sf_mom

Nausea, vomiting and diarrhea can all be herxheimer symptoms but they can also mean something else is a problem. LOAD UP ON DETOX if you can.... lemon water, binders, etc. and see if things improve. If he runs fever that does resolve in couple of days, if diarrhea continues more than a week after binders and if he continues to vomit more than 48 hours I would follow up with your PANDAS Dr. We are going through something similar with younger DD and adding a new antibiotic on August 28th. We are still trying to figure out if its a herx or C-dif. Its looking more like herx because her stool is normalizing but she complained of stomach ache this morning. We were in touch with our LLMD to follow symptoms last week but have not stopped new antibiotic yet.

Our older DS had 3 hdIVIGs for PANDAS. His last treatment was January 2010. In August 2010 we discover Lyme et al that included Parasites, high viral load, KPU and co-infections, etc. Although we found the hdIVIG to helpful the treatments were not a cure (like others have stated but they gave us a lot hope that he could be much better). We have continued to make further gains treating each specific issue related to our son's condition that was well beyond auto-immune and strep. He has experienced extended 'herxheimer' responses to both hdIVIG, specific combinations of antibiotics and herbs which have lessened over time and treatments. He maintains a high level of recovery and responds to 'new' bacterial infections and viruses with a normal immune response but not done with treatment. The true test of his recovery/remission will be once he completes treatment and is off antibiotics fully. As I type, I am reading LLMs more recent post and would agree. No matter your decision regarding hdIVIG or Lyme treatment a 'good' integrative LLMD that understands things like heavy metals, mold, methylation, KPU, viruses, chronic infection, parasites or just a good DAN/integrative Dr. might be great addition to help evaluate some of these other issues that are not addressed with Dr. L. These Dr.'s are out there, some better than others but honestly extremely helpful when they are good and hopefully local. We see two LLMDs (one because he specializes in ART testing) and recently added pediatrician/DAN.... all three understand Lyme et al, PANDAS/PANS and Autism. Recovery is a journey and wishing you all the best in your decision.

The itching was often on DS back but would migrate to different areas and mostly peeked at bedtime. We did tons of detox with our son that seemed to help with symptoms. Our LLMD was some what suspicious of 'unknown' parasite as it is often found in comprehensive stool analysis with those that also have Babesia. It is an inner red blood cell parasite and because we had rectal bleeding at time, it made sense he had a positive stool analysis. Some think nail, cuticle biting or picking is another indication of parasites. Also check to see if your child's symptoms increase during full moon cycle. It is my understanding full moon is typically when parasite eggs hatch causing additional symptoms. http://www.thenutritionalhealingcenter.com/parasites/ I should mention my husband was also positive for two different parasites and it took us over a year to deal with those. We did use antibiotics (several rounds), herbals and MSM to treat continually throughout the year. We think we have resolution but plan to retreat about every six months and are continuing with MSM supplementation (5,000 m.g. per day). He had acid reflux (regularly), lower intestinal or prostrate pain (every couple months that often would keep him up at night). His symptoms have resolved. MSM is natural sulphur. Our entire family made huge improvements with this particular supplement. MSM is suppose to be fantastic at treating nematodes which is a round worm. MSM will cause a 'herx' like response so best to start at lower dose if you try it and increase slowly. Our older son who is 8 years old started at 500 m.g. and we have increased dose slowly over months. He now takes 2000 m.g. daily in the morning. Whole Foods carries Jarrow Brand MSM (Opti-MSM) in both powder and capsule with no additive. Here is the information on MSM. http://www.msm-info.com/ It will be interesting to find out what the Parasitology Center finds for your child.

