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Clark Bent as Stupor-Man

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  1. I've been gluten free for about 4 years now and have been successfully eating out in restaurants for the past 2 fairly frequently but just recently realized there are probably a number of options I don't know about. I've incidentally stumbled upon places like Johnny Carino's and Boston's Pizza (a sports bar with gluten free pizza!) through friends and from checking this forum briefly, just saw that Olive Garden also has a gluten free menu.

    So the chains I know of are outback, pf changs, carabbas, bonefish grille, cheesecake factory, red robin, charlie browns, johnny carino's, boston's pizza, olive garden. What else is out there and seems to have at least an inkling of a clue as to what they're doing (I don't think I'm that sensitive to a little cc).

  2. I'm asking this question despite having been gluten-free for 3 and a half years now :blink: . But my diet's been quite restrictive during this time in addition to gluten and I'm only recently adding in a wider variety of foods.

    So, if I go to pick up say, a block of cheddar cheese, should I contact the company first to make sure it's gluten-free and there hasn't been cross-contamination at the manufacturing facility or is this going overboard? I know it's recommended to check for a product such as potato chips even if there's no gluten ingredients so is it likewise recommended to check something like cheese? I've probably erred on the side of caution in the past but I'm inclined to think it's fine to just buy it without checking, and I don't think I'm all that sensitive to gluten anyway as I've been successfully eating out for a year or 2 now.

    Any advice is appreciated. Thanks.

  3. There's an event being hosted at a restaurant this weekend with a buffet being served. The chef is going out of his way to prepare a meal for me separately, and I just want to know what basic information to tell him to cook and prepare a gluten-free meal that he might not intuitively know. I think the meal is going to be a roasted chicken with honey roasted tomatoes meal in case that helps anyone with what I should suggest to him or be watchful for.

    The only places I've eaten out at before have been the typical places with gluten-free menus (outback, pf chang's, risotteria, etc.). So I don't know if there's some quick list of basic instructions I could email him or something like that. Thanks.

  4. Been a while since I posted here though I skim through the thread occasionally. Hope everyone's doing well.

    Quick question. Looks like I'm going to try the Humaworm product that you all have spoken so glowingly of. :rolleyes: I know that Carla and I think Donna at the least have tried it but don't remember who else has. Anyone had any adverse reactions or lost weight or anything from it?

    I generally try to stay away from both foods and supplements with a number of ingredients though I've been expanding my diet a bit recently. I also don't want to drop even a couple more pounds as a result of taking it as my weight is getting dangerously low. I'd like to also do a bit more research into the ingredients in it to see what their purpose is, how they interact with each other and with one's body, if there's legitimacy to points I've seen raised of the ingredients themselves contributing to what is consequently expelled from the body, etc., but there's of course only a finite amount of time and I'm allocating that elsewhere.

    Anyway, just wanted to get a few additional comments from those who have tried it though I expect I'll order it and give it a shot regardless. Thanks.

  5. Quick question: Does anyone know of an organic bar that is gluten-free (preferably dairy and soy free as well though not necessarily) that has a decent protein-carb ratio and not made with almonds or cashews? I've actually found a few recently that have good protein-carb ratios (20+g of protein) and satisfy all of the above criteria except for having almond ingredients. Surprisingly enough, I think I'd handle ones made with peanut ingredients better and would think there should be some out there with peanuts the only nut used but haven't been able to find any that don't include the other nuts.

    Also, I'm sure some of you know (I saw your reply on lyme net, carla), and you may have already discussed it here, but Blumenthal's investigation into the IDSA has concluded with a number of findings critical of their development of the treatment guidelines and the IDSA has agreed to re-assess their guidelines with certain stipulations implemented. Who knows how it will all eventually turn out but great news nonetheless as far as the investigation goes.

  6. Hi Charlie, glad you popped in.

    I haven't had barium come up for me either, so I don't really know what it could be.

    I did a quick search, and you are right not much comes up. I found stuff about elevated blood pressure in connection with elevated barium and also elevated barium levels in public drinking water sources but that's about it.

