A few new supplements that have helped me

[MichaelTampa]

About 10 days ago, started on some new supplements and they have made quite a difference. From the TS conference DVD's, I heard glutathione levels are very important in chronic conditions, and the combination of alpha lipoic acid and n-acetyl cysteine can help restore these levels. I had been taking the alpha lipoic acid (ALA) for a while, but added the n-acetyl cysteine (NAC). Dr. Martin Pall's book "Explaining Unexplained Illness" discusses a lot about the cycle of nitric oxide and when oxygen gets added and subtracted. It is an appropriate cycle, but when it gets heated up and happens too much, bad things happen and you have chronic diseases that are hard to get rid of, because it's hard to get out of the cycle. Seems pretty relevant for PANDAS, and he does include rheumatic fever as one of his chronic diseases he discusses.

 

Okay, I also added an "oxygen" supplement (Oxygen Supreme, but there are many brands), and started taking Zinc in liquid form--only 6 mg instead of 25 mg tablet--as I heard Zinc is so important, and I do believe the liquid is more usable (particularly for those with digestive issues, such as myself), and a couple Xymogen products which are expensive--Immunotix (beta-glucans) and Xyrographis (anti-bacterial anti-viral ...)--both of these for immune system.

 

This combination of things has helped a lot, and also reduced need for some of the other pills I have been taking. Not necessarily suggesting the whole combination, but for anyone looking for ideas, I think the ALA and NAC and oxygen and Zinc are good ones to consider for chronic conditions like PANDAS or TS.

 

The same book mentioned above give good mention to Albert Donnay and his theory that carbon monoxide poisoning can cause a lot of chronic conditions and multiple sensory sensitivity. From Albert Donnay's suggestion, I have been on oxygen therapy (breathing equipment) for 2 hours a day for about 2 1/2 months now, and it has definitely helped sleep. While Martin Pall believe's carbon monoxide poisoning is but one of the possible causes for chronic conditions, I think his belief is, regardless of cause, it can be important to work on the nitric oxide cycle to get out of vicious cycle, and oxygen treatments and ALA/NAC can help do it. Not nearly done with the book, so there is probably more I have not gotten to yet.

 

Well, a bit rambling here, hopefully it makes some sense, just wanted to pass on a few ideas that seem to have made a good bit of difference in a short period of time.

 

Michael

[Kayanne]

Thanks for the info!

 

Do you also take antibiotics?

 

~Karen

[GatsMom]

About 10 days ago, started on some new supplements and they have made quite a difference. From the TS conference DVD's, I heard glutathione levels are very important in chronic conditions, and the combination of alpha lipoic acid and n-acetyl cysteine can help restore these levels. I had been taking the alpha lipoic acid (ALA) for a while, but added the n-acetyl cysteine (NAC). Dr. Martin Pall's book "Explaining Unexplained Illness" discusses a lot about the cycle of nitric oxide and when oxygen gets added and subtracted. It is an appropriate cycle, but when it gets heated up and happens too much, bad things happen and you have chronic diseases that are hard to get rid of, because it's hard to get out of the cycle. Seems pretty relevant for PANDAS, and he does include rheumatic fever as one of his chronic diseases he discusses.

 

Okay, I also added an "oxygen" supplement (Oxygen Supreme, but there are many brands), and started taking Zinc in liquid form--only 6 mg instead of 25 mg tablet--as I heard Zinc is so important, and I do believe the liquid is more usable (particularly for those with digestive issues, such as myself), and a couple Xymogen products which are expensive--Immunotix (beta-glucans) and Xyrographis (anti-bacterial anti-viral ...)--both of these for immune system.

 

This combination of things has helped a lot, and also reduced need for some of the other pills I have been taking. Not necessarily suggesting the whole combination, but for anyone looking for ideas, I think the ALA and NAC and oxygen and Zinc are good ones to consider for chronic conditions like PANDAS or TS.

 

The same book mentioned above give good mention to Albert Donnay and his theory that carbon monoxide poisoning can cause a lot of chronic conditions and multiple sensory sensitivity. From Albert Donnay's suggestion, I have been on oxygen therapy (breathing equipment) for 2 hours a day for about 2 1/2 months now, and it has definitely helped sleep. While Martin Pall believe's carbon monoxide poisoning is but one of the possible causes for chronic conditions, I think his belief is, regardless of cause, it can be important to work on the nitric oxide cycle to get out of vicious cycle, and oxygen treatments and ALA/NAC can help do it. Not nearly done with the book, so there is probably more I have not gotten to yet.

 

Well, a bit rambling here, hopefully it makes some sense, just wanted to pass on a few ideas that seem to have made a good bit of difference in a short period of time.

