GraceUnderPressure

That's great information,  Thanks. I know I have a long way to go, my son is so difficult to deal with because of the Bart, I know he has heavy metals and he's MTHFR like I do but don't now specifics. I was reading Dr. Amy yasko and she talks about A CBS mutation that is part it methylation pathway. I have not done genetic testing on him but know genetically he has a mutation for mold susceptiblility.  This mold for. At my request is sending me Tox ease, I think it has a couple herbs in it, I'm worried about detoxing due to seizures.he is very stubborn on diet but I can work on that, thx for the websites. Just trying to get into a Dr. We went to Jemsek early on and went 3-4 times and you always meet with a assistant , $400.00 per appt. He put him on 3 antibiotics at once and he could not tolerate it., around that time we discovered mold and went to new Dr. as I said she did not treat the Lyme and he just got the Bart rash a month ago . He has not been tested for coinfections, I know he could have more than one. Jemsek did igenex western blot came back positive . 

It does sound like you need to switch Lyme doctors, since yours won't treat him for Lyme or Bartonella. Did they ever test him for Lyme and coinfections? When it's this long-term and complex, there is always more than one infection going on. You can probably get LLMD recommendations on this forum if you start a thread letting everyone know you're looking for a Lyme doc in your area.
It sounds like your house may not be mold-free yet, and that is an absolutely essential first step. An air test won't give you a true picture of what's going on in your house. The ERMI test from Mycometrics is the best test, and if that comes back positive, it may convince your husband that more needs to be done.  Also, there may be more to detoxing mold than just cholestyramine. Read the book Mold and Mycotoxins - Current Evaluation and Treatment by Dr. Neil Nathan. He treats different classes of molds with different binders including activated charcoal, chlorella, and bentonite clay, in addition to cholestyramine. These are things you could do at home without a prescription. His website is a great resource too:http://www.neilnathanmd.com/  I've spoken to him on the phone a few times and he is very knowledgeable and experienced.
Have you read about the ketogenic diet for siezures? I haven't researched this much, but have read about it here and there over the years. This may be something to look into, as it will simultaneously eliminate all the typical allergens others have mentioned - gluten, soy, dairy, sugar.
The picture you posted is definitely a Bartonella rash. We've started the Buhner protocol for Bartonella because despite years of treatment with antibiotics, our 17 year old still has it. He didn't have the rash to start, but developed it on his back 3 years ago and it's never gone away since. I know Buhner seems overwhelming, and I avoided even considering it for years for just that reason. However, there's a mom on this forum who healed her daughter completely with Buhner, and my brother-in-law is now having success treating his Lyme and coinfections with it. I would recommend just starting with his book on Mycoplasma and Bartonella, since you know for sure you're dealing with Bart. Once you read what he has to say, you start to understand how this infection works and why antibiotics are rarely enough. Even if you decide not to do his protocol, you'll have a much better understanding of what you're dealing with and may want to just pick and choose a few herbs to see if they help with symptoms. A lot of the herbs he recommends target inflammation in the body, and he explains why this is crucial to healing. We are planning to continue antibiotic treatment for while getting up to speed on the full protocol, as I don't think the antibiotics have been useless and Buhner even suggests that using abs AND herbs can have a synergistic effect. I've found the Buhner Healing Lyme and Coinfections Facebook page to be a good resource: https://www.facebook.com/groups/1441091676154216/
Also, I totally agree that heavy metal testing is important! Heavy metals can really wreak havoc on the immune system, and if your son was vaccinated, he is in the age range that received a large number of doses with the mercury preservative Thimerisol. Also, if you or he has amalgam fillings, that can definitely contribute as well.
I recently found a blog I really like  called the Real Food Rebel: http://realfoodrebel.com/ She followed the Wahl's Paleo diet, not ketogenic, but I found a lot of useful information here.
Another great resource is the Better Health Guy blog: http://www.betterhealthguy.com/
 

