sf_mom

S & S thanks for the reminder of full moon. All of our kids were super crabby yesterday and seem in great moods this morning... like they went through an intense herx. -Wendy

Rowingmom: Seems like you've got a good LLMD if you've been treating for biofilms since day one with what you've outlined. I think surfactant has been used more readily in the autism world for biofilms than the Lyme world. I've seen very little on-line about its use for biofilms. I would only step up to something like surfactant if biofilms continue to be a problem. I think I spoke to soon on the tindamax for DD. We are day 11 and she is falling apart, screaming about everything today. We only have another 19 days to go. We will see if we make it through the horrible herx. I'm with Philamom... just wait until Sunday and don't be surprised by anything when it comes to cyst busting. However, my older son who did 20 weeks of daily tindamax did fine.

I like the thought of instant relief with no regression too!!!!!!!!!!! I think some of this stuff.... cyst busting, biofilm treatment can wait until the active infections have been dealt with and load is way down. BUT, as you know, it does need to be 'eventually' addressed. I was paralyzed by the thought of starting my younger DD on daily tindamax and she is surprisingly doing overall much better even though she has had some very intense moments of frustration that thankfully are short lived. You may remember, she has suffered from fairly severe Livedo Reticularis over her entire body and up to her cheeks... I also picture this symptom to be a by product of 'thick blood' and the medium blood veins swell as a result (I have no idea if this perspective is correct or not). The tindamax seems to be helping with the rash. In June, we will rotate from tindamax to biofilm treatment and eventually back to daily tindamax in July and I am keeping my fingers/toes crossed that her response isn't too bad. I am getting microbe war weary and don't enjoy any regressions either. It truly a balancing act of treatment.

Yes, we've been using Bolouke along with biosil drops (other enzymes previously of Interfase Plus - Klaire Labs) for 1 1/2 years now.... to help thin blood and to treat biofilm's. I also question if hypercoagulation isn't just biofilm's in the blood. As we were preparing to take older DS down and off antibiotics we ran a bunch of lab work back in Feb. One of the test we ran was the Fry Lab Biofilm Test. We found after a 1.3 years of treating biofilm's our older DS still had 'substantial' biofilms in his blood. We have now added surfactant to bolouke protocol. We are definitely seeing an increase in symptoms along with treatment. It was very frustrating to feel like we were nearing the end of treatment only to discover this information but I am relieved to be treating more aggressively and getting at some of these very stubborn infections. As we've all learned biofilm's can harbor almost any infection/virus so busting them up or getting at infection inside is critical to long term successful treatment. Our son's bacterial load is definitely way down and most days he seems like a perfectly normal child to the outside world. Even with aggressive treatment of daily tindamax (20 weeks - recently stopped) and biofilm treatment closing the gap towards consistent full recovery has been an extremely slow and arduous process. I believe the need to treat biofilms more aggressively has set us back at least by a year in our treatment plan. I encourage everyone to explore treating biofilm's with their LLMDs. Currently, with the combination of lab work and ART testing our older DS appears to still be dealing with Lyme, Mycoplasma, Babesia (One LLMD feels its gone, One LLMD feels its hanging on by a thread), HHV6 and Coxsackies. Philamon: If you should move forward with Bolouke keep in mind it treats biofilms and therefore could be an unleashing of infections. Unfortunately, its a double edged sward.... treatment can mean more symptoms. Off forum there have been some huge regression when kids have started tindamax daily (also treats biofilms) and biofilm protocols. Wishing you all the best as you move forward. Would love to hear if you come up with any other 'blood thinning' remedies other than the ones already listed. Edit: There are plenty of comments online about the Fry Lab Tests... some questioning the lack of peer review studies on tests. In light of results we choose to error on side of caution and treat biofilms more aggressively. Regardless of "testing" I still believe biofilms are an issue for many of our children.

Absolutely... A friend would actually take on flu like symptoms plus Laryngitis along with sore throat. It happened at least 3 times for her when starting a specific antibiotic. She initially felt she was allergic to antibiotic and why they stopped and started it so many times but it turned out it was just an intense herx response. Now that her bacterial load is down the antibiotic no longer presents a problem and she takes it daily.

