LNN

My son has had a cough tic. It has resolved with his other tics as we've progressed through various Pandas/lyme treatments. In September, I developed a chronic cough - and eight weeks later discovered it was triggered by mold. Remediated the mold and the cough has gone away. My cough didn't disappear when I went to other locations because my body was never away from home long enough to settle back down. I think this symptom needs to be considered in the context of everything else before you can decide what the most likely explanation is. If antibiotics aren't feasible, you may want to see if an integrative doctor may be able to help, or a naturopath or homeopath. They often have other treatment options.

To join the Sunshine chorus, this is our LLMDs view as well. It seems unlikely that you can totally eradicate lyme once it has lived in you for a long time. They've done autopsies of animals they infected, treated, that showed no signs of ongoing infection, blood work looked like lyme was gone, and a year later were able to grwo spirochetes in a culture of brain tissue or spinal fluid from these animals. So our goal is to get it low enough that it's not the organism that's calling the shots. But to do that, it does seem that a "war" mentality is needed. Because the spirochette can assume a cyst form, an L-form, live in a biofilm, and doesn't replicate for 3-4 weeks, it can be a long haul to reduce the load even if your goal is just a truce. On top of that, as lyme alters the body more to its liking, it does seem to shut down the body's detox system and lead to a build up of metals and makes a nice home for viruses and such. So to answer your question, I think most LLMDs have come to the conclusion that co-existence is probably the most likely outcome, but getting there is still no easy or simple task. Much depends on how long you've been untreated, what you're sick with (beyond spirochetes), the environmental insults you've been exposed to and your genetic ability to run an efficient ship (specifically methylation, transulfuration and Krebs pathways). Not something you want to hear as you start out. Not everyone will have the same struggles. But the possible outcomes seem as varied as the individuals who walk this path.

My son's recovery was a bit slower than your son's, but we saw improvement in the first week, definite improvement by week 3, continued recovery for two months. We eventually found other issues that have gotten in our way but the T&A brought nothing but goodness from a few days post-op onward (I am virtually certain there was strep in the tissue that was removed so taking it out was a very good thing for us).

Oh, Dut. I was so sorry to see this post. I was actually logging in as a result of insomnia - triggered in no small part by your help in educating me on methylation and the excitement I'm feeling. If it makes you feel any better, I was in the dumps just two days ago, when DS hit a mental wall. Had my own chocolate chip and peanut butter party. Today DS was in a much better place again and my sails were lifted. It's never a straight path. DD in the meantime has been clinging to me for 5 days with a virus that's had her on the couch, missing school, me unable to get much work done. Told DH tonight that if I heard "Mom, I don't feel good" (which I'd been told every 30 seconds for days on end) one more time, I was going to slit my wrists. DH responded by telling me to come take a look at this cool media app he installed on the home server....If looks could kill...I'd be a widow. DD (6) is prone to evil spells - not as bad as you describe, but evil enough that I feel your pain. And yes, she too is ever so charming in school. Her Achilles heal is that she is very fond of her stuffed animals to the point they are almost real to her. Time outs, loss of privileges, etc don't do much when she's in one of her snits. So now when she crosses a line, one of her animals gets put in time out instead. Taken away, put up high, for an hour, a day..whatever hits home. Sends her into orbit with regret and changes her tune very quickly. (tho one night she ended up with a whole menagerie in time out before she stopped). She blames her behaviors on OCD fairies. But I tell her that if our dog bites a neighbor, I'm the one who will be in trouble with the police. I'm responsible for controlling the dog, even if I didn't do the biting. She's responsible for controlling the fairies and her own temper and especially her own actions when it comes to harming someone. Maybe your DS has a similar weakness you can exploit. I truly believe with DD, regardless of whatever infection or PANS insults she's got going on, methylation is going to be the starting point for turning the ship around. The 5-methyltetrafolate and betaine were ordered from amazon today. Hang in there and know that you're going to get to the bottom of things too. In the meantime, I've found that making voodoo doll likenesses of certain family members, with hat pins inserted strategically, can be very therapeutic

