Does Pandas/Lyme go in cycles?

[rowingmom]

Metanx:

Generic Name and Formulations:
L-methylfolate calcium (as Metafolin) 3mg, pyridoxal 5'-phosphate 35mg, methylcobalamin 2mg; caps; lactose-, yeast- and gluten-free.

 

The dose of Metafolin (3mg) seems a little high, and could be causing problems.

 

We started out at higher dosages as well, per or LLMD. Our were originally 1000 ug metafolin (1 mg), 30 mg P5P and 2000ug sublingual methyl B12 daily. After LLMD noted hypermethylation reactions we decreased to this dosage, but only dosed on Mon, Wed, Fri.

 

The methyl B12 is included in the capsule, and may not be absorbed well through the intestinal lining. We find sublingual works well for that reason.

 

Some other issues may need to be addressed (CBS, SOUX) before methylated Bs are started, or you will be just causing a log jam in a different area of the methylation cycle.

 

http://www.mthfrsupport.com/other-gene-mutations-that-must-be-addressed-before-starting-an-mthfr-protocol/

 

Overmethylating can be as problematic as undermethylating. Check LLM's archives. She has addressed this issue before.

[Nick12]

Thank you. It will be so hard to get the dosage right but will start out very slowly. Just wish things would calm down so we could get a baseline first. We do b12 injections and have for years but just found out about the mutations last month.

[Dedee]

My daughter has lyme & bartonella. When we first start antibiotics we have to start very very slowly at a low dose and work up slowly. Other wise her herxing is intolerable. We increase the dose every 10days or when her behaviors level off and we never start two antibiotics at once. Another thing that helps is using things that inhibit the cytokine cascade. This would be things like Japanese Knotweed or Cordyceps in high doses. You can read Bruhners book on Lyme co-infections to learn more about limiting cytokine cascade for infections. It's very helpful.

 

Lyme has an approximate 30 day cycle, so we see my daughter regress around that time. Most LLMD's will say between 21-30 days depending on the type of lyme infection. This is actually what convinced me that my daughter was positive for lyme. I started charting her regressions and it was pretty amazing how cyclic it was. Scary really. I don't remember if you said you had an LLMD or not, but sounds like you need one. Most LLMD's use Igenex testing and then diagnose by clinical symptoms and not test results alone. If your physician will not do Igenex testing, find another physician. This is not standard LLMD practice. Neither is ignoring clinical symptoms. Best of luck.

 

Dedee

[Nick12]

Thank you. Our doctor did use Igenix lab BUT I am not sure he is keen to the behavioral changes the abx cause. It was never suggested that I start antibiotics slowly. As for a LLMD, another mom and I are desperate for a doctor that believes in Pandas and is an expert on lyme. I'm not even sure what an LL stands for... will google to find.

[Dedee]

Ok, I went back and read your posts again. Let me put in another plug here. Your physician may be willing to prescribe antibiotics but he doesn't have the knowledge to help you. For instance, it isn't enough to tell you this is just a herx let's tough it out. No, an LLMD will tell you how to minimize your herx, how to increase detox and when to call if herxing gets too bad. You should not be left to figure this out on your own. As I said, you should be given guidelines on how to start the antibiotics slowly, how to increase slowly to minimize this and what is considered "normal" reactions vs. abnormal. This is where your LLMD is worth what you pay them. Get one.......ASAP!

 

Dedee

[Dedee]

LLMD means Lyme Literate Medical Doctor. They are specially trained by ILAIDS.

[Nick12]

Great! Just found a site that helps locate a LLMD. Thank you tons.

[Hopeny]

How much -LMTHF? Too much caused rages, skin picking and other stuff for my DD. My DD currently takes 200 MCG ( that's MICROGRAMS) a few times a week with B12 in the methylcobalamin form. I was giving her 2.5 MG (10 times the current amount) daily. It was WAY too much. I stopped for a long time and have now started back with the 200 MCG which she seems to tolerate. LLM on this boards uses a minute does of 67MCG if I recall correctly. She has one copy of 677T. I was hoping LMTHF would be the be all end all for us, it wasn't.