I would not let it slide especially given results, symptoms and positive mycoplasma for entire family. I know our LLMD in CA would be happy to review results and make recommends regarding additional tests via phone (possibly co-infections, etc). They can not prescribe anything however until you are a patient, history has been fully reviewed and there is a physical examination. You are welcome to PM if you are interested in getting a second opinion on 'just' test results. There are also two wonderful Dr's fairly close that I think could also help with results, further testing and have a wonderful grasp of PANDAS and Lyme. Dr. Steven Bock or Dr. Kenneth Bock in Rhinebeck NY. You could also take 'yourself' off antibiotics if on them and run the Advance Lab Culture for Lyme to confirm if you are positive. http://www.advanced-lab.com/spirochete.php I think your results could be very telling potentially for the rest of your family. However, I understand the tests only picks up about 80% of those truly infected with Lyme, it still misses about 20%. So, a positive is very meaningful but a negative could mean they just missed the spirochete in the blood. For us, understanding Lyme et al was involved has been critical to our successful treatment of our PANDAS/Lyme son.

We initially did 3 hdIVIGs for PANDAS with older DS. Six months post his last treatment he had rectal bleeding for over 8 weeks and we pursued an integrative LLMD in Northern CA to further investigate issue. We also found an 'unknown' parasite via Metametix, rectal bleeding stopped within 48 hours of starting Alinia but our son stayed on Alinia for another 5 1/2 months to treat. He also had itching as symptom. I would continue to pursue the "unknown" parasite. There are plenty of herbal treatments for parasites if your Dr. will not prescribed like Para-A, Para Comp and Healthforce parasite cleanse, etc.

We loaded our older DS on specific combination of antibiotics to create die-off that would hopefully dump into urine. You collect urine days 3, 5 and 7 after starting antibiotics. For our older DS who was BAND 41 positive only via Igenex this type of testing worked well. He was also negative for all co-infections. We eventually did other forms of testing 'not antibody testing' and treatment responsiveness to determine other co-infections. My children are gestational Lyme et al (got it from me while pregnant) and sometimes their bodies do not recognize bacteria as foreign and therefore do not produce antibodies to bacteria. Our younger DS came up PCR positive (DNA match) for Babesia, Bartonella and IND for Lyme so we had no problem finding the source of illness in this particular child. Here is the info on Dot Blot testing. http://igenex.com/Website/# If your child is off antibiotics for at least one month you can also do a live blood culture for Lyme via Advance Labs.... It has also been very helpful to some that were unclear if Lyme was an issue. http://www.advanced-lab.com/

Widespread itching that typically worsens at night can be a sign of the liver being too toxic. It is also sign of neuropathy or infections like others have stated. I too have had horrible itching along with my older son we both have Lyme et al (chronic infections). The IVIG 'might' be causing a toxin dump and hence the liver is overloaded. You could try some detox specifically for the liver and some Bentonite Clay (liquid, 1/4 cup at bedtime 2 hours away from antibiotics) which will draw toxins from bile to see if it helps with itching. Whole Foods carries the Great Plains - Bentonite Clay. It is tasteless but texture is funny. I feel for your son, the itching is a horrible feeling.

2 of my children were band 41 positive ONLY when tested for Lyme via Igenex. We still pursued an LLMD due to rectal bleeding at time (son had already had 3 hdIVIGs). Our Dr. did provocation testing and look for antigen match for Lyme in urine... HIGHLY accurate when positive and results are not impacted by donor antibodies from IVIG. Our older son was positive for Lyme via this method of testing and also positive for parasitic infection which was causing rectal bleeding. The stomach aches are a symptom of Lyme et al but also often the result of parasitic infection. You can do a comprehensive stool analysis to determine potential parasitic infection. We used a lab called Metametrix which is one of the better labs for this type of testing.

