Betty04
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Posts posted by Betty04
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LLM- does the niacin just counteract the B12 or the methyl folate as well? I doubt the B12 was the problem since he took a high dose in the past via injection and the oral form is poorly absorbed.
Big mighty- the empirical labels product looks very interesting- hopefully someone can comment on the lab or product.
Thanks everyone for the input- Lots to think about.....
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Thanks- I suspect the B6 is the problem and not B12. We did b12 injections with no adverse reaction many years ago but B6 or P-5-P always results in an increase in tics. Any suggestions on a good brand to get for B12? I have Metagenics methylfolate alone but don't want to try it without the B12 on board. I am waiting though the weekend to see if things calm down off the methylfolate and then I'll think about trying a different combination. Thanks again for all the help!
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Thanks so much for the response. I thought I was going slow since I cut one capsule into 5 doses so that would be about 200mcg daily. My son is also 60 lbs so LLM's daughters dose of 67 mcg every other day puts that in perspective! This was the product recommended by our doctor but I am questioning the additional B's. It seems both of you supplement with B12- is that bc it is necessary with the methylfolate or you are using B12 to address other issues. My son has always had an increase in tics each time I have tried B6 or P-5-P so I was hesitant to use this product since it has a high dose of this B as well - but I thought maybe the combination would prove helpful. So I guess I'm not sure if its a dose issues or a problem with all the B's combined. Can I just use plain methylfolate or is it necessary to have other B's on board? Thanks so much for all the help!
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Hi
My son tested homozygous for MTHFR C677. I started a very low dose of Methyl Guard from Thorne Research and after 1 week his tics are significantly worse. This follows a dramatic improvement after taking liposomal glutathione. Any Methyl "experts" have any insight into why the increase? I stopped it yesterday but the tics are still bad. Any way to reverse it? I was thinking of giving Enhansa? The product I gave had the following ingredients: (I used one capsule over 5 days- so the dose was not as high as below)
Three Capsules Contain:
Riboflavin (as Riboflavin 5'-Phosphate Sodium) 90 mg
Vitamin B6 (as Pyridoxal 5'-Phosphate) 45 mg
Folate (as L-5-Methyltetrahydrofolate from L-5-Methyltetrahydrofolic Acid, Glucosamine Salt) 3 mg
Vitamin B12 (as Methylcobalamin) 3 mg
Betaine Anhydrous (Trimethylglycine) 1.8 g
Thanks so much for any help!
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My DS8 is being treated for the last year for Lyme, Bart and babesia. We have made no progress and a times are at a worse point. 3 years ago when diagnosed with PANDAS he had 2 days of HD IVIG 2kg/g. His response was very negative and continued to be so for months after. He is IgA and IgG deficient. Discussed the pros and cons with our LLMD today about trying IVIG again as he stated others have had a positive response. Would love to hear from those who have had a positive and sustained response. Thanks for any feedback!
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Hi Fixit,
Keep trying to PM you but it doesnt go through?
Thanks for the info. I will search.
Hope all is well on your end
Hey Betty,
I just checked out the lyme site and juliafaith posted something regarding her child and hhv6 and removing mold. Maybe you want to pm her. post is "holding steady"
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Hi,
Anyone treat high IgG HHV-6 titers and have an improvement in tics. My sons IgG level is 30 times normal - the highest his doctor has seen? Thanks for any shared experiences.
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Hi,
Just wondering if anyone has used Bab-1 for babesia. My son started it last week and his dose is gradually increasing to 15 drops twice daily and he is currently at 2 drops twice a day. A herx response would be a good thing so I was curious how long before people have noticed any herx? Thanks.
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Thanks. It looks like a virus since he is still sick today and hasn't had any meds or bab-1. Just hope we don't take too many steps backwards with this illness. Thanks again.
