tu4four
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Posts posted by tu4four
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For us, the PANDAS immunologists revealed things that I didn't know and needed to know about viruses, level of igg, etc. our last recommendation from the most recent immuno was for IvIG. Insurance will not cover.
We just had a lumbar puncture, MRI with a very mainstream neuro who thinks PANDAS is over diagnosed. I would never have gone that way early on--felt like it was too invasive--but after all the other testing, I felt like it was time.
Haven't gotten the results yet except that her spinal fluid pressure was 38 (normal is 7-15 ...possibly up to 20). If she has encephilitis or autoimmune bands or some other thing show up in her spinal fluid--even this mainstream neuro can't argue with that. I may have to see someone else to have her treated correctly, but I'll have the test results in my hand.
Just my thoughts.....
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http://www.mayoclinic.com/health/hydrocephalus/DS00393/DSECTION=symptoms
What else did he say? Is he not concerned? You probably have already visited this site, but I thought I would post it anyway.
Thanks for that link. The doc did not seem alarmed. Looking back on Wed, the doc came out asking me if she often suffered from headaches, but she doesn't, and I thought he was leading up to the fact that she had a really bad headache right then from the procedure. Now I realize that he was asking me that because it seems like she would have a headache pretty frequently with this kind of increased pressure.
This wasn't our pedi neurologist who came out to tell me, but the doctor who performed the lumbar puncture. I had to call the er last night due to continued intense headache, and they had her records and mentioned that her pressure was pretty high. I was told that it was 38, but they brought it down to just about normal at 21. Seems like that has to be significant in some way. I talked to the on-call pedi neurologist last night who said that it definitely could cause behavioral changes like we have seen.
I should hear something from her neurologist in the next day or two. I plan to start calling tomorrow am.
Thanks!
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Hi! Hope everybody had a great Thanksgiving!
My dd11 had her lumbar puncture on Wednesday, and when the dr came out to tell me how it went. He said that she had more cerebral spinal fluid than he expected (I guess this is measured in terms of pressure?). I asked him if he thought that could be related to her raging, but he said no. Wondered if any of you knew anything about too much csf?
Thanks!
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rowingmom--honestly, I don't know I'd the igg shots helped me as a kid or not. I know I was a sickly kid with a lot of strep, lots of allergies, etc....I think perhaps igg shots were easier to get at the time, and my doctor saw that I has a significantly weakened immune system just through how often I was getting sick. Guess it seemed like a logical choice to him. The most I ever had in the way of diagnostic testing was the series of scratch tests.
I know our stuff seems crazy! Like maybe it doesn't respond in the way everybody else's illness does. And I can buy that because we have not seen very many herxes at all with new meds. In fact, only one or two out of tons of new meds. And nothing has improved our situation--although back on a low dose of abilify she is better than she was.
But I know that she has pandas...she has all of the symptoms (or has had) with the exception if motor tics. And I have seen that direct strep exposure incites debilitating OCD pattern which calmed with Zithromax at the time.
I think my daughter had it for so long before we started treating it as pandas....I think it's possible that she is now constantly locked in the inflammation phase. I am waiting for them to finish her lumbar puncture as I write....hoping these tests will show encephilitis or something that could be the reason she's not getting well--and hoping insurance will cover it.
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tu4four,
has there been ANY positive signs toward autoimmunity? even slightly?
positive sed rate, ANA, dsDNA, anything?
after this testing, I would,for sure, try the steroids. They are life -changing for my girls!
I am really hoping you find something.
Her only real test that points to autoimmune (possibly) is a high TPO--but only mildly high. And, of course, we have a family history of autoimmune as long as my arm. I took IgG shots weekly as a little kid until I had my tonsils out. My dad died of complications from an autoimmune issue--Wegner's Granulomatosis. She had a high Cam Kinase II level. Other than that.....
I did check our insurance company's website even before we saw the immunologist, so I knew that chances were slim but was hoping for some fancy wording or something that would turn the key. I know that our neurologist is not expecting to find anything on the lumbar puncture, but one can hope, right?
I guess after the lumbar puncture I will try to use the best anti-inflammatories I can find to see if that might help. Does that seem reasonable?
As an aside (sort of), my husband has been working two or three jobs for the past few years, and his contracts have run out, so he is now down to just one job. While this is great for family time, you can imagine what it is going to do to our "get the kids well" budget. And he is so depressed thinking he will have to work until the day he dies. So....prayers appreciated.....
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You give me hope!!!! Had he previously had igg testing with an immuno? Hers was normal, and apparently abnormal on that was what we needed for ins.
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Nothing that we tested for... He said he wasn't finding lyme/Bart/babesia. We have treated for parasites, viruses, he didn't find those either. We've done urine testing for heavy metals--nothing was too high, and our doc doesn't think that is an issue.