 

Michael

 

While under the care of a DAN! doc during my son's last exacerbation, he insisted on NAC and zinc daily. When my son was better and life got back to good we were permitted to discontinue those supps (there were many we were encouraged not to discontinue...ever). When he started another exacerbation 6 wks ago the DAN! doc started him on Fluconazole (antifungal) which is the route he takes versus abx. He told me after we treated yeast, he wanted my son on 600mg of NAC again. I never have restarted the NAC because we continue to treat with Fluconazole (to keep yeast at bay while treating now with augmentin). Any idea why NAC was to be added after yeast treatment instead of during?

 

Many thanks,

Gayle

[MichaelTampa]

Karen -- I have not been on antibiotics yet, but will be soon soon soon. It has taken some time from getting the CamK score in the PANDAS range to choosing a "PANDAS doctor" and now finally a treatment plan. In the meantime, it was clear that yeast infection was very important to treat in its own right, and certainly if the PANDAS treatment was to be antibiotics. So, the timing has worked well to get the yeast under control and now I believe I'll be able to handle antibiotics without the yeast going crazy (but we'll see soon). Dr. K. believes my PANDAS is from mycoplasma pneumonia and I just picked up a prescription for clarithromycin (generic of biaxin), which he chose because it is particularly good with mycoplasma pneumonia. I'm going to get some lyme blood tests on Monday, and don't want to mess them up, so will start the clarithromycin Monday night ... very excited to think there's a chance we might get there, it's been a tough time for many years!

 

Gayle -- From the sources here and there I have heard things about NAC and antibiotics and fluconazole, I have never heard anything that would suggest mixing them would be a problem. There functions seem so different. The fluconazole is trying to kill yeast, the NAC is providing an ingredient for your body to make glutathione, which will be helpful in its antioxidant qualities. I have only a guess why your doctor might have suggested waiting for the NAC instead of right now, and it relates to the same idea in your post in another thread ... perhaps the doctor does not want to add another variable in the equation ... if there's improvement, "what was it from" will be the unanswered question, and having a true answer to that question does have value for treatment plans in the future. (And of course, doing everything you can right now to help the situation, also can have value, particularly when the situation gets desperate.)

 

Michael

[Stephanie2]

That's very interesting. In the DAN circle, ALL toxins lead to chronic illness which is what we have been basing my son's treatment plan on for the most part. We have removed many toxins from his environment and have added supplements to increase the production of glutathione, which in turn will speed up the detoxification process. In our case, my son's "cysteine" came back very low. But instead of supplementing him with NAC we are giving him the following, which will increase cysteine/glutathione in a round-about way: methyl B12 injections, trimethylglycine, folinic acid, and many supporting B vitamins.

 

As far as PANDAS goes, my son's main problem is overall inflammation (from foods, viruses, bacteria including but not limited to strep). When his inflammation is down, so are his PANDAS symptoms. We are finding that giving him steroids and antibiotics has just been too much for his system (increases gut yeast/bacteria badly) so we are trying out some herbal products. Lately we tried Biocidin which had a very positive effect. My next trial will be Red Reishi Mushroom (anti inflammatory, antibacterial, antifungal, etc.).

 

BTW, why is zinc so important? I am wondering b/c my son's zinc/copper ration came back way off (low zinc/high copper). We started him on 50mg zinc. But why is it so important in relation to PANDAS?

 

Thanks for the tips, I am going to keep NAC in the back of my mind (I actually have some on hand)! Glad you are feeling better!

 

Stephanie

Karen -- I have not been on antibiotics yet, but will be soon soon soon. It has taken some time from getting the CamK score in the PANDAS range to choosing a "PANDAS doctor" and now finally a treatment plan. In the meantime, it was clear that yeast infection was very important to treat in its own right, and certainly if the PANDAS treatment was to be antibiotics. So, the timing has worked well to get the yeast under control and now I believe I'll be able to handle antibiotics without the yeast going crazy (but we'll see soon). Dr. K. believes my PANDAS is from mycoplasma pneumonia and I just picked up a prescription for clarithromycin (generic of biaxin), which he chose because it is particularly good with mycoplasma pneumonia. I'm going to get some lyme blood tests on Monday, and don't want to mess them up, so will start the clarithromycin Monday night ... very excited to think there's a chance we might get there, it's been a tough time for many years!

 

Gayle -- From the sources here and there I have heard things about NAC and antibiotics and fluconazole, I have never heard anything that would suggest mixing them would be a problem. There functions seem so different. The fluconazole is trying to kill yeast, the NAC is providing an ingredient for your body to make glutathione, which will be helpful in its antioxidant qualities. I have only a guess why your doctor might have suggested waiting for the NAC instead of right now, and it relates to the same idea in your post in another thread ... perhaps the doctor does not want to add another variable in the equation ... if there's improvement, "what was it from" will be the unanswered question, and having a true answer to that question does have value for treatment plans in the future. (And of course, doing everything you can right now to help the situation, also can have value, particularly when the situation gets desperate.)

