Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 I had two composite fillings done four months ago, and have had problems with sensitivity to temperature and touch in both of them since then. My dentist has tried to fix the problem twice, first by trying checking the bite and making sure there weren't any gaps in the fillings, and then by drilling one out completely and re-doing it. He says the next step will be a root canal. I naturally don't want this, and I wonder if I'm just rejecting the composite material. They were small cavities, done on the same day. Could this be caused by LDN? Anyone else have trouble with dental work since starting LDN? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 This was happening to me also, but I don't have MS or take LDN. I finally took a bunch of things to boost my immune system (tons of vit C, garlic, ginger, you name it) and within 1.5 weeks the sensitivity was gone. I think my problem was a low grade infection. [low dose naltrexone] Re: Dental Work I had two composite fillings done four months ago, and have had problems with sensitivity to temperature and touch in both of them since then. My dentist has tried to fix the problem twice, first by trying checking the bite and making sure there weren't any gaps in the fillings, and then by drilling one out completely and re-doing it. He says the next step will be a root canal. I naturally don't want this, and I wonder if I'm just rejecting the composite material. They were small cavities, done on the same day. Could this be caused by LDN? Anyone else have trouble with dental work since starting LDN? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 I had a similar problem with a filling redone about 4 years ago and it wasn't to do with LDN as I wasn't then using it. Unfortunately I can't remember the exact explanation for it but it is a known problem with some fillings. It was something along the lines of something about the way the filling was done led to some sort of 'track'??? being formed down the outside of the tooth and into the nerve. My dentist was also talking about having to do a root canal but actually had a way of testing for that condition. She did so and the test was positive, so she redid the filling (a huge pain to me as I have problems with saliva so she could only work for about 10 secs at a time - was a very long process!!). It still didn't fix it 100% but she gave me some fluoride (actually a poison!) to put on it as apparently that works against the process that was causing problems. I wasn't diligent about using the fluoride but after a month or so it came good and hasn't troubled me since. I am no expert but from what I have read you definitely should avoid a root canal. If you Google it you will find a lot of evidence that root canals can lead to all sort of problems all over the body through persistent long term infection eg rheumatoid arthritis rmcv123@... wrote: > I had two composite fillings done four months ago, and have had > problems with sensitivity to temperature and touch in both of them > since then. My dentist has tried to fix the problem twice, first by > trying checking the bite and making sure there weren't any gaps in the > fillings, and then by drilling one out completely and re-doing it. He > says the next step will be a root canal. I naturally don't want this, > and I wonder if I'm just rejecting the composite material. They were > small cavities, done on the same day. Could this be caused by LDN? > Anyone else have trouble with dental work since starting LDN? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Thanks to Aletha and for responding to my post- I guess this problem isn't related to LDN. I will definitely avoid root canals! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Funny, I have never had a minute's problem with teeth cleaning, and have not taken antibiotics for 20 years, not even when I had pneumonia. I go to the Naturopath and get help to boost my immune system instead. I just do not do antibiotics. I think they are harmful to my system. Lynda At 05:23 PM 3/24/2006, you wrote: >Hi Saline Sisters! > I've going through all my e-mails of the day and notice the > mention of " teeth " . >Funny...having dental work is what turned my " light-bulb " on to my implants . >I had the scaling and I DID NOT KNOW .... " Anyone with implants >SHOULD take several days of antibiotics...BEFORE the cleaning. I >became very sick with chills and fever and headed for the weekend >clinic for antibiotics. > The DENTISTS won't tell us the truth either! > > > >Opinions expressed are NOT meant to take the place of advice given >by licensed health care professionals. Consult your physician or >licensed health care professional before commencing any medical treatment. > > " Do not let either the medical authorities or the politicians >mislead you. Find out what the facts are, and make