Biofilm Protocol

[LNN]

It seems the cosmic forces doesn't want me to get cocky about finally helping DS9 get to a good place. DD7 has been slipping since OCT when she contracted EBV and now she is at her annual peak of symptoms (every January for the past 3 yrs have been horrid). Motrin helps, inositol helps a little but not as much as it used to.

 

We have looked under the same rocks that were hiding clues for DS but these don't seem to be her ticket to good health. I keep coming back to biofilms, but in the past, she was making gains or holding steady and I didn't want to rock the boat. LLMD wanted to pursue other avenues. But it keeps coming back to me and since other things haven't panned out, I want to look at it more seriously. Her food intake is way down - not OCD, not GERD, just says she isnt' hungry.

 

Does anyone have any biofilm experience to share?

[lismom]

It seems the cosmic forces doesn't want me to get cocky about finally helping DS9 get to a good place. DD7 has been slipping since OCT when she contracted EBV and now she is at her annual peak of symptoms (every January for the past 3 yrs have been horrid). Motrin helps, inositol helps a little but not as much as it used to.

 

We have looked under the same rocks that were hiding clues for DS but these don't seem to be her ticket to good health. I keep coming back to biofilms, but in the past, she was making gains or holding steady and I didn't want to rock the boat. LLMD wanted to pursue other avenues. But it keeps coming back to me and since other things haven't panned out, I want to look at it more seriously. Her food intake is way down - not OCD, not GERD, just says she isnt' hungry.

 

Does anyone have any biofilm experience to share?

Edited January 19, 2012 by lismom

[sf_mom]

This is an important topic and one I've been communicating off forum with others so I thought I'd share what I know.

 

A good way to discover how impacted you are by biofilms is to do the Fry Labs Blood Smear for Bartonella and Protozoa. I am sorry but I forget how expensive the test was and if its covered by insurance. Their results will tell you if you have few or substantial number of biofilms. You will see an image of a biofilm or bofilms if present. I have seen several results and some are highly impacted while others have very few. I do not know if their presence is indicated on level of severity of illness but those that have been very sick have had a high number of biofilms. Dr Fry confirms this in article attached. I think running the test it would at least provide a baseline of biofilm communities for your child.

 

The test is now also looking at a bacteria called Protozoa which is Babesia like in nature and loves to form biofilms and is indicated along with many other auto-immune illnesses but specifically sighted is Lupus/MS. Again, biofilm's could harboring many infections inclusive of mycoplasma and strep. In the article, Dr. Fry sights why he recommends against supplementing with magnesium. His thoughts are similar to Dr. Klinghardt's and his reasoning regarding magnesium. We have two LLMD, one following Klinghardt protocol's more closely than the other and are split on the need to supplement. We have suspended supplementing to error on the 'I DON'T KNOW' for sure if its helping or hurting as we treat for biofilms.

 

http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/3337189-drfrye-interview-bug-protozoal-infection-112011

 

We have also been treating biofilm's since last January for older DS. We did not originally do the Fry Labs Blood Smear for this child but hope to in the near future to confirm if its still an issue. We have done several different protocol's to treat biofilms.... first was an EDTA blend 'an enzyme supplement' from Klaire Labs called Interfase Plus. I do not remember exactly the rotation of detox at the time of treating but would anticipate a lot to be released inclusive of heavy metals when treating. We also witnessed a huge herx... with dark circles returning, a withdrawn pale look and on-set of coughing TIC lasting at least six months. I was happy to stop after six months of treatment. We took about a month break and started with Boluoke and drops of BioSil (5 drops x 2 daily) to help deteriorate the films further. We are also using Lauricidin to help deteriorate but can not get my younger twins to take product. Currently for detox we are using bentonite and chlorella... but have rotated others occasionally for specific organs.

 

Treating was not a fun process but necessary 'I believe'. Good luck.

 

Edit: I think PEX would help tremendously with the number of biofilms but that is just a mother theorizing.

Edited January 19, 2012 by SF Mom

[LNN]

Thank you both for the replies. I don't recall what the cost of the Fry test is, but I remember that my eyes bulged and our LLMD knew it wasn't an option for us. Insurance does not cover. I have moved DDs appt up - will see the doc in two weeks. This just sucks.

[Suzan]

LLM, wanted to say I am sorry about what you are going through with DD7! You have been so supportive to me and my family. I hope you find what she needs. What I've learned is everyone is different and no one thing works for each person. It sure makes things complicated. HUGS!

[sf_mom]

It does suck. Treatment is expensive, period. I would assume biofilm's are there........ and just treat. Don't even worry about a baseline for biofilms and maybe consider testing later when you are close to rotating down and off antibiotics. Expect an increase in symptoms. Keep up with everything you know is working and rotate the detox and lots of it. As you know, it all matters and if I could single out just one theory/treatment that has worked I'd share. It all matters, unfortunately.

 

From both the experiences posted, these kids do get better..... they do get better and maintain progress. I would also recommend rotating biofilm treatments to ensure the best possible outcome long term.

 

-Wendy

[Suzan]

We are also using Lauricidin to help deteriorate but can not get my younger twins to take product.

 

Hey, dd10 and I are both taking Lauricidin. You are saying it will help deteriorate biofilm? Doc just cut dd10 back from 3x to 2x a day due to some of her symptoms (bad stomach upset). I think we are on it for it's antiviral/bacterial and antiyeast.

 

Susan

[LNN]

Suzan, Thanks! I always hesitate to wear my heart on my sleeve but am always amazed at the support I receive when I do.