My heart breaks to read this but I am also encouraged by a parent that is striving for healing and being that  wonderful fighting advocate that these poor kids so very much need.   I have two children.  Both with difficult stories.  Very similar to yours.
  Firstly, I will say there was no single organic reason for their fall .  Everyone is different so for some its treat the lyme of mold and bingo the child heals.  My oldest has the  marks and we were told too that they were stretch marks .  He is tired all the time, easily overwhelmed and tics. Our youngest was home-bound for years. What has worked for us?   1. Clean eating.  They both have detox issues so every time we treated for Bartinella/Lyme they would fall apart on even the smallest herb or anti B.  UHG So we could not do much.  When they were at their worst they were very sensitive to yeast and Molds but as they healed Mold became less an issue. NOW Most foods they eat are organic, lots of veggies and fruits, grass fed beef and chix along with cold water fish  2x a week (good for brain inflammation) We removed Gluten/dairy/soy.  The immunologist (conventional from big children's hospital) believes that certain kids suffer from innate immune responses from certain trigger foods and these three she found to cause inflammation effecting brain the most.  Huge difference for my youngest especially. 
 He is  also supper super thin and she has him on amino acid plant based or bone broth based protein shakes between meals and we use high fat organic coconut milk in can. His mind began to clear in a few months just by cleaning up diet.  2. Having Bowel movements 2x a day helped their poor detox for sure. Increased pure water and actually used fiber powder for a while until they both go now 2x a day.  3.  Good counseling because even if its caused by something outside of themselves the  chemistry is still off and the OCD and anxieties/depression are there and by learning how to deal with these emotions better help's them navigate thru these horrible waters.
 As we treated our youngest son for Bart all his emotional issues (agoraphobia, Bi polar, OCD) disappeared.  WE used low low low dose SSRI and nutritional lithium as well.  WE continue to treat yeast, bart with herbs and cycles of 5 day Tinizidol for gut bacteria.  Both are NOW able to handle the treatment bc their bodies are functioning better. Diet was a huge life style change and took me 3 years to finally own it and implement it.  Best thing we ever did. Not the cure ALL but huge piece of the puzzle for us. Now not everything that comes our way causes them both to fall apart and start over.  They are beginning to strengthen the terrain so that the genetic predispositions  don't  derail them at every turn. Keep searching, praying and never give up!!!       

Thank you for your response, I'm going to try and call a new Dr. I've been reading about because yes you are right, it is so overwhelming to me. My son also has grandmal seizures and stopped taking his depakote a year ago thinking that it was making his brain slow. I'm concerned about doing anything without a Dr. to cause it to happen. Has your son been treated  by a Dr.?  If so how long before you tried the lomatium? Here is my son's rash.  It seemed like it was fading a little, I noticed it about s month ago, foes this rash come and honor does treatment make it go away? I don't see him/ body much as he covers himself up in a hoddie and isolates himself in the room. He doesn't want anyone to see him even when I bring food he totally covers himself with a blanket .  Yes this site has been informative and a comfort.
thx

We got our son tested for bartonella thru Igenex.  It came up negative, but our LLMD at the time (a researcher & teaching dr in Missouri) said there are at least a dozen forms of bart so it doesn't mean a whole lot. 
My daughter also has bart & I realized it when we were doing swim lessons years ago because at the time she was still skinny as a twig & I noticed she had what looked like stretch marks on the backs of her legs.  Like your son, my daughter had never been fat - nothing had stretched her skin so stretch marks was very obviously not the answer.  Thankfully I had just found this forum & suspected it was a bart rash. That purplish to reddish striated rash is pretty distinctive.  I'll post a pic of my son's rash on his leg (he's also never been fat & his skin has never been stretched out by anything), but if you google "bartonella rash" and click on images, you'll see a lot of pictures of them.  That actually helped with my family's skepticism - seeing my pix of the bizarre rash proved to them that there really is something out of the ordinary physically going on with my kids & mainstream medicine has no clue how to deal with it.
I've looked at Buhner's protocols and felt the same sense of overwhelmed confusion so I'll continue watching this thread, too!  Someone pointed me to Dr Zhang's book to learn more about his protocol, but a friend of mine just diagnosed with Lyme was telling me about Dr. Rawl's book "Unlocking Lyme" that she's reading.  It all gets so confusing.  If only there were pat, straightforward (affordable!) answers available.
FWIW, my son says that of all the things we've tried, lomatium (we get it as SEES-plus capsules from Barlow Herbal.com) has done the most to improve his symptoms.  Fair warning, though, it can cause a rash initially which does go away after about a week but itches miserably in the meantime (ours was actually like german measles which made me wonder if it releases viruses - including vaccine viruses - sequestered in the body) so if you do decide to try it, be sure to follow their instructions about how to minimize that possible effect.  I didn't pay enough attention to that (in fairness, my husband had gone into the hospital for an aneurysm during the time we had started), and because I didn't realize what was going on till it was fully upon us, we had to just ride it out.  Which made for a pretty miserable week.  Afterward though, my son said he felt like he could think clearly for the first time in years.

