Help With Biofilms?

[demeter]

My ds just tested positive for strep on Friday. We almost didn't test the family on our weekly visit to our incredible Panda's savvy pediatrician. And to everyone's shock my ds was positive, yet again! He had no physical signs...but all the Panda's crap. Mostly OCD, rituals, and fear. Get a load of this...ds, myself, and my Pandas dd all just had strep June 1st! He has been exhibiting Pandas behaviors since March 2011. We first discovered Pandas, and started treating with antibiotics July 2011. He is currently on Augmentin (for 6 months) and Biaxin( for one year). He also is very ibuprofen dependant. Had a T&A in February, as well. We just can't seem to shake it. Someone has tested positive in our household almost 1/month since December. Yes, we are all MTHFR mutants,and have been taking methly B12 injections, and Thorne's Methylguard plus. Also, take fish oil, Vitamin D, Curcumin, and lots of probiotics. So, now we are heading down the biofilm path...whatever, the heck that means. LLM if you are reading this, thanks for posting articles and information, I am starting to reread your posts. At this point our only attack has been to add Lumbrokinase, 1/2 hour before antibiotics on an empty stomach. We did that once before this last positive strep test...so, don't know if it will be effective for us. If anyone has experience with attacking Biofilms it would be great to hear what was used, and what happened.

[MomWithOCDSon]

Hi Demeter --

 

I do think that LLM is far better versed in biofilms and MTHFR than I am, but I will offer that n-acetylceisteine (NAC) is also used as a "biofilm-buster," and we've been successfully using it for a couple of years now. We initially began using it with DS based on some NIMH trials for it as a tool in combatting OCD (based on its glutamate-modulating properties).

 

However, like your DS, ours was asymptomatic for strep ALWAYS . . . never had a positive standard strep test, sore throat, etc. . . . and we only found the strep link through the ASO and antidnase-b blood testing, in which his titers were revealed to be exceptionally high. Even after some 9 months of abx, the titers were still way up there.

 

Anyway, finally, after 2 years of abx and NAC, we've had DS off abx since December 2011 and, knock on wood, he's been doing well. One theory we have is that the NAC helped bust the strep languishing in DS's sinuses and possibly gut, too, so that the abx could finally get at it. Some kids have a negative reaction to NAC, though, so that's something to keep an eye out for if you should decide to try it.

 

Hang in there!

[LNN]

I don't have any experience with the Lumbrokinase or related enzymes. I think MichaelTampa and some other lyme forum members do - so you might want to post there. You can also look into other things that are mucus thinners - NAC and even Mucinex can weaken a film and help abx get at more of the hiding bacteria. I'm not sure but I suspect you'd need to be on a film thinner, as well as abx, for a long period of time

 

In case you don't come across in it your searching - here's the best article I've ever read on films - very long but very informative:

http://bacteriality.com/2008/05/26/biofilm/ It might have more meaning now that your on this path.

 

The other thing people sometimes do is to pulse abx rather than dose steadily every day. So you might go on one or more abx for 3 weeks, then go off for 3 weeks. This tricks the bacteria that might be hiding in a cyst or biofilm into thinking the coast is clear when there's no abx in the outer environment. So they emerge from hiding. Then you ambush them with a 3 week pulse of abx. The tough part with this strategy is that you're off abx for 3 weeks - a tough tightrope walk without a net for our Pans kids. But my LLMD says it works really well (tho the first 1-2 cycles can be really rough with die off/herxing).

 

Today, my DS marks his 2nd week off all abx. If he starts to slip in the coming weeks, we'll likely pursue a pulsing strategy and/or a film strategy. It gets hard to figure out after awhile. I hope your family catches a break!

[Missmom]

I don't have any experience with the Lumbrokinase or related enzymes. I think MichaelTampa and some other lyme forum members do - so you might want to post there. You can also look into other things that are mucus thinners - NAC and even Mucinex can weaken a film and help abx get at more of the hiding bacteria. I'm not sure but I suspect you'd need to be on a film thinner, as well as abx, for a long period of time

 

In case you don't come across in it your searching - here's the best article I've ever read on films - very long but very informative:

http://bacteriality.com/2008/05/26/biofilm/ It might have more meaning now that your on this path.

 

The other thing people sometimes do is to pulse abx rather than dose steadily every day. So you might go on one or more abx for 3 weeks, then go off for 3 weeks. This tricks the bacteria that might be hiding in a cyst or biofilm into thinking the coast is clear when there's no abx in the outer environment. So they emerge from hiding. Then you ambush them with a 3 week pulse of abx. The tough part with this strategy is that you're off abx for 3 weeks - a tough tightrope walk without a net for our Pans kids. But my LLMD says it works really well (tho the first 1-2 cycles can be really rough with die off/herxing).

