sf_mom

I think there is a difference between Mitochondria damage and Mitochondria disease. Of course, the disease being much, much more serious. Our Pediatrician was focused on mitochondria damage with our children. One thing that indicated damage to her was balance issues when they were younger. It is my understanding it is common to have Mitochondria damage if you have been dealing with chronic infections et al. We are treating with NT Factor... I think Research Nutritionals gives a fairly good explanation of what is occurring. I haven't read a ton on the topic due to recent focus of heavy metals. Our LLMD also discussed the possibility of mitochondria damage impacting me as well and was more focused on boosting ATP at the time. I did not find it particularly helpful but it was at the beginning of Lyme treatment. ATP might be more helpful now. ATP fuel can also be purchased through Researched Nutritionals. http://www.researchednutritionals.com/store/item.cfm?code=crn101 I too would like to know more about testing, why Dr. T thinks its an issue and if anyone comes back indicating its an issue.

Our DD is currently 5. Her symptoms are more ASD in presentation than PANs. Her twin brother and older brother have more typical PANs presentation. All have high viral load, numerous chronic infections (gestational lyme et al), food allergies, heavy metal issues, vitamin/mineral deficiencies, etc. I have Lyme et al as well. We see an LLMD and a pediatrician who specializes in treating Autism biomedically. Our Autisum specialist focuses on gut issues, vutamin/mineral deficiencies, heavy metals while our LLMDs focuses on chronic viral/bacterial infections. I wanted to give you a little background because we've had a lot of help addressing our children's gut issues along the way. DD's current protocol for gut issues is the following: bentonite clay, probiotics 'rotation', Ribose powder, Glutamine powder, digestive enzymes prior to each meal (TriEnza Chewable by Houston Enzymes), higher dose B-12. Older son is on a similar protocol plus a mast cell stabilizer cromolyn (very helpful). They are also dairy free (dairy/casien allergies) and mostly gluten free (do not have gluten allergies). We have treated for parasites (both herbals and anti- parasitics) and also supplemented with MSM 'sulphur' which is good for oxidative stress and treating parasites specifically nematodes. We do not specifically supplement with butyrate. Both DD and I have very low butyrate and low pancreatic function while my sons do not. I thought the comments below might be helpful to you.

We have used both and currently giving Glutamine. I could not tell if the XYMOGEN helped at the time. However, DD has had huge improvements since starting Glutamine but we also started her on specific digestive enzymes (no Butyrate, low pancreatic function, etc), specific vitamins/minerals and hit yeast/fungus very hard when starting Glutamine. One of them, or all of them are working. She gain 3 pounds since Christmas... was 46 pounds and now almost 50 pounds. Her face is fuller, skin tone better, much happier, better attention, etc.

Eliminating all sugar and carbs can be 'really' difficult. I am day 3 of Paleo diet to help deal with yeast and inflammation. Technically all fruit should be eliminated as well due to high natural sugar content... It feeds the yeast. Anyway a couple good herbal remedies are grapefruit seed extract, oil of oregano and garlic if your Dr doesn't want to prescribe nystatin or similar. All of these herbals will cause a die-off reaction so expect things to be worse before better.

Great update!! Thrilled to know of your continued success off antibiotics. Hope to get there soon.

I would definitely document symptoms and report to LLMD in April. Enjoy the antibiotic holiday. I suspect you are not done with treatment. Perhaps herbals remedies are warranted verses full blown antibiotic protocol. I started treatment in September 2010. Stopped treatment April 2012 and had subtle symptoms resurface within two weeks of stopping antibiotics. I went back on antibiotics by June 2012. Since June I have had some of my worst herxheimer responses since starting treatment but am also trending much better with some really great days. Currently on Melarone, Bacilin Shots, Minocycline, Glutatione push. Recently tested for blood clotting and heavy metals.