 

Wendy - Thanks very much for the article - Fascinating! Gives me much to think about. He mentions demylination and I wonder what ATP support would do (tho Fry is obviously anti-supplements).

 

A low fat diet isn't in a 7 yr old picky eater's horizon, but I may reconsider the magnesium. I hate to give it up tho, because constipation has always been a chronic problem for her and the mag has made her very regular, way more effective than psyllium or fiber and much easier to get into her. Always things to consider.

[LNN]

How the heck does ANYONE get Lauriciden into their bodies??? Bought one jar of it 3 yrs ago and tossed the whole thing. DS said no way and even I couldn't force myself to try it.

 

Yes, I know it all matters. I am especially intrigued that DD had a bad response to NAC a few months ago and I've wondered since if it was because of NAC's mucus thinning properties. It's just sooo hard to try something and go thru the pain of wondering if the response is a herx or just a plain old bad response. DD has a je ne sais quoi component to her meltdowns that DS never had - akin to nails on a chalk board. Sometimes she sounds like she is in utter emotional anguish. I absolutely dread - did I say dread - riding something out. I agree - assume films and treat. I would love to have the assurance that we are on solid ground thru testing, but I can unfortunately only afford to test or treat, not both. Well, I have two weeks to wrap my head around this and prepare hubby...

[sf_mom]

As for Lauriciden.... we put a little in juice and he just swallows 'like a shot'. Twins are just too young and hoping sometime in the future we'll get them to take it. Try coconut water as a replacement. We are dairy free so instead of juice or water.... We give 'Kid's One' which is coconut water with a little juice and available at Whole Foods.

 

I have to go back and reread article with regards to demylination.... We are using Multi Immune Transfer Factor and ATP Fuel as supplements which supports ATP.

 

Constipation has been an issue for younger DS as well. We had it horribly prior to Lyme treatment and now its cropping up again. It happens to coincide with treating for KPU and fungal infection. We stopped Core for now and are seeing improvement with fungal infection. Something about the heavy metal release I suspect. Anyway, I think you are already adding fiber daily. Perhaps try some olive oil daily for constipation if you take away magnesium. I think the constipation is a clue... to what I am not sure.

 

As for the Fry Labs.. all have had some type of biofilms again it is a question of how severe are they. I think you can treat if response is horrible.... maybe give breaks, pulse or revisit a little later but strongly feel it needs to be 'part' of treatment at some point.

 

Edit: We are considering with LLMD on breaking out some of the supplements for CORE and treating with them individual. We are not there yet but will update if/when we use alternative.

 

-Wendy

Edited January 19, 2012 by SF Mom

[SSS]

Hi there, good stuff here.

I recently bought some Bolouke (and am coming to grips that I have a supplement buying addiction)

but, in some recent alternative testing for dd and I, we both came up indicating biofilms

(not surprising)

Haven't talked to our Dr. about it yet, we are on a different protocol path right now for the next 5 weeks.

 

Looks like to me/assuming the Bolouke is taken on an empty stomach, and followed a short time later with the 'killers'.

 

As far as magnesium, there seems to be a debate/slight controversy about this.

We both call a need for it, so dd and I both supplement it.

 

I have Lauriciden here (ask me what I don't have here) I had been taking it, a scoop tossed in my mouth followed by water, and noticed absolutely nothing from it,

and I can usually pinpoint. For example, I recently added OoO (Oil of Oregano) and I can totally tell that is doing something.

I haven't attempted getting dd to try the Lauriciden, maybe because of my non- reaction to it, but it looks like I'd have a task getting the pellets down with her-

She is great with capsules, and I manage the herbal tinctures w/her, too, but can't push my luck.

 

I agreed w/Lismom's post about treating PANDAS before hand with long term rather high dose Azith. only moving Lyme et al into cyst form-

boy howdy, when we tried Tinamax, yikes.

Have done GSE in the past w/her too, to treat yeast, that also produced large die off.

 

Fun, fun, fun.

[JuliaFaith]

First, thank you for all you contribute on this forum. Your posts are very helpful and informative.

 

On the biofilm side, my son as been drinking 'rock rose tea - Cistus Incanus' tea 2-4 cups per day for over a year. It leaves a dry feeling in your mouth but the flavor is not bad. My son has taken it with honey, lemon juice, clay (yes, he says it makes it taste even better). It seems Michael on this forum also has really liked this tea. Hard to tell what affect it has had on son, but he is still testing positive for continuing its' use. Buy it from BioPure for ~$35 for a good size bag (250 grams) of it.

 

Best wishes on continued healing!

[MichaelTampa]

I had a great 3 months of biofilm treatment with serrapeptase, cistus incanus tea, and Detoxamin suppositories. I think the combination was excellent.

 

Later on I heard Dr. Fry speak about his protozoa and the extremely low fat diet he recommends of 10-15 calories of fat helping a lot as it also exposes the bugs to antibodies from the biofilm. Now, I misheard it as 10-15 percent of calories from fat, so I did about 20-25 grams of fat a day. I had an enormous herx (beyond any other herxlike symptoms for any other treatment, all other ones have been very mild compared to this). I actually had to back of for a couple days and then went at it again. While I think he may recommend people keep at it indefinitely, as his patients apparently relapse when going back to regular diet, I would not recommend that type of diet long-term. I did it 6 weeks and I think 6-8 weeks is plenty before you will have deprived yourself of fats which are necessary in many ways. I started experiencing much dryer skin, and that quickly rebounded when I went back on my regular diet, and that was the only "bad" that I noticed with too little fat, but doesn't mean there weren't other important bad things going on that would have developed into more if I had kept at it.