 

Today, my DS marks his 2nd week off all abx. If he starts to slip in the coming weeks, we'll likely pursue a pulsing strategy and/or a film strategy. It gets hard to figure out after awhile. I hope your family catches a break!

 

Others can correct me if I am wrong but I think I remember reading that some have used mucinex with some success.

[demeter]

Thanks so much for your information. I knew about NAC but had forgotten about it's use with biofilms! I remember it as a precursor for gluthione What dosage do you start at, and do you up the quantity over time? Any particular brand you are favoring? What bad reaction to NAC would I be looking for...herxing? Both of my kids are PANS and my ds is 55lbs and dd is 70 pounds. LLM that article is great and I have passed it on to my pediatrician as well, thanks again. Is your plan to pulse your ds or are you trying to just remove the antibiotics at this time? Is the pulsing your film strategy...or is there another strategy? I'm so glad to hear you are both able to get off antibiotics at this time. Yes, I am hanging in there and doing so much better finally. We are far away from being out of the woods...but so much better than we were in January. So, if there is a silver lining, it is that his baseline with strep moved way up...and his rebound time is much quicker. I hear him outside playing with a friend right now, and just three days ago he couldn't walk around without holding on to someone in his own house!

[LNN]

We don't use NAC, so I can't advise on dosing. My DD has had negative reactions both times we've tried it (depression, increased anxiety). So we use the alpha lipoic acid as a glutathione precursor (500mg 1x/day). I don't know if her reaction to NAC was a herx - it's possible she has some sort of biofilm issue but she has months of goodness so it doesn't suggest the sort of lifecycle flairs you'd see if films were the problem. I suspect her negative reaction was due to some sort of methylation problem (as I understand it, a negative NAC reaction isn't that unusual for those with certain methylation genetics).

 

My DS is on an abx holiday as part of his lyme treatment. He was almost 3 months symptom-free, so one common lyme protocol is to stop abx and see how you do. If you stay good, you're done. if you relapse, you consider the possibility that lyme is still there, hiding from the abx. So we've talked about pulsing if symptoms creep back (and they seem to be creeping back now - which isn't a surprise - we see LLMD next week). The pulsing would be part of our treatment plan but not necessarily part of a film plan. If we go back on lyme treatment (which I'm assuming we'll have to do), I don't know if we'll just do pulsing or if we'll also do some sort of film protocol. His risk of Pandas makes me feel like we can only do pulsing and be off abx during the summer/early fall. I don't want him off abx in the winter - he loses too much if he gets strep. And I can't keep asking him, year after year, to keep up with his peers with one arm tied behind his back. So if we do pulsing, I'll push for a different strategy during the winter months.

 

So glad to hear about your progress!! Sounds like the tide is turning!

[MomWithOCDSon]

We arrived at our dosing for NAC via the NIMH trial doses for using it in combatting OCD. There was a pediatric and adult trial, and the following link gives the full pediatric information, including dosage.

 

NAC for Pediatric OCD Trial

 

Based on our experience, I would suggest starting "low and slow" and slowly titering up to the full NIMH dosage, however; like so many supplements, NAC can cause some gastro-intestinal distress if dosed too heavy, too quickly.

 

We use the generic, Vitamin Shoppe brand of NAC . . . seems to work just fine, and very affordable. One footnote I'd offer is that there are some forms of NAC on the shelves that advertise themselves as "time-released" formulae. We tried one of those for a period, thinking it might be more beneficial, but we had just the opposite experience. DS's behavior declined noticeably within a week of using that particular formulation, and as we hadn't adjusted any other meds or supplements, we assumed it was the time-released NAC at work (or not!). So we went back to the good old regular generic stuff!

[sf_mom]

We've treated biofilms for almost two years with our older DS. You can actually test for them via Fry Labs. It is about $380 for the test if I am remembering correctly. We did discover our older son had a "substantial" biofilm problem even after treating biofilms for one year. The Fry Lab test is not peer reviewed and you will find both positive and negative comments regarding the test on the internet. We ran the test as a precaution when we were considering stopping antibiotic therapies with this particular child. We were shocked by the results. Here is the information on the test.

 

http://www.frylabs.com/biofilm.php

 

When treating biofilm's they could 'house' almost any bacteria, virus, heavy metal, etc and a combination of stuff. If there is a continued regression (slow steady increase in symptoms over a couple months) I would be concerned that the antibiotics coverage is not correct for what is 'housed' in the biofilms. We did see the resurgence of specific symptoms when treating or rotating biofilm treatments: specifically a cough that hung in there for at least six months. We have used the following for biofilm treatments that were rotated. He is currently boluoke, surfactant and tindamax 'pulsed'.

