Bactrim'

So, I'm done. Good luck.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
You're very defensive. What I meant is that it's up to the MD to determine what drugs to use. Levaquin, rifampin and bactrim are all bacteriostatics so it doesn't give you an advantage in using more than one. I took all of them at one time or another, always plateaued and backslid. The other person here says they took them together and got "brain zaps". I never said to take the drugs together.

Anyway, I corrected the post to remove the confusion. Thank you for making me aware of it, even in your abrasive way.

MDJunction promotes quackery, rife machines and other ineffective garbage. If you disagree with them and show them why they are wrong they ban you. They also disparage this board. That's why I left.

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post 
-
Rife is not garbage. I don't know what your definition of "promoting quackery" or "garbage" is so I can't address other things but rife is most definitely not quackery. It's brilliant, solid and has helped many.

You also say " don’t consider Buhner an expert, just a lay herbalist with no science background." (end quote)

Not so. Not at all. Buhner holds certification as a master herbalist, clearly an important distinction and academic achievement. He is intelligent and an excellent author / researcher with a substantial science background in his subject matter.

Buhner's work has done a tremendous amount to improve my quality of life and broaden my understanding about how TBD work. He is to be commended for his continuing efforts with his TBD books, whether one might be inclined to incorporate herbals or not.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 10 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
There's no evidence showing rife has effectiveness against BLO and we wouldn't be here discussing my work if it worked so that speaks for itself.

Has Buhner's protocol produced any research showing definite outcomes with BLO? Also no.

Master herbalist? So he read a few plant books and knows how to make a tincture. I'm not impressed. I know how to make yogurt, does that make me a food safety scientist? Dairy engineer? Let's face it, he's selling books and herbs.

[ 10-06-2013, 08:04 PM: Message edited by: Lymetoo ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 12 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
You mean this home study course?

http://www.snh.cc/Master_Herbalist.html

or this one?

http://www.herballegacy.com/Master_Herbalist.html

You're trusting these guys to know how to interpret research? Big mistake.

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post 
-
That is not specific to Buhner's training. that's just a random link from a quick web search.

Besides, at least that one you found does include of 22 individual course levels. How many have you achieved?

Have you read all of Buhner's books? All his research? Given thought to it? It really is quite good.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
You're dodging the issue. There's no research showing any of it works. I don't care about herbalism courses (which are weak anyway and have no research training, biochemistry, physiology-a RN has better training). If I want to learn about herbs I search medline and see what the research says. Herbalists aren't physicians. The "master course" is a six day seminar. Moreover, the site says much of the work was developed by the founder in the 1950s. It's irrelevant to modern science.

[ 10-06-2013, 08:05 PM: Message edited by: Lymetoo ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post 
"Modern science" seems to have forgotten ancient wisdom.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
too,

That's not true really. There is a lot of research on herbals. Say curcumin, that's what is in long vida. That's been used in ayurveda for a long time. But the spice form doesn't work against BLO, only the long vida supplement form. I used research to come up with the BLO treatment. That plus trial and error to observe responses.

I do have a gripe with MDs that they are overworked and don't bother to learn about supplements. But for BLO nothing else out there works.

Fading DC CNIM CDM CRA

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post 
Just to remind everyone here, we allow discussion of all kinds of protocols, since it's never one-size-fits-all - protocols help some people and not others. That goes for Rifing, the Buhner herbs, etc - they work for some. That's why we need an open discussion, not a judgmental one.

What will help most here is if you say this worked for me or it didn't work for me, as we're all different.

One more thing, and this is me talking - we might make some guesses as to why a protocol works, but I don't think we're at a point to be able to precisely explain why it works - that's down to micro biochemistry and genetics and those are very complicated sciences.

Posts: 13171 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
Robin,

I used to work in pharmaceutical research and have a science background. I know when something is having a clinical effect and I discuss findings with my treating MD. Some people can understand science, some can't.

There is no evidence that rifing and Buhner herbs are effective against BLO. If they were people would be recovering. Neverending herx isn't a recovery.

Please don't force me to accept treatments when the evidence is against them just so as not to upset people who are doing them. Live and let live.

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
The 3 people your MD is treating under this protocol criteria only:

Are they off of everything yet and have had full remission for a year or more?

I understand you've been on this protocol for only 2 months, and still treating?

