sf_mom

In a hurry this morning. Here is a brief update. Our older DS is 99.0% recovered. We did not do any further IVIG with him since Jan. 2010. He still has immune deficiencies in all categories including IgG As of 30. One of his Dr.'s wants to do LD mostly but his LLMD is neutral on the idea. We are considering treating elevated nagalase to see if we can get subclasses to normalize or doing 6 months of LD treatments.

What antibiotics is your son on currently? I can't remember.... does your son have immune deficiencies? Was he IgA and IgM or which subclasses. The reason I ask is deficiencies in 1's and 3's is typical with chronic Lyme. IgA deficiencies typically means there is something else and in our case it was mold. Elevated Nagalase can indicate issues with viruses. Like MomToAlex stated there are many strains of Borrelia like Hermsi, Miyamotoi, Recurrentis. Some of these strains are not easily testable at this time. In the Bay Area Hermsi and Miyamotoi are more prevalent than Burgdorfori. Advanced labs is able to pick up on a spirochete/s but does not distinguish which strain they are finding. Most tests are looking for antibodies to specific proteins of Borrelia. When you limit the specific bands (standard western blot) you limit the proteins of these bacteria and why there is high rate of false negatives. If your child is NOT currently on combination antibiotics you might consider a trail of combination that specifically targets Lyme or Bartonella in advance of testing to see if there is symptom improvement. However, there is typically a worsening of symptoms first then improvement due to Herx response.

SSS: makes a great point. We always test subclasses the day before next infusion. Sometimes its important to stop treatment for several months to see if IgGs fall off after stopping.

You can specify age range results if clearly mark on order form. Lab corp has done it for us in the past. However, I think there is certain age in which it no longer applies (sorry I can't remember top end of age range). I think your son would be considered an adult. Your son's result look phenomenal compared to our children!! DR. K in CT is a neurologist who treats neuro-Lyme with IVIG along side combination antibiotics. He presented at ILADs last year. You might look around on-line for his talk on Lyme/IVIG. We are currently doing low dose monthly with our DD and its taken a while to see improvement. Are you doing HD or LD? Have you checked your son for mold yet? We found mold to have a huge impact our all our kids immune function. Also my friend's son with gestational Lyme subclasses really turned around when they treated elevated Nagalase.

You can do the Shoemaker panel and that would hopefully be covered by insurance. Like LLM we also had mixed results with Shoemaker panel and it wasn't hugely definitive for us either but helpful. Real Time Labs was surprisingly covered by our insurance. You can mark an area on their order form and for an extra $30 they will file with your insurance. Each follow-up test is $100 if you check appropriate box on their order form. I also recently learned that like heavy metals you may have a mold toxin issue but are not excreting the toxin's at time of test. So, a negative result doesn't mean you don't have a mold issue. The collective test results are important. Our kids were already on Cholestyramine when we tested them and they were dumping a ton of mold toxin's in their urine. Cholestyramine can cause a herx but in time they do improve. For DD, well beyond her previous baseline but it took two months. Prior to dealing with mold it felt like she just couldn't get past a certain level of recovery and if just one antibiotic was taken away she would regress within 10 days. You also have to make sure they are getting tons of glutatione. We nebulize glutatione but there are pills, liquids and creams. Whey protein (cold pressed - grass fed 'Tera's Whey') will help raise glutatione levels as well. The HLA marker your DD has is also not specific to mold. It also relates to biotoxin's. Lyme is just one type of bacteria that create biotoxin's. It could be just a biotoxin issue from bacteria and not mold at all. Cholestyramine will treat both biotoxin's and mold.

I wouldn't get your hopes up too much. As far as I know, Stanford PANS Clinic doesn't even support Igenex testing, understand Lyme nor did they support or understand more extensive testing with speciality labs like MDL, Metametrix, Genovia, Fry Labs, extensive parasite testing, chronic yeast, mold, environmental toxins, etc. If you are looking for more aggressive immune suppressing therapies Stanford may be able to help. In our situation, the chronic yeast pointed to a mold and parasite issue. Dr. P would be the best in assessing your son for those issues. Have you considered anything like HBOT with him? There is a clinic in Los Altos. HBOT will help with both infection and inflammation.

I thought I'd post this particular link. It explains the various tests for heavy metals. http://www.betterhealthguy.com/topics/heavy-metals

IV EDTA is the best chelator for lead. It can take a year or longer doing IV chelation to normalize metals levels. We did oral chelation with our kids last year but intend to restart IV chelation once our mold biotoxin levels are normal. It is common to see symptoms flair when using strong chelators because the metals attach themselves to viruses and other bugs. Often individuals will get yeast/fungus flairs when pulling. Interphase Plus by Klaire and Chelex by Xymogen have EDTA plus some other good stuff in them to help chelate. It is at lower doses of EDTA in these products so you shouldn't see symptoms flair too much. Interphase Plus will help with biofilms as well if its a problem. You are in experienced hands to treat heavy metals with Bradstreet.