My DD has Lyme & Co, PANDAS (with the elevated ASO component) and Myco. Lyme definitely waxes and wanes, that's why she went so long undiagnosed. We never put the pieces together until she completely tanked. With time and treatment she is at about 98%. It takes time and unfortunately some trial and error.

[Nick12]

L methylfolate 3mg, pridoxal 5 35 mg and methyl cobalamin 2 mg.

Sounds like L methylfolate was way too high.

[rowingmom]

Great! Just found a site that helps locate a LLMD. Thank you tons.

 

Good for you. I hope you can find someone in your vacinity.

 

But just a heads up: you can't even depend on a LLMD to know everything about herxing, mutations, inflammation, cytokine pathways, coinfections. They will help you out, but you really need to learn as much about EVERYTHING as you possibly can.

 

Our LLMD didn't tell me about detoxing, I learned about it here.

 

Our LLMD started DD on supplements for MTHFR before we even tested to find out if she had any deletions, and the dose was much too high. I learned to start low and slow here, and that overmethylation was as bad as undermethylation.

 

I learned about the usefulness of anti-inflammatories here, and expanded on that by adding what I learned from herbalist Stephen Buhner.

[LNN]

Hope is right. My DD takes 67mcg of this product every other day http://www.holisticheal.com/methylmate-b-nutritional-supplement.html and one sublingual tablet of this product http://www.amazon.com/Source-Naturals-MethylCobalamin-Flavored-Sublingual/dp/B001G7R8J2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1382128665&sr=1-1&keywords=source+naturals+methylcobalamin+vitamin+b-12 When she took the B12 without sucking on it first, it had little effect. It seems to work much better when taken sublingually.

 

It took several months of trial and error to find the right doses for her. Too high brought on the same bipolar mood swings as having too little. My personal bias is to use products that have only one thing in them and then, once you find the right dose of each, then you can look for a combo product that has the ratios you need. Most adults who start out treating their MTHFR issues start at 400mcg. They may eventually go up into the grams, but that's not a good place to start IMO. For a child, start with one drop of the liquid (67mcg) and go from there, waiting a week before moving up, then backing down if you see a return of anger or anxiety.

 

You don't necessarily need P-5-P for MTHFR issues. It can help people with detox and to support the formation of gluathione, but depending on your other genetic mutations, you may or may not be able to tolerate a lot of it.

 

You'll also find that lyme can cause rages. But i think you've been given some good advice here and hopefully this will be one piece of the puzzle for you.

[Nick12]

It certainly sounds like we need to check to see if the micro plasma that we had a year ago is still a factor AND it seems that the script for the supplement had doses that would be way too high. Plus, we started giving one a day never thinking that they would create all our current issues. After things calm a bit I will start with super low doses and add in gradually. I also think you are right in that the p5p seems to be another supplement he can't tolerate.

[momcap]

Wow, can I ever relate to your post! My DS10 also cycles, and on top of the cycling he has a brutal October flare every year. He was also a nightmare on Augmentin - so bad that he should have been hospitilized. We saw die off reactions with other abx, where he would get flu-like symptoms along with behaviour regression for a few days up to 2 weeks, followed by huge improvements. But his augmentin reaction was NOT a herx (IMO). It was all behavioural (mostly rage, aggression, and panic) with no relief for a month straight, and no later improvements. He had a similarly brutal reaction to Biaxin. Now that I'm researching methylation I realize he can't tolerate sulfa containing drugs or foods.