    Can you consult with your Dr about it? Or what about the company who ran the test, they might be able to interpret the barium result for you.

    yeah, I think I remember seeing a reference or two to blood pressure but that's not an issue for me... I do match up with most symptoms of elevated barium toxicity, but I match up with many symptom lists so that in itself isn't necessarily indicative of much... and drinking water does indeed seem to be suggested as the most likely source of contamination in the absence of direct exposure to a known source (ie. job exposure/poisoning)

    I did talk to my LLMD about it and she was just as surprised and confused by the test results as I was... said none of her other patients have ever had a similar test result, which would go against the drinking water being contaminated locally although I suppose it's still possible that say, the water at work is contaminated due to picking up barium in the pipes at some point... though that would naturally mean everyone at my job (about 150 people) are also getting exposed to the high quantities of barium which wouldn't seem likely and since I don't drink the water at my apartment and only ingest any incidentally via veggies cooked in it or brushing my teeth, I don't think drinking water seems very likely at all... which of course leaves me at square one

    oh, and I'm going to try and get as much information as I can about the test result from the company, but I think they're limited in terms of what types of questions they can answer and the woman I talked to when I called wasn't very helpful... I plan to have another blood draw done in the next few days to see if the test results are replicated and I'll take it from there...

    thanks for checking some info out for me though...

  7. Just stopping through briefly, hope everyone is doing well.

    I had a whole blood test done by Doctor's Data labs about a month or 2 ago. I just wanted to get some general bloodwork done for mineral levels and whatnot but the test my LLMD ordered also included a number of metals. Well, when I got my test results back, much to my surprise, barium of all things was way out of the reference range (normal is <10, I'm at 100).

    I've been researching barium recently, trying to find relevant reference range information, etc. and it certainly seems that the barium level was way too high and similar, if not higher actually, than levels seen in cases of known exposure and poisoning. Apparently, high barium levels in the blood are indicative of acute exposure since barium rapidly is detoxed from the body so my very elevated results indicate either a one-time exposure that week or an ongoing, daily exposure.

    Since my diet is so constant (and was prior to the test) as were any places/buildings I was around, I'm inclined to think it's the latter and an ongoing exposure. I'm going to request another blood test tomorrow when I go to my LLMD to see if I again have similar results, in which case my suspicions would be confirmed. If that is indeed the case, I have no concrete idea whatsoever as to where I would be getting exposed although drinking water seems to be the most common culprit from what I've read. I pretty much only drink one brand of bottled water and water from the filtration system at work although I do cook and brush my teeth with the water in my apt (doubt that's the source but who knows).

    Anyway, anyone have any input like this, ever have any similar results or know someone who did? I searched on a couple message boards and the internet and came up with very little. One interesting study I did come across was related to kids with autism (what else is new) having elevated barium and zinc levels and low lithium levels (at least their mothers, I think the kids too). Interestingly enough, my lithium level was the only other level out of the reference range, albeit slightly, and indeed on the low end, and my zinc level was my most elevated mineral level by quite a substantial margin.

    Just wanted to check if anyone had come across anything along these lines with barium in particular, either from a blood test, hair test, or whatever.

  8. Sounds good! What is this risotteria you are speaking of? I wish we had something like that in my area.

    The risotteria is a gluten-free restaurant in the city (well, nearly everything on the menu is gluten-free or is offered as either gluten-free or not gluten-free)... has paninis, pizza, risotto, and salads so it's mostly carb-heavy which is the opposite of my diet... small place, only 10 small tables and a handful of bar seats but they also do takeout and the food was very good... they have a website by the same name if you wanted to check it out

    oh, by the city, I mean NY... bad habit I guess from growing up in jersey

  9. well, I figured it would be easier to skip trying all the alternative suggestions to put on weight and go straight for some staples like cheesecake and pizza... don't know why nobody suggested that B)

    went up to the risotteria on Sunday so everything was gluten-free, but certainly not dairy-free, low in carbs, or good for candida... considering it was the first time I've eaten out in 2 years (which was incidentally also the last time I had dairy) and that I ate a number of different items available (breadsticks, meatballs, some chicken risotto meal, a little pizza, cheesecake, brownie) for dinner and then with a couple meals later that night, it was surprising how little I've reacted this week, relatively speaking...