All our children and me have similar heavy metals and similar ratios of lead and mercury to yours. One child has many more metals but still has same ratio of lead and mercury. Our house was built in 1951 and contained building materials with both lead and asbestos but was painted over or wrapped. Plumbing was old but we also filtered our water. When we tested our water we found it contained traces of lead. Many filters will not eliminate metals. Last summer we moved 1 1/2 miles away to a new construction house and we tested our water and also found lead. We now have a whole home filtering system that specifically eliminates heavy metals. I believe the metals could have come from me, from our home, from our children's school, from the bugs. Metals will cling to bacteria, viruses, mold, fungus, etc. Our children also have a mold issue. DD with the highest levels of mold and variety also has the most amount of metals and variety.... plus most compromised immune system, sickest child. We have done some heavy metals chelation with our children but are now waiting to do IV chelation after mold levels are is within normal ranges. Chelation can be a very difficult process because you are also pulling out the bugs. I am currently doing IV chelation every other week. I am off antibiotics but have been flaring with secondary infections when I do chelation with gum infection, bladder infection requiring me to restart antibiotics for about a week. Some people will flair with yeast or fungus when doing chelation. We did the urine challenge testing for metals. I repeat test every third or fourth chelation session and levels are dropping.

When DH got bit last spring we saved the tick and sent it in for testing including all co-infections. Our LLMD gave him 3 weeks of doxy until we got our test results back. In our area Borrellia Miyomoti is more prevalent than BB and is not testable at this time unless the tick is sent to a research individual. The rate of infected ticks CA is lower than in the NE. I understand about 50% of all deer ticks carry BB in NE. LLMDs will often provide antibiotic cream (Azithro) to treat area of bite topically as well. Something to consider if the head is still embedded.

SSS: I wanted to comment on your post. One thing I learned from Dr. G in San Rafael is those low in Amino Acids will have difficulty making IgG. We have recently tested our children's amino acids because they have such compromised immune systems. We tested through Dr's Data but none were deficient. On the flip side, Dr. M in Pleasanton is now treating kids with 'neuropsych symptoms' with very high doses of amino acids when deficient to help balance neurotransmitters. We haven't discussed her protocol in detail but we have talked about the successes of this type of therapy. We do get reimbursed for Dr. M visits as she is considered in network for our insurance. You would need to see her once a week for testing during protocol. It might be worth a visit to her. I have just breezed this article and haven't read much up on this therapy yet but thought I'd attach anyway. http://www.steinorthopedic.com/pdf/aminoacidtherapy.pdf

We too are dealing with chronic infections of Lyme et al. I am sure you have heard that steroids can suppress the immune response and therefore give infections a leg up. With that said and similar to Dedee's experience my friend with chronic Lyme has been on a low dose of steroids for over a year to help with adrenal fatigue with great result. Our older son who was born with Lyme also had a temporary great result with steroids when we first felt PANDAS was his only issue. However, I was given steroids while pregnant with twins starting at 35 weeks gestation for a full body rash. I did not realize I had chronic lyme at the time and the steroids were a disaster for me. My blood pressure sky rocketed and I started having about 6 seizures a day. Within about 10 days of starting steroids the twins needed to be delivered due to my bad state. It took several weeks for things to calm down post delivery. Then slowly I developed more Lyme like symptoms and at about 15 months post pregnancy had almost every Fibromyalgia symptom listed. All of these symptoms have resolved with treatment. We have not used steroids with our children since discovering Lyme as a result of my experience. We do use ongoing natural anti-inflammatories daily of Enhansa and Maxi-Flavone to deal with inflammation and occasional Advil. All our children's C4a's were tested and their results were normal even with a mold issue. C4a is an inflammation marker and should be tested. It can be used as a bench mark. Any result above 10,000 typically indicates a mold or biotoxin issue. However, like us a normal C4a result does not rule out a mold or biotoxins.

It is one's ability to detox mold related toxins or biotoxin's from Lyme (die-off toxin's). Please read my early post this morning or attached article. http://www.betterhealthguy.com/topics/mold