We also have/had Mycoplasma circulating in our household and use combo'd antibiotics along with herbal remedies to kick the infection. Our children have used Azithro, Noni and A-Myco along with XClear nasal spray. I used Azithro, Doxy, Noni, A-Myco and Beg Spray. You might consider using the herbs on top of antibiotics to see if progress can be made. Noni (15 drops x 2 day) and A-Myco (10 drops x 2 day). The herbs can be extremely strong and a herx response should be anticipated. We typically work up with one drop per day until tolerated. If it becomes too much we maintain current level of drops until symptoms settle. Her persistent mycoplamsa infection might also mean there is more at play making it difficult for her fully eradicate this particular infection... things that come to mind is the usual list: viruses, KPU, detox/methylation, other chronic infections.

Tpotter: You might look into Avipaxin for your DS's palpitations and tachycardia that might be related to vagus nerve damage. Here are some blurbs on Avipaxin https://www.neurorelief.com/uploads/content_files/Avipaxin%20and%20Modulation%20of%20the%20Immune%20System.pdf https://www.neurorelief.com/index.php?p=cms&cid=202&pid=

Are you being seen by an integrative LLMD? How intense is your antibiotic regimen? Some things that you might consider testing for that could be adding to the intensity of herx response. 1. Heavy metals 2. Inability Detox - Methylation 3. KPU You might also consider taking some natural anti-inflammatory supplements or something like Avipaxin which helps to lower the cytokine response. Here are some blurbs on Avipaxin https://www.neurorelief.com/uploads/content_files/Avipaxin%20and%20Modulation%20of%20the%20Immune%20System.pdf https://www.neurorelief.com/index.php?p=cms&cid=202&pid= Helping the body to detox more effectively will also help with herx symptoms. 1. Binders such as: Charcoal Pills, Bentonite Clay, Cholestyramine 2. Epsom salt baths/Saunas/Sweating 3. Supplements/Vitamines that assist the body to detox via methylation pathways. I've been drinking the following detox drink that I crave and is anti-inflammatory as well. 1. 1 oz. Aloe Vera Juice 2. 18 drops of Chorophyll - benefits of Chorophyll http://www.energiseforlife.com/wordpress/2009/02/11/health-benefits-of-liquid-chlorophyll/ 3. 1 tsp (to start and build to table spoon) Vitamineral Green http://www.healthforce.com/shop?page=shop.product_details&flypage=garden_flypage.tpl&product_id=6&category_id=1 4. Juice of one lemon 5. Water You can always consider backing down, pulsing protocol or switching temporarily to herbals while you bring your load down. Talking to your Dr. is best.... you got to have a treatment plan that is survivable.

Our older son who had a PANDAS on-set but was later diagnosed with multiple chronic infections had frequent urination as a symptom. I too had frequent urination, urinary urgency/pain with very little release. Prior to my current diagnoses also of multiple chronic infections, I had lab results showing I was dumping excess RBC and WBC into my urine which points to the possibility of cancer or chronic infection. I was frequently treated for bladder infections but often negative when tested. Symptoms would temporarily resolve when treated with antibiotics. The frequent urination even cropped up as a symptom when we were rotating antibiotics and die-off was occurring (Herx Response). Thankfully the symptom for both my son and myself have resolved completely. Here is a little blurb on the vagus nerve and how when its damaged can cause frequent urination and many other symptoms. I have always found the comments to be interesting as one of my son's remaining symptoms is muscle/nerve damage to his soft pallet which is control by the vagus nerve as well. The vagus nerve (also called the tenth cranial nerve) is the longest cranial nerve and one of the most complex nerves in the human body. It originates in the medulla oblongara (part of the brain stem) and travels to the pharynx (throat), larynx (voice box), trachea (windpipe), lungs, heart, esophagus, and intestinal tract to the transverse portion of the colon. Disease that cause neuropathy, like Lyme disease and diabetes, can damage the vagus nerve. The vagus nerve activates muscles in your throat, which are vital to a healthy gag reflex, coughing, vomiting, swallowing, and the ability to speak. It also acts like a brake on the heart, slowing down the heart rate. Impairment may result in heart palpitations or tachycardia (fast heart rate). Depth and frequency of breathing as well as blood pressure are also regulated through the vagus nerve. The abdominal branches regulate the stomach, pancreas, small intestine, large intestine, and colon. The vagus nerve also affects the kidneys and gallbladder and stimulates liver functions. Once treatment has begun with antibiotics, most patients with vagus nerve involvement report an improvement in symptoms. Common Symptoms Caused by Vagus Nerve Impairment in Lyme Disease. Hoarseness Slurred speech Vomiting Palpitations or tachycardia Shortness of breath High blood pressure Difficulty swallowing Gag reflux GI motility dysfunction Diarrhea Frequency of Urination Article originally appeared in a regular issue of the Lyme Times Fall/Winter 2005 by Dr. Rhee