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My son is being treated for babesia. His primary symptom is motor tics and a facial twitch. Since Nov he has been on Azith, Mepron and Tindamax. Though he has been treated for years prior with antibiotics and last year dual antibiotics for Lyme with no improvement. His tics have improved on this babesia regime. Last week his llmd discontinued the tindamax since my son had developed horrible reflux. Within a day of stopping his tics worsened and his dry cough that began with treatment increased. Friday evening he took 1 drop of Bab-1 and another drop Saturday morning. By the afternoon he was crying with neck pain and a headache. He calmed down with distractions, ate dinner and took his meds. However he threw up his dinner before bedtime but went to sleep okay. Then he woke up in the middle of the night with a horrible headache and fever of 100. He took Advil and woke up with no fever, slight headache but now he says his throat hurts. Does this sound like it could be a herx from bab-1 or a virus? It was seeming like a herx but don't know about the sore throat. Thanks for any help!
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Iowadawn
Would you mind sharing more specific details of your sons rash? My son started getting dotted line rashes by his armpits, upper arms and back. Just trying to see if I can link this rash to a specific co-infection. It's definitely not a stretch mark type rash. Thanks for any help.
If you go to a site called dr.jones kids. He has a bunch of rash pictures. There is a picture of a small, thin scratch-like rash on a lady's hand. Best online example I can find. Bartonella. Our ds's look like this, but are usually longer. From a distance they will remind you of the "fingernail across the skin" attack. The red is dashed, but all below the skin surface. Earlier this year after one IVIG his upper back had MANY long rashes. He has had a few show up on his neck. They will hang around for a few days and fade. Right now he has none. We have an IVIG this weekend--I bet they pop out again. It's a weird time & my description & writing stinks--I hope this helps you. Dawn
Thanks Dawn! I have studied repeatedly the rashes on Dr J's website. I have not yet found a lines of petechial dots as a rash except for one other mom that shared photos with me. We are currently treating my son for Bartonella with Biaxin and Rifampin and 3 months into this course he still gets these rashes. We are going to continue to treat Bart for at least 6 months and then probably treat Babesia when his Bart IGG turns negative. Just trying to figure out if its Bart to judge clinical response to treatment, but I think its impossible to know. Thanks again for your response and hope your son responds well to the latest IVIG!
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Iowadawn
Would you mind sharing more specific details of your sons rash? My son started getting dotted line rashes by his armpits, upper arms and back. Just trying to see if I can link this rash to a specific co-infection. It's definitely not a stretch mark type rash. Thanks for any help.
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Thanks for the responses. I kept him home from school today as I would not send him if he doesn't feel well, especially since its just kindergarten. By noon his congestion was not bothering him but once he got back into his bedroom tonight it all came back. I had the house air filter changed today and dusted, vacuumed and washed and replaced bedding. The Hepa filter in his room we have been using for 4 years with no issue so I don't think its that? Tomorrow night I am going to experiment and have him sleep in my bedroom. I'll post if I figure anything out. Thanks again for the feedback.
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Hi,
My 6 year old son is suffering for the first time with horrible nasal congestion that started with the spring allergy season. I initially took this as a positive sign that this is the first time his body has responded to allergens with an "allergic reaction" instead of a neurological reaction of increased tics. However the pattern of his congestion is confusing. His congestion only really occurs at night not when outside playing. We have been dosing him with benedryl and sinus rinses but it does not stop him from getting up in the middle of the night sneezing and stuffed up. And if it was seasonal allergies I would expect the night to be his best time since I never open a window in my house, the whole house has an air filter, and he has an additional hepa filter next to his bed and I dust and change sheets regularly? So I guess my question is, is this maybe related in some way to tick born illnesses? The congestion began before any change in antibiotics?I I'm desperate this morning as he is begging me to stay home from school because he can't breathe, and this is after 2 sinus rinses and 2 benedryl doses! Thanks for any thoughts!
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Thanks for the responses. I am going to assume its fine since its not like I am looking to increase the dose!
