matis_mom

Well, Stephanie, I can relate... Last week, on Wednesday, I started feeling this awful headache, just the right side. I thought, "oh well, here we go, I'm getting a migraine. This lasted Thursday and Friday, and all day I was in a daze and then I could not sleep at night with thoughts revolving in my head, panicking about everything, etc. On Friday my 15-yo (whom we recently realized is a bit PANDAS too), tells me his weird thoughts are creeping back up. Saturday I take the baby in (she had been acting strange and not eating much, or just spitting up her food) and SHE HAS STREP!!! At the same time with the headaches I had joint pains, and I started thinking back when I was in high school I started with those migraines (which my 15old had too as a child!), I had a whole year where I did not do PE because of knee pain, and I remember every now and then the skin between my fingers would just start peeling off (I learned in this forum that can be a symptom of strep). So, I am just waiting a bit to save up for my own consult with the homeopath! The good thing is that my "PANDAS" (ds13) did not react much at all. Praise God, homeopathy is working for him!!! Not 100% recovered, but just the fact he did not have the "canary" effect is remarkable!!! Thank you Lord!!!

Hello all, I have not posted in a very long time, but I just had to chime in on this one... We are working with a classical homeopath and like PANDAS16 said, she is being super careful about dosage. I believe she has hit the nail on the head with ds13, and he is doing very well. We have been able to discontinue antibiotics, praise God! He's been off since late May. He's had issues here and there but overall he is better than before. Just yesterday my 18-month old tested positive for strep (no symptoms except she would spit up her food instead of swallowing it!). Anyway, I just suspected something was up because of her own symptoms... My "canary" is no longer singing when there is strep in the house!!! In other words, I did not see the marked increase in OCD I would usually see before. So, to me, it is totally working, and sadly I am seeing symptoms in my other kids (actually on Friday my 15-yo told me he felt his strange thoughts creeping back up!). But I am encouraged and confident that we can manage with homeopathy. I am not saying it's for everyone from the get-go. My son was on antibiotics for over two years, and the last part of that was multiple antibiotics for Lyme and co-infections. But we got to a point where they were not helping any more, yet he could not get off them either. That's when we started with homeopathy, and I am so glad we did, and so thankful those who shared their success stories. I am so glad to see the exchange of opinions and experiences in this forum

I would just run everything on everyone right off the bat: rapid, culture, titers. My oldest was a carrier (negative rapid, positive culture, normal titers), and my husband and I and I had negative swab, negative culture, high titers, but after that we've had positive rapids off and on. So, I would do it all to begin with and then restest as needed.

We did switch to corded phone (at least for the bedroom). Also, my left wrist kept hurting. Something told me to remove my watch. I have not used my wrist watch in a couple of weeks and the pain has gone away! Pretty amazing.

I had pseudomonas (among other things) in my tonsils too and the ENT totally ignored it! But I went to an ID doc with the results and we put me on Cipro for 14 days. I think it did the trick

Wow! Thanks for sharing this. Dr. Bouboulis had recommended a CT scan, but we never went through with it... now there is an alternative! Awesome!

So sorry about the tongue thing coming back... I keep going back to the same: do you think by any chance it could be strep(or something else) exposure? DS13 is been ramping up lately, I can't put a reason to it but I have the feeling someone must be brewing something... Don't overthink it about tomorrow. Just state the facts and see what Dr. Latimer was to say.

DS13 kept testing negative for Lyme 2 1/2 years ago, even through specialty labs, even after starting abxs, our then LLMD kept testing and it kept coming back negative. Last year he had 4 bands positive through Labcorp (5 needed according to CDC). So, I would say you could start there, as it is covered by insurance. But, make sure they ask for a Western Blot IgG and IgM (I think?) even if the titer is negative. I think the rule of thumb is they run the titer, and if it's positive they run WB to confirm. You want it done even if the titer is negative.

When we did the month-long taper, we really did not start seeing results until towards the end. So if the trend is positive over all, I think you are in the right track, it just needs more time.

Same here... my husband applied something on the yard, and we've done the tubes too, but with all this rain it's probably washed off completely. As soon as it dries up a bit we'll have to mow really short (it's been raining every single day so we have not even been able to mow!) and treat again. I am also planning to treat the dog more often than recommended...

Our LLMD recommended Eucalyptus oil. I does work, but you have to remember to apply it, and it does not last too long, so you'll have to reaply maybe every 1 1/2 to 2 hrs. I made my own mix with Eucalyptus and Geranium oils, and it works, but whenever we let our guard down thinking they are only going to ride the bikes on the driveway, they'll just be out a few minutes, etc, that's when we get the ticks! So, I need to re-program everyone to PUT SOMETHING ON before they step out the door, no "buts", no excuses.