I had a similar conversation with my kids' doctor a few weeks ago, on why Dr A's protocol works so well, yet when my Dr tries it with his patients, he doesn't see the same results. Same with Dr Xs and Dr Ys protocols. Yet my own Dr does protocol Z and has better results with it than his peers do. He feels that in a way, patients are self-selecting. The ones who see Dr A and do well never move on to DRs X or Y. Those who don't do well with Dr A move on and never get reported in the results that Dr A discusses in papers or conferences. These patients maybe get reported in Dr Ys success stories. There's a reason I've left some doctors and stayed with others. Their approach, their personal styles, their areas of expertise - either helped and we stayed or they didn't and we moved on. So all the docs who feel tonsils should stay probably have sound reasons and a pool of patients to support their position and vice versa. Unfortunately, until medicine is more individualized with genetic testing or protocols based on unique factors (e.g. only blood type A does well with one thing, only people with gut flora type 2 do well with another), you're left to learn what you can about various doctors and go with what resonates with you. It is in a way, doctor shopping. You do tend to see the docs that are going to prescribe what you're hoping for. All you can do is research as much as you can and then yes, go with your gut. Like NMom, we all have to live with our mistakes (and there will be plenty). But at least they're my mistakes, not someone elses, and I have the power to make sure it's the best, most well researched, most sincere mistake I could have made at the time.

Jodie, Any experience with betaine for TNF-alpha inflammation? Seriously considering it. Thanks for any thoughts. Laura (phila - sorry to hijack)

Your plan/timing sounds reasonable to me. I don't think you need any special brand. I personally like NOW Foods when I have a choice because they're a GMP manufacturer (Good Mfg Practice) which means they follow specific guidelines for quality control. They also claim on their website to inspect/work closely with their source providers. So it's my little way of feeling better about quality at an affordable price. But any milk thistle is fine. We use 300 mg. Ours also includes dandelion root. Dandelion can help the kidneys.

What sort of antivirals are you guys using on a regular basis? Which ones seem more helpful than others? Thanks

The issue with rifampin and milk thistle, as I understand it, is that milk thistle can speed up the metabolism of some drugs thru the liver and decrease the metabolism of others. Milk Thistle decreases the metabolism of rifampin (if I'm understanding correctly) and thus elevates the amount of rifampin in your body that's higher than the intended dosage. However, taking rifampin with food can decrease absorption by 36% (per wiki). It does not seem to be effected by magnesium the way other abx are. The way to tell if absorption is at its best is the color of your urine. If it's less than orange, absorption is less than it could/should be. I really like the benefits of milk thistle, especially given the long term combo abx we're on. So I think I'm going to have DS continue to take milk thistle, but away from the rifampin. The half life of rifampin (with normal metabolism) is 2-4 hours.

Thanks for all the links. I bought Amy Yasko's book "Autism: Pathways to Recovery" and forked over the extra $5 for her DVDs. The book was only moderately helpful, as we can never afford to do her full program. But the DVDs have blown me away. She touches on everything we've experienced in the past 3 years. Everything. I cannot recommend these DVDs enough. They have changed the way I look at the problem and given me new ideas for moving forward. It is the best $55 I've spent in a very long time. (you can get the book from amazon but need to order from her site in order to get the accompanying DVDs). Your links are also helpful, as heart disease and macular degeneration and diabetes all effect my side of the family. Thanks again!

DS9 (65 lbs) started rifampin last week 150mg/dose, twice a day. So far, only a mild herx. It can turn your pee and tears orange. I hope it helps. You're in my thoughts all the time.

We did same as you 2 days on, 5 off, for 4 weeks. Herxed so badly we had to stop. Became very Pandas-like. When we stopped, we did lots of digging - found other things getting in the way (slight mold, KPU, methylation/detox issues). I can totally understand your concerns. But the good news is that once we stopped the tindamax, things calmed down (took about 3 weeks). So it didn't set off something that was long-lived. Try it - it may go well. If not, you can stop.

My kids also flair with loose teeth. - they are a lyme/Pandas mix. Our LLMD theorized that the mouth bacteria can activate the PANS type of response. While we're waiting for the tooth to come out, we use an oral rinse from our DDS called Peridex - has anti-bacterial effect (I suppose non-alcohol version of Lysterine would work too). We also dose with an NSAID on a regular schedule to keep things from escalating. Since you have the abx covered, I guess I'd just opt for an extraction as quickly as possible. Like you, I'd be leary of a root canal, particularly since that seems like it could still end in extraction anyway. In a way, the loose tooth/broken skin on the gum is like an infection. You may just have to manage symptoms until you can eradicate the source of insult. The Pandas docs we've worked with acknowledged the tooth issue but didn't seem to have any concrete advice on how to handle. Maybe ask your LLMD if there are any herbals that can help on a temporary basis (grape seed? oil of oregano? monolaurin?)