    Monday I didn't feel great and probably would have called out from work if it wasn't a holiday though the symptoms were nothing overwhelming and I was able to get stuff done around my apartment... and since then, I've worked my usual current hours (which are increased over what I had been working for a year or so anyway), played ball, etc. and felt fine for the most part with maybe a bit of a worse headache than usual early Tuesday... I'll probably try eating out again sometime in the next couple months at a place like PF Changs and go with a meal more typical of what I eat on a daily basis (less carbs, higher protein), but either way, I've been pleasantly surprised how I've felt this week... to be honest, it seems that I might have reacted just as strongly from a couple spoonfuls of sunflower butter I tried recently as I did to all the food from the Risotteria...

    anyway, thanks for the birthday wishes...

    as an aside, I just ordered theralac per my LLMD's recommendation... I know a few people here (carla comes to mind) are taking/were taking it, and I've been considering trying another probiotic for a while... my LLMD also recommended Transfer Factor, which I'm gonna check out a little more before ordering... don't know if anyone is currently taking it though I've seen rachel mention it as well as autism MBs if memory serves me correctly..

  10. Hey Charlie! Good to see you.

    Rachel had posted a list of toxic binders a while back, apple pectin I know is one in addition to the charcoal.

    I went back and found the list:


    Fiber (non-psyllium)


    Apple pectin



    Activated Charcoal

    If I remember correctly apple pectin was the weakest of the binders, so if you had difficulty with other things maybe the apple pectin would be a good one for you to start with?

    Can you ask your Doc about when to take it around your eating schedule?

    What kinds of foods can you tolerate? Are you ok with avocadoes? Raw veggies? Potatoes? Smoothies?

    I am thinking bumping up your smoothies with more calories and fat.

    What about Carla's "fudge"?

    Hey, thanks for the list.

    As for foods, I'm not sure as I've been on a very restrictive diet for a while. But I seem to tolerate nightshade foods better than legumes/nuts/nut and seed butters. Avocadoes I don't know, bought them once to try but they went bad before I got around to using them.

    And I don't actually drink smoothies or anything, just something I'm thinking of trying to concoct from different ingredients. Most of the ideas suggested here like oils, seed butters, coconut oil/milk, etc. I've already considered or even bought and stored in the cabinet to try in the future. Guess it's just a matter of trying these things and seeing what happens.

    If you are having an allergic reaction to food, try a little baking soda in water, my allergist has me use that. Alka seltzer gold is what he has in the office and offers if we have a reaction while testing.

    Also, vitamin C, you can really push up the dose unless it gives you the big D. My allergist told me I can take 2000mg, and if the symptoms return in 3-4 hours, repeat it again.

    The only other thing I can think of for binder is chlorella or spirulena.

    My nutritionist recommended buffered C to me as well as activated charcoal a couple years ago. Chlorella I already have though I haven't used it yet. Probably gonna try it relatively soon though.


    I did M-B12 self administered shots last year but I discontinued since I wasnt noticing any benefit.

    I'm pretty sure I'm having problems with histamine build up and I learned that b12 increases histamine so I'm definately avoiding it. Folic acid is another one that I've avoided for the same reason....but that one really gives me noticeable worsening of symptoms. I'm pretty sure its the main reason I've never tolerated the multi vitamins....especially the B's.

    Histamine is released by the body during allergic reactions, correct? So wouldn't anybody having a lot of allergic reactions have issues with histamine buildup or is it not that simple? My mind's shot right now and I don't know much about the histamine aspect in the first place so any info would be appreciated. I'm pretty sure that a number of people who I've seen report benefits from MB12 have food issues so I'm assuming there's more to the equation.

  11. alright, well, I figure I may as well get around to asking a few of the things I wanted to bring up when I posted a bit a month ago...

    I don't react well to activated charcoal, leaves me more fatigued though I haven't tried it in a year and a half (also didn't test well for it during the bio-energetic testing I had done)... probably also isn't practical for me as the longest I ever really go between meals is 3 hours in the evening... so anyone have any suggestions for an alternative binding agent that's used for similar applications, say upon the feeling of reacting to a food or whatnot...

    also, is anyone here taking (or has taken) MB12? I know it's extensively mentioned on lyme net and autism message boards, and I'm inclined to think it would be beneficial for me to try it to aid in addressing the cognitive symptoms... after I learn a bit more about it, I plan to discuss it with my LLMD next appt and see about getting a prescription for it...

    lastly, anyone with very restrictive diets have any recommendations for foods to try and gain weight? I'm back to pretty much a meats and veggies diet (well, basically the same diet I've been on for a while minus potato chips) and am trying to find alternative foods I can add in, at least here or there if not more regularly, that I won't react to (or will minimally react to) and that have a bit of calories... I tried sunflower butter once as an alternative to the nut butters but didn't seem to do well at all with that.. don't do great with cashews either... got some hemp milk I may try mixed with a low sugar fruit and maybe something else to boost the calorie total but could use some ideas if you guys have any...