I would encourage you to check with people on the forum at LymeNet Europe
http://www.lymeneteurope.org/forum/
 
Even our painfully conservative CDC states:
"In Europe, endemic from southern Scandinavia into the northern Mediterranean countries of Italy, Spain, and Greece. Incidence is highest in central and Eastern European countries."
 
Our family appeared to have close to zero risk for Lyme - we almost didn't even test for it but the moms here strongly encouraged me to do it anyway just in case (God bless them!). Even our PANDAS dr was stunned when it came out clearly positive. Our LLMD said that though it is impossible to know for certain, it seems most likely that my husband picked it up from his dogs, passed it to me, and then I passed it on to our children while I was pregnant with them.
 
Testing for co-infections is even trickier - for example, my ds came up negative for bartonella from Igenex's testing, but his LLMD said they only have tests for 2 types of bart and there are about a dozen known varieties. That's before you start looking at the rates of false negatives because so many of these germs can evade detection. Many LLMD's encourage Igenex testing for Lyme but don't bother with the coinfections because of that.
 
My ds developed tics around age 4, though we didn't recognize them as such at the time and referred to them as "habits" (in fact, around age 7, I started looking into OCD because I thought that might be his problem). I noticed that the tics did not wax and wane like Tourette's usually does; instead they just kept getting a little worse every time something hit his immune system (infections, allergies, vaccines, etc). He didn't actually qualify for a Tourette's diagnosis until around age 13, but even then the tics were only annoying but never really bad until his younger brother got sick summer of 2010 with what was most likely mycoplasma pneumoniae (which he had all the clinical symptoms of but still tested negative - but myco p is another one of those germs that is super hard to detect).
 
Well, ds got only mild symptoms of his brother's illness (he never got really sick which we used to think was because he had a really strong immune system but now we understand was actually because the Lyme & bart had crippled it), but his tics exploded. It was so bad that my dh was thinking we might have to institutionalize him. My internet searches kept turning up links here at latitudes, & I realized that even though my ds had no significant history with strep, his story still sounded like so many of the kids here.
 
We consulted a PANDAS dr. Even though all ds's strep testing was negative, he still responded positively to antibiotic treatment. We did try 2 IVIG treatments. The first one relieved his tics for ~1 week, then he got exposed to a cold virus and most of it came back. The second treatment showed no effect whatsoever. My understanding is that that is what happens when there is still an underlying infection that needs to be addressed. The IVIG can help with correcting the autoimmune reaction only if the germ(s) triggering that reaction have been eliminated.
 
Believe me, I know how hard it is to deal with the ticcing, and it often seems like everything makes them worse and nothing makes them better, but the high ASO shows that this is more than TS. And based on the results you have seen thus far, it seems reasonable to believe that this is also more than just strep.
 
If your son's symptoms fit the clinical picture for Lyme or one of its coinfections, an LLMD will give him a trial therapy and see how he responds. It can be hard - my son's main symptom is ticcing & every time we find something that works, we know because the die off initially makes the tics get worse. We have to go slowly so it doesn't get too overwhelming. Check with the members at LymeNet Europe - they can probably help you find what help is closest to you.

One of my kids was texture aversive on top of gagging on anything vegetable-green. It took me years of being firm & rewarding even tiny steps forward so that he now, at age 10, asks for seconds on green beans & is up to a serving spoon of broccoli or spinach (his most difficult veggies).
 