Free and clear with no drugs or expensive herbs for a year or more would really impress me. Back to full function life, no drugs, no herbs, 12 months plus?

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
rowingmom
LymeNet Contributor
Member # 41213

Icon 1 posted      Profile for rowingmom     Send New Private Message       Edit/Delete Post 
Fadingout - You bring up an interesting question about whether or not blocking specific inflammatory immune responses, specifically apoptosis, will result in improper function of the immune system and thus clearing of infection.

I have often wondered about this as many parents on another form that I follow, use steroids to reduce the "autoimmune" response caused by strep and other infections, in the brains of their children (PANS/PANDAS).

Using steroids is counterproductive in situations involving bacterial infection, allowing the infection to proliferate.

But the children show huge gains in behaviour and autoimmune symptoms (OCD, anxiety, depression, emotional lability, irritability, aggression, behavioural regression, ADHD, loss of short term memory, loss of spatial abilities, confusion, sensory symptoms, dysgraphia, motor/vocal tics, urinary frequency) while on these treatments, so the parents continue.

Without anti-inflammatories of some type, most of these children are unable to function in society. We have chosen to use Japanese knotweed. Others choose ibuprophen, along with IVIG and/or PEX and/or antibiotics.

Again, I have wondered if using herbal anti-inflammatories would have the same result as using steroidal anti-inflammatories by shutting down important parts of the immune system and allowing the infection to gain ground.

Our daughter uses knotweed to address her brain inflammation symptoms, and her responses to it (symptom-wise) are quite impressive.

Our LLMD says that bartonella is the cause of her PANS reactions (Igenex positive for B henselae, IND for lyme), and that if we can decrease her bartonella load, the PANS will resolve. This is exactly what we have seen with 2 years of multiple/combo abx.

She weaned from abx in April and we continue with full doses of Buhner's bartonella protocol, along with A-Bart.

As of Jan her bartonella IgG titers had fallen from 180 to 60, but this was while on abx. We will continue to follow them. She appears to be in remission.

--------------------
13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement.

Posts: 265 | From Canada, Ontario | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post 
yes, this is all very interesting discussion. I think we should agree not to disparage Buhner, as his contributions to many in the Lyme community have been invaluable. Also he comes from a family of medical practitioners and has done thousand of hours of research to come up with those protocols.

Interesting about the apoptosis. I need to go back and read the section again on why japanese knotweed is so important in the bart protocol.

Fadingout's protocol is enzymes plus curcumin and green tea extract. Easy enough to try, much simpler than many protocols. I don't get an immune response to anything so I may be a BLO person (I know I'm a bart person already).

Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
packypacky
LymeNet Contributor
Member # 41758

Icon 1 posted      Profile for packypacky     Send New Private Message       Edit/Delete Post 
Hi I appreciated your sharing of protocol but I have a few questions:

1. Why is Wobenzyme superior to other enzymes? I am taking virastop which contains serratiopeptidase and nattokinase and some other enzymes. I took Wobenzyme years ago for endometriosis and I didn't know it is a better one than serratioeptidase? can you explain?

2. Can I take termeric instead of Longvida curcumin (LVC)?

3. Can you show me any references for your protocol?

Thanks very much. I'm eager to get my Bart treatment soon.

And by the way, I feel your statements make some sense from my experience:
I tried Alpha lipoic acid and resversatrol and found both can give me bad headache(make baseline headache worse).
I don't know if its' due to the reaseason you mentioned as some anti-apoptosis properties of them and if this reaction can confirm I do have BLO?

Thanks again.

quote:
Originally posted by fadingout:
Myself and other posts have been having problems with the cult-like environment at MD Junction. They are censoring and deleting posts they don' ike arbitrarily.

I'd like to continue a discussion that was censored there.

Here is a protocol for a new treatment that I created which my medical doctor is successfully using on three patients with bartonella like organism.

From discussion at:
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/10838730-blo-bartonellalike-organism/limitstart/120

"protocol:

Supplements: Longvida curcumin (LVC), standardized green tea extract (GE)

Drugs: Either bactrim, levaquin or rifampin per MDs instructions.

Enzymes: wobenzyme 2-3 pills TID (3x/day). The right enzyme dose should decrease headache symptoms. Too much will make you feel sick/irritated.

Pain control: gabapentin for neuropathy (200-600 mg up to TID), acetaminophen 500 mg TID, ibuprofen up to 400 mg TID. Rotate drugs.