Melanie, It was 4 weeks before we could say that pex helped. Before then, we saw ups and downs, improvements in some symptoms, worsening in others, that would change every few days. It was a roller coaster - it's working! Oh, no, it's not. It is! No, it's not. Very flash point anger, then calm. A burst of tics, then quiet. You just won't know for awhile. And with IVIG right after, we'll that's something some of us tried to get but couldn't. So you're a pioneer on this trail. Hang in there and have faith. If it helps, awesome. If it falls short of expectations, we'll be here to help you with next steps. But it's too soon to get discouraged. Keeping you in my thoughts, Laura

Nattokinase is becoming a fairly common thing for films, tho I have no direct experience. I would ask your doctor about the Mucinex, as it too is a film buster in a sense (films are kinda slimy, like mucus). Probably fine, but just better to run it by him. The sinus issue could be MARCONs or mold, so you may also want to discuss these with your doctor as well. Because you're taking oral abx, make sure you take probiotics to protect your gut. Sacc Boulardis is resistant to abx and is good to include in any probiotic blend. Hope it all goes well!

Cab - I am so sorry that you feel so alone. Have you tried a DAN doctor or integrative? How about the Univ of Az Center for Integrative Health? http://integrativemedicine.arizona.edu/ I would contact organizations that support patients with chronic health issues - DAN, ILADS, chronic fatigue groups. These doctors look beyond conventional wisdom and CYA protocols. Granted, this invites more room for false starts and requires more diligence on your part, but this is way too much to shoulder on your own. Maybe a less conventional path would help. You may also want to look into Dr Stephen Fry in Scottsdale from his site: In addition to being the Founder, Director, and Principal Investigator of our laboratory, Stephen E. Fry, M.S., M.D., is an active General Practitioner in Scottsdale. Dr. Fry first became interested in autoimmune diseases 10 years ago after seeing the debilitative effects that these diseases can have on patients. Dr. Fry's busy clinical practice, as well as his interest in analyzing the causative agents of autoimmune disease have led to the development of our lab. A large portion of Dr. Fry's patients include those who suffer from chornic fatigue, fibromyalgia, lyme disease, and other complicated autoimmune diseases. Dr. Fry is a member of I.L.A.D.S., the Arizona Biotechnology Consortium, and he holds many patents on cutting edge biotechnological and diagnostic innovations. It's not Pandas specifically, but this is a guy who's very knowledgeable on how infectious agents can hijack the body. Try to dig deep and not give up. No one can know what damage has been done, but even someone like Christopher Reed, after his accident, was able to defy medical prognosis and regain more movement than his doctors predicted. The human brain is capable of so many things - hope and recovery being two of those things that are often underestimated.

Art/Communications/Business major here. Spent HS chemistry class flirting with the center of the basketball team (and I'm 5'2" - so you can see how I regret that decision on many fronts now). I too look at the pathways map and the eyes glaze over like a deer in the headlights. But I highly recommend the DVDs. Yasko will ofetn use her pointer to highlight something on a powerpoint illustration and say "so you can see how ABC leads to XYZ" and I'm like "um, yeah....I see a picture of a bunny in a hot air balloon". But her general discussion is pretty clear and at a high enough level that you can follow it. I'll end up watching it several times - way TMI to absorb in one sitting. But it is giving me some exciting ideas. If you can follow music, I'm sure you have the intelligence to piece it together as well as any of the rest of us. I too started supplementing with Core and have started recalling my dreams for the first time in a long time. Very weird. The one thing you may want to consider is the B complex. I've read in more than one place that B12 is great for everyone. But in my post above, I'm not sure that's something I'm comfortable with. I think it may be a matter of balance. If you're low in other Bs, not sure adding tons of B12 makes anything better. I'm not sure if I'm right, but I'm instead going to try supplementing individual Bs - B3, B6 specifically and possibly a return to B8 (inositol) for lipids. Somewhere in my gut, with no scientific justification, I feel uncomfortable with a B complex. It just feels like too much of a blanket approach. Maybe I'm just being weird. I know my LLMD recommends a B complex. But I'm still leary. BTW - the DVD and other Yasko writings discuss ADHD. It's an area I need to go back to - I'm still in gloss-over, read it all for overview mode. My DS also struggles with attention. But I'm guessing you may find some AHA things. You can go to her site and view PDFs of some of her presentations - just not sure how comprehensive it is.