LLM: Interesting. I have read some by Cutler or about his perspective and will agree the topic of heavy metals can be confusing. He also doesn't like MSM as a chelator for similar reasons. Supposedly MSM Sulphur moves the mercury around, doesn't bind like DMSA and as a result only ends up displacing it in other parts of the body (did not specifically say to the brain though). AND, as you know, we've had a great response to MSM perhaps due to it helping with oxidative stress over it actually moving metals. It reminds me of the debate on supplementing with D or magnesium and if it feeds the Lyme/infections or helps the body to fight it. Literally I'm banging me head against the wall on the heavy metals topic. Soooooo, the only child we ended up supplementing with ALA was 'severely' depleted in it. This is our older son and he does take two Core pills a day plus some C's, D's, Iron, etc. All the other vitamins and minerals were at decent levels. I do think we had some dumping when starting the ALA or least a slight increase in symptoms but now back above prior baseline. I am not sure our Pediatrician fully ascribes to all of Cutler's perspectives or protocols, more because his protocol is difficult to administer throughout the day (every 4 hours even during the night). She stated, that she gets just as good of results addressing heavy metals with the alternative solution and o.k. with both ALA and MSM. We plan to start with every other weekend, DMSA 3 times a day for 3 days (depending on challenge results). My hope is we won't need to be more aggressive with protocols or up biofilm treatments. One thing I have learned is never, say never though. So, who knows at some point I may be administering medication in the middle of the night, or exploring IV chelation, or giving ungodly amounts of enzymes for biofilms. If all goes smoothly the last thing we'll test for is biofilms again, when we are done with chelation and then start the process of tapering off antibiotics. I think the take away..... the persistent viral titers were a clue and did not resolve easily with a months worth of anti-viral treatment. We needed to dig further and hence found heavy metals.

The twins were KPU negative but also had inappropriate Zinc/Copper ratios. As you know, when you add the zinc the copper will release and levels will regulate to more appropriate levels. Copper depletes digestive enzymes effecting absorption often followed by yeast/fungus proliferation and possibly reactivation of viruses..... They did not specifically mention the copper being bound to viruses just heavy metals in general. We are dealing with high lead, high copper, indications of mercury and high viral load so it all makes sense to me. If you haven't tested for heavy metals yet you might considered it. I am positive one of your Dr.'s is well versed in testing/treating for heavy metals. We were also told chelation can take 6 months to 2 years depending on how they dump and if there is biofilm problem. Remember the biofilm's will grab heavy metals as well to form their protective coating. If our kids do not release heavy metals properly we will step up the biofilm protocol along with chelation. We are hoping chelation will weaken any remaining biofilm structures so more aggressive protocol will NOT be needed. Based on our children's current progress it is felt by our Dr. they will dump fairly easily but only time will tell. We are in the process of challenging for heavy metals and the two boys urine stunk horribly so I am assuming they dumped a lot with challenge. While DD's urine did not stink. We are still awaiting the results. Like your son, our older son is currently doing very well and responds normally to illnesses but not off antibiotics yet. Our hope is that dealing with these remaining issues will once again lower load to prevent future immune activation when ill and viral titers will eventually "all" normalize. Alpha Lipic Acid is considered a chelator. You might try adding some for a week or two to see if you get an activation of symptoms, if so.... I'd again consider testing for heavy metals.

As you may remember, we had a very high viral load with several stains of Coxsackies, HHV6, etc. We've used an ongoing rotation of anti-virals throughout the last 2 1/2 years and titers were still elevated a year ago (all herbal remedies). However, we recently retested viruses in the fall and everything is sub-negative except for one strain of Coxsackies that is only slightly positive. The only thing I think we did differently in the last year for viruses was build up to a high level of MSM (2,000 m.g. per day for child) which is suppose to be a good anti-viral especially for retro-viruses and great for oxidative stress. I am not sure if that is what specifically helped but its worth a try. We had an immediate positive response (minus herx) when starting MSM that might point more towards oxidative stress. We have recently given the MSM a break as we focus on heavy metals treatment with potentially DMSA. Some believe MSM can also move heavy metals. One thing I learned recently from both LLMD and pediatrician is viruses bind to heavy metals. We now know we have a heavy metals issue and will readdress viruses while chelating and fully expect our titer levels to change. I am not sure if you have checked for heavy metals but that might also be something to consider since you are having difficulties with viruses.

Nice Update! A long time ago I spoke with our LLMD about dilated pupils and he said probably swelling in brain/pain but did not specifically mention Bartonella. We too have bartonella diagnoses in all three kids. I still question if there is inappropriate dilation (nothing like the dilation previously) at times in one child however we are treating extremely aggressively for Bartonella right now for all three kids. We also still have an occasional wondering eye in another child. Eye exams over the years indicated huge variation in eye sight for one child: 40/40 at 4, 50/50 at 5, 70/100 plus wondering or lazy eye at 6 when we started treating for Lyme et al and was 20/30 at last check a year ago. I definitely think there is both potentially inflammation in the brain and optic nerve inflammation maybe specifically Bartonella but have also read Babesia can have similar impact on eyes. We also had 'Floaters' which is typically lumped as Babesia symptom. '-