Our LLMD actually tests for Core via ART. One Dr. believes it is infection driven and not sure the other Dr.'s 'full' position on KPU. You have to remember my older son and younger son are not genetically related to me and fully to each other but carried by me in-utero and both have congenital Lyme. Older son was positive and had great response, younger son was positive via ART and borderline on urine and had a tough time with treatment. Our local LLMD did not want to treat the younger son 'at this time' due to possible inflammatory response and again potential heavy metal issues. Said we may eventually parse minerals differently than what is in Core... selectively pick and choose them. I have the test kit for older DS who was treated for about 6 months and stopped last November. Local LLMD wanted to retest but I've neglected to do that for the last 8 months due to having so much on our plate with treatment. When we were preparing to take him down on antibiotics last February and we found he still had a biofilm problem, high viral issue... Coxsackies being the worst and was positive for all three strains tested. Those results were enough to make me realize that although he looked good he wasn't done with treatment. In the spring he started having mood liability that was slowly getting worse over time (never a huge symptom in the past) but we were focused on treating Babesia and biofilms and thought all the stuff coming out of biofilms was the problem. We stopped treating Babesia as local Dr. felt Bartonella was resurfacing 'taking predominance' or stirred up with more aggressive biofilm treatment. He was right.... we added bactrim to antibiotic combo and he was better within hours, 'perfect' for a couple of days and then he had severe reaction to bactrim with full body rash and had to stop. After that we focused on oxidative stress with natural sulphur and added rifampin and he is almost perfect again but had his first bartonella rashes appear over the last couple of months several times. Sometimes it is hard to parse what is what when symptoms surface. Having the rashes appear after all this time was shocking... and honestly, a little frustrating. This particular experience has overwhelmingly convinced me that you need to be very thorough to ensure the best possible outcome with potential relapse. Hence, LLM and Christianmom's comments make me go hmmmmm I need to retest older DS for KPU who had a good response with treatment. Younger DS is our sickest and has a long way to go with treatment and still in the PANS mode with treatment and infections. I think we'll eventually get to selective supplementing for him as well. Thanks LLM on perspective on testing. We start homeopathy for bartonella in two weeks and will take 6 weeks to complete and didn't want that to be an issue with retesting.

OK so now I am pulling out the test kit from under my desk and actively looking for a week to suspend supplements so we can retest. Better safe than sorry. Off hand does anyone know about herbals or homeopathy and if its o.k. while testing or is it just vitamins? I think we suspended CORE last November so the results will be interesting to see if KPU is still a problem. Does anyone remember also how long it takes to get results 2, 3 weeks? I'd also like to have the results back in time for next LLMD appointment. Thanks.

When we treated for KPU....Geez, over a year ago our older DS took 4 Core pills a day and I can not remember how we broke them out. At the time, we were giving the higher Omega 3 ratio's (Oops) but are now using the 'YES' parent essential oils that favors Omega 6's that includes primrose, sunflower, flax, pumpkin, coconut (lots of E in Sunflower Oil). We did not supplement with magnesium, vitamin E, Niacinamide at the time. One of our Dr.'s believes KPU is predominately driven by infection so when our older son stopped ART'ing for KPU we suspended treatment after about 6 months. I need to say, it is always hard to give up something that seemed to help so much inclusive of a specific antibiotic or combo of antibiotics. I worry KPU is still an issue and have a test kit sitting under my desk and think we will retest older DS again when off antibiotics to see if there is a lingering issue to give me peace of mind. We also started younger DS on KPU treatment with one Core pill a day at the same time as older DS, he initially got worse and within a month he developed a nasty fungal infection (black tongue). Our other LLMD requested that we stop KPU treatment due to "potential" inflammatory response and heavy metal dumping causing fungal infection. We have not gone back and retreated this particular child for KPU and he has continued to make progress. He originally ART'd for KPU and was borderline on urine results. As for ongoing supplementation in light of KPU results..... I now look for the balance of vitamins through Health Force products with a rotation of Vitamineral Green (lots of E and K), Truly Natural C, Earth and only supplement with B-12 (lower dose than the past 2 years), Kavinace (B-6 and Taurine), MSM, chlorophyll, probiotics. The focus has turned toward oxidative stress so hopefully any vitamin is better absorbed and the body no longer needs the crutch of higher dose supplementation. We have had similarly positive results addressing oxidative stress as we did when treating KPU for older DS. I personally am seeing much better results addressing oxidative stress but I was also sicker a year ago when treating KPU... so, who knows. KPU treatment definitely helped advance treatment but like Susan Swedo said the tincture of time has been critical in the over all healing process. It all mattered for us but many kids will get well and not have done any of the things we tried and used many other forms of treatment. I wish it had been simpler for our family and I too rack my brain over some of this stuff "obviously". Anyway, I just wanted to give you the confidence that your son's march towards recovery is happening and wanted to congratulate you on those successes. We didn't do every thing right or recommended for KPU and it still helped. I don't think it can hurt to add some of the things your son is missing from recommended protocol to see if it helps. Of course add supplements one at a time, build dosage and watch for positive, negative or herx 'like' response. I remember reading something about the 'balancing act' of treatment a long time ago and geez that concept still resonates strongly.