Please take my response as global to whoever is reading and not specific to your situation. My friend who had visible black mold problem in their home also came back as 2. on ERMI testing. They both had mold related 'POSITIVE' results from the mycotoxin urine testing. For example reference range for Trichothecene (black mold) is .18 to .20 and their results were both above 1.6. They are treating until toxins are within proper reference range of .18 to .2 Our ERMI testing came back as 97.0 for our home after a tree fell on it. Our home is now classified at their highest levels for mold exposure and we were instructed not to enter without a mask and gloves on. The mold was not visible and was behind walls and in eaves of home. When you do Shoemaker and HLA marker you are looking for both Lyme (die off) biotoxin's and mold toxin issue. It is how the body is being impacted by one or the other. If the body is unable to detox these particular toxins and daily cholestyramine can be very helpful. The mycotoxin test only looks at mold related toxins and will provide a baseline for treating and type of mold toxin issue. Order of testing should be when investigating mold and biotoxin's: VCS: On-line test at $15 Shoemaker panel: (should be covered by insurance) It is the following test: MMP-9, TGF-b1, VIP Plasma, VEGF, Leptin, MSH along with HLA marker (genetic testing for ability to detox biotoxin's and mold toxin's) Real Time Labs Urine Mycotoxin Test: Tells you what type of mold and level of impact. For us, its acting as a baseline for treatment. ERMI testing of home: This will tell you if your home environment is contributing to illness. The mold doesn't always come from the home environment and why it is listed last. If you are aware of a mold issue in your home you must abate or disclose issue prior to selling. Those with Gluten sensitivities or Celiac's antibodies should be testing for mold as well. These particular antibodies cross react with mold toxins antibodies. Mold toxin's/biotoxin's are very immune suppressing, very inflammatory, can lower WBC count, open the door for additional infections and often will prevent an individual from making progress with antibiotic therapies. If you can not detox mold toxin's they will only circulate in the body until treated. In our situation, our entire family did make progress with Lyme treatment. However, our older son has a few lingering symptoms that are considered very mold toxin related 'stamina, brain fog, chronic cough that came and went, short term memory issues'. Had headaches, frequent urination and was 'just not feeling well' at times but those resolved fairly quickly after moving and detoxing started. DD who is impacted the most of all our children by mold toxin's also improved with antibiotic therapies. She looked more ASD and presented with rapid cycling of moods, mood switching, OCD only on two occasions. However, we attempted to take her down and off antibiotics three different times. Every time she could not sustain baseline and typically regressed within 2 weeks. She just turned 7 and is still not night trained. Last night was the first time ever she woke up with a dry diaper. Mold toxin's can cause urinary frequency. We have been detoxing her since January.

We ran it through our LLMD. However, I would definitely give them a call to see if they would send the kit directly. Below is the specific test we ran. Its expensive at $600.00 'I think'. However, we are using it as a baseline and every time we retest after initial test it is only $100.00 http://www.realtimelab.com/healthcare-mold-and-mycotoxin-information We also did ERMI testing for our home via them.

Pulling mercury or any other metal can cause an increase in symptoms. When you chelate the response will depend on if there is an issue with metals, amount of metals and how well the body is detoxing. Metals bind to the bugs especially viruses. 100 mgs is very low dose and shouldn't have too much of an impact.

VCS: Visual Contrast Sensitivity Test: $15 on-line. Can indicate you are dealing with inability to detox lyme biotoxins or mold. http://www.survivingmold.com/store1/online-screening-test Shoemaker Panel (mold/biotoxin) - Real Time Labs Mycotoxin Urine Tests - Our C4a's were normal which led me to believe we did not have a mold issue. I wish we had done more extensive testing from the beginning. Biofilms and FL 1953/7 strain 'protozoa' test Nagalase Zinc/Copper ratios

Thanks for that perspective! I actually try stuff on myself or my husband first but have done a lot of off label treatments with our kids that have really helped i.e. Diatomaceous Earth for deworming, 35% food grade hydrogen peroxide baths/nebulizing, ozone therapies for biofilm's, ozone oils, coffee therapies for myself, oxygen drops, etc. We do talk to our Dr.'s about all of them as well. Once your DS stabilizes or is making headway with Lyme treatment definitely treat or test for Biofilm's. I just looked at your son's profile and noticed he predominately TICs? Our older DS TIC'd as well. TICs were very, very slow resolving in our situation. They came and went with herx's. In my opinion, the TICs represent that our son was still dealing with something. I highly recommend checking your son for mold as well if you haven't already. Mold toxins/biotoxins can truly present hurdles in the Lyme recovery process. Often those with an issue make very little headway with treatment. Tests for mold/biotoxins: Shoemaker VCS test: Its a $15 on-line visual test to determine if he is having difficulty with mold toxins or biotoxins. http://www.survivingmold.com/store1/online-screening-test HLA Marker: body's genetic ability to detox mold and biotoxin from Lyme die-off Shoemaker Panel: 4 different blood tests to help determine impact of mold toxins/biotoxin's. Used as bench mark for recovery Real Time Labs Urine Test: Provide the actual type of mold toxin you are dealing with internally. Used as a bench mark for recovery. They also do ERMI testing for home.