I know exactly how you feel! Like your heart just sinks, like a whole in your stomach. The last couple of weeks have been absolutely insane here. We pulled out a tick out of dd5's head... it was embedded, but I cannot have been there too long because I've been checking daily. Nevertheless, the site looked awful and she developed swollen lymph nodes. The pediatrician said it could just be a reaction to the infection on the bite site itself, or it could be Lyme, but we are not going to wait a month to test, so she is on 30 days amox. I've been pulling ticks out of everyone! One day I was giving the little girls a bath, took the 1yo out first, as I'm changing I heard dd3 screaming in the bathtub... DD5 saw a tick on DD3's armpit and decided to pull it out herself!!! Goodness gracious!!! I did find the dead tick, it definitely was a tick. It's just crazy! Our big problem was our dog got into a fight with a fox that we later shot and was confirmed by the health department to have rabbies (don't you just love country life!). As a result of the incident, the dog had a bath, and we did not think of re-applying the tick stuff on him, duh! I only made the connection about a week later because I showered, went to church, came back home, parked on the driveway (the dog came to me as I was getting out of the car), and five minutes later I found a tick on me!!! So, if you have any pets, make sure you treat them, since they are out and about picking up all sort of things!

So reading the recent post on Lyme, Strep, or Both, I am wondering... Is it worth pursuing PEX in the middle of Lyme treatment??? DS has been on Lyme treatment for 7 months, he is better (no more joint pains, no headaches), so I think the Lyme itself is under control, but we still have to work through co-infections. His PANDAS is still very much there, and he is still reacting to exposure. Would it be worth doing PEX right now? One of the things that has kept us from going forward with plasmapheresis in the past is our family situation... We keep getting strep, we've tried everything, seen different docs, we think we having under control, and then BAHM! strep again. I suppose it is just the way it is, it's everywhere, but we cannot seem to go longer than a couple of months without someone getting it... Just thinking aloud here...

Wow, you've got a complicated picture here, especially with your son coming home with "something"??? I totally understand how you feel. DS13 is also stuck in a bad place. Tons of abxs for Lyme/Bartonella/etc, but no real relief from PANDAS. Just last weekend he flared because of a virus (I think?) that's going through the house. DD8 looked like she had strep, but it was negative. Still, it is affecting him. I think until they are 100% recovered they still react to strep and viruses. One thing that has helped stop the downward spiral in the past is Bicillin shots (I don't know why I didn't think of this until now!!!). Somehow it seems to stop things from getting worse. I would stay the course, and try to address allergies, exposure (to other family members being sick?), etc. Like your family, many of us have Lyme and I think until we get that under control, we seem to keep catching anything that is going around, and both my husband and I have high titers that we cannot seem to bring down. I even had my tonsils out last Nov. He went for a checkup a couple of weeks ago, ASO still high, they did a rapid, and it was positive. It is very discouraging!!! We keep getting (or just not clearing) strep, and we usually do not have any symptoms (except we know we have it because of ds's behavior) It is so hard to tell exactly what is that is making them worse, so easy to fall into paranoia (that's me!), so tempting to throw in the towel... One thing that helps my son during exacerbation is to write things down. He has a very hard time talking about his intrusive thoughts/contamination fears/etc, but somehow when he puts it down on paper it really helps him settle down. Maybe that and a little ibuprofen will at least give her a breather. Hang in there!

I had been giving it to my son, but then when we did food sensitive testing, he came back allergic to all fish, so now I use the plant-based supplement instead. If you use fish oil, make sure is certified free of heavy metals.

I am so sorry things are heading south! How do you feel about all this? If you really think you cannot manage it at home, then I would consider it, but I would like to have control over what goes on in there. I've just heard too many horror stories from parents in this forum who deeply regretted admiting their kids. My question is, what would they do FOR HER there that cannot be done at home? Are they simply going to restrain her? Are they going to try other drugs? What is the plan? Would it be worth jumping ship on the steroids and see if she settles down? I am sorry to be throwing questions at you rather than giving you answers... You are in my prayers.

I just wanted to say I am so sorry for what your family is going through. We will keep you and your daughter in our prayers. I can't imagine your frustration. I am thinking maybe if they are not listening, it might be a good idea to get a "patient advocate"? Not that I've ever been there, but I've heard of this kind of situation before, and I think maybe if you walk in there with an advocate they'll understand you mean business.