Metamedrix Comprehensive Stool Analysis will provide the level of good bacteria in the gut indicating what is needed to help re-establish specific strains of bacteria with probiotics. Here is a PDF of their result page. The 'good' bacteria is considered predominate bacteria and listed in the first section. There are only about 8 or 9 listed but its a good indication of where you come up short and potentially how to focus your choice of probiotics. We tend to rotate brands now but initially used Custom Probiotics - 11 strain powder in high doses. We are now using Natren 'Healthy Trinity' which is dairy free and has better absorption. http://www.metametrix.com/files/test-menu/sample-reports/GI-Effects-GI-Function-SR.pdf Additionally, you will have difficulties correcting leaky gut if the digestive enzymes are off, if there is proliferation of yeast and/or have a heavy metals issues. The stool analysis will provide you with the level of yeast 'hopefully'. Unfortunately, yeast isn't always picked up in stool analysis. Yeast will form biofilms and can be very difficult to treat and usually needs to be addressed in some way 'ongoing' while on long term antibiotics. Regular nystatin doses did not do it for our children but we also have heavy metals issues of Lead and potentially Mercury. The stool results will also provide what digestive enzymes are missing if any. We give digestive enzymes and a high dose 'compounded' nystatin together before meals to deal with yeast biofilms/lack of enzymes/gut issues. We used our initial stool analysis as a baseline and have re-ran the analysis about once a year to check status. The probiotics over the years have definitely helped even while on antibiotics (we have done mega doses) especially when it comes to Prevotella sp, Streptomyces sp., Mycoplasma sp. strains. We still need better coverage for Lactobacillus sp and Bifidobacter sp. but I think we've had a tough time with re-establishing gut bacteria due to heavy metals. There are lotions, ear sprays and nasal sprays with probiotics in them. We use a probiotic cream called Magoroku as we are dealing with a ton of rashes due to yeast/fungal issues. Hope that helps. Typically a 'good' DAN is well versed in all of these issues heavy metals, yeast, digestive enzymes, leaky gut. We see an LLMD plus a Pediatrician that specializes in treating autism biomedically... For some reason our Pediatrician does not specifically refer to herself a DAN.

We used Dr. Data/Genovia for heavy metals. With me, initial test was a DMSA challenge. With the children, it was slightly different as we did not challenge with the initial testing. Now, we are pursuing challenge test to confirm they are actually dumping with DMSA. If not, we will challenge again with a different chelator to see if they are dumping, etc. I am fairly certain your LLMD is well versed in testing/challenging for heavy metals and should have test kits available. I would also re-emphasize with your Dr. at next visit the ongoing yeast/fungal issue being potentially triggered by heavy metals. If there is a heavy metals issue you will need to also look at vitamin and mineral deficiencies. Unfortunately, it is all related but by addressing each of these issues you will be helping to unburden the immune system.... bringing your entire family closer to recovery. As for mold, yes I would test the inflammation markers that Shoemaker recommends. It been a while since I've actually read his website so I am not sure if he specifically recommends HLA markers. A friend who is dealing with mold recommended these specific tests to me. I am sure your LLMD is also versed in testing for specific markers. I can appreciate how expensive all the testing can be. If you are methodical, hopefully you can lower the ongoing financial burden so its not such a huge hit all at once. I think by testing one child, it will give you at least a potential direction. After finding all our children had lead issues we tested our water and of course it had the highest response to lead. We were using a Britta filter previously but it doesn't filter heavy metals. Lead can also be in bottle water so don't assume its safe.

Since you've been treating so aggressively for a while now, I would suspect there is an environmental source. If your children are making advances with Lyme treatment then I would check for heavy metal issue first in one child (co-pay was about $200.00). If it is an issue then consider testing other family members. If your children are stalling out with Lyme treatment then perhaps check HLA and inflammation markers in one child (these tests should be covered by insurance). If there are indication of an inability to detoxify mold and there is inflammation potentially indicating mold, then I'd have your house officially checked for mold. So sorry this is an ongoing issue. For us, we are addressing heavy metals first as our children continue to make advances with Lyme treatment. However, if we stall out after heavy metals are addressed, I can assure you we will dig into mold issue further.

I would also consider some type of aggressive anti-fungal along with removal of ball in sinuses or it may continue to be ongoing problem even after ball is removed. We had no physical indication of yeast/fungal issues until we did comprehensive stool analysis and treated 'very' aggressively. Our children were on typical dose of daily nystatin which did not help. Now that they are on 2,000,000 un per day of nystatin and we have had recent yeast rashes (eczema) and fungal rashes (ring worm and one other fungal rashes) appear. Our Dr. feels strongly the entire family needs to be treated all at the same time as yeast/fungus is contagious. If you are unable to get prescriptions for entire family I would recommend naturals. If it continues to be an ongoing problem even after aggressive treatments you'll need to consider heavy metals as they can really trigger proliferation of both. Glad you are also checking for other infections in sinuses.