We just did the urine test for kpu...she was within normal range, but I think supplementing has been helping her brother. I asked him about that doe her, and he worked with her, said she could work up to 7 CORE.
He gave us a lot of supplements to help boost immune function. And some just to keep lyme . and co at bay herbals. Have me a couple of other things because I asked for them.
So I don't know if we are just now dealing with her immune system confusion or what. I wonder if we should try a steroid burst but have steered very clear of that in the past because of lyme.
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We saw our lyme doc at the beginning of last week and a new immunologist on wed. Our lyme doc thinks that lyme/Bart/babesia are not issues for her right now. We have treated for parasites, viruses, tested for heavy metals. Through ART, our doc disn't really see mold as an issue.
I was so excited on wed when the new immunologist said he thought we should pursue ivig. He took many, many vials of blood, and I was so sure we'd be able to justify iviG to insurance.
But...I just got off the phone with the immuno's ofc, and her blood work will not convince the ins co. So....the nurse suggested we try to get a patient advocate, etc....
My daughter is having a lumbar puncture on wed, and I have been hoping that we might find an auto-immune encephilitis that would convince ins to so ivig...but the nurse at the immuno ofc said that encephilitis would not convince ins to do ivig, either.
Where do I go from here??? And would it even be beneficial for us to scrape together 15k to do a one time ivig? The immuno was suggesting ivig every 4-6 wks....
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My daughter is schedes for a lumbar puncture next week. She will be sedated. Could you ask for some level of sedation? I've never had one, but the nurse compared it to an epidural.
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My daughter is schedes for a lumbar puncture next week. She will be sedated. Could you ask for some level of sedation? I've never had one, but the nurse compared it to an epidural.
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My dd9 (at the time) had a horrible time for a good while after her t &a, BUT, she wasn't on any abx at all. I would think that the abx should shorten the length of trouble.
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I have a dd11 that has big issues with rage, clothing sensitivities, etc. She has lost so much executive e functioning and lost math ability but does not appear ADHD In the traditional sense. She just can no longer function academically. She spent 4 years on psych meds ---but only one ssri (which was horrible). She had been off of all psych meds since feb, but within the past week or so we put her back on a very low dose of abilify to take the edge off more than Advil. Advil would calm her rage but did nothing else. We are hoping to have Ivig before the end of the year.
I am telling this because her brother has been showing the same symptoms, lots of asymptomatic strep, out of control anger, etc. but a biggie for him is more traditional looking ADHD (which I know is pandas). After everything we have been through (and are still going through with his sister). I am ready to try my precious boy on abilify. Not an ssri.
Abilify is a heavy psych drug, too, but not an ssri, and the only reason that we can do it is because of quality of life issues---things have settled a little with my daughter on it, but he is also making the family situation very difficult. So I guess I'm telling all of this to say that I think when things are coming unglued in whatever capacity, it can smooth the way some, but it won't fix it, and without treatment, the psych med dose will probably have to be increased over time til you are the top dose--at least that was our experience.
Good luck, and keep us posted!
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We have seen him as well. he did a lot of testing for us and was very kind and looked at all corners. He gave us another abx but then I think stood back a little knowing that we were seeing an LLMD soon after.
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Mold, not mild...
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We are in a similar situation with my dd11 who has been having constant rages, issues with clothes, you have to breathe the right way (and there is no right way), chew the right way, etc. We just put her back on a low dose of abilify to take the edge off due to quality of life.
By no means is my daughter well, and we are doing some other testing like MRI and lumbar puncture. But I would say this....we see an LLMD in Colorado because, while he does treat aggressively with abx, he also uses lots of herbals and supplements.
When we started treating this, I scheduled an appointment with Dr j. I love him based on reputation and what he has given up for our kids alone. But while we were waiting, I realized that some completely different (and more traditional joint issues) with my older daughter were probably also lyme. So I had to look for someone who was within driving distance and take my whole family.
That one (dr c in mo) did not work out for us, but then we found out about our doc in Colorado. Like I said, my dd11 is not well yet. But he keeps looking. He does ART, and as kooky as it sounds, I believe it works.
Appointments are inexpensive (he takes ins), but the cost of supplements has been high because my dds have needed a lot of them. I would think all. In all, it's probably comparable to dr J's cost.
Anyway, please know that I am not saying anything negative about dr J...
We are still doing some other testing...MRI, lumbar puncture, 23andme, etc because we are looking at what is keeping her from healing, and I think it's possible that encephilitis is part of the picture. Our LLMD did give us a cyst buster this time. And we discussed mild testing, so we'll see what comes of that.
I know it seems like a lot, but, like you, our life has become unlivable. She is a little better on abilify. We have our first appointment with a new immunologist in Colorado this am. Hoping he can help us line up an ivig so that we'll be ready to go with that if lumbar puncture shows nothing.
Good luck to you. Pm me if you want our doc's name.