Use cross friction massage over painful ligament insertions to release nodules. This will decrease pain.

Liver support: N-acetyl cysteine 1 pill per day or per appetite of powder in 4 oz water.

Start by taking 1/4 tsp LVC powder in 4 oz water twice a day (BID).

Take 375 mg GE in 4 oz water after LVC to equal twice a day.

Do this for two weeks or until you have a craving for them, then increase amounts dosing 25% above appetite. My doses are above.

Contraindicated supplements: Alpha lipoic acid, resversatrol, milk thistle, japanese knotweed. When in doubt don't take it.

Nutritional support: (use by taste also) B12, B complex, calcium, folate, copper, selenium, fish oil, walnuts/flax oil, trace mins, L-carnitine, CoQ10/ubiquinone (if older), potassium light salt, iodine, sulphur. May be foods or supplements. Protein: animal type (soy, red meat, liver, tofu), vegetable type (beans, whey protein, nonstarch vegetables).

If you're doing this right you'll get the most intense neuropathy you've experienced thus far which will be followed by healing and improvement. Coverage will depend on how long you've been infected. Expect neuropathy in all nerves you have increased abnormal function in, ear (tinnitus affects trigeminal nerve for face sensation, hypersensitive hearing), threat (gagging), teeth (nerves running to teeth through jaw), tongue (feeling), arms, back, etc."


Posts: 101 | From nowhere | Registered: Aug 2013  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
Surprise,

This protocol is just a few months old so we don’t have the data yet. However the response is consistent with theory. Patients get neuropathy consistent with apoptosis with numbness followed by hypersensitivity and normalization. The goal is to regain much function as possible while still allowing full clearance of infected tissue to prevent recurrence.

Rowingmom,

I reviewed the PANDA criteria, it definitely overlaps with BLO symptoms and I suspect we could be dealing with some kind of intracellular infection. Knotweed is a double edged sword. According to Chen it helps lower NF-KB inflammation but also decreases reactive oxygen species so it blocks apoptosis and clearance. On the other hand clearance wouldn’t be possible if you have an unaddressed immune blocking effect that prevents antibody creation.

I am really concerned about the prevalence of this BLO infection in the population. I think it may be a hidden epidemic-perhaps even being diagnosed as PANDA. It colonizes slowly, given only subtle changes until the immune system is low enough for it to reach critical mass. Early symptoms are transient “growing pains” in joints and bones, streaky rashes in the abdomen, chest and shoulders, acne, and progressive hyperactivity of peripheral and cranial nerve function (high pitch hearing loss, tinnitus, gagging, j point elevation on ecg) followed by anxiety, depression, social avoidance, mole appearance from free radical damage to skin, light induced headache, poor balance, fatigue and muscle pain.

Bartonella also has an intracellular chronic form, and appears to target the same pathways as this so if there was a resistant cast this protocol might work (with modifications if other enzymes were needed, check blood fibrinogen response).

Packy,

I don’t know the reason why Wobenzyme is better. It just is. My MD uses blood fibrinogen to measure it and this correlates with symptoms when something doesn't work or is being underdosed. Lumbrokinase didn't work and we had to hit a certain amount of Wobenzyme before it improved. We didn't test the one you use.

No you can’t use turmeric. It has poor absorption.

>And by the way, I feel your statements make some sense from my experience:
I tried Alpha lipoic acid and resversatrol and found both can give me bad headache(make baseline headache worse).
I don't know if its' due to the reaseason you mentioned as some anti-apoptosis properties of them and if this reaction can confirm I do have BLO?

I don’t think so. MDs diagnose BLO usually by clinical symptoms and ruling out other issues. Microscopy is also sometimes used.

Here are some references:

Chmielewski T, Tylewska-Wierzbanowska S. Inhibition of fibroblast apoptosis by
Borrelia afzelii, Coxiella burnetii and Bartonella henselae. Pol J Microbiol.
2011;60(3):269-72. PubMed PMID: 22184936.

Kempf VA, Schairer A, Neumann D, Grassl GA, Lauber K, Lebiedziejewski M,
Schaller M, Kyme P, Wesselborg S, Autenrieth IB. Bartonella henselae inhibits
apoptosis in Mono Mac 6 cells. Cell Microbiol. 2005 Jan;7(1):91-104. PubMed PMID:
15617526.