We are currently treating Bartonella with Amoxicillin/Bactrim for one child, Amoxicillin/Rifampin in another and Azitho/Omnicef in the third. We've also had great resolution to the twins Livedo Reticularis 'purple mottled skin' and overall improvement to baseline when we added MSM 'natural sulphur'. Our LLMD attributes the reticularis to Bartonella infection. We often have a third or fourth antibiotic on board for coverage of other co-infections. For example: our sickest child 'younger son' is currently on Azithro/Omnicef/Mepron/Alinia... MSM, Samento, Quina and few other supplements predominately for detox/methylation. Azitho/Omnicef is for Lyme and Bartonella, Mepron is for Babesia, Alinia is for Babesia, Parasites, cyst form of Lyme/Lyme and Viruses. We will also be adding homeopathy in two weeks specifically for Bartonella. We've also used A-Bart, Bar-1 and other herbs in the past in addition to antibiotics for Bartonella. I think the Amoxicillin/Biaxin combo is a good for treating Bartonella.... But if you are not making headway maybe you do need to add something like azithro for Lyme coverage. You might also want to consider adding MSM at low dose of 250 m.g. per day and build up to 2,000 m.g. over time. I often try new supplements on myself first to see if its helpful. MSM was very helpful to me and then added it to kids protocol. Our younger twins are still on 500 m.g. of MSM but will increase them 1,000 m.g. in about a month. Older son who is 8 years old and is up at 2,000 m.g. per day. After starting MSM we had our first bartonella rash surface for both older DS and myself. I got mine within 48 hours of starting MSM. I have a severe allergy to sulphur antibiotics but can take MSM with no problem and currently at 4,000 m.g. per day. I did herx for two months fairly intensely. Hopefully I gave you a few ideas to discuss with LLMD: third antibiotic to cover other co-infections, MSM, homeopathy specifically for bartonella. Edit: I would also consider rotating in rifampin and perhaps dropping Biaxin when eventually off risperidone.

Metametrix. I've attached link to their comprehensive stool analysis and what is reviewed in their result sheet. Sorry I do not know how it compares to Genova Diagnostic. http://www.metametrix.com/files/test-menu/sample-reports/GI-Effects-GI-Function-SR.pdf

I too believe parasite play a big role in Lyme et al. It took use a good year to treat DH for 2 different parasites and 2 of three children also confirmed positive for parasites. Our older DS PANS/lyme child even had rectal bleeding for almost 8 weeks due to parasite and why we needed to investigate beyond original PANDAS diagnoses. LLMD prescribed Alinia and bleeding stopped within 48 hours of starting antibiotic. We've used a bunch of different herbal remedies and antibiotics to treat.... again, DHs parasites being the most difficult to eradicate but probably also had the parasites the longest. I plan to re-treat regularly for parasites. Norcalmom: Glad to see you tested for KPU!!

Dawn, What an improvement!!!!!!! My big question... Did you test or treat biofilm's yet? If you remember DH had high ASO 295 and Anti-DNase-B 980 that went up when treated 'initially'. We have treated entire family for biofilms and strep doesn't seem to be a huge issue anymore for PANDAS/Lyme son. Unfortunately, we haven't rechecked DH recently but will ask LLMD tomorrow for lab script to see where he stands too. We have definitely had exposures to strep without flairs and a recent bacterial infection in household (did not culture). Only younger son seemed to flair with PANS type symptoms and is already trending back to baseline as symptoms resolve. However, I don't believe we'll be able to judge appropriate responses to strep until we are fully off antibiotics and have positive culture. Anyway... 'my guess' is maybe the strep is bound up in biofilm's?