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My daughter is not aving a "flare" in the classic pandas sense.....but she has PANDAS and is so out of control that we have to do something....This is the reason we have been looking for ivig....we did 't even look at it as an option for a long time. But now, 8 years after all of this started, I have to consider everything as a possibility.
Her thyroid tests were fine...except for tpo, which could be an indicator of (but is by no means a diagnostic tool in and of itself) an encephilitis....we have an MRI and a lumbar puncture scheduled for that. But our neuro is not a pandas doc and would most certainly go toward long-term, high dose steroids (which would not be good considering she has lyme).
So while we are still investigating other options, I feel like I need to try to get things lined up for a possible ivig. What would you do?
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We saw our llmd today, and we were discussing my daughter and whether it would be beneficial to pursue ivig. (We also discussed mold, etc.). He was leaning toward no or not yet....so my question is....is it enough to have a cam kinase II level of 178, and does that ever lower on its own? My daughter's test was almost 3 years ago. That score (along with normal strep titers) did not make our immunologist talk about ivig or the like--even when I mentioned it. This was in feb.
We are seeing a new immunologist Wednesday who deals with pandas....
So my question is...should I emphasize that test more when we see him? I don't really want to so that test again...we've for so many irons in the fire that I feel like the money would best be spent elsewhere, but.....
Honestly, I think she's got a huge mix of things including pandas, lyme, Bart, etc....and we are looking at the mold issue.
Any advice appreciated.
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Inexpensive anti-parasite:
Boil a few cups water, after done boiling add handful of chopped cilantro and let seep about 10 min. After it has cooled down, add a spoonful of organic miso. Quite tasty. Drink daily per Dr. KI'
I will try that. I know that parasites have been an issue for her. She is currently taking Alinia, and we have done some other anti-parasitic treatments, but maybe not enough.
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A lot of fantastic ideas on this thread. On the mold issue, if you've seen mold in your ducts it makes sense to do both the genetic testing and test your house. We did the HLA tests through LabCorp. We found that I'm mold susceptible and my ds is both Lyme and mold susceptible. A good place to start on the house is the ERMI test from Mycometrics. I think it was $300. A mold expert we brought in told us that the ERMI looks for mold DNA, so it can be live mold or the DNA from mold that is no longer living. The reason to look at it from that aspect is that the mold toxins can still be around after the mold is dead. Our ERMI test was very high and we couldn't smell mold at all - nor had we seen any at that point. All air testing came out perfectly clean. In the end, we sold our house because by then I was too sick to deal with a remodel/remediation. I have to say, that after I was treated for 4 weeks with cholestyramine, I could suddenly detect a strange smell in our house (when I went back to meet with the realtor). If you are open to moving, and have seen mold, I would do that (before you test your house) and test any future house before you buy it. Remediation is very expensive and can easily be botched.
On the trifecta.... yes, absolutely. In fact, it is very common for people with Lyme to become susceptible to mold toxicity. I don't know if the Lyme "turns on" the genes involved in mold detoxification or what, but it's very common. And many Pandas/PANS kids seem to have Lyme & co as underlying infections. It seems highly unfair, I know.
On the yeast/fungal treatment success, I don't think those medications impact mold toxicity at all. You have to treat it with cholestyramine to start, and then some other medications. Mold is something that needs to be pulled out of the body as a toxin, not something you need to kill, like yeast. So you may want to test for yeast and see if that needs to be addressed too.
Oh, the moving issue....ugh. I am afraid that we could move into the very same situation. We have four rent houses, and I have seen moldy vents in at least two of those....particularly during a hot, hot summer where I assume mold is so easily made due to ductwork in the hot attic and condensation forming. We have talked about moving to our favorite place...Colorado, but then there are basements.....Guess we'll think about all that again.
What kind of doctor to we see to get cholestyramine.....assuming our LLMD does not write a script?
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I agree with mama.
Treat mold by pulling toxins out with cholestyramine and removal from toxic environment (or removal of toxins). My experience was that mold was underlying cause of all our other suspected illnesses. Changing my family's environment was the first step in successful treatment. Second step was cleaning up our diet. I'm now investigating how to heal the leaky gut to be rid of all our food intolerances for good (looking into GAPS diet for that now).
Mold...it is a nasty, nasty, devastating problem that is invisible. I have found most mold testing to be unreliable except for the ERMI testing recommended on Shoemaker's website. I prefer to use Mycometrics for ERMI lab testing.
I think this makes sense. I have talked to our LLMD who we will see within the next week to ask if he can test for mold, also (through ART). Maybe I need to have her do the blood gene test when we get back. I assume that if our LLMD finds mold through ART he will prescribe cholestyramine, but if he doesn't....do most naturopaths do that? How else could I get it?
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Woweeeee!!!!! Congratulations! That IS amazing--no evidence of autoimmune in blood! So happy for you!