  12. I wouldn't worry way too much about it and I'd recommend just rotating foods as to the extent that is practical for you... there isn't a magic formula per se, it's just typically recommended to have 2 or 3 days in between foods so that you can pinpoint if you have a reaction, delayed or immediate, to one of the staple foods in your rotation diet...

    from my experiences on an elimination diet, I had difficulties pinpointing reactions as I didn't really have an established day to day decent overall feeling to use as a basis for comparison as I was generally feeling off or some symptom... so it was mostly just making the best educated guesses for myself as to whether or not certain staple foods I was eating were causing or exacerbating any symptoms...

    so I would say it's fine to eat something 2 days in a row at times and then not eat for a few days or eat something M, W, and then not again until the weekend... you could always try a couple weeks of being strict with the rotation aspect if you wanted and then be more flexible with it if you've pinpointed some foods you're suspicious of and feel more comfortable eating other foods...

  13. I have got to find a way to get by without more vaccines before school starts in the fall.

    NC has a religious exemption for vaccinations... pretty much every state except for 2, I think, have religious exemptions... some have philosophical exemptions as well but not NC..

    the religious exemptions are fairly easy to obtain even if you aren't necessarily religious, at least from what I understand... though I suppose that could differ from state to state... a friend of mine obtained a religious exemption in Nevada recently for his daughter...

    here are a couple sites with exemption information for NC

    link 1

    link 2

    I only scanned the links briefly, but I think they provide you with what you need to know for NC to get the exemption...

  14. I used to have bad hypoglycemia. Getting rid of yeast and supporting the liver will help. Hypoglycemia is a sign of liver dysfunction. there is a lot of good information here www.liverdoctor.com.

    If you have a bad case of yeast this can cause balance problems, hypoglycemia, among other things. Have you tried adding any antifungals in your protocol? Sounds like the abx might have made the yeast go crazy!

    I've had hypoglycemia since I was in my early teens, had to actually get permission one year I had a late lunch to go the nurse's office and snack mid-day... both my parents have hypo as well... wasn't too bad for a few years around when I was in college, but it's gotten progressively worse the past 5 years... I was also pre-diabetic according to an OGTT 5 years ago and if I remember right, my BS was at 159 at 2 hrs (<140 is normal) and down to around 50 at hour 3...

    I don't think the ABX made much of a difference if any in regards to the hypoglycemia... I only took them for 2 months this summer and my hypoglycemia was already out of control beforehand and isn't any different now than before ABX... I've been on a mostly candida diet since Jan, 2007 with 5 or so of those months being extremely strict... I've also taken caprylic acid daily at times in 2007.. I additionally was on a very strict candida diet for a couple months in the summer of 2006, when I was taking another antifungal SF722, which adversely affected me for the 6 weeks I took it... lastly, I have been on a relatively low-carb, high protein diet for years now, even prior to going gluten-free at the start of 2006

    going to a candida diet has actually worsened the hypoglycemia, requiring me to eat meals more frequently... that's probably also in part due to me beginning a weekly physical activity routine... the diet and usage of antifungals at times has also caused me to drop a bit of weight (weight that I don't have to spare)... however, I seem to feel better on this type of diet, which is why I remain on it, strictly for the past few months...

    it's not gonna do anything to improve the hypoglycemia though, at least not on its own... and my mom, who was on a candida diet for 7 years with a couple being extremely strict, and recovered from her symptoms to good health still has to eat and snack frequently, albeit not anywhere to the level that I do nor would she experience as severe reactions if she does crash...

  15. As long as you eat protein every few hours, I think you'll be ok. I'm hypogylcemic and have to eat real meat (Beef roast, steak, salmon, tuna, scallops, pork roast, chicken, etc ) every 3 hours or else I crash. Beans and other protein sources just don't cut it for me, but that might be enough protein for you.