 

I have a couple of thoughts on the methylation/MTHFR discussion in this thread, as I have been researching this like crazy the last couple of days since receiving our 23andme results. First, did you test for other mutations, or just MTHFR? We just got results on the 23andme testing, and it was a total eureka. Along with MTHFR and a whole host of other heterozygous mutations, my DS has 2 homozygous mutations of COMT. He can not tolerate any methyl donors since he already has too many floating around. Mentax sounds like a whole boat-load of methyl donors. It could be possible your DS also has COMT mutations. If so he would benefit from hydrox-B12, rather than methyl-B12, and anything that starts with "methyl" should be approached with extreme caution. Here's a little blip on COMT:

 

COMT Mutations

COMT (catechol-O-methyltransferase) helps break down certain neurotransmitters and catecholamines. These include dopamine, epinephrine, and norepinephrine. Catechol-O-methyltransferase is important to the areas of the pre-frontal cortex. This area of the brain is involved with personality, inhibition of behaviors, short-term memory, planning, abstract thinking, and emotion. COMT is also involved with metabolizing estrogens.

COMT (-/-) individuals can usually break down these neurotransmitters efficiently, but COMT (+/+) individuals may have trouble breaking these chemicals down from impaired function of the enzyme. With a COMT + status, people may have trouble with methyl donors. This can lead to irritability, hyperactivity, or abnormal behavior. They also may be more sensitive to pain.

 

Another thought, there are different types of MTHFR mutations, and from what I'm reading, the recommended treatments are not the same. My son is MTHFR A1298C + which, unlike the more common C677T mutation, does not lead to elevated homocysteine levels. It would be helpful to know which MTHFR mutations your DS has, and to treat them specifically.

 

Final thought - according to the methylation heart-fixer document which LLM has posted here, it sounds like it is critical to address CBS mutations first. Any other mutation "fix" will only get bunged up at the CBS level, unless that one is addressed first.

 

I'm new to all this methylation stuff, so I hope I got that all right. Hopefully someone more experienced will chime in if I'm off. I think it would be well worth the $ to run 23andme (only $99), if you haven't done so already.

[Nick12]

I will look up the testing you did. Your experience sounds just like ours with so many similar reactions to abx. The worst thing is the length of time we kept him on the augmentin. Whatever damage that did does not seem reversible and to add that issue to the fact that it's October again and things are escalating dramatically... Scary really. We almost did hospitalize my son this past week.. Knowing they do not believe in any of these issues...to avoid that, our local doctor has put him on a mood stabilizer... We know that is not going to get to the root of this, but desperate times.

As for you being new to all this... I can't believe how much everyone posting knows. I now have to do cyber school with my son and manage him constantly...leaves little time to actually research for the solutions. Thank you. Will do the testing.

[momcap]

My heart goes out to you! My son has been in the hospital (not helpful at all), and just spent 13 weeks (July, August, Sept, and part of Oct) in a residential intensive services unit for observation and medication review. Surprisingly they had heard of PANDAS, but they only had a very basic awareness of what they considered a new "controversial" diagnosis. That wasn't very helpful. They insisted Prozac was worth a try for his OCD, which resulted in him going manic and running away. They even had to call Police and Search and Rescue, who eventually found him in a forested area beside a river. STRESS!!! At the end of 13 weeks they recommended a mood stabilizer, which is actually helping a lot, but by no means a fix. Talk about desperate times! DS is only going to school for about 1.5 hours right now, which is an improvement, since he hasn't been to school in at least 6 months. He has missed as much school as he has attended over the past 5 years. We tried home schooling but it was a disaster. The only relief we had was a year of wellness when he was seeing a LLMD and being swamped in multiple antibiotics and supplements. (He's both IgM and IgG positive for lyme via IgeneX testing.) Of course that resulted in lots of herxes, so the wellness was interrupted by those, and by trial and error with some abx that were a disaster. Overall though it was amazing, but unfortunately not sustained. Every time we stopped abx all his symptoms came back. So now we're looking at methylation, trying to figure out why he can't stay well, since multiple high-dose antibiotics is not a life time solution for us.

 

If you do the 23andme I would follow LLM's advice in this thread:

 

http://www.latitudes.org/forums/index.php?s=0ec4ebf27282122a74b24778875525d9&showtopic=21211

 

She's our methylation guru and her advice was extremely helpful for me and gave me a great starting point!