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I would highly suggest that if you are going to test for mold, spend the extra money, and have it done by a professional mold expert (you can look them up in the yellow pages.) If you are in the Philly area, PM me, and I'll give you the name of the company we used. It is very well worth the money. Unfortunately, if you find mold, you really will have to remediate, and that can get expensive, but it has made such a difference since we finally found the source of the "smell". Don't cut corners.
I would also look at diet. When my DS is following his diet (GF, DF, no corn, nightshades, soda, sugar...determined by muscle testing, and confirmed by 3 different people muscle testing) his mood is exceptional. He's a college student, so unfortunately it's very hard to keep in "in line", but it really has made all the difference for him. Otherwise, he can get extremely nasty, have terrible mood swings, break walls, etc. Keep in mind that what he avoids may not be the same as others (my DH can eat wheat, for instance.)
When we started treating for mold and diet, we started to turn the corner. We also do other alternative treatment, but these two things were the beginning of the turning point for us.
We are spending so much right now.....I guess I will try to see what her genes say first. Does that make sense to do? Can you tell me what the price range was for testing? (You can pm me.) We are in Texas, so unfortunately, I guess I'd have to go by web reviews. Did you have a moldy smell in your house? We don't have one, but if we have been gone for a few days, when we come back there is a musty smell.
We live in a very hot, humid climate, in a house built by a tract builder that I KNOW cut many corners, so I am not sure of how to keep our a/c vents perfectly clean....I have seen our vents look moldy and had the vents and the ductwork professionally cleaned, but who knows what that really did.
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I was also thinking her lack of treatment response could be mold related.
Here is a link for mold testing.
http://www.survivingmold.com/diagnosis/lab-tests
The other thing to think about is testing is her Nagalase level. "Nagalase is an enzyme that prevents Vitamin D receptors (VDR) from being activated on the surface of the macrophage. As a result, macrophages are not "activated" and our immune systems are not able to properly respond to invaders". We see one Dr. who believes elevated Nagalase needs to be addressed prior IVIG or the immune system will never be able to rectify itself. It is common for Lyme suffers to have elevated Nagalase.
Thanks for those links. Will check these things out in detail.
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Reading your post reminds me of my three kids....is there any possibility your home may mold in it? Do you and/or your husband have any symptoms as well?
Interesting thought.....my husband and I are both positive for lyme (as are all of our children), but we don't have any symptoms that just jump out as lyme or mold or anything out of the ordinary...right now. I have sore soles in the a.m. (our LLMD says I don't have Bart through ART, but?), and my husband has spells of migraines.
BUT.....when dd11 was 8 we did a yeast detox diet complete with nystatin, diflucan, a lot of vit d, vit c, fish oil (2 TSP), and although we did not completely get her off of her psych meds at that time, we were able to significantly reduce them. She was not 100 % but much better. For a couple of months that held. However, things gradually faded, and within 6 months, she was again back to the same thing. That's when we found out about PANDAS, and other than motor tics, she fit that so clearly.
I am thinking that since mold is a fungus, maybe there was some connection....? And.....when she was really young, we had a leak in our roof over her room that only appeared if we had a spell of really bad weather. We didn't see any mold, but when my husband moved her dresser to tear out the sheetrock, there was a piece of wood underneath that had mold under it when we picked it up.
Is it possible to have the trifecta of chronic illness (psychiatric, anyway)? PANDAS, Lyme and mold? I can barely wrap my mind around that. Does 23andme tell you anything about having the mold gene?
Grapefruit seed extract is doing something
in PANS / PANDAS (Lyme included)
Posted
Dd8, following in the footsteps of dd11 has become incredibly rageful. Like dd11, he has lyme/Bart/babesia. He had very high titers for ebv (igg). Until now, he has been hyper with clothing sensitivities, OCD, and periodic inability to handle any frustration.
He has responded to some things that I don't often see mentioned. Like, for a while, lysine knocked out his extreme anger, but then that stopped working. 5 days ago we started grapefruit seed extract, and it has calmed him, no question about it. He can still be hyper and uncontrollably silly, but it completely took the anger away and brought back sweet.
Last night it started to wear off toward the end of a long day, and he fell asleep without the gse. This morning he woke up with anger x10. Advil calmed him some, but he was just downright mean--calling me a dummy, a jerk, yelling at me in the meanest voice--he did not hit me, but I could feel it coming--he has never done that before, but he was furious--over basically my presence.
I know that gse can be helpful with yeast and probably breaking up biofilms....but specifically, with the biofilms I'd expect a herx instead of rapid improvement. Is there another reason it could be helping?
Also, he was so out of control today that I called one of the PANDAS immunologists that we have seen, and they had just had a cancellation and can take him tomorrow. I'm starting to pack. Here's hoping the second kiddo will have an easier fix.