Yes, we did comprehensive stool analysis and ART for parasites. Two kids were positive for parasites and saw great resolution with treatment. The third child was treated with Alinia initially for Lyme et al and when we finally tested her she was clear of parasites. DH had two parasites and took almost a year to clear. Edit: However, it is hard to test for some parasites (video talks about difficulties) and not even sure if there is a test for nematodes. Some comprehensive stool analysis just pick up 'unknown parasite' and is what we found in our kids. We used Metametrix for comprehensive. http://www.metametrix.com/ Reposting link to see if it helps/works. It will be interesting what your GI Dr. says about parasites for DD. Streaming Media Platform

What an awful disease!!!!!!!! I do think the tremors could be related. The GSE seems the likely source and would stop completely until you talk with LLMD on Monday. Hopefully things will settle in the same amount of time since starting... 72 hours. GSE is a cyst buster too and maybe why you are seeing such a immediate and huge response. As for constipation. Have you treated for parasites? We had this issue with younger DS and has resolved since using digestive enzymes and treating heavily for parasites. I posted an interesting video regarding Autism and parasites and the use of MMS recently. I am not endorsing the use of MMS as it is not FDA approved. However their perspective is interesting on potential number of parasites involved in ASD causing inflammation in the intestinal track, constipation and GI issues. It might be worth watching video... I am reposting link for you. We've treated parasites with Alinia (at least six months) and MSM 'natural sulphur' which treats nematodes. It might be worth a shot treating for parasites or at least discussing with LLMD since you've had so many GI issues. As an antibiotic Alinia provide a lot of cross over treatment for other TBI infections and viruses. Our LLMD uses it frequently. Here is the link. Broadcasting

I would ask your LLMD about vaccinations for 1 year old. I know, I know, it sounds like you took a lot of precautions but I would still worry. Here is our experience: All 3 kids have gestational Lyme et al and older DS had his first coughing tic 3 weeks after 4 year vaccinations, sudden on-set was 3 weeks post 5 year vaccinations, strep related illness and exposure to child with virus. With the younger twins we delayed the one year vaccinations until 18 months due to illness at time. After 18 month vaccinations they seemed to be sick regularly and as a result I gave them the flu shot and 2 months later at 2 1/2 years of age one was on antibiotics for potential PANDAS Diagnoses (OCD and rage behavior). We discovered Lyme at 3 1/3 years of age for both the twins.

Yes, we used phosphatidylcholine for a long time. Thought to help deliver herbals remedies to the brain. It has the consistency and look of egg yoke when mixed so many kids don't like it. We added it to orange juice with herbs. It was one of the many supplements we thought was helpful but did not have as obvious of improvements like we had with KPU treatment or MSM for oxidative stress. I am considering adding it back in since most of the remaining Lyme is thought to be in older DS's brain and eyes per ART. Edit: My son has not had elevated liver enzymes since using phosphatidylcholine and treating Babesia. Just prior his enzymes were elevating and eyes were slightly yellow so perhaps it helped more than I realized.

Both older DS and I have a severe allergic reaction to sulphur antibiotics. I was hospitalized for 3 days back in college due to allergy. Older DS added Bactrim to combo of antibiotics several months ago and within hours of starting he was 'perfect'.... no symptoms of Lyme/PANS for several days. About day 7 he felt sick, day 9 he started with a rash... day 10 rash was so bad we had to stop Bactrim. I was actually disappointed we needed to stop because I felt like it was the very antibiotic he needed due to immediate resolution of remaining symptom at the time. Our LLMD was considering desensitizing his body to the sulphur antibiotics so they could be used. I was paralyzed by the concept and we switched antibiotics as a result. I started researching why someone might have such a severe sulphur reaction and what I discovered it is most likely due to "oxidative stress". Since then I've focused on treating "oxidative stress" with high doses of MSM a natural sulphur which can be used if you have an allergy to antibiotics. I am currently taking 4,000 m.g., older DS takes 2,000 m.g. and twins take 500 m.g. Although, there has been an intense herx to MSM it has made "marked" improvement for everyone in our family. The improvement were so great with MSM, I started my younger twins who are not allergic to sulphur and they too had a huge jump up in their baseline. I am looking forward to seeing YL next week to show her how improved twin's rashes are since starting MSM. I am not sure if its due to improved oxidation or the benefits of having accidentally treated nematodes or both. Nematodes are thought to be a huge part of Lyme by some and even discussed in the movie 'Under Our Skin'. Regardless when something works, I stick with it and this is something that has definitely helped tremendously. About 48 hours after starting MSM I had my first 'Bartonella' like rash across my flank and only stayed for about 2 days. Older DS also had his first 'Bartonella' like rash exactly 30 days after starting MSM (also added Rifampin to combo'd antibiotics a week after starting MSM). The rash was also on his back and was only around for about 3 days too. Here is some information on MSM. http://www.msm-info.com/ If you should consider taking MSM make sure there are no additives. We use the Jarrows Powder sold at Whole Foods.