You know, Yasko says in her video that her experience and that of other Drs is that B12 is indicated for everyone, that it would be hard to get too much. Yet, Pfeifer and other meth cycle articles seem to suggest that an under-methylator would have a hard time with B12, even in its various forms. DH was prescribed sublingual B12 by his integrative and he could only take it for a few days before stopping. It gave him a jittery, tingly sensation in his limbs and he didn't like it one bit. From piecing together the cycle and my kids, I walk away with the feeling that it wold be bad for my kids as well, and that they wouldn't be able to describe the sensation. So I'm not going there. We go for our MTHFR blood draw this afternoon. DS has the HLA DR gene that makes him somewhat susceptible to mold but I don't think that's our major hurdle (I feel sooo much better now that the washing machine is clean - hives are gone and my cough is clearing - who knew?). What was really interesting in her video is that she spends a lot of time discussing the damage caused by glutamate but then says it's glutamate's effect on calcium that really does the damage. That glutamate is the gun, calcium is the bullet. But you can block the damage from excess calcium by supplementing with (drum roll....) B6 and zinc. Which is what you supplement for KPU - and the very thing that's given us significant and sustainable improvement for DS since August. And there's no doubt glutamate has been a huge issue for him. So it ties together pretty neatly. I understand Yasko is no longer treating patients - not that we would afford her or the tests anyway. But I'm sure I can get our LLMD to test a few additional genes if it looks affordable and then do some trials of a few supplements gradually over time - betaine, methylfolate, niacinamide are on the top of my list. May also look for something to improve lipids, yet am leary of Omega 3s due to previous bad response. I just read on our Inositol bottle that it may improve cell health and phospholipids - anyone know if what else does this, or if inositol is a good one? I assume since ASD is not yet "cured" that Yasko's ideas are part of the puzzle but not the whole enchalada. Is it just the cost? The length of time needed to see results? The number of pills you end up taking? Or is it just that the ball of string gets so tangled that one "protocol" alone doesn't get the job done? I know for us, we'll still have lyme and cysts and films and probably mercury to deal with. But it feels like methylation supplements can help us strengthen the foundation and give us stronger armies, that this may just help us win the war. Am I being too optimistic or naive?

After trying to understand methylation on both the lyme and Pandas forums, I broke down and bought Amy Yasko's Autism: Pathways to Recovery ($54 for book and 2 DVDs). The book was somewhat informative but is really meant for families that have done all of her recommended genetic testing and are using her supplements protocol. It makes the book read a bit like an infomercial and I was a little disappointed. But then I watched one of the DVDs of her giving an all day presentation on her views (it's pared down to 2 hrs). I was totally blown away. She spends the first hour going over methylation, its effects on seratonin and dopamine and spends a lot of time discussing glutamate and gaba. So may of the things she touches on for her autism audience rings so true for all of us. Then about an hour into the DVD, she goes into a 20 min. discussion of Pandas and what she believes is happening at a chemical level. Then she talks about metals, toxins and viruses and how they screw up methylation as well. It all made so much sense. So I was left both excited and confused. Everything she discussed seemed to be backed by very sound reasoning (though I'm certain at least some of it is her theory and not yet validated by research). So why haven't more doctors jumped on the band wagon? I feel pretty confident that Swedo, Hornig, Newell and others understand methylation and its implications. Its effects on T cells and inflammation and neurotransmitters. It seems right up Klinghardt's alley. What am I missing? Does anyone know the downside or why Yasko's approach hasn't been embraced? (For anyone wanting to feed their geeky side - I highly recommend the DVDs that come with the set (DVD + book set must be ordered from Yasko's site - Amazon only sells the book).

We're testing their MTHFR gene. Not sure how long it takes to get results. I would also like to test a few other genes but not sure how expensive and what insurance will or won't cover. So will test the waters with this one first.

Let me know what your doc says about methylation. I just finished my first reading of Yasko's book. Will now go thru it with more detail. Will be good to compare notes. DS struggled when we went to 3 Core - we backed down to 2 for several more weeks. But then we bumped from 3 to 4 with no issues. When we bumped the second time, I had started supplementing with taurine and magnesium and added a second milk thistle several weeks prior. Don't know if that had any impact. I also backed off clay (reduced from 5 capsules/ 1tsp to 1-2 capsules) and added 1 g psyllium husk - that has really helped both kids become more regular, which I personally think is at least as, if not more important than a binder. Doesn't do any good to bind stuff and then have it not move out of town. So for the moment, psyllium husk is trumping clay in the pill department. As far as how long she may be stuck with Core, I think my kids may be life-long. We're doing labs tomorrow but if they end up having genetic defects in methylation, we'll need to supplement various vitamins/minerals/amino acids for life, long after lyme is history. But that sure beats a life of OCD and dysfunction.

