This is topic Bartonella Like Organism discussion thread in forum Medical Questions at LymeNet Flash.


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Posted by fadingout (Member # 32511) on :
 
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 ]
 
Posted by surprise (Member # 34987) on :
 
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.
 
Posted by surprise (Member # 34987) on :
 
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.
 
Posted by fadingout (Member # 32511) on :
 
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 ]
 
Posted by fadingout (Member # 32511) on :
 
PS-We think the regimen may work against borrelia afzeliii which also blocks caspase-3. It compromises 25% of lyme cases.
 
Posted by fadingout (Member # 32511) on :
 
>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 ]
 
Posted by CD57 (Member # 11749) on :
 
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.
 
Posted by fadingout (Member # 32511) on :
 
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.
 
Posted by CD57 (Member # 11749) on :
 
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.
 
Posted by CD57 (Member # 11749) on :
 
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.
 
Posted by CD57 (Member # 11749) on :
 
So fadingout, do you get an immune response now? And all your symptoms were neuropathy related with this organism?
 
Posted by fadingout (Member # 32511) on :
 
>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.
 
Posted by surprise (Member # 34987) on :
 
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.
 
Posted by rowingmom (Member # 41213) on :
 
Trouble is Buhner suggests the use of knotweed, while fadingout suggests not to use it.
 
Posted by surprise (Member # 34987) on :
 
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)
 
Posted by fadingout (Member # 32511) on :
 
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.
 
Posted by surprise (Member # 34987) on :
 
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.
 
Posted by fadingout (Member # 32511) on :
 
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.
 
Posted by Keebler (Member # 12673) on :
 
-
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.
-
 
Posted by fadingout (Member # 32511) on :
 
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 ]
 
Posted by fadingout (Member # 32511) on :
 
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.
 
Posted by Keebler (Member # 12673) on :
 
-
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.
-
 
Posted by fadingout (Member # 32511) on :
 
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 ]
 
Posted by Lymetoo (Member # 743) on :
 
"Modern science" seems to have forgotten ancient wisdom.
 
Posted by fadingout (Member # 32511) on :
 
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
 
Posted by Robin123 (Member # 9197) on :
 
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.
 
Posted by fadingout (Member # 32511) on :
 
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.
 
Posted by surprise (Member # 34987) on :
 
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?
 
Posted by rowingmom (Member # 41213) on :
 
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.
 
Posted by CD57 (Member # 11749) on :
 
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).
 
Posted by packypacky (Member # 41758) on :
 
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."


 
Posted by fadingout (Member # 32511) on :
 
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 ]
 
Posted by surprise (Member # 34987) on :
 
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 ]
 
Posted by fadingout (Member # 32511) on :
 
>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?
 
Posted by surprise (Member # 34987) on :
 
Boluoke trials, information, studies:

https://www.researchednutritionals.com/store/item.cfm?code=CBD202
 
Posted by fadingout (Member # 32511) on :
 
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.
 
Posted by surprise (Member # 34987) on :
 
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.
 
Posted by fadingout (Member # 32511) on :
 
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.
 
Posted by GretaM (Member # 40917) on :
 
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.
 
Posted by fadingout (Member # 32511) on :
 
(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 ]
 
Posted by rowingmom (Member # 41213) on :
 
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.
 
Posted by fadingout (Member # 32511) on :
 
>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 ]
 
Posted by Keebler (Member # 12673) on :
 
-
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.
-
 
Posted by Keebler (Member # 12673) on :
 
-
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. . . .
-
 
Posted by fadingout (Member # 32511) on :
 
Keebler nobody is going to rip anyone off just by giving an email.

[ 10-07-2013, 07:24 PM: Message edited by: Lymetoo ]
 
Posted by GretaM (Member # 40917) on :
 
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.
 
Posted by fadingout (Member # 32511) on :
 
He's the one being spiteful, he's badgering me about giving someone a $5 coupon.
 
Posted by surprise (Member # 34987) on :
 
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.
 
Posted by fadingout (Member # 32511) on :
 
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 ]
 
Posted by CD57 (Member # 11749) on :
 
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?
 
Posted by surprise (Member # 34987) on :
 
What has been happening for me, which is new:
The itching in one place, no rash, clear skin, unbelievable itch
under skin.

Since I started Cipro, pain in feet, calves, hands- if I lay down to rest, they can go numb. Left throat sensations come and go,

the headache that threatens underneath, tamping it down with Ibuprofen. The pain in hand was starting before Cipro.
I believed I released bacteria while treating parasites.

CD57, as I've felt my Bart (BLO, I am not sure) I DO have word retrieval issues when speaking, poor memory.