 

Michael

[Suzan]

Thanks Michael and good luck with your new treatment plan! I looked for this post again tonight because I am really thinking that the strep that messed up my girls messed me up a little too. I am realizing that my sensitivity to noise is very bad and sensitivity to too much activity too close to me, clutter and lack of organization making me feel panicked and maybe some mild OCD. I have started treating myself for candida as I have had trouble with that in the past and I'm thinking some of the supplements you mention may be worth a try hfor myself. I am finding it increasingly hard to handle my daughter, even though she is doing much better. Maybe the temporary peace and quiet made me lose my patience somewhere but I really think I'm not feeling well.

 

This post is a good reminder to me to be sure to tell my hormone doctor that I see what is going on as maybe something else I take is making things worse or maybe he has some supplements to help as well.

 

Susan

[kim]

Sometimes the bad guys use these supplements too. I was wondering if NAC could be used by a yeast/fungus possibly making it stronger?

 

Michael, this was something I thought you might like to read

 

http://www.ncbi.nlm.nih.gov/pubmed/19427509

 

N-acetyl cysteine protects against ionizing radiation-induced DNA damage but not against cell killing in yeast and mammals.

 

 

Also, when ever NAC/glutathione come up, I always think about how acetaminophen plays into that pathway and the recent suggestion that a popular pain reliever containing it, has recently been hinted to not be such a great thing to give kids prior to immunization. They're saying it interfers with antibody production, but I have to wonder if some are catching onto the idea that it might not be a great idea for other reasons too. We no longer use acetaminophen here at all.

[kim]

opps...double post

[MichaelTampa]

Kim--Thanks for posting the link to the study. I do suffer problems with the wireless/cellphone EMF's and fluorescent lights, and I believe some would classify those as ionizing radiation. I will hope to see it make some difference in my ability to withstand those things, though I have not noticed that yet. Must say, I didn't understand much else from the write-up. Do you know, is "saccharomyces cerevisiae" a good yeast or bad yeast? Was it saying it helps the body do okay but doesn't interfere with the fact that the radiation kills yeasts? Or was it saying the yeasts do okay with it too? Yes, perhaps the NAC will help the yeast somehow, I think that's what Gail was wondering, I guess anything is possible, though I haven't heard (unless this study is saying that).

 

Stephanie--The recent presentation I saw emphasizing zinc so much was from a homeopath, and I really don't think she gave much in the way of reasons, and if I've heard one, I don't remember it.

 

Michael

[bmom]

Michael, can you tell me the dosage you take of ALA and NAC? Are they spread out or given on one dose? When you say the help, what symptoms-tics?

[MichaelTampa]

bmom,

 

ALA--I take 1 tablet at breakfast and 1 tablet at lunch. Each tablet has 600 mg ALA and 450 mcg biotin. It can be important to take biotin with ALA as ALA can use or deplete levels of biotin.

 

NAC--I take 1 capsule at breakfast and 1 capsule at lunch. Each capsule has 600 mg of NAC.

 

For what it's worth, if you're looking at dosages, I weigh 130 pounds.

 

I really don't have much in the way of the motor/vocal tics these days, unless you're putting the incredible desire to repeat certain phrases over and over in the vocal tics category. I haven't noticed any reduction in that. But, what really got better was mood (happy/peppy) and energy level and immune system function. I observed these things both in terms of better mood, more energy, and less fighting cold-like symptoms in the morning (it gets pretty cold here overnight in Tampa, at least for those of us with very troubled immune systems). I also observed them in terms of needing less of a number of other supplements. It is now literally 15 supplements that I am either taking less of or have stopped altogether. My conclusion there is that these supplements are getting closer to the root of the problem than before.

 

Michael

[smartyjones]

I really don't have much in the way of the motor/vocal tics these days, unless you're putting the incredible desire to repeat certain phrases over and over in the vocal tics category. I haven't noticed any reduction in that. Michael

 

 

just curious michael - do you feel you want to repeat or need to? is it connected to any other thoughts other than just the doing of that? do you feel that repeating is different from other tics you may have? do other people notice that you are repeating things or is it just something you note?

 

sorry to pry - i just find it fascinating to hear things from an adult perspective.

thanks!