If he is better on Diflucan. I would suspect a yeast/fungal issue. Diflucan is not typically a good long term solution. You might try a higher dose of nystatin daily. Our kids are on 2,000,000 un per day. Typical dose was not helpful and we have the dosage compounded. You might also try some herbal remedies along with homeapathy specifically for yeast/fungus. Herbs: grapefruit seed extract, garlic and oil of oregano. Homepathy: Candidate, Dercut. If the yeast continues it is very possible you have a heavy metals issues. High lead and mercury will trigger yeast overgrowth similar to long term antibiotic use.

You might also test for Celiac's via Metametrix. http://www.metametrix.com/test-menu/profiles/immune-function/celiac

I would test for food allergies via Metametrix IgA and IgE. It will tell specifically what you are dealing with in terms of allergies and help with elimination. We had severe dairy, casein, egg but not gluten allergies that are getting better with elimination diet and mast cell stabilizer.

I am really glad you ended up doing the Metametrix Comprehensive Stool Analysis. You should definitely make some head way when treating for parasites. I wanted to mention a couple of things based on our experience in treating for them. Parasites can take a long time to fully eradicate. 1 1/2 years to treat DH. They can be almost anywhere in the body and will create what appears to be high anxiety symptoms of nail biting and teeth grinding (parasite thought to be in jaw cavity). These high anxiety symptoms will increase when initially treating. Parasites lay larva that will hatch often after killing initial mature parasite and repopulate in the body and why treatment can take so long. Many pulse therapies around full moon cycles because that is when the larva typically hatch. Additionally, with that many different parasites in stool analysis I suspect your DD's gut PH's are way off due to the toxin's they create and has inflammation. When you looked at results I am sure you focused on the positive parasites but there is a ton of "other" good information there. I was wondering how her good bacteria looked and if she was low on any specific strains. Those results might inform you on a choice of probiotic. Did she have any digestive enzymes? If not, I would definitely add a good general digestive enzyme to help her digest food and help with absorption of vitamins and minerals. Did she have any noted inflammation? If so, you might consider a mast cell stabilizer and also test for food allergies. Did she have any indication of yeast? Remember, if she has multiple issue only change one thing at time to determine helpfulness i.e. changing probiotics, adding digestive enzymes, treating yeast. For our family, we had a lot of little issues that = PANS, treating each thing has helped to advance recovery. I am hopeful the same will happen for your DD. Good luck and keep investigating.

I should add that I suffer from multiple chronic infections so its hard to say if the spinal pain was specifically Lyme. Whatever it was.... virus or bacterial it felt like it was in my spine perhaps spinal fluid or nerves.

Yes. On two occasions I had 'nerve/spinal' pain that was so bad in my back I was unable to walk temporarily. I refer to it as nerve/spinal pain because my back wasn't really hurting in a typical way and it was more generalized pain in my spine. I had troubling even sitting down and needed to be flat on my back. I've also had other back pain that included ongoing low back, neck and shoulders that I think was also from Lyme. All of my back pain is currently resolved but probably the most painful when I was experiencing a herx with high fever.

I was also originally thought to have Fibromyalgia. Treatment has not been easy but I am over 2 years into Lyme treatment and I do see a light at the end of then tunnel. All the pain even in my lower back is gone. All the headaches, urinary issues, moodiness due to tiredness, hair loss is gone. I have some brain fog 'forgetfulness' that is greatly improved and random fatigue. Some days I have no symptoms and that feels awesome. When they really tested me I was loaded up with multiple issues: EBV, HHV6, Mycoplasma, Lyme, Bartonella, Babesia, Vitamin/Mineral deficiencies, etc. I am so grateful to our treating Dr.'s as we are getting our lives back as a family. Two of our children when tested even via Igenex were serologically negative due to the fact they got Lyme while in-utero and their bodies didn't/don't recognized the bacteria as foreign. We finally found lyme when we looked for DNA in their urine. One child did make antibodies and was IND for Lyme, positive Babesia, positive Bartonella. We also had no known tick bites and we lived in downtown San Francisco prior to diagnoses, etc. Two of the kids were sick fairly early on in life and on regular antibiotics at 2 1/2 years of age. Older son's immune system failed at 5 1/2 years of age after vaccinations, strep related illness and exposure to a child with full body rash all within 3 weeks. He was treated by Dr. K for PANDAS one year and had 3 hdIVIGs during that period. He responded well to treatments but could not achieve full recovery. We were forced to look at other issues when he had blood in his stool for over 7 weeks and that is when we found Lyme. "Today" he has no obvious symptoms of Lyme or PANS. However, we are starting heavy metals chelation and expect that to change. Both my husband and I had tons of exposure as kids. I am from MN and spent summers camping and sailing on MN/Canadian border. DH is from North East and remembers pulling a ton of ticks off himself while growing up. I would also recommend renting or buying Under Our Skin. Definitely test yourself no matter your son's results. A good friend's son who also has Lyme/PANS and had 3 hdIVIGs could not sustain recovery and would typically regress between weeks 8 to 14 and why she was forced to look at other issues as well.