    I'm actually the exact same way, down to cashews being able to hold me for maybe an hour extra... oh, and I guess it's more like eating every 2 hours for me, at least throughout the day... I can go longer in between eating meals at night

    as for something that you might find beneficial in terms of coping with your hypo and not having to cook, I can eat turkey kielbasa from Welshire as a meal in the late afternoon and evenings and it keeps my bs at bay as long as any other meat meals I would have cooked instead... the kielbasa is gluten-free/sf/df, is pre-cooked, and is carried at WF (they have pork kielbasa as well as other meat products)... very convenient for me as it's the only thing I currently eat as a meal that I don't have to cook

  16. Alright, I guess I'll put up a general update as things currently stand for myself...

    I haven't gone back on ABX since the 2 months of mino I took during the summer.. I was considering trying doxy a couple months ago but decided against it for the time being for a couple reasons... the only supplement/meds I'm currently taking to target lyme, candida, metals, etc. are cat's claw, though at a low dosage, and probiotics... I'm still taking a multi and coq10 as well

    I went in October for a session for the testing I mentioned a couple months ago... it's bio-energetic testing and from the methods and equipment used, it doesn't seem that there would be much of a difference as to who was conducting the testing as opposed to some of the other testing techniques... this link gives a basic description of the testing

    I haven't exactly made up my mind as to how I feel about the testing and haven't spent any time researching the methodology and science behind it since my session... regardless though, it doesn't seem like it gave me much useful guidance in how to treat right now since the basic results of the testing were to not take ABX and just be on a candida diet, free of most foods outside of meats and veggies, which is what I've been doing nearly the entire year anyway (with the exception of the 2 months of mino and a few months of eating potato chips at times as my only cheat food)...

    no lyme, co-infections, metal, or parasite issues showed up during testing, just a lot of candida issues in different body systems... on the other hand, testing of my supplements did mostly match up with how I felt about them... however, I didn't really get a good or IMO adequate explanation from the practitioner as to why I would have had the balance symptoms within 2 days of starting the mino, and then whenever I tried to bump up the dosage as well as at times months after stopping the ABX...

    either way, I decided to eliminate potato chips a couple months ago and continue with the rest of my diet, which is strictly meats, certain spices, green veggies, and water (with a very small amount of sugar from glee gum)... I've also likewise continued with a largely regulated sleep schedule and a combination of b-ball, lifting, and the elliptical a couple days a week, which I've been doing pretty much every week for a year now, except for a couple weeks in october after I woke up with a torn ligament in my toe (no, not a misprint, somehow I went to bed fine and had a torn ligament when I woke up :blink: )... at times I've used detox foot pads and at times I've drank water with lemon as well though I go back and forth on both as to whether they're good, bad, or indifferent for me...

    I have been making progress the past couple months and am working the most hours I've worked in over a year... I've also started feeling a bit better overall with the balance symptoms I got from the mino decreasing in frequency and severity and my neuro symptoms showing slight improvement... hypoglycemia is still, of course, absurd, necessitating me eating 7 meals a day...

    I'm now back to the point where I'm again looking to learn more about what may benefit me and expand my treatment protocol... whether it entails incorporating another dr./practitioner or simply discussing things with my current "staff" and adding in a few things, I don't know...

    however, I do know that I don't want to take a step back to take a step forward now so I don't plan on trying anything I deem to be potentially of that nature, like a different ABX for instance... down the road, if I feel it's necessary is another matter, but as of now with the gradual but steady progress I'm making, I only want to add treatment options that keep me going in a straight line forward and that I would cut off after a couple days if I feel that they are causing me adverse effects...

    I have some different questions to ask, but I'll save that for a later post...

    as for my sister, she's doing well... really well in comparison to how she was pre-germany... she went from 20+ meds daily down to under 5 per day (though I think she could probably still get down a couple more as I don't think 2 or 3 of her meds are necessary)... all of the RSD pain went away initially though one element of it, the hypersensitivity, has returned in her left arm to a degree... she is undergoing treatments locally to help eliminate that again, and hopefully these will be successful, but either way, this is a massive improvement from the full-body, very painful RSD she had beforehand...

    she's starting up aqua-therapy to help regain her strength, and later more extensive physical therapy as her body can handle it... when she was over in germany for the procedure, she was in a coma-like state 2 weeks longer than anticipated as she caught a bad case of pneumonia during the procedure... as a result, she lost about 25-30 lbs (and she was on the thin side to begin with) and all her muscle mass... took her a week or so to even be capable of taking a few steps walking after getting out of the coma.. she's since regained about 10 lbs and a little bit of muscle, but she still has her work cut out for her for quite a while in this regard...