Fighting Mom: The red freckled rash is a petechia rash and is associated with Babesia. If the Babesia test was a Babesia FISH or PCR test it is not looking at antibodies and would not cross react with IVIG. Here is a little blurb on the PCR/FISH testing. "The PCR assay detects DNA and can be performed on fresh or archived clinical specimens. The FISH assay is performed on thin blood smears and detects the ribosomal RNA of Babesia (thereby indicating active infection)." -Wendy

There are a couple of things you can do to challenge or confirm Babesia Diagnoses. One would be to run a comprehensive stool analysis via Metametrix http://www.metametrix.com/. Per our LLMD it is common for Metametrix to pick up an 'unknown' parasite in stool for those that have Babesia. You could do a 4 day herbal challenge with A-bab, Crypto Plus or Enula to see if symptoms flair. There are also some blood smears that that might give you an indication if there is an inner red blood cell parasite. You could also do ART muscle testing if you are comfortable with process and a practitioner. Our LLMD feels it is important to consider the entire families labs results as a potential 'indication' as to how the family is infected. We had only one child positive for Babesia. I was symptomatic for Babesia but negative on blood work. We eventually did stool analysis, ART muscle testing, herbal challenges and treatment responsiveness to help with diagnoses. There is no doubt I had/have babesia as well as all of our children. It has taken a good 8 months of treatment for two children to see 'marked' improvement. One child has now been on Mepron since last July is probably nearing the end of treatment. One of my favorite symptom list for Babesia or BLO is the following. However, a few of the symptoms left off the list that are typically included in more traditional symptom lists of Babesia are dizziness, vertigo, nausea, night sweats, night mares, night waking, petechia rash and low RBC. The predominate symptoms of Babesia for me was dizziness, falling over due to dizzy spells, bed spins, nausea (while on antibiotics), thigh pain. For my children the predominate symptom was "temperature intolerance, layering clothing at night due to chill then throws off the bed covers due to overheating". The drenching night sweats, night mares, night waking came "mostly" after we started treating aggressively and eventually a petechia rash appeared. The rash occurred for older DS two months into treatment and it was along his spine. The rash occurred for younger DD after 7 months of treatment and it was 3" by 6" and also on her back. http://www.wayneanderson.com/pages/diseases/babesia I would ask your LLMDs perspective on your son's low positive results...... although, he may not be able to comment on results if your son is not currently a patient.

Definitely ask around for good LLMD in your area. We have found a home with the integrative approach that uses a combo of herbs, supplements, homeapathy, antibiotics, antivirals, detoxing protocols, etc. If you have potentially more than one sick individual in the family and costs are of concerns start with the sickest first. Be up front with your potential LLMD regarding your cost concerns. They understand the financial impact all too well and can limit testing to what is covered by your insurance or work with your budget. It sounds like you've survived a long time with LD and being judicious about how and when you treat is perfectly fine. You just might want to give yourself a break from some of the craziness and understand that those symptoms are real. There is a lot you can do to help your immune symptom in advance of potentially fighting a microbial war. I too suffered from fatigue 'thought I was drinking too much coffee of 2 cups a day or just getting old'. I also had night waking which is typical between 3 a.m. and 4 a.m. because LD et al impacts the cortisol. It is very common for symptoms to increase after a surgery or in my case two rough pregnancies (we have twins). Our children also suffered from low RBC and Low WBC. I was dumping excess WBC and RBC into my urine all pointing to chronic infections. I feel fortunate to have figured it out in advance of it being much, much worse. When we really looked at my situation I had: 4 viruses, Lyme, Bartonella, Babesia, Mycoplasma.... etc. I had the joint pain, back pain, headaches, fatigue, felt horrible when sick with cold 'flu like symptoms', etc. My symptoms didn't happen over night and were very slow to evolve.... recovery has been similar. Slow and steady wins the race and its truly a 2 to 3 year recovery timeframe.