Last few days, I've had moments of speaking more animated, telling funny stories- haven't seen that in awhile (good)

I always said I never really had pain, more neuro. I've got pain now. (Not working out while on a Cipro). It's doable, but I am lying low, only going out when I have to-

Just took 2 Wobenzyme today- I am small, probably won't go more than 4. 1200 mg Enhansa, major probiotics, etc.
An Epsom salt soak on feet and legs is relieving.
 
Posted by CD57 (Member # 11749) on :
 
great Surprise. Did the itching start right after the Enhansa and green tea ? Fadingout may be onto something here.

I am also on Enhansa, 1200-1800mg and have added in EGCG/green tea 400mg x 2.
 
Posted by fadingout (Member # 32511) on :
 
Also, you'll get big streaky rashes. They clear too.

The itching was an early sign during treatment. The neuropathic nerve pain will follow as you keep loading long vida curcumin and the nerves are infected. Make sure you have the pain meds available or you'll be sorry.

With bactrim I've found that I need half the long vida dose than if I'm off it. So on bactrim I take doses of 187.50 mg (3/4 of a 1/8 tsp) every three hours versus double that off it. Also, be sure to dose before bedtime for night coverage if you have any appetite for Long vida.
 
Posted by surprise (Member # 34987) on :
 
No, the itching has nothing to do w/ Enhansa or green tea
(been on both before)
 
Posted by CD57 (Member # 11749) on :
 
great Surprise. Did the itching start right after the Enhansa and green tea ? Fadingout may be onto something here.

I am also on Enhansa, 1200-1800mg and have added in EGCG/green tea 400mg x 2.
 
Posted by fadingout (Member # 32511) on :
 
Don't use enhansa. Long vida has the best curcumin absorption (60x standardized) and is the most econonomical. We need really high levels to stop BLO since it is intracellular.

Don't deviate from the protocol.

Wobenzyme dose is 2-3 pills BID or TID per blood fibrinogen levels.
 
Posted by fadingout (Member # 32511) on :
 
People please save this protocol and repost in case my account disappears from the forum. I'd hate for it to be lost and I'm getting bad vibes.

People need to understand that I'm in pain myself from BLO and babesia. I need to be very direct to keep the conversation on track and to help the most people with an effective treatment.

If people want to direct mail me use [email protected].
 
Posted by surprise (Member # 34987) on :
 
Ring in ears for a bit. I'm finding Cipro powerful.

fadingout, I've got no way to measure fibrinogen. I weigh 100 pounds.
I will try 2 Wobenzyme 2 BID tomorrow.

I have a new $80 bottle Enhansa here. I do think Enhansa is very, very good. I had trouble finding Longvida capsules,

and support Lee Silsby Pharmacy (Enhansa- Our Kids ASD)
when I can- we go back a long way.
 
Posted by fadingout (Member # 32511) on :
 
I don't know if enhansa has an appetite response and I don't know how much to dose it. $80 per bottle is very expensive and it probably has much worse absorption (they don't even list it on their site). That's a waste of money.

At my off bactrim peak I was taking around 2.5g of Longvida curumin per day. That's a lot of curcumin to absorb. Don't play games with your treatment.

Long vida costs $33 per bottle here and that lasts about 2-4 weeks. This is where I get it.
http://www.nutrivene.com/view_item.php?id=344
 
Posted by Keebler (Member # 12673) on :
 
-
As with anything, there may be some people who need to be cautious about certain things.

A note for those with gallbladder issues: Curcumin can be too strong and cause some troubles, even gallbladder attacks. For those with gallbladder issues, turmeric might be a better choice, at lower dose, lower concentration for the typical reasons one might be taking it (aside from the topic of this thread).

For anyone on IV Rocephin (which stresses gallbladder even with protection), it's probably best to avoid the concentrated Curcumin and stick with less concentrated turmeric (again, for the typical reasons, unrelated to this particular thread).


For hearing / liver issues: because acetaminophen blocks glutathione in all cells of the body and can prevent the liver from making / managing it altogether, just be aware of that. It can damage the liver but also other tissue, functions, too.

Acetaminophen, even one dose per week, recently has been linked to permanent hearing (&/or vestibular) damage.

I don't have the time to post my research notes on this but some searching can provide more detail. Google Advanced Search is very nice so that terms are not broken up in the search process. Cross searches are much easier there, too.

PubMed also has nice cross-search capabilities.
-
 
Posted by fadingout (Member # 32511) on :
 
Keeb,

The MD would cover that stuff. People shouldn't do this protocol without a MD supervising. They'd be doing liver function tests for the antibiotics.