Anyone???

How many more days do you have? We never did a "burst", we did month-long tapers, and in those we did not see the full results until towards the end, but the trend was always upwards, not down. The results were short-lived, though, because in the end my son did have Lyme and Co-infections. So for one thing, I would say stay the course so you can give it a fair chance and see (otherwise you will always wonder "what if I had stuck it to the end"), but on the other, if you are seeing things spiraling down, I would follow my mommy gut. From your description, it would seem like the steroids have "unleashed the monster". I think steroids worked for us the first time because he had been on abxs a good long time already, and things were "stable" when we started the taper. But if whatever infection is making her react is not under control, then maybe this is not the time to do steroids. This is just my opinion based on what we've gone through, others might have different views. Another thing to look at is the environment. Any chance someone in the house might have strep? Has anything else changed? Please remind me what your daughter's original "trigger" was, I'm sorry I can't keep everyone's stories straight!

So at our appointment this week the dr. said he want's ds to stay on Aug/Zithro, but drop the minocycline and add Alinia instead. I would like to know if others have tried it and could share what to expect as far as herxing goes. My parents are coming to visit in two weeks (they are coming from Argentina, have not seen them in 2 years!), and I don't want to be going through a rough patch right then. I so badly want DS to start making real progress here, but at the same time I am afraid it will ruin the whole visit! The last couple of months he has been dealing with intrusive thoughts (he talks to himself ALL DAY it seems, trying to talk himself out of it). He has been a love just trying to deal with it quietly, but I know he is suffering much. At the same time, we have an appointment with a homeopath at the end of the month, so I don't know if this is the best time to be pulling the big guns... Any advice is greatly appreciated! PS: and oh, yes, I forgot to add dh tested + for strep last week (they gave him 30 days abx), dd8 looks like she has strep (took her in today, rapid negative and they sent culture, but I could bet good money she does have it), and I just took my last dose of 30 days doxy (all I could get from a sympathetic - nonLLMD - ID doctor...) It really is all just too much for me some days

Thanks for the update... DS13 is supposed to start Alinia this week so I'll keep your experience in mind.

Man! I tell you sometimes one wonders what the point is in taking all these antibiotics... I would ask for a culture with sensitivities and take it from there.

Pandas16 I am so glad TSO is working out for you as it is for my son. I just wanted to add that the reason Dr. Lin starts in a low dosage is that one might get sick if started in a high dose so his method is to introduce TSO gradually. Dr. Lin's patients are children so it is important to start at low to make sure young ones can tolerate them. My understanding is that TSO is not from Thailand but from Germany. A small Germany pharmaceutical company ( or something like that) is making them but since they can not get German government's permission to market them and sell them, Ovamed somehow took TSO to Thailand Government and got approval from Thailand and hence there connection with Thailand. I guess Thailand government is a lot more progressive than that of Germany. When I ordered TSO, they came from Boston. (????) Anyway I was under impression that TSO was made in Germany. Can you correct me if I am wrong here, Pandas16? pathfinder Pathfinder, Do you mind share a ball-park figure of how much it costs a month? And do you need a prescription? Thank you! You do not need prescription. If you are interested I could help you out in details. I don't think you can find many drs who would be familiar with this treatment anyway. My son could go up to maximum dosage but he is already doing good at half so I am going to stay there for now( $5000/yr) My son is an adult size ( 165 pounds) hence needing maximum. You don't have to spend all that money up front and I advise you to get a bottle of 2500 units ( around $400/or equivalent euro) and build it up in dose of what your child needs. Here is the website for TSO. You can find a lot of answers there. http://www.ovamed.org pathfinder Thanks so much for sharing down to the griddy details... sadly it's a big part of our picture here so it really helps to know right off the bat what to expect. We are going to try homeopathy (we have an appointment at the end of the month), and hopefully that will work, but if not TSO will be next on the list... As weird as it sounds to be taking parasite eggs, it is less intimidating to me than going through plasmapheresis or IVIG.

That kind of explains why she did not respond as expected! If there is no antibiotic to keep things in check while you suppress the immune system, well, let's just say good thing you got to talk to the doctor! I am amazed sometimes how quickly docs go through stuff and one is supposed to keep all this stuff straight after the visit. Our first LLMD was awesome: they got a blank piece of paper and the doc would write down things for you as she went through the visit, so we would go home with a sheet of instructions in the docs own hand explaining what to take, how often, how much, what for, etc. But very few docs do that. Some of them just assume you know this that and the other. Anyway, I hope now with the antibiotics you will see some progress.