Fighting Mom: I have three children with Congenital Lyme. One of my children presented with classic PANDAS like symptoms after a strep related illness. When we tested our children via Igenex there was only one child that produced antibodies and he was borderline positive for Lyme, positive for Bartonella and positive for Babesia. The other two children only showed positive for band 41 and negative for all co-infections via Igenex. We were fortunate enough to be seeing a very experienced LLMD and in light of my fibromyalgia like symptoms, he felt it might be congenital Lyme for all of our children. Hence, our Dr. did not use tests that looked at antibodies when we retested the two children that appeared negative for Lyme via Igenex. We did a provocation with antibiotics, collected urine and then looked at the urine for matching DNA. Our older son who does not make antibodies to Lyme (his body doesn't recognize the bacteria as foreign since he has had it since birth) and was positive via this method of testing. I eventually tested positive for Lyme as well via three different methods of testing. A couple of good tests that don't look at antibodies are the Dot Blot/Urine PCR via Igenex and the new live blood culture but must be off antibiotics for 4 weeks to test via this method. You might get lucky and your child might show up positive via antibody testing like we did for one child but you might also get inconclusive or negative results. I recommend seeing an experienced LLMD to help you through additional testing process. Treating for Lyme et al has not been easy and its been long journey with a lot of ups and downs for our family... BUT, we collectively continue to make progress. I am now off antibiotics in hopes I can sustain my gains without symptoms resurfacing. Today, I feel better than I have in years. I do not believe I am done with treatment but enjoying the break of feeling like a normal healthy person. I was on antibiotics for almost 20 months and will pulse treatment when/if symptoms return from here on out. Wishing you all the best as you potentially begin your battle fighting LD et al.

Wishing you all the best and some reprieve!!!!!

Per our Dr. parasites tend to activate during full moon... hence increase in symptoms. We also find extreme changes in altitude to be problematic for similar reasons. Certain bugs tend to activate in lower oxygenated environments while others die off. For us, our son's bloated stomach was a clue to underlying issues. 2 years ago we ran a comprehensive stool analysis and food allergies via Metrametrix and found an intestinal parasite, yeast and severe milk allergies. Most recently his belly was bloated again, we reran tests and his yeast problem has returned but his food allergies have greatly improved. Our son was also diagnosed with several chronic infections through out our journey and placed on a combo of antibiotics. Alinia was one of the antibiotics he was on for approximately six months in combination with others. It is a fantastic anti-parasitic, anti-microbial and anti-viral and we saw huge improvement from its usage. We also had a herxheimer response (worse before better) to Alinia when initially starting treatment. For us it was numerous things that caused our son immune system to go haywire. Although his PANDAS/PANS was initially trigger by strep we found so much more when we tested him appropriately. Here is the list of issues we found: HHV6 'virus', Coxsackies 'virus', XMRV 'virus'. EBV 'virus', Lyme 'bacteria', Bartonella 'bacteria', Babesia 'parasite', Strep 'Bacteria', Food Allergies, Mineral/Vitamin deficiencies and more. Like us, you could easily be dealing with multiple issue and will potentially take further investigation. I am positive your DAN would be happy to run a comprehensive stool analysis and food allergies to help confirm driving issue behind bloated belly.

Couple of things come to mind.... Could you request your PANDAS Dr. run the following. I think you have to keep searching for answers. 1. Viral Panel that includes: HHV6, CMV, EBV, Coxsackies, etc. I believe Lab Corp can run all of these. 2. KPU Urine Test: Potential vitamin and mineral deficiency and lacks fighting power to make headway. 3. Biofilm's: The test is run via Fry Labs and it could give you an indication that he is harboring infections housed in biofilms. Some information on test: http://www.frylabs.com/biofilm.php

With both parasite and Babesia.... I'd ask your LLMD if you can treat with Alinia for a while until stomach issues and current parasite clear. You will get coverage with Alinia for Babesia. Also since you know he is positive the nausea could be cropping up as a herx response to treating infection. I have had this nausea and so has a friend who is also positive for Babesia and anything salty.. saltines, pretzel and along some advil seems to help when it occurs. Also I have heard running the stool sample while on antibiotics is a good thing since you want to understand what the gut looks while treating. You'll also want to repeat test at some point when officially off antibiotics. Good luck and hope it resolves quickly. Wendy

It will also give you a reference point for when you are further into treatment. Our twins suffer from HHV6 and extremely high titers for Coxsackies 'foot and mouth'. I had titers for 4 viruses. My older son was not originally tested because it was assumed he had similar viruses (he did eventually ART for XMRV) and has been treated with numerous anti-virals over time. We recently tested him for viruses and he is now only elevated for EBV. It would have been nice to have the comparative but only having one positive virus still feels like progress to us!!! Here is the short list of some of the anti-virals used: SyImmune, Alinia, hd Olive Leaf Extract, Engystol/Viragraphis, Bryon White 'A-V'. I think I'm forgetting some of the anti-virals...