And curcumin at a low dose probably won't work. We have to saturate the body and get this stuff into very deep tissues, joints, ligament insertions, etc. Low dose most likely isn't going to cut it. I used standardized (low absorption) curcumin according to the recommended dosing BID and it didn't have an effect.

However, if someone has a gall bladder problem and can't tolerate it then I guess they're stuck with BLO. If this ends up being a long term cure, most likely they'd do the protocol and sacrifice the gall bladder and live with a special diet than have to continue to suffer with the BLO. BLO is that bad mentally and physically.

The pharmacist said acetaminophen used in this manner was a good drug. I haven't found any replacements to deal with the neuropathic pain once it gets going. What is the risk? 1:1 million? Seriously, warnings should be in proportion to risk.

http://www.medicinenet.com/acetaminophen/article.htm

"When used appropriately, side effects with acetaminophen are not common. The most serious side effect is liver damage due to large doses, chronic use or concomitant use with alcohol or other drugs that also damage the liver. Chronic alcohol use may also increase the risk of stomach bleeding."

Do you have a safer option to manage pain that's been medically approved? We can't increase the ibuprofen dose because that would inhibit the immune system. This is the best one I could find and I have had no issues with hearing loss.

The 2g dose really is maximal anyway. As time goes on pain decreases and you don't need as much medication.

[ 10-07-2013, 08:34 PM: Message edited by: Lymetoo ]
 
Posted by Keebler (Member # 12673) on :
 
-
In an interview, this author said that, based on her research, at the very most, no more than ONE dose per week of acetaminophen and it would be best to avoid it altogether. She said it's just such a risk to hearing damage.


http://www.doctoroz.com/videos/link-between-pain-relievers-and-hearing-loss

Pain Relievers and the Risk of Hearing Loss

- By Sharon G. Curhan, MD - 10/09/2012

Excerpts:

. . . The First Large Study of Analgesic Use and Hearing Loss in Women

We studied over 60,000 women who are participants in the Nurses’ Health Study II and followed them for 14 years in order to prospectively examine whether analgesic use is a risk factor for hearing loss in women.

During follow-up, over 10,000 women developed hearing loss.

The participants in the Nurses’ Health Studies are a remarkable group of dedicated and reliable women who have been followed for decades and have provided our group of researchers with a wealth of detailed information on their diet, lifestyle factors, medication use, medical conditions, and more. We used this information to evaluate how their use of analgesic medications may be related to hearing.

The Major Findings

We found that women who regularly took the analgesics ibuprofen or acetaminophen two or more days per week had an increased risk of hearing loss and the more often a woman took either of these medications, the higher her risk tended to be. . . .

. . . For acetaminophen, we found that compared with women who used acetaminophen less than one day per week, the increased risk for women who used acetaminophen 2 or more days per week ranged from 11 to 21% and the risk tended to be higher with increasing use. . . .

. . . Acetaminophen may deplete important factors, such as the powerful antioxidant glutathione, that protect the cochlea from damage. . . .

. . . Our findings for ibuprofen and acetaminophen are consistent with what we previously reported in MEN. In men, we also found that regular use of aspirin was associated with an increased risk of hearing loss. . . .

. . . What Does This All Mean?

There are a number of factors that contribute to the development of hearing loss. Advancing age is a strong risk factor, along with some medical conditions, certain medications, exposure to excessive noise and genetics. Our findings suggest that frequent analgesic use may also be an important but preventable contributor to hearing loss. . . .

----------------------

http://www.lakeviewhearing.com/new-study-finds-frequent-ibuprofen

Lakeview Hearing Center

NEW STUDY FINDS FREQUENT IBUPROFEN AND ACETAMINOPHEN USE MAY INCREASE RISK OF HEARING LOSS

References:

Curhan, S.G., Shargorodsky, J., Eavey, R., & Curhan, G.C. (2012). Analgesic use and the risk of hearing loss in women. American Journal of Epidemiology. Advance online publication. doi: 10.1093/aje/kws146

Curhan, S.G., Shargorodsky, J., Eavey, R., & Curhan, G.C. (2010). Analgesic use and the risk of hearing loss in men. American Journal of Medicine, 123(3), 231-237.

These can be found at PubMed.
-
 
Posted by Keebler (Member # 12673) on :
 
-
http://vitals.msnbc.msn.com/_news/2011/11/22/8962056-tiny-overdoses-of-tylenol-can-add-up-to-deadly-damage

Tiny overdoses of Tylenol can add up to deadly damage

11-22-11
By Rachel Rettner (My Health News Daily)

Taking even slightly too much Tylenol over a period of several days can lead to an overdose with deadly consequences, a new study says.