Cheah FC, Hampton MB, Darlow BA, Winterbourn CC, Vissers MC. Detection of apoptosis by caspase-3 activation in tracheal aspirate neutrophils from premature infants: relationship with NF-kappaB activation. Leukoc Biol. 2005 Mar;77(3):432-7. Epub 2004 Dec 16.

Hussain AR, Al-Rasheed M, Manogaran PS, Al-Hussein KA, Platanias LC, Al Kuraya K, Uddin S. Curcumin induces apoptosis via inhibition of PI3'-kinase/AKT pathway in acute T cell leukemias. Apoptosis. 2006 Feb;11(2):245-54. PubMed PMID:16502262.

[ 10-07-2013, 06:58 AM: Message edited by: fadingout ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
Could it be as simple as the Wobenzyme, in breaking up the fibren, breaks up biofilms,

thereby letting the Bartonella/ BLO antibiotic (Levaquin, Rifampin, Bactrim) penetrate the infectious organism, getting rid of the infection?

I used Boluoke while on my treatment/ antibiotics for Bart.
Along with quality Curcumin (Longvida/ Enhansa)

I wasn't trying to be snarky when I asked about remission after finishing this particular protocol-

But it's hard to get excited when it's in the 2 month stage of treating, and patients are having response. It's AFTER the treatment is concluded

where the results really speak, for me.
And, IMO, this protocol is extremely similar to what my LLMD used... and what I studied for myself.

(Edited for spelling)

[ 10-07-2013, 09:50 AM: Message edited by: surprise ]

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
>Could it be as simple as the Wobenzyme, in breaking up the fibren, breaks up biofilms, thereby letting the Bartonella/ BLO antibiotic (Levaquin, Rifampin, Bactrim) penetrate the infectious organism, getting rid of the infection?

You didn't answer her question why one is better than the other. Wobenzyme is proven in clinical trials. Is the other product?

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
Boluoke trials, information, studies:

https://www.researchednutritionals.com/store/item.cfm?code=CBD202

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
I know there are studies on lumbrokinase surprise. However there are no studies on it with BLO patients. According to the page you showed it is 10x better than the nattokinase in that virstop product.

As I said, I don't know why wobenzyme worked better. It just did and i'm reporting it.

Also, wobenzyme smells better than lumbro which is made from earthworms. I had a hard time keeping it down.

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
Well, you've inspired me to go drop $35. on some Wobenzyme this morning to try it,

as I'm on 1,000 mg of Cipro a day currently and struggling.
My extremities (feet and hands) are giving me grief.

I wasn't to keen to take earthworms, either, especially at $90 bucks a bottle, but I figured if I was going to go through hel!

I might as well try and do it right.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
Just make sure you follow the protocol closely. Any of the contraindicated herbs (or other herbs you might decide to throw in) may block the effect.

Be ready for very high amounts of painful neuropathy once the tissue starts dying.

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post 
The earthworm thing turned me off also.

It's the worm thing.

Battling intestinal worms...I know obviously earthworms aren't the same, but my association with the word, "worm", is horror and disgust now.

And the price is a turnoff also.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
(Note-Noticed NT factor was missing from protocol and added it. It's used in Burrascano protocol and is excellent at stopping free radical damage from leaky damaged mitochondria and building new ones).


Order Longvida Powder from Nutrivene.
http://www.nutrivene.com/view_item.php?id=344

[ 10-07-2013, 07:18 PM: Message edited by: Lymetoo ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
rowingmom
LymeNet Contributor
Member # 41213

Icon 1 posted      Profile for rowingmom     Send New Private Message       Edit/Delete Post 
Just thinking this morning that this sounds a little like the Marshall protocol - by blocking the anti-inflammatory action of the vit D receptor, I think they postulate that the immune system will be able to function at an optimum level, clearing chronic infection.

I have seen a couple of positive MP testimonies, but nothing overwhelming.

--------------------
13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement.

Posts: 265 | From Canada, Ontario | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
>Just thinking this morning that this sounds a little like the Marshall protocol - by blocking the anti-inflammatory action of the vit D receptor, I think they postulate that the immune system will be able to function at an optimum level, clearing chronic infection.

>I have seen a couple of positive MP testimonies, but nothing overwhelming.