Great update!!!!!! AND, I am with you on having "a life" amongst health challenges.

In light of test results indicating Lyme and your son's recent herx response/petechiae rash. I would consider a comprehensive stool analysis via Metametrix. I am attaching a sample report to give you an idea of what information is provided to you on results. It looks at everything from good bacteria, bad bacteria, parasites, yeast, fungus, inflammation and digestive enzymes, etc. Next to the parasite results there is an explanation and symptom list of the following. "Parasite infections are a major cause of non-viral diarrhea. Symptoms may include constipation, gas, bloating, increased allergy response, colitis, nausea and distention" http://www.metametrix.com/files/test-menu/sample-reports/GI-Effects-GI-Function-SR.pdf If the result shows an unknown parasite, it is often an indication for our LLMD that Babesia is problem. My friends son was having similar issues, he does have Babesia and within a week of starting "Alinia" which is a anti-bacterial, anti-parasitic and anti-viral his stomach complaints stopped. He had stomach issues for a very long time... maybe over a year. He'll probably be on Alinia for several months in combination with other antibiotics. My children were on it for at least six months when we started Lyme treatment. At some point, you also might consider doing some biofilm treatment to address those that are in the gut. However, I would do the stool analysis first and address obvious issues before starting. Busting biofilm's can create additional symptoms and you'll want his load down to make treatment tolerable. Nausea and dizziness can be another indication he has babesia.. Have you checked his RBC recently? Count is often low or low end of normal. Good Luck, Wendy

Michael, do you think it helped? I've read rock rose is good for oral biofilms.

Where did you purchase rock rose tea-lyme and how often did you give it to your son. Thanks, Wendy

If I remember correctly your son was dealing with Bartonella diagnoses? His increased in behavior shortly after eliminating an antibiotic could mean he is still dealing with this particular infection. With Bartonella you typically see a flair in one to two weeks after lowering or eliminating antibiotics if infection is still present. It could also be the rebound effect after steroid use and chronic infection/s is reasserting itself. Have you rerun Bartonella titers lately or was it clinical diagnoses? For the stuffiness in his nose I'd try XClear. Its very good against strep, staph and mycoplasma in the nose. Our entire family uses it daily with great success. We do have mycoplasma diagnoses on top of TBI.

EAMom: I know this is not related to original topic but one of our LLMDs has made a strong correlation to parasite in kidney's and high cholesterol. He treats the parasite and cholesterol levels normalize.

You can run a blood smear for biofilms via Fry Labs. The test is $350.00. It will give you perspective on how many are indicated "Rare to Substantial". Also it appears, the size of biofilm matters as well. I have seen biofilm results via Fry Labs for children with Autism/Lyme, PANDAS/Lyme and PANDAS children and sometimes biofilm result (just one biofilm) can encompass the entire result or there can be very tiny biofilms but still considered substantial result. I suspect it is a much larger problem for many of the children on these forums then acknowledged no matter infection. From our families perspective, it can take a very long time to treat biofilms and for our older son 1.3 years throughout Lyme treatment of both enzymes/bolouke and tindamax. If you google Eva Sapi and biofilms you'll see a lot on biofilms and even specific recommendations to various herbal remedies and antibiotic remedies. In one article its stated the use of tindamax or "tinidazole decreases the size of biofilm communities and eliminates the germs living in them by over 90 percent". Tindamax is also commonly used throughout Lyme treatment to break up the cyst form of Lyme. There are some autism/lyme specialist also using surfactant for biofilms... I am in the process of learning more about the use of surfactant for biofilms. AND, I can not stress the importance of regular, ongoing rotating detox especially when treating biofilms due to heavy metal/toxin release. http://www.frylabs.com/biofilm.php There are two Lyme Dr.'s that I know of in the DC area using IV antibiotics for children with Lyme induced autism with some success. You are welcome to PM for names, although I do not have direct experience with either Dr.'s I can pass along a few individuals via the forum that are using these Dr.s.