The study looked at what are called "staggered overdoses," in which a person repeatedly exceeds the daily recommendation through small overdoses. This is in contrast to the more familiar single overdose, when a person takes too many pills at once. . . .

-------------------

http://www.nytimes.com/2011/12/20/health/evidence-mounts-linking-acetaminophen-and-asthma.html?_r=1&src=me&ref=general

December 2011

Studies Suggest an Acetaminophen-Asthma Link

Excerpt:

. . . Even a single dose of acetaminophen can reduce the body’s levels of glutathione, a peptide that helps repair oxidative damage that can drive inflammation in the airways, researchers have found. . . .
-
 
Posted by Keebler (Member # 12673) on :
 
-
From: The One Earth Herbal Sourcebook (Tillotson, et.al.)

http://oneearthherbs.squarespace.com/important-herbs/turmeric-root-curcuma-longa.html

TURMERIC ROOT (Curcuma longa)

Excerpt:

. . . SAFETY ISSUES: Due to mucin-reducing effects, do not use the concentrated extract (curcumin) or oil in high doses, especially if you have bile duct obstruction, gall stones, or stomach ulcers. Use turmeric as a spice freely. . . .
-
 
Posted by Keebler (Member # 12673) on :
 
-
Some safer options to manage pain are included here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM LINKS sets


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.


http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/24039

Topic: Looking for long term pain management
-
 
Posted by fadingout (Member # 32511) on :
 
The information you posted is irrelevant keebler. We are not keeping people on acetaminophen for 14 years or overdosing it.

Morover the pain suggestions don't work.

Please stop interfering. You're not helping people.
 
Posted by Eight Legs Bad (Member # 13680) on :
 
Fadingout

You should not be prescribing drugs in this manner when you are not even a doctor.

You have written that a doctor should be consulted about various antibiotics which you list as "drugs", but in fact you have also advised people to take gabapentin , acetaminaphen and ibuprofen without calling them "drugs", and without any warning about discussing the matter with their doctors.

Even some therapeutic herbs can be harmful for some people in some situations, and can interact with other medications. If you really are working with an LLMD, let him/her prescribe, not you.

If like you say, you are a scientist who has worked for the pharmaceutical industry, then this is even more irresponsible on your part.

In fact I find it very hard to believe that a scientist who studied pharmacology would be unaware of the potential dangers of this "one-size fits-all" approach you are advising.

I find it hard to believe that a pharmacologist or something similar could possibly be unaware of the upgrading, in recent years, of warnings all over the world in regard to the NSAIDS, especially in older age groups.

Here is some information from NIH, which - believe it or not - sometimes do produce some useful information, though not on Lyme:

"People who take nonsteroidal anti-inflammatory drugs (NSAIDs) (other than aspirin) such as ibuprofen may have a higher risk of having a heart attack or a stroke than people who do not take these medications. These events may happen without warning and may cause death. This risk may be higher for people who take NSAIDs for a long time. Tell your doctor if you or anyone in your family has or has ever had heart disease, a heart attack, or a stroke;if you smoke;and if you have or have ever had high cholesterol, high blood pressure, or diabetes. Get emergency medical help right away if you experience any of the following symptoms: chest pain, shortness of breath, weakness in one part or side of the body, or slurred speech.

If you will be undergoing a coronary artery bypass graft (CABG; a type of heart surgery), you should not take ibuprofen right before or right after the surgery.

NSAIDs such as ibuprofen may cause ulcers, bleeding, or holes in the stomach or intestine. These problems may develop at any time during treatment, may happen without warning symptoms, and may cause death.

The risk may be higher for people who take NSAIDs for a long time, are older in age, have poor health, or who drink three or more alcoholic drinks per day while taking ibuprofen. Tell your doctor if you take any of the following medications: anticoagulants ('blood thinners') such as warfarin (Coumadin); aspirin; other NSAIDs such as ketoprofen (Orudis KT, Actron) and naproxen (Aleve, Naprosyn); or oral steroids such as dexamethasone (Decadron, Dexone), methylprednisolone (Medrol), and prednisone (Deltasone). Also tell your doctor if you have or have ever had ulcers, bleeding in your stomach or intestines, or other bleeding disorders.

If you experience any of the following symptoms, stop taking ibuprofen and call your doctor: stomach pain, heartburn, vomit that is bloody or looks like coffee grounds, blood in the stool, or black and tarry stools.

Keep all appointments with your doctor and the laboratory. Your doctor will monitor your symptoms carefully and will probably order certain tests to check your body's response to ibuprofen.