    as good as the pain improvement has been, perhaps it has been just as beneficial that she also now has a working GI system as opposed to one that wasn't working for years and was getting worse and worse over time... that was probably largely due to a combination of the RSD and meds she was on... also, when consulting with her RSD doctor in the states after returning, he advised her to eat a high protein diet and to not get the flu shot, so no arguments from me on those fronts... guess I can still agree with conventional western MDs at times...

    oh, and she also was in the newspaper again as she was instrumental in getting a state bill signed for RSD awareness and was with the governor for the signing... unfortunately, neither her nor my parents asked the governor why NJ just added 4 more vaccines to the mandatory childhood schedule, including being the first state to require the flu vaccine, but I suppose that wouldn't have been the proper venue to ask these questions... of course, I wouldn't have been able to help myself if I was there B)

  17. Charlie,

    So glad to meet you! How has the Cat's claw helped you thus far? and other than vestibule problems why did you decide on not taking the abx? if you don't mind sharing :) Was it making you too sick?

    I too am very leary of abx. I know first hand what overuse did when I had chronic sinus infections,BV and chronic mastitis over the almost 10 years. I don't think going into this my immune system is very good and I don't want to make it worse.

    Thanks for your experiences shared with the doxy. I will call my (not yet seen)llmd to console with him first about taking doxy.

    I too am underweight so vestibular problems may be an issue for me. I already get off balance and dizzy so thanks for the warning.

    Charlie, It may be a good idea to figure out whether you body is able to detox before you detox. Have you any tests done to determine this?

    Ive got to order Bruhner's book as well.

    Here's to better health! :D

    Hey, just to make it clear, it wasn't the doxy that gave me the vestibular symptoms, it was the minocycline. I never actually filled my RX for doxy, which I was considering taking a couple months after I stopped the mino.

    I found the study re: the side effects of mino, particularly the vestibular ones, in relation to gender and weight:

    click here for the study abstract, a free full text link is also available on this page

    I can't say I know for sure how the cat's claw is making me feel, but it seems to be helping a little... when I took the cat's claw one time back in april, 2007 while I was awaiting my Igenex test results, it made me feel very spacey and whatnot, but I haven't experienced anything negative like that in the past 2 months since starting taking it daily... I'm taking a very low dose right now though and have moreso just been trying to get headed in the right direction again like I was early in 2007 before starting any more substantial treatment again...

    I stopped the ABX for a couple reasons... one, I had regressed overall since starting them although that may have been in large part due to 3 weeks out of 2 months being eaten up by 3 attempts to bump the mino dosage to 100 mg 2x per day, which caused me severe balance problems lasting 5-10 days each time... I think I also had a worse general feeling, more of the brain-fog, and worse headaches at times, but I don't know exactly how pronounced all this was... my LLMD also recommended stopping the ABX at the time to check into some other things...

    I did feel significantly better than I had on the ABX and decent overall the next few weeks after stopping the ABX... the balance symptoms then returned for a week, went away for 3 weeks, came back for a week, went away and then returned on a less cyclical schedule on a mostly daily basis with varying intensity, and have since decreased in frequency and severity but are still present at times... the neurological symptoms as well as hypoglycemia are still my primary focuses but the balance symptoms can be very intrusive for a few days when they come on strong and I don't recall having these symptoms prior to the ABX, certainly nowhere near this level had they existed in some form...

    as for testing on the body's ability to detox, I haven't had any done.. not overly familiar with the specific testing so if you could provide any details on this, I'd appreciate it..

  18. looks like this thread has a lot of activity nowadays, not just carla posting every other reply B)

    I've been taking cat's claw daily for a couple months now... will probably start bumping the amount up soon, just got to schedule another appt with my llmd first to discuss things... I don't plan on going back on ABX any time soon... I only did the 2 months of mino last summer and hopefully it at least killed some of the bugs off... I may choose to go the long-term ABX route at some point in the future but it didn't seem to be putting me in the right direction at this point...

    I just got Buhner's book "healing lyme" and am going to read that soon... my plan as of now is to focus mostly on more benign herbal protocols, probably nothing too extensive even as far as these protocols go... and of course continue with everything else I'm doing: exercise/physical activity, dieting, regulating my sleep schedule, etc... also probably going to look more into some other possible things I'm not as familiar with like glutathianone and proper mineral supplementation...

    Dr. also gave me a script for Doxy 100mg 2 per day. I accepted the script but will not take it until I've done more research. I don't know if it will mess with my March apt. and from what I read it's a very low dose, almost too low so not sure if I'd feel better or if it would stir up the Lyme being so low a dose.