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My 6 year old son started taking Rifampin 150mg twice daily last weekend. He had 2 doses and we stopped to determine if a rash he had was a side effect or herx. The llmd said it was a herx and restart the Rifampin. After the initial first 2 doses his urine was orange/red, as would be expected with this drug and actually my understanding is that is a good thing because you know the medication is being absorbed. However, after restarting the medication on Wednesday his urine is no longer orange/red? I have been giving the Rifampin an hour before eating to maximize absorbability and not interfere with his Biaxin. Does anyone know if urine needs to stay colored to assure correct absorption? From what I read on the internet it seems to imply that without colored urine the medication is not optimally absorbed? Thanks.
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Just a thought.... you could ask the llmd to run a urine dot blot to check for lyme bacteria or a urine PCR to check for antigens in the urine. We ran the full igenex wb and co-infection panel at 12 weeks post HD IVIG. We could not consider the results valid because my son's overall IGG tends to be around 400 and at 12 weeks it was 1000- so obviously the donor antibodies were still there. If you do the Igenex testing I would recommend running IGG levels at the same time to help determine the validity of your results. For the urine dot blot, my son took provocation antibiotics ( I think, Alinia, Azith and Ceftin) for a week and he was positive on 1 out of 3 samples. He is currently being treated for lyme and his WB and co-infections have been tracked over the last several months... still negative overall, but high immune complexes, CD 57 of 25. Feel free to PM me if you want more details.
Thank you for the replies--as for myself, yes, I do have some of the descriptions- but I'm also hitting pre-menopause, exhausted with a pandas child, so it's kind of hard to say...and the pics of the hands look familiar to me, but I'm thin and getting older...
As for my dd6, I am forced to wait this out for a few months anyway (IVIG 5 weeks ago) so I am watching and observing.
I think you are right, test her first-
Thanks again, what a wonderful board.
Praying for you all, sending good thoughts-
Sarah
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Clindamycin has always been the best antibiotic for my son, maybe a clue we really need to treat babesia. But it is the worst tasting so we skipped the liquid and hide the powder from the capsules in "pockets" of ice cream or sorbet. Which can be limiting when the dosing is 3 times daily but the results were always great, they just did not last for us. Good luck!
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My 6 year old takes Biaxin and Omnicef both right after breakfast and dinner. I was told by my doctor and pharmacist to give the Biaxin with food. My son has also complained on and off for the past 4 months he has been taking it of getting a bad taste. Biaxin has a common side effect of causing a metallic taste - but it's never been so bad that a treat afterwards can't take the taste away. HTH
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Wow! You did the impossible and separated the grey into black and white
Thank you so much for writing so clearly and taking the time to help me understand.
I think distinguishing between a tic and OCD can be like looking at a puddle of gray paint - is it white with a little black in it or is it black with a little white in it? Somewhere there's a crossing point, where it's more obviously a tic or OCD. But where that line is can be really hard to tell.
I think of movements in three categories -
involuntary - such as myoclonic jerks, seizure movements and choriform movements (finger movements that look like piano playing, or search some youtube videos).
voluntary but "have to" do them - the majority of tics are like this - I think of it like having an itch on your nose - you "chose" to scratch it, but it will drive you mad with distraction if you resist and eventually, you only get relief once you scratch the itch. It may be a choice, but it's a choice you "have to" make. However, there's no "reason" that you do it.
OCD movements - these are things you "have to do" but are driven by a thought. For example, my son has a "punching" compulsion where he punches his bladder, but it's purpose is to "check" if he needs to use the bathroom (it's connected to urinary urgency). So the OCD is a checking obsession and the compulsion is the punching behavior. In the past, he had to touch things 4 times - again an OCD "evening up" or symmetry obsession with a touching movement as a compulsion. The difference, in my mind, between a tic and a compulsion, is that OCD usually has some sort of "reason" for the movement, a pre-meditation (a purpose), not just a premonition (meaning you feel it coming but there's no reasoning behind the action, nothing bad will happen if you don't do - like feeling a sneeze coming on).