Be sure to tell your doctor how you are feeling so that your doctor can prescribe the right amount of medication to treat your condition with the lowest risk of serious side effects.

Your doctor or pharmacist will give you the manufacturer's patient information sheet (Medication Guide) when you begin treatment with prescription ibuprofen and each time you refill your prescription.

Read the information carefully and ask your doctor or pharmacist if you have any questions. You can also visit the Food and Drug Administration (FDA) website (http://www.fda.gov/Drugs/DrugSafety/ucm085729.htm) or the manufacturer's website to obtain the Medication Guide."

Elena
 
Posted by fadingout (Member # 32511) on :
 
Elena couldn't you have private messaged me your criticism? To me adding a medical warning is redundant. People are going to have to see a MD to get the medication anyway.

Regardless, I added it.
 
Posted by surprise (Member # 34987) on :
 
I must be missing something here- I am not reading fadingout's information as 100% literal, but rather a suggested

protocol about supplements and their interactions while on an antibiotic for treatment with a Bartonella Like Organism infection.

Every single type of pain reliever, whether OTC or prescription, carries a risk.

And I'm not reading this protocol as saying 'take a pain reliever whether you have pain or not'
But that HE has had pain, here is what he used.

There are many threads here pertaining to prescription pain relievers?
Threads about Collidal Silver IV's?
 
Posted by Eight Legs Bad (Member # 13680) on :
 
The information Keebler posted is NOT irrelevant.

Acetaminophen (we call it paracetamol here) IS potentially very dangerous in even a small overdose.

I have had to administer antidotes as a nurse to people who tried to commit suicide with this drug. Sometimes it is too late.

Because it is so easily available over the counter, it has been popular with people who do not actually want to kill themselves, but are extremely distressed and try to do a "cry for help" by taking a small overdose and then going straight to Casualty.

What they do not realise is that even a small overdose CAN kill, and even when it does not, may very easily destroy the person's liver and leave them to suffer horrifically for the rest of their lives...

Acetaminophen is no joke and is not generally prescribed for chronic long-term pain control.

A further danger is the fact that it is already an ingredient of many over-the-counter cold remedies, such that people may not realise how much they are taking in total. There are cases of deaths where a patient has taken it at the prescribed dose, but had a few doses of cold medicine on top, not realising the remedy contained this drug too,

In addition, when you are dealing with Lyme and co-infections, may people may well have some degree of liver damage to begin with - which would make acetaminophen (and indeed most drugs, but particularly this one) potentially dangerous.

In short, I am very very surprised that as a "pharmaceutical scientist" you would give advice like this here.

Gabapentin is a powerful drug too and is not to be messed with either without a doctor's guidance.

Here is some more good information from NIH on Gabapentin, as opposed to the RUBBISH they put out for decades on Lyme:

"(ga' ba pen tin)
... Do not take more or less of it or take it more often than prescribed by your doctor.

....

Gabapentin may help to control your condition but will not cure it. Continue to take gabapentin even if you feel well. Do not stop taking gabapentin without talking to your doctor, even if you experience side effects such as unusual changes in behavior or mood.

If you suddenly stop taking gabapentin tablets, capsules, or oral solution, you may experience withdrawal symptoms such as anxiety, difficulty falling asleep or staying asleep, nausea, pain, and sweating.

If you are taking gabapentin to treat seizures and you suddenly stop taking the medication, you may experience seizures more often. Your doctor may decrease your dose gradually over at least a week.

Your doctor or pharmacist will give you the manufacturer's patient information sheet (Medication Guide) when you begin treatment with gabapentin and each time you refill your prescription.

Read the information carefully and ask your doctor or pharmacist if you have any questions.

You can also visit the Food and Drug Administration (FDA) website (http://www.fda.gov/Drugs) or the manufacturer's website to obtain the Medication Guide.
Other uses for this medicine
Return to top....

Talk to your doctor about the risks of using this medication for your condition.