    100 mg of Doxy twice a day is certainly not a low dose... in fact, I think it's the standard starting dose typically recommended by LLMDs... I was given a RX for that dose for doxy as well as minocycline, which is a nearly identical drug in the same tetracycline family...

    also, I know a fair share of people including myself have experienced very pronounced vestibular symptoms when taking minocycline, particularly at the higher doses like 100 mg 2x a day (I went down to 100 mg once a day for the 2 months I was on it)... it may have been the lyme being stirred up but either way, I still have those balance symptoms at times 5 months after stopping the mino though they've been decreasing in frequency and severity the past 2 months...

    I'm not sure if doxycycline shares the same potential to cause vestibular symptoms (I'm inclined to think it doesn't but can't confirm that) but I'm sure some research or posts on lyme MBs could provide an answer if you wanted to look into it... there also appears to be a relationship between these vestibular symptoms and a patient's weight with those who weigh less (like myself) being more prone to getting these symptoms.. I have a study printed out somewhere and it's probably easy enough to find on pubmed by searching for minocycline and vestibular

  19. I didn't have good experiences when I took charcoal a number of times in 2006... I was taking it on the advice of my nutritionist when I was having reactions and it only seemed to make me more fatigued and drained... nothing too overwhelming though it was significant enough... but combined with me not seeing any neurological benefits when I took it or alleviating any other symptoms, I stopped taking it completely...

    perhaps it would be different if I took it now, who knows... I know a lot of people seem to do well with it... doesn't matter much though as it isn't very practical at all for me as I currently eat 7 meals a day and never really go more than 3 hours max without eating...

  20. I had not heard that about flax oil, do you have a link? I always showed up allergic to it and wondered why, so it's interesting to hear that many others don't do well with it.

    a couple links from lyme net:



    though I just ended up buying another spectrum flax oil anyway, when I've taken it in the past I think I've been fine with it and maybe got a slight boost in my overall feeling... though I've never taken it regularly...

    ughh.. got caught with the lame advertisement block... just delete one of the m's in the "lymmenet" part of the urls

  21. what do you guys use to get omegas?

    I took some flax oil at times earlier this year but briefly read some information on lymenet a few months ago about flaxseed oil potentially having some adverse effects for those with lyme... I still might get some more flaxseed oil but I'm just curious what you all are using...

    I think I remember rachel considering hemp oil (or was it hemp milk) at one point and donna also asking a little while ago about omegas so I don't know if either of you decided on something and have done well or not with it...

    also, are there concerns with using any fish oil products due to mercury or is that not a concern at all? I don't even know exactly where the fish oil even comes from so I don't know if this would be a practical concern or not... if not, I might just go with carlson's or one of the other quality fish oil brands though I'm not opposed to trying something new like a hemp product if others have found it to agree with their systems..

  22. quick question.... how strict are you all when it comes to the inactive ingredients in prescriptions and supplements? in regards to dairy, soy, etc. or even gluten for that matter for those who are avoiding these foods generally speaking...

    I am extremely strict in terms of avoiding soy, eggs, dairy, gluten, and even corn... and have been since last year... never cheat, even with something small like a piece of gum or a cookie or whatnot... but when I was given the prescription for mino a few months back, it had corn in it (only corn from the list above), and I filled it and took it with no adverse effects...

    now, I have another prescription for something that has lactose in it... I also had a supplement that was recommended that had lactose... would you guys fill it and take it?

    I unfortunately already filled it and wasn't able to find out the ingredient list until now, but I don't know how strict I need to be in avoiding these foods, especially in such small quantities as filler ingredients in meds/supplements... I have tested positive (as well as negative) on IGG tests to dairy, but I've also tested positive to other things I still eat... I know each person's situation is unique and you can't exactly answer for me but I'm curious how some of you have approached this after taking a similar path as me (symptoms for months/years, then eliminating a bunch of foods, and then finding out a diagnosis(es) like lyme, metal toxicity, etc.)

  23. Hi Charlie!!

    How are you doing?

    How is your sister doing? Any news on when she heads overseas yet?

    hey, I'm doing alright, I'll give an update later when I get a chance... and of course, I have a few questions I'll probably ask as well...

    my sister's procedure is coming up very soon... if you or whoever would like any updates, I can send a PM as I'd prefer to handle things that way...