 

Boluoke Lumbrokinase: Which acts like a blood thinner: https://www.ResearchedNutritionals.com/store/item.cfm?code=CBD260&cat=43

 

Interfase by Klair labs: Which disrupts biofilm matrix: http://www.klaire.com/enzymes_cat.htm

 

Surfactant: Which penetrates biofilm with antibiotics

 

Samento/Banderal combined are also good herbal remedies: http://www.tickbytesonline.com/what-now-martyrossmd/

 

Tindamax or Tindazole: "Her more recent study of 5 different antibiotics shows that prescription tinidazole decreases the size of biofilm communities and eliminates the germs living in them by over 90 percent".... from same article linked above.

 

It is important to use some type of detoxing agent that will absorb potential heavy metal and toxin release when treating: Bentonite clay, charcoal pills or chlorella. You should also watch for yeast (white tongue) or fungus (black or dark tongue) when treated either they are house in biofilm or byproduct of heavy metals being released.

 

I've also included Better Health Guys takeaways for a Physician Round Table Conference in 2012. If you scroll down you'll see a lot of comments from Steven Fry M.D. on biofilms.

 

http://www.betterhealthguy.com/joomla/blog/264-physicians-round-table-2012

 

Probably more than you were expecting but we've been at this particular aspect of treatment for a long time.

[sf_mom]

I forgot to mention with the repeated strep in household it is very likely there is possibly biofilm in one of the household members nasal passage. You can culture the nasal passage unfortunately I do not know name of lab off the top of my head. A friend of mine who was having a difficult time eradicating strep did the nasal swab on her son and he had 5 bacterias that included strep and staph with only mild symptoms that seemed like allergies to her. He was also on antibiotic therapy during this period. The biofilm was preventing resolution. They are now using BEG spray along with targeted antibiotics to eradicate.

 

XClear is also really great for nasal strep and can be purchased easily at WholeFoods or Pharmica, etc.

[demeter]

Thank you all for you helpful information! It is not more than I was asking at all, I so appreciate the sharing of knowledge and experiences! Unfortunately, I haven't had time to read all the new information yet, but am looking forward to doing so. In fact, I'd would much rather be doing that than packing to move! Are biofilms more common with Lyme, or are they also as common with Strep and Myco which my ds has tested positive? Is the treatment you explained, SF Mom, for Lyme specifically... or does it blast all biofilms? Just wondering since strep seems to be the worst of our "known" enemies would Tindamax be appropriate for my ds? Also, what is BEG and is it also over the counter or is it a prescription? Same with surfactant...something I pick up at supplement store or prescription? I'm asking this as we see our Dr on Wednesday. I have NAC sitting in my cupboard, also. I have learned my lesson early on the Pandas journey to not ambush him with everything at once...even when I want to!!! I'll read, think, discuss than figure out game plan...I'll keep you posted. Are you thinking you are making gains on the biofilms? Thanks so much again to everyone for taking the time to post!

[sf_mom]

In answer to your questions:

 

Biofilms are not exclusive to Lyme. I am not sure if it is more common with Lyme.... maybe the Lyme and ASD communities are more aware of biofilms? Yes, the treatments I outlined treat biofilms that could include many infections and viruses. I agree, I wouldn't overwhelm your Dr. especially if he/she is not versed in treating biofilms. I'd start with the basics and request nasal swabs for everyone in the family. Our LLMD 'Lyme Literate Medical Dr.' has test kits readily available to take home and swab family members and mail off to a lab while results are returned to our Dr. The nasal swab/test looks for many bacteria and viruses (not sure on viral aspect our Dr.'s test). The greater the number of bacteria the greater the possibility of biofilms in the nose and continued infections that get past back and forth in the family. Again, my friends son had 5 bacteria inclusive of strep and staph even while on antibiotics. He too really didn't have any obvious symptoms... just some allergy like symptoms. BEG Spray is a prescription nasal spray and only available through Hopkinton Drug, Inc. XClear is over the counter and is particularly good for strep in nose but not sure how good it is for biofilms. Surfactant is not readily available and should only be used under the guidance of Dr. experienced in treating biofilms. If you emphasize a nasal swab with your Dr. make sure the test looks for a broad range of bacterias.

 

Our older son was treated 1 year for PANDAS before we discovered Lyme et al. He no longer suffers from any PANS like symptoms and maintains a high level of recovery. He is not off antibiotics or anti-virals while we continue to treat biofilms and attempt to lower viral load. His sudden on-set was 3 years ago.

 

If you are truly interested in pursuing biofilms I would try to find a Dr. experienced in treating them. Dr.'s that typically have an understanding are DAN's or integrative LLMDs, etc.

Edited July 17, 2012 by SF Mom

[JuliaFaith]

Have you read about cistus incantus (rock rose) tea? This worked great for my son and another on the lyme forum. Son was on it for several months. Was just taken off if it. I believe BioPure carries it. Had to drink 2 cups a day.

 

Best wishes on healing.

Edited July 19, 2012 by JuliaFaith