OCD generally brings fear and anxiety, like something bad will happen, if you don't comply with the compulsion. There are some general categories - contamination fears, checking/symmetry, scrupulosity, hoarding, and intrusive thoughts. A tic just brings physical discomfort if you don't comply. Your brain may be telling you to do both, but only OCD brings fear of not complying.
It's a gray area and not clear cut. When my son jerks his head back, I think it's a tic. When he punches his gut, I think it's OCD. In his mind, the punch has a purpose to it.
In our case, there were also obvious OCD behaviors beyond movements. DS was obsessed with clocks and time and had to stop playing in order to watch his favorite numbers appear on the digital clock, he had to walk into a room a certain way or else he'd have to go back and do it again, he had to ask a lot of questions over and over for reassurance... I'd recommend reading a few OCD books or reviewing a list of OCD behaviors posted under the helpful threads section of the forum for examples.
From your description, you could argue either way, but without a "reason" other than "I have to", I'd say the eye blinking is a tic. Just my opinion.
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Hi,
Just wanted some feedback on this... my 6 year old son has a history of motor (e.g., blinking, wiping, neck movements) and vocal tics but we have never identified any OCD behaviors. However in the car yesterday he was blinking extremely rapidly, to the point where it seemed voluntarily done. This is not the first time we have questioned the tics being voluntary but his age makes it a tough call. Anyway, when I asked him if he was doing that fast on purpose he told me "my brain says blink faster."At first I thought it was just his way of describing the urge/need to rapidly blink but then he offered, "sometimes if I don't do it, my brains says it louder." This was the first time I have ever had him acknowledge or state any thoughts associated with tics. And as you would imagine I have been assessing this for years with him. But I have never used terms like his brain talking or anything leading so that he can just be repeating what I have said. Mostly I have been observing. I did not question him further because the blinking was so out of control and he told me he needs to think of something else to stop.
Have others had their children describe their tics in this manner? Thanks for any thoughts on this
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Anyone have this as a symptom of a specific co- infection? My sons blinking tic has increased and his complaints of itchy eyes have resurfaced. He even has scratch marks on both inner sides of his eyelids from the rubbing and scratching. I do not believe this is an allergy as it has occurred in the past when his tics worsen. Any thoughts will be greatly appreciated
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Don't know if this is any reassurance but we see an llmd (you can PM me if you want to know who) for my 6 year old son. In our appt last week we were discussing starting Cipro and he felt it was safe and gets criticized unjustly. We may rotate to it in June to treat bartonella- just waiting until school is out before making any changes.
HTH
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thanks wendy.
ds started Doxy on monday..per consversation with another lyme?myco p mother..
our llmd suggested 200mg but after speaking with mom and her sons age and similarity..i started him at 50mg...will hold there for a week or longer then up to 100mg..i think for my ds slower is better.
Its the only abx he is on currently. i am concerned about his gut and want to be careful.
how ruff is doxy on the gut?..he does sit up while taking it with food..but is it any more or less intrusive on the intestianl bacteria..this is a general question for anyone..
do you think doxy is a good choice currently?
do you have any thoughts on sons new WB results?
oh..should i use the blood at igenex to test for co's or should i redraw?
Fixit-
Not sure if this makes sense to apply to your son's WB but this is what our llmd said this week when my son's IGM changed from positive 39 to IND 39 with no clinical improvement ... antibiotics are treating the lyme but the majority of the lyme is still in cyst form so there is no improvement in his tics... which basically means we have a long, long way to go... which of course contradicts my earlier post today of being impatient after 4 months on current antibiotic combo
Methyl help needed
in PANS / PANDAS (Lyme included)
Posted
Thanks again for all the help! I just gave my son about 25 mg of niacinamide - will post an update on his tics. So appreciate all the advice!