...
Before taking gabapentin,

tell your doctor and pharmacist if you are allergic to gabapentin, any other medications, or any of the inactive ingredients in the type of gabapentin you plan to take. Ask your pharmacist for a list of the inactive ingredients.


you should know that gabapentin is available in different forms that may be prescribed for different uses. Ask your doctor to be sure that you are not taking more than one product that contains gabapentin.

tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention any of the following: hydrocodone (in Hydrocet, in Vicodin, others), medications that make you feel dizzy or drowsy, morphine (Avinza, Kadian, MSIR, others), and naproxen (Aleve, Anaprox, Naprosyn, others). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.

if you are taking antacids such as Maalox or Mylanta, take them at least 2 hours before you take gabapentin tablets, capsules, or solution.

tell your doctor if you have or have ever had kidney disease. If you will be taking the extended-release tablets, also tell your doctor if you need to sleep during the day and stay awake at night.

tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while taking gabapentin, call your doctor.

if you are having surgery, including dental surgery, tell the doctor or dentist that you are taking gabapentin.

you should know that this medication may make you drowsy or dizzy, may slow your thinking, and may cause loss of coordination. Do not drive a car or operate machinery until you know how this medication affects you, and your doctor agrees that it is safe for you to begin these activities.


if you are giving gabapentin to your child, you should know that your child's behavior and mental abilities may change while he or she is taking gabapentin. Your child may have sudden changes in mood, become hostile or hyperactive, have difficulty concentrating or paying attention, or be drowsy or clumsy. Have your child avoid activities that could be dangerous, such as riding a bicycle, until you know how gabapentin affects him or her.


remember that alcohol can add to the drowsiness caused by this medication.

you should know that your mental health may change in unexpected ways and you may become suicidal (thinking about harming or killing yourself or planning or trying to do so) while you are taking gabapentin for the treatment of epilepsy, mental illness, or other conditions.

A small number of adults and children 5 years of age and older (about 1 in 500 people) who took anticonvulsants such as gabapentin to treat various conditions during clinical studies became suicidal during their treatment.

Some of these people developed suicidal thoughts and behavior as early as one week after they started taking the medication. There is a risk that you may experience changes in your mental health if you take an anticonvulsant medication such as gabapentin, but there may also be a risk that you will experience changes in your mental health if your condition is not treated.

You and your doctor will decide whether the risks of taking an anticonvulsant medication are greater than the risks of not taking the medication. You, your family, or your caregiver should call your doctor right away if you experience any of the following symptoms: panic attacks; agitation or restlessness; new or worsening irritability, anxiety, or depression; acting on dangerous impulses; difficulty falling or staying asleep; aggressive, angry, or violent behavior; mania (frenzied, abnormally excited mood); talking or thinking about wanting to hurt yourself or end your life; withdrawing from friends and family; preoccupation with death and dying; giving away prized possessions; or any other unusual changes in behavior or mood.

Be sure that your family or caregiver knows which symptoms may be serious so they can call the doctor if you are unable to seek treatment on your own.

....
...
Gabapentin may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

drowsiness

tiredness or weakness

dizziness

headache

uncontrollable shaking of a part of your body

double or blurred vision

unsteadiness

anxiety

memory problems

strange or unusual thoughts

unwanted eye movements

nausea

vomiting

heartburn

diarrhea

dry mouth

constipation

increased appetite

weight gain

swelling of the hands, feet, ankles, or lower legs

back or joint pain

fever

runny nose, sneezing, cough, sore throat, or flu-like symptoms

ear pain

red, itchy eyes (sometimes with swelling or discharge)

Some side effects may be serious. If you experience any of the following symptoms, call your doctor immediately:

rash

itching

swelling of the face, throat, tongue, lips, or eyes

ho****ness

difficulty swallowing or breathing

seizures

Gabapentin may cause other side effects. Call your doctor if you have any unusual problems while taking this medication.

If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration's (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/Safety/MedWatch] or by phone [1-800-332-1088].....

In case of overdose, call your local poison control center at 1-800-222-1222. If the victim has collapsed or is not breathing, call local emergency services at 911.
Symptoms of overdose may include the following:

double vision

slurred speech

drowsiness

diarrhea

What other information should I know?
Return to top

Keep all appointments with your doctor.

Before having any laboratory test, tell your doctor and the laboratory personnel that you are taking gabapentin.

If you use a dipstick to test your urine for protein, ask your doctor which product you should use while taking this medication.

Do not let anyone else take your medication. Ask your pharmacist any questions you have about refilling your prescription.

It is important for you to keep a written list of all of the prescription and nonprescription (over-the-counter) medicines you are taking, as well as any products such as vitamins, minerals, or other dietary supplements. You should bring this list with you each time you visit a doctor or if you are admitted to a hospital. It is also important information to carry with you in case of emergencies.
Brand names
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Horizant®

Neurontin®

Last Revised - 07/15/2011"

Elena

quote:
Originally posted by fadingout:
The information you posted is irrelevant keebler. We are not keeping people on acetaminophen for 14 years or overdosing it.

Morover the pain suggestions don't work.

Please stop interfering. You're not helping people.


 
Posted by fadingout (Member # 32511) on :
 
Yes it is irrelevant. People should not use scare tactics to scare others away from treatment by exaggerating risks.