I did the MP. It doesn't work. All they do is make you vitamin D deficient then rotate and pulse various antibiotics. It's totally different. Further, it's a one size fits all regimen and was developed by a man with no medical background (electrical engineer). Their website is depressing, it is filled with people who have done it for years and never recovered, still wearing their shades due to active photophobia. Anyone who disagrees with Marshall is expelled from their support forum. It's basically a cult that pushes quackery.

[ 10-07-2013, 07:19 PM: Message edited by: Lymetoo ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post 
-
I thought something was wrong with the way your PM function was working.

It is for the protection of BOTH parties to not trade personal email addresses with people we do not know. It doesn't matter which direction it's going, whether it's sent or received, we can loose control (and personal information can be discovered just with an email address, sometimes).

It's just a good thing for everyone to know first.

I also try to make sure that those I share with do not have a habit of doing group emails because then, it can go out to hundreds of people in no time. I've had to close email accounts because it's gotten so away from me.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post 
-
Again, for BOTH / all parties, either direction email addresses are exchanged, privacy matters are important to consider:


http://cmcweb.ca/epic/internet/incmc-cmc.nsf/en/fe00040e.html

Consumer Measures Committee

Watch Your Identity: Tips for Reducing the Risk of Identity Theft

Excerpts:

2/3 of the way down, section: Guard your Computer and its Information


. . . Spyware can also gather information about email addresses and even passwords and credit card numbers. . . .

. . . Do not send personal or confidential information over email. Email messages are NOT secure. . . .
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
Keebler nobody is going to rip anyone off just by giving an email.

[ 10-07-2013, 07:24 PM: Message edited by: Lymetoo ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post 
fadingout-I realize you had a hard time in the other forums and I can clearly see why.

It is unneccessary to criticize and critique every post in your thread, posted by other people.

This is a polite, supportive forum.

It goes both ways.

Please be respectful to others here.

If you wish to criticize and post negative comments towards others, please leave.

You remind me of LCHTom.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
He's the one being spiteful, he's badgering me about giving someone a $5 coupon.
Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post 
fadingout I am interested in what you're saying, but the manner can be abrasive- Keebler is right, this public board

can have a few wacky folks/trolls, and it is best not to give out real names. It's tough, because others aren't well or always thinking clearly, KWIM?

A highly respected MD who treated my daughter a few years ago knew the gentleman from UCLA who came up with Longvida, and it came recommended to me at that time.

I figure since I am on Cipro anyway (day 4) herxing I'd give this a shot- knotwood, ALA, milk thistle I can easily not take,
NT factor and EGCG caps I already have,

started Wobenzyme although I am hoping it's effect is increasing circulation to ease my pain rather than increase it,
we shall see.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
fadingout
Member
Member # 32511

Icon 1 posted      Profile for fadingout     Send New Private Message       Edit/Delete Post 
Wobenzyme doesn't seem to have good things you can perceive taking it to dose it and there's no appetite response for it so you're stuck using blood fibrinogen level to gauge.

Affected nerves are hyperesponsive to start. With treatment the neuropathy is inflammatory pain then hypo followed by hyper: deep nerve pain, hypersensitivity (dermal, taste, hearing), ligament insertion pain and even chest/heart pain. Hypo relieves pain leaving numbness, hyperesthesia followed by regrowth and normalization.

You also get neuropathic itching. Don't scratch, just lightly massage with no nails. You don't want to damage the skin. It goes away.

You'll be surprised how much tissue is involved. Keep in close touch with your doctor in case you need meds or have a crisis develop. If one is severely infected it could get quite bad. In that case the MD might need to slow down the treatment to prevent an emergency situation. I'll leave it to them to make that medical decision.

[ 10-07-2013, 05:27 PM: Message edited by: fadingout ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post 
I wonder how to track if this protocol is working if you DON"T have the neuropathic symptoms? Myself and Surprise don't seem to have this. Mine is minor anyway, but I have other severe neurological issues (cognitive, DP, crawling sensations and moving scalp muscles, tachycardia, insomnia, nystgamus.

(I guess the crawling IS neuropathy but not nerve pain in the classic sense)

Admin, if you are reading this, any way to take a look at why my posts show up 3x? keyboard issue?

Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
  This topic comprises 2 pages: 1  2   

Post New Topic  New Poll  
Topic Closed  Topic Closed
Open Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


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, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.