My son used A-Bart for about 4 weeks - we never saw any change one way or the other. The reports on lymenet seem to be mixed. They either really work well or seem to do nothing. Seems to be highly individual. We used it prior to KPU diagnosis/treatment and we are now supplementing much more to support methylation. It's possible we could have a different response if we were to try again in a few months.

I've been struggling with hives for the past 6 weeks that have me crawling out of my skin. Also a slight "asthma" cough I assume is from fall-related mold. The cough is with me everywhere, but the hives only in my house. JJL had mentioned that he had found a lot of mold on the drum of his washing machine. So today I took ours apart (amazingly easy - just find a youtube video). Sure enough, 3 inches of mold and slime at the top of the drum. The area that sits above the water line but gets sprayed with every spin cycle. So it gets wet but not rinsed away or touched by soap. I initially couldn't get the stuff off, but then sprayed it with a spray bottle filled with peroxide and watched the whole area turn white and foamy. It then wiped right off. So from now on, I'll be spraying the drum with peroxide after each laundry day, which I know won't entirely prevent future issues, but may help. And I'm going to try to remember to take the washer apart twice a year (maybe daylight savings weekends?) to do a good cleaning. I'm not sure it's our only problem. I'm still looking. Won't know I'm "successful" until the hives go away. But I was just amazed at how disgusting a washer drum could get. Thanks for the tip JJL!

The standard labs (Lab Corp, Quest etc) follow CDC guidelines and test for specific bands of antibodies against borellia. They specifically omit bands 31 and 39 (I think - memory is rusty) which were bands that would show up if people got vaccinated with the lyme vaccine developed in 2000. The CDC said don't test for those bands or the whole country will test positive for lyme. Well, the vaccine was a total failure and was pulled from the market in 2002. But the CDC has never updated its guidelines. Igenex is a lab that does test for bands 31 and 39 and other bands that are commonly seen with lyme. So Igenex is often used in the lyme community because you can test negative on a CDC western blot but positive on an Igenex western blot. To get an Igenex test, you can call the co and they'll send you a collection kit. But you'll need a doctor to sign the form requesting the labs. (some chiropractors have signed for patients). Bartonella is a separate test. Igenex will run a test that looks for antibodies to bartonella, babesia and one other (again - memory fails me). It's expensive. Specialty Labs - a division of Quest - also has a bartonella test that only tests for that one infection. It is usually covered by insurance. But lyme doctors have preferences and I'm not trying to suggest one lab over another. Igenex also looks for infections in other ways with other tests. Your best bet is to work with a doctor who understands the options and can guide you. Specialty Labs' bartonella test is considered fairly valid, but I don't think their lyme test is any different than any other lab that follows the outdated CDC guidelines. For lyme, I personally would recommend Igenex. As for metals, there are a few labs that will do urine and/or hair tests to look for heavy metals (mercury, lead, cadmium, aluminum, et al). Metals is a whole can of worms. Tests for metals are even more unreliable than lyme tests. Yet metals can cause a huge issue for both kids and adults (and especially kids of moms who have a lot of amalgam fillings like me). Since you're just sticking your toe in the water, I don't want to bombard you with info. But do keep it on your list of things to look at. Lyme, chronic infection and metals often go together. The bacteria may use the metals to help suppress the immune system and make the body a better host. If you want pursue, let me know and I'll try to share what I know. The last I knew, Dr T was not using Igenex or lyme labs for his testing. So it's good he's open to it, but he may not be using the best tools (all are admittedly flawed at best). If you're in the tri-state area or southern New England, there are other doctors who are more versed in lyme issues. Many of us can PM you with names. But maybe ask Dr T if he'll sign an Igenex test for you and see where the results take you. The guiding principal is to follow your son's symptoms. If he's not getting well on a Pandas protocol, then consider alternatives. I've had to consider a half dozen "labels" and had to pick and chose treatments based on what worked and what didn't. Labels matter less than results.

I was just thinking about you this morning. I am so sorry to hear of all the challenges you've been given. Can you travel to your LLMD for the PICC line? I can't imagine how drained you must be. Some supreme power must have a really high opinion of how much you can handle at one time! While you've been away, the forum has been sharing some links on some new ideas. We've been looking into methylation - a basic biochemical process that effects a large component of how well the brain, gut, immune and detox systems work. I'll put together some links for you later this weekend for when you're up to it. Every time I read more, I think of Shae. But for the moment, know that we're all here for you. There's not much I can say from hundreds of miles away to make you feel better. Only a reminder that you don't have to shoulder the burden alone. You're in my prayers!