If you read the above dose, we are not overdosing people so IT IS IRRELEVANT.

Is this a nurses hate being bossed around by doctors thing?

People need to rely on medical professionals to give them drug information not laypeople.

As a nurse you should know better.

http://en.wikipedia.org/wiki/Galileo_affair

http://en.wikipedia.org/wiki/The_Death_of_Socrates

[ 10-08-2013, 09:15 AM: Message edited by: fadingout ]
 
Posted by RC1 (Member # 31923) on :
 
Fading out,
Just want to say thank you for sharing. I don't care about someone having an abrasive communication style. I get it. [Smile] I hope you continue to share your finding with us.

I don't think someone needs to have a formal education to figure stuff out, MD's are trained to not think out of the box, just to memorize what they are taught period...and not to question it.
 
Posted by fadingout (Member # 32511) on :
 
>I don't think someone needs to have a formal education to figure stuff out, MD's are trained to not think out of the box, just to memorize what they are taught period...and not to question it.

Hello RC1,
I definitely agree with that. There is a huge economic and legal malpractice incentive for them to just follow treatment algorithms that just treat symptoms. I think it's only when they have a personal experience seeing how useless their care is do they convert and try to help fix the system.

So I'm an equal opportunity offender as far as criticism goes.

A lot of people don't have enough scientific and medical background to read research and have no business giving advice. You can't just read a news media article and think you're an expert. Half of the news is later found to be wrong.
 
Posted by Keebler (Member # 12673) on :
 
-
Please, everyone. Consider your time & energy output if you want to continue (but please do guard your personal email address). Troll alert. Direct connection to QuackWatch. Couldn't be very much closer.

As with any situation in life, it's important to know the credibility of the source & motives . . . then decide what is true and what is a ruse (considering having been taken to court with QuackWatch for defamation of medical professionals - just follow the trail).

Still, we can take what may be of value (and then verify with medical and LL experts) and leave the rest behind.

I stand on the fact that acetaminophen can ruin livers, ears, and lives. Please be careful.

Moderators have been alerted.
-
 
Posted by fadingout (Member # 32511) on :
 
Do you even have BLO or are you just a troll Keebler?
 
Posted by CD57 (Member # 11749) on :
 
My insurance covers most of my Enhansa, so I will use that. In some studies they were using 8 grams per day -- possibly for cancer? can't recall. But 2.5 grams is not so much when you consider that.

Fadingout, what is an appetite response? It would seem to be that this means you crave more of it?

Also, were you taking your 2.5 grams in little doses throughout the day, or just dividing it into 2, so BID?
 
Posted by c3mom (Member # 16412) on :
 
I don't see why ppl are having problems with fadingout. He has found something that is working for him, and he wants to share it. If his style is abrasive move on, no one is forcing you to read it. I came here years ago to find answers and I found them. Would it do any good to say you can do laser, rife and herbals. What works for me doesn't always work for someone else. And WHO in their right mind would start a protocol without researching the pros and cons? Just because someone posts a drug and given amounts doesn't mean you have to do it, exercise your free will....
 
Posted by fadingout (Member # 32511) on :
 
>My insurance covers most of my Enhansa, so I will use that. In some studies they were using 8 grams per day -- possibly for cancer? can't recall. But 2.5 grams is not so much when you consider that.

As long as you get an appetite response it may work. With me I used the long vida powder with set doses and after about two weeks I developed an appetite for it. Same for the green tea extract. It doesn't start right away.

Maybe you can get the company to give you absorption information and try to set an equivalent starting dose.

>Fadingout, what is an appetite response? It would seem to be that this means you crave more of it?

It's a specific physical craving for something (chocolate, tobacco, whatever) that gets sated when you eat it.

>Also, were you taking your 2.5 grams in little doses throughout the day, or just dividing it into 2, so BID?

Little doses. I think this allows the enzymes to progressively dissolve the fibrosis.

[ 10-08-2013, 04:16 PM: Message edited by: fadingout ]
 
Posted by Eight Legs Bad (Member # 13680) on :
 
Fading out, the fact that you are associated with Quackwatch is proof positive that you are here for one purpose only - to do HARM.

No genuine person trying to help the Lyme community would promote Quackwatch, which is a medical "Liars-for-Hire" service mainly funded by Big Pharma, but also used by the likes of McSweegan (who wrote its Lyme disinformation section).


You distorted everything I wrote and insulted longtime members here. You are here as part of an attempt to hurt one of our good doctors.
elena
 
Posted by fadingout (Member # 32511) on :
 
That makes no sense. Quackwatch doesn't believe in BLO. They would just say this is quackery because it's unproven. I've discussed this with them and we disagree on the issue. I found their position unfounded. Moreover, I'm a patient with BLO.