It won't happen overnight & you will frequently feel like it is never going to happen, but persevere! It is very hard when they are too little to understand - thankfully my dh had bought a dvd of old Popeye shorts that my kids enjoyed watching which helped me convey to them that spinach helps make our bodies stronger which decreased their resistance. I let my ds start with ridiculously small amounts so that he felt some control over the process. With the little ones, hiding pureed veggies in their food might be the best way to get those nutrients in there. We started with finding healthier versions of their favorite foods. It wasn't much of an improvement, but it was still an improvement & got us started. Another tactic that worked well for us was mixing just a little bit of the healthy stuff in with the old food, & gradually increasing the amount of the healthy food while decreasing the amount of the old stuff, until we were used to the taste and didn't mind it anymore.
 
I remember being totally overwhelmed when our nutritionist was explaining the foods we needed to eliminate & was so grateful when he told me it was okay to start by decreasing the amounts and just try to keep working my way toward that eventual goal. We needed that time for both our bodies & our minds to adapt! The essential point is - don't worry about the size of your steps or even how long it takes to do it, just keep working towards taking them!

Glad to hear the good report, Grace...prayers were answered. Amen, qannie47

I so totally second what you're saying - thank you for saying it better than I ever could! The wonderful people who take the time to post their questions, research, experiences and answers truly have saved our lives from the dark hole we were in 3 years ago. We are still struggling and still have a long way to go, but just the fact that we are crawling forward instead of spiraling down - the fact that we have hope where we were once sinking into the pit of despair - is HUGE! My most heartfelt thanks to you all as well! I pray for God to bless all the folks on this board and that He will grant us a cure for these awful infections and the autoimmunity they cause!

One of my kids was texture aversive on top of gagging on anything vegetable-green. It took me years of being firm & rewarding even tiny steps forward so that he now, at age 10, asks for seconds on green beans & is up to a serving spoon of broccoli or spinach (his most difficult veggies).
 
It won't happen overnight & you will frequently feel like it is never going to happen, but persevere! It is very hard when they are too little to understand - thankfully my dh had bought a dvd of old Popeye shorts that my kids enjoyed watching which helped me convey to them that spinach helps make our bodies stronger which decreased their resistance. I let my ds start with ridiculously small amounts so that he felt some control over the process. With the little ones, hiding pureed veggies in their food might be the best way to get those nutrients in there. We started with finding healthier versions of their favorite foods. It wasn't much of an improvement, but it was still an improvement & got us started. Another tactic that worked well for us was mixing just a little bit of the healthy stuff in with the old food, & gradually increasing the amount of the healthy food while decreasing the amount of the old stuff, until we were used to the taste and didn't mind it anymore.
 
I remember being totally overwhelmed when our nutritionist was explaining the foods we needed to eliminate & was so grateful when he told me it was okay to start by decreasing the amounts and just try to keep working my way toward that eventual goal. We needed that time for both our bodies & our minds to adapt! The essential point is - don't worry about the size of your steps or even how long it takes to do it, just keep working towards taking them!

Good luck and prayers! Can you give me the name of the CO LLMD please?

I do believe in prayer and the Lord's grace, said one for you and your kids.

Good luck. Saying a prayer for you!

Prayers for your family. Remember that God is with all of you. He is with you on this journey. He has and will provide for you guidance, strength, faith, and answered prayers. For myself, in my darkest hours, God in the end has never let me down....

Hey dear life-saving friends!
 
I haven't had time to post recently as things have been so crazy (in fact, it is 5 am over here & I am still trying to get everything packed as my ds was ticcing so bad that he couldn't get upstairs to bed & needed me to stay in my room because I was somehow messing him up - ugh) We are leaving out for our first visit to our new LLMD in Colorado and just wanted to ask for prayers for a safe trip and especially a successful, healing trip! (This time we'll be taking our dd with the bartonella symptoms as well as our ds)
 
I'll probably be back on here by the end of the week to ask tons of new questions, lol!
Thanks all!
~Grace

We did it as part of the study as well. Our biggest reason was because our son had no history with strep, excepting a possible case when he was 6, but his case was similar to the PANDAS kids I read about on here. It confirmed for us that he was a PANS kid & that it was indeed worth our time & $ to initiate this medical journey. Shortly thereafter, we discovered he was positive for Lyme (after almost blowing off the test to save money because we were considered such a low risk for it - even our PANDAS doc was surprised).
 
It has pretty much saved our son's life, but if he had a known history with strep as you say your son does, I seriously doubt we would have bothered spending the money as that would virtually eliminate the uncertainty our family was dealing with when we first learned about PANS.