We have done both 3 hdIVIGs for older DS when we felt PANDAS was primary issue and we've not pursued hdIVIG for our younger twins. Our younger twins definitely have documented immune deficiencies: strep pneumo serotypes and Igg 1 & 3s which is one's ability to fight infection. We did find the hdIVIGs to be helpful for older DS but six months post his last treatment we had other issues like 'unknown parasite', food allergies 'severe', KPU and also discovered other chronic infections of Lyme et al. Although, we do not rule out the idea of hdIVIG for our twins we hope to bring them to full recovery without going that route. We know that hdIVIG was not a cure for older DS. AND, we have not removed tonsils that were considered to be kissing at one point in two children. Things that have helped tremendously throughout our journey has been treating viruses 'ongoing with herbals', KPU, oxidative stress, implementing a daily detox regimen, heavy metals, parasites and restrictive diet. Our twins are a work in progress but one is currently nearing symptomless status. She has been treated two years ongoing by 2 integrative LLMD and recently an integrative pediatrician that are helping us to address all these issues. We have not tested her by taking her off antibiotics yet so it is unclear if we will be faced with relapse. BUT, she maintains the high level of recovery even when faced with bacterial infections. From your post, it is unclear if you have explored things like methylation, food allergies, vitamin/mineral deficiencies, etc. Perhaps these are some simple things to explore in advance hdIVIG that might help tremendously.

Attached is a link discussing a unique treatment and perspective on Autism and parasites. It is worth the watch. I am no way endorsing MMS as a treatment protocol as it is not FDA approved. However, I have personally used it to eradicate a resistant sinus infection that lingered for 8 months while on combo'd antibiotics and it resolved in 1 1/2 weeks with MMS. Our entire family has been treated for parasites which helped improved everyones baseline. My DH took almost a year to treat 2 different parasites with antibiotics and herbal remedies. We have used MSM 'natural sulphur' for oxidative stress (different than MMS) with great success and is also fantastic for treating nematodes. For our family, treating parasite was/is a huge part of our successful treatment for PANS/Lyme et al. Marketing Videos

Recovery is a journey! I am glad to read you are discovering issues that may make huge advances for your family. When my friend went to replace her hardwood floors she found black mold under them!!! So, you are not alone in tracking down mold and finding it to be a problem. We've done the obvious stuff to abate when we moved into our home, repaired all obvious leaks, cleaned heating ducts, replaced all carpets, painted, new washer/dryer (regularly use TechnoFresh to clean out washer pipes), etc. AND, I am still not convinced we don't have mold/fungus issues as our house was built in 1951. We are doing ART muscle testing and done some lab work for mold and none of us appear to have a problem with mold/fungus which does give me some comfort. However, I just recently learned of a way to flog your environment so you don't have to replace surfaces potentially, I have no experience with it but happy to share what I know privately.

We also had Low WBC (all three) and periodic elevated liver enzymes (older son). Only one child was PCR positive for Babesia. All three have been treated or are being treated for Babesia. All three had great clinical response minus herx that can be extensive and scary. It takes 120 days to replace RBC (babesia is inner red blood cell parasite) and it took at least 4 months to see marked improvement in all three. One is on Mepron/Alinia for Babesia and has helped tremendously. Wishing all the best with treatment.

I thought I'd add this short little video regarding detox drink. Concept and products are similar to Health Force Vitamineral Green and Oxygen Supreme Drops or ChlorOxygen verses Supergreen and Prime PH. I've tried Supergreen and prefer the taste of Vitamineral Green.