Which MD are you claiming I'm attacking? I already shared my personal MD in messaging.
 
Posted by Keebler (Member # 12673) on :
 
-
You may or may not have BLO but you are at the top of the QuackWatch crew, founder & their ChiroBase twin.

You posted your name in past post here, asking for personal email from LymeNet posters. That name led to some interesting links from
Google.

Just one one those:

http://chirotalk.proboards.com/thread/5664

[your name]- Founder of Chirotalk: The Skeptical Chiropractic Discussion Forum


This site is "twin" and part of the operation of QuackWatch, having been linked as one with legal action against the entity for defamation of others' characters (as explained by comments from readers further down in link above). Legal action is easily found by Google with a cross search.
-
 
Posted by surprise (Member # 34987) on :
 
I tell you what. This whole Lyme disease cover up and evil that runs through between deniers,

allowing human beings and CHILDREN to suffer,
it's too much for me.

fadingout, I hope for the sake of humanity and anything that's decent in the world you are not lying.
 
Posted by fadingout (Member # 32511) on :
 
Irrelevant. If anyone (except trolls) wants to discuss treating BLO I'm all ears.

I'm ignoring you Keebler. You're paranoid.

Quackwatch already did an article stating that lyme is a fake disease. They're not trying to hunt MDs down by trolling forums. They would just pose as patients and call offices.

However there are too many MDs to do that so it isn't going to happen unless someone does something outrageously stupid like commit insurance fraud or hurts a patient. Then they would be made an example of.
 
Posted by Keebler (Member # 12673) on :
 
-
But this is at least the third site where you ask for posters' email addresses, directly.

I was not intending to post detail below (figuring a search of your posting history here at LN, and the Google cross search function would bring that to light for those interested) -- but since you asked which doctor you attacked, here is just a sampling, along with your colleagues:

[Same address for both ChiroBase and QuackWatch. One and the same entity.]

http://www.humanticsfoundation.com/harrison-vs-quackwatch-complaint.pdf

Defamation lawsuit

--------
http://chirotalk.proboards.com/thread/5664#ixzz2hL2GYPQZ

dcphd writes: "You outright harass and ridicule chiropractic leaders, chiropractors, the profession etc. ones who passed away, also make posts in which family has encouraged you to remove... yet you now you want sympathy and donations? I don't get it. . . .I am sorry to say." (end excerpt)


So, since you asked which doctor "are you claiming I'm attacking? " (end quote)

apparently, it's a pattern. And the poster here wonders how a person such as that can be trusted. It's a good question.

That you are asking for posters (in above thread) there to be generous with their personal contributions to you does make one wonder, too, why you have frequently asked posters here at LN, and at MDJunction, to send you their personal email addresses.

But the QuackWatch connection (and their/your anti tick-borne infection stance) makes those requests even more curious.

What really caught my attention, though, [aside from the abusive comments you posted about some folks here - several caustic remarks that moderators deleted]

are suggestions you make for folks here to take what many consider to be potentially dangerous levels of acetaminophen, suggesting it's nearly required and there is no other way.

Although you are from QuackWatch, you may (or may not?) have BLO.

What makes me wonder is that, considering your "former career" in the health field & all the information now available about the risks of acetaminophen (at the doses you say are necessary), it's a dangerous suggestion that can cause permanent damage and it puts people in harm's way. Why would someone do that? (is the rhetorical question).
-

[ 10-10-2013, 03:27 PM: Message edited by: Keebler ]
 
Posted by fadingout (Member # 32511) on :
 
Keebler you don't even have BLO. Why are you talking? Leave.
 
Posted by Keebler (Member # 12673) on :
 
-
I don't know how you come to that misconception.

I never wrote that I do (or don't) have BLO. Whether I do (or don't) is not the issue.
-
 
Posted by fadingout (Member # 32511) on :
 
Yes it is. You're obviously offended that I called you out for being an alarmist and giving bad drug advice when you are unqualified to do so. Now you are making the false accusation that I'm not being honest about this BLO treatment and you are engaging in irrelevant personal attacks to try to distract. This thread is about BLO treatment. You have nothing to contribute so find some other place to be.
 
Posted by lymeboy (Member # 24769) on :
 
"This thread is about BLO treatment."

No it sure doesn't look that way. Fadingout, everyone here has good reason to be suspicious of you and your associations. Plus, you're being quite rude.
 
Posted by Lymetoo (Member # 743) on :
 
Problem solved.
 


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