[MichaelTampa]

smarty-j,

 

I'd say most of the time, if not all of the time, it is firmly in the "want" category. I heard recently that a survey of those with TS, asking if they would prefer to have TS or not, the results had more wanting to still have TS. That shocked me, and I can only guess there weren't too many PANDAS-TS included in that survey. But, the one thing I would be sad to lose is my particular appreciation for music, with really just loving songs with strong choruses, and repeating the last word in many verses--either before it is sung, after it is sung, or at the same time. It is so fun! How sad it would be to not be able to enjoy that! (But, no question, I would absolutely accept that deprivation in exchange for losing all the symptoms I currently believe are from PANDAS.) And that's all the same thing as wanting to repeat old jokes or lines from movies, appreciating Seinfeld where all they do is take one joke and do 10 different versions of it during the show, and somehow repeating mundane things from conversation gets swept in there. It's not quite as wonderfully fun (I might not feel tooooo sad about not doing that), but it still feels more like want than need.

 

As far as, is it different, it does feel different in that it's more want and control versus have to. The worry that is difficult to control, the muscle spasms when they happen, or the eye-blinking (last two not very frequent these days), they are all no fun and not on purpose. I'm really very very light on actual tics these days, nobody would look at me as a TS person without me giving them extensive conversation on how you can look at it that way. Oh yes, my wife certainly notices the repeating, and it frequently drives her crazy.

 

Michael

[Suzan]

As far as, is it different, it does feel different in that it's more want and control versus have to. The worry that is difficult to control, the muscle spasms when they happen, or the eye-blinking (last two not very frequent these days), they are all no fun and not on purpose. I'm really very very light on actual tics these days, nobody would look at me as a TS person without me giving them extensive conversation on how you can look at it that way. Oh yes, my wife certainly notices the repeating, and it frequently drives her crazy.

 

Michael

 

Hi Michael, I am wondering, can you talk about your muscle spasm's? When do they happen and do you suspect why they happen? My 8 yr old has been getting muscle spasm's in her fingers, toes, hands, eye lids and under her nose the past few days and they are really bothering her. I'm wondering if it's PANDAS or a deficency of some sort. We don't see the doc until the end of this month. I don't know if they would be considered a tic or something else. So far, I have worried about tics but never saw anything develop more than a day here or a day there until these spams.

 

Thanks,

 

Susan

[MichaelTampa]

As far as, is it different, it does feel different in that it's more want and control versus have to. The worry that is difficult to control, the muscle spasms when they happen, or the eye-blinking (last two not very frequent these days), they are all no fun and not on purpose. I'm really very very light on actual tics these days, nobody would look at me as a TS person without me giving them extensive conversation on how you can look at it that way. Oh yes, my wife certainly notices the repeating, and it frequently drives her crazy.

 

Michael

 

Hi Michael, I am wondering, can you talk about your muscle spasm's? When do they happen and do you suspect why they happen? My 8 yr old has been getting muscle spasm's in her fingers, toes, hands, eye lids and under her nose the past few days and they are really bothering her. I'm wondering if it's PANDAS or a deficency of some sort. We don't see the doc until the end of this month. I don't know if they would be considered a tic or something else. So far, I have worried about tics but never saw anything develop more than a day here or a day there until these spams.

 

Thanks,

 

Susan

 

 

The muscle spasms I get, when I get them, perhaps I'd say they can happen everywhere, but I think there are places more frequent than others--upper leg muscles a lot, lower leg muscles some, arms muscles some, chest muscles here and there, neck muscles occasionally, below the eye occasionally, and even sometimes the upper eyelid. The neck and below the eye spasms really, when they happen there, it's been more like for a week or so it really happens there a lot. Below the eye, the spot is 1 centimeter (a little less than half an inch) below the lower eyelid, and the spasms is a left-to-right motion, that one just drives me crazy. So did the upper eyelid one, which was also left-to-right motion. The other places, it jumps here and there. Again, I haven't had any of these too much in the last month or so. Except for the eye/neck ones, when they happened, it would be a few spasms on the leg, then nothing for an hour or so, then a few on the other leg or the arm, and so on. I can't say I remember the spasms happening much in the hands/fingers/feet/toes/nose.

 

Many months back, when I was taking carafate for digestive issues, they really went crazy, it was totally out of hand, until I toned down how much I was taking and eventually stopped it. Carafate has aluminum as part of the active ingredient, and I was assuming that is what caused it, but of course it is impossible to know. My mineral analyses have consistently shown aluminum as above 50th percentile, not whopping terrible, but a bigger issue than some other heavy metals such as mercury (if you use the percentiles as a good judge of how important the issue is for you, and perhaps that's just speculation).

 

Just recently, I ran into the comment that magnesium deficiency is a likely cause of muscle spasms. My magnesium doses have changed over time for various reasons, and it is possible that has played a role for me too, but, I have not really tracked the spasms in relation to magnesium intake, so, I don't really know about that as far as my situation is concerned.

 

Hope that helps. Not sure quite what information you were looking for, let me know if you had any specific questions. It can be difficult tracking down what's causing what.

 

Michael