Biofilm treatment can cause an extensive herx hence any existing symptom can flair or new ones develop. You are bringing out the bugs with biofilm treatment. I would wait for Dr. guidance on this issue. We did not start biofilm treatment until we were well into the treatment process. We actually tested older DS and younger DD for biofilms via Fry Labs. Older DS was found to have "SUBSTANTIAL" biofilm communities 3 years ago. We recently reran the tests and he now has "FEW" biofilms. The recent results go hand in hand with his recovery process. He has very few symptoms and maintains a high level of recovery but is still being treated for the few symptoms he has left while we detox for mold. DD also has biofilms and a biofilm forming organism called FLT 1953. She also has highest levels of mold our LLMD has ever seen. We are not currently treating her for biofilms until her mold toxin levels drop and she physically able to handle treatment.

Our kids have been treated for Lyme for the last 4 years. Treatment has pulled our twins that just turned 7 off the ASD spectrum and they no-longer have any OCD. Older DS no longer has any OCD either but more traditional symptoms of Lyme and is still being treated. The OCD came and went and sometimes with HERX's/Antibiotic rotations. We are in the San Francisco Bay Area. Our children have several Dr.'s that are local and happy to outline them via private message (upper right hand corner of forum page). All of our Dr.'s treat children with PANS/PANDAS.

One thing I would check prior to IV antibiotics...... would be to completely rule out mold. Real Time Labs Urine Mycotoxin Test and Shoemaker Panel are a must in my opinion. Our experience is mold can really suppress the immune response, antibiotic therapies often only keep symptoms in check and typically there is very little improvement on them with tons of inflammation. Steroids can help... good friend of mine with Lyme et al is on a low dose steroid for adrenal fatigue and they are necessary to maintain health currently. Ultimately, she has adrenal fatigue that is being driven by continued mold exposure, it is visible black mold leaching through her roof from air conditioning unit. She is in the process of abating the home. She is no longer on antibiotics for Lyme et al and only detoxing for mold. Our experience: DD was only able to maintain recovery, each time we eliminated one antibiotic she seemed to regress, she has immune deficiencies across all subclasses, she is currently getting monthly IVIG, she also has the highest levels of mycotoxin (mold) results our LLMD has ever seen. She had more ASD symptoms than PANS. She also showed Gluten sensitivities and antibodies for Celiac's..... which can indicate mold as antibodies cross react with each other.

I had this particular symptom. It was awful and for me it was a herx. I also developed what looked like little pinpoint sores that intensely itched. I did resort typical steroid cream to abate itchiness. It took about six weeks to resolve to a tolerable level. It still comes and goes but only about 1% of what it used to be. For some reason, I always think of it as parasitic in nature 'as bugs' as well. We have also had allergic response to sulphur. We had mild itchiness (comparatively) with rash that spread from stomach/chest area to full body within 10 days of starting new antibiotic.

35% Food Grade Hydrogen Peroxide dilute down per information on-line. It should take care of any staining. I brush my teeth and scrap tongue with it. Here is where I purchase. http://www.purehealthdiscounts.com/1gal1db2s.htm

Yes all three of our children have immune deficiencies, PANS, Lyme et al. Only our 7 year DD gets monthly LD IVIG. Typically with chronic Lyme deficiencies are common in the IgG 1 and 3 subclasses. All of our children have immune deficiencies in all subclasses inclusive of IgAs and IgMs. Our DD was the most immune deficient with IgAs at 21. She had immediate improvement with IVIG. However, after her 4th monthly IVIG she seemed to be regressing or her immune system finally started to activate by fighting infections and she appeared to be worse. We rotated her antibiotics to address the Lyme and Bartonella "more aggressively" and her recovery has taken off again. For us, the antibiotic aspect of treatment was as critical as the IVIG. Our children are not fully biologically related (two children were conceived via donor egg). All have similar immune deficiencies and all have gestational Lyme. We feel that the black mold exposure from our prior home was probably adding to the load on their immune system and probably why they had deficiencies well beyond just the 1 and 3 subclasses. There are a couple of LLMDs versed at treating with LD IVIG. You might research Dr. Katz from CT. He is a neurologist who treats Lyme et al with LD IVIG and versed at psychiatric presentation. Here is one blog post. http://lymediseaseresource.com/wordpress/happiness-istotal-recovery-from-chronic-lyme-disease-ivig-part-one/

If you are overly concerned about antibody results (positive/negative) there are alternative tests that can help you further confirm Lyme. For example, if your child was positive or IND for Band 31 you can run the Epitode Band 31 Test that looks for the antigen of Lyme not antibodies. Its like finding the DNA. It would not require another blood draw as Igenex keeps the blood sample on file for several months but would require a lab slip from your Dr. Or you could do the Dot Blot test. This particular test looks for the antigen in the urine. We collected urine days 3, 5, 7 after starting Alinia (anti-parasitic/antibiotic know to bust up Lyme cysts). The antibiotic creates die-off which is then able to pick up antigen in the urine.