We had kissing tonsils in two children... At some point a couple years ago, someone convinced me tonsil/adenoid were a valuable filter for infection and that the infection could be residing in almost any organ in the body. Since we were dealing with Lyme et al, it is common for these infections (not specifically strep) to be in the appendix, spleen, kidneys, bladder, sinuses, gallbladder, etc. In my mind and since we knew we were dealing with chronic infection our strategy was to deal with those infections first and if recovery stalled then maybe we would reconsider pulling tonsils. Thankfully, it doesn't appear we will need to remove tonsils as they are no longer kissing and both kids are making strides towards full recovery. Neither boys have ongoing issues with strep and titers have almost normalized for our entire family. DH's anti-DNase-B is still slightly elevated but trending in the right direction in the low 400s when he was 980 at one time. DH's ASO was also elevated/positive but is now sub negative. I think it is a very personal choice and I was not always convinced we were making the right choice. It was very difficult to stay committed to not pulling them when they were still kissing and we had symptoms. Each time the topic has come up the forum, I had doubts about our choice. I do believe pulling tonsils can bring relief (we've all read positive stories) and if that gets a child to the next phase of recovery, I am all for it!!!!! I also reserve the right to change my mind on this topic but for now 'not pulling tonsils'.

I understand you dealing with multiple chronic infections specifically TBI. Based on our experience couple of things could be happening. 1. IVIG could be creating an extended herx (in this situation more detox is helpful). With time he should pop out of it and be fine. If your son has a pic-line and this is a detox issues IV Glutatione could really help him feel better. I'd be talking with your LLMD about the possibility of regular treatments until he is trending better. Add anything that also helps with inflammation. We use Enhansa and Maxi Flavone. 2. It's possible he is not ahead of current chronic infections and the IVIG stirred things up. It is our experience when there is a continued regression (12 weeks or more) often a co-infection is not well covered in protocol. I would say if you are still not seeing improvement by week 12 to 16 even with upping detox and adding anti-inflammatories, I'd be talking with your LLMD about what you are missing in protocol and maybe an antibiotic rotation is required. What antibiotics is he on currently and is he covered for Babesia? 3. In addition, if you have not check for KPU or vitamin/mineral deficiencies yet..... I would recommend putting that at the top of list. He truly needs proper supplementation to fight current issues. Hope I've provided you with a few ideas to pursue with your Dr.

I should add she is also being treated for multiple chronic infections and viruses with multiple antibiotics and anti-virals. She also has a heavy metals issue of lead which may have caused stripping of her digestive enzymes. I recently posted a great link about copper toxicity which covers heavy metals and how they are all interconnect. Please check my history for link. It's worth the read. Even discusses self limiting diets due to these deficiencies.

Our DD sounded similar and had dropped to 7% for weight. Very low IgG 1s and 3s. Became a picky eater and self regulated to vegan diet with emphasis on carbs. She has a twin who was over 100% for height and weight. The direct comparison had me very worried because I felt they ate similar amounts. What turned it around for us was focusing on her gut. We tested via Metametrix for both food allergies & comprehensive stool. Genovia for vitamin & mineral deficiencies. She had no digestive enzymes,,, so no absorption of what was eating. She had low zinc, d, b, magnesium, iron, high copper, yeast, decent 'good' bacteria. She was not KPU positive. We currently give her glutamate, probiotics, digestive enzymes prior to each meal and supplement for all deficiencies. She is now in 40% for weight. I am very greatful we did those tests and continue to use comprehensive stool to track progress. With our co-pay all three tests were probably in range of $500 to $600 but well worth it to discover what she specifically needed. I feel like she has the 'fighting' power to deal with her chronic issues. We have not done IVIG with this particular child and she continues to make progress even in her IgG subclasses, WBC and RBC, etc.