your own >decisions about how to live a happy life and how to work for a >better world. " - Linus ing, two-time Nobel Prize Winner (1954, >Chemistry; 1963, Peace) > >See our photos website! Enter " implants " for access at this link: ><http://.shutterfly.com/action/>http://.shutterfly.co\ m/action/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 I have severe TMJ and I have lost 2 teeth on my left side over the past 2 years because my clenching has cracked them. A couple weeks ago I bought some $2 boil and shape mouth guards towear at night. They are made of silicone. After wearing the gaurds for a week my teeth felt less pain. I removed them for a few days and of course clenched again. Now I have an abcess above the painful tooth and i am taking antibiotics. My question is ... is it the clenching or the silicone tha is the most likely culprit?? I wont be able to see a dentist for at least another week. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Girlfriend, my thought is bacteria. The guard is good in stopping the clenching, but I highly suggest brush, floss and rinse with a really strong salt water for a few minutes at night before you put in the guard. Salt water is healing apposed to mouthwash. ktitko <ktitko@...> wrote: I have severe TMJ and I have lost 2 teeth on my left side over the past 2 years because my clenching has cracked them. A couple weeks ago I bought some $2 boil and shape mouth guards towear at night. They are made of silicone. After wearing the gaurds for a week my teeth felt less pain. I removed them for a few days and of course clenched again. Now I have an abcess above the painful tooth and i am taking antibiotics. My question is ... is it the clenching or the silicone tha is the most likely culprit?? I wont be able to see a dentist for at least another week. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Yes, I was thinking that too. I ended up boiling and cutting the gaurd so that it doesn't cover up to the tops of my gums, but only the bottom of my teeth. I'm not going to use it again though until I am healed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 , I'm not a dentist . . . but I can't see how using a silicone appliance could cause an abcess so quickly. . .. Sore mouth, yes. But infection like you describe, no. Hugs and prayers, Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Clenching your teeth is a sure fire way to cause problems, and absesses are one of those. I have to wear a mouth guard every night. Clenching my teeth has been a problem ever since an auto accident that messed up my jaw. Lynda At 08:44 PM 3/24/2006, you wrote: >, > >I'm not a dentist . . . but I can't see how using a >silicone appliance could cause an abcess so quickly. . >. Sore mouth, yes. But infection like you describe, >no. > >Hugs and prayers, > >Rogene > > > >Opinions expressed are NOT meant to take the place of advice given >by licensed health care professionals. Consult your physician or >licensed health care professional before commencing any medical treatment. > > " Do not let either the medical authorities or the politicians >mislead you. Find out what the facts are, and make your own >decisions about how to live a happy life and how to work for a >better world. " - Linus ing, two-time Nobel Prize Winner (1954, >Chemistry; 1963, Peace) > >See our photos website! Enter " implants " for access at this link: ><http://.shutterfly.com/action/>http://.shutterfly.co\ m/action/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Thanks for the responses. Lynda, what instructions did your dentist give you for your mouthguard? I know I need to use it or risk loosing every tooth on that side. I only have one set of teeth top and bottom that line up now. I have an old womans mouth at the ripe old age of 35! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 My orthodontist made my mouth guard especially for my mouth. I am supposed to wear it every night. I know that breast implant women have lots of teeth problems, and often the dry mouth is responsible. But, clenching your teeth will crack them, and will make them absess. Lynda At 06:18 AM 3/25/2006, you wrote: >Thanks for the responses. Lynda, what instructions did your dentist >give you for your mouthguard? I know I need to use it or risk loosing >every tooth on that side. I only have one set of teeth top and bottom >that line up now. I have an old womans mouth at the ripe old age of 35! > > > > > >Opinions expressed are NOT meant to take the place of advice given >by licensed health care professionals. Consult your physician or >licensed health care professional before commencing any medical treatment. > > " Do not let either the medical authorities or the politicians >mislead you. Find out what the facts are, and make your own >decisions about how to live a happy life and how to work for a >better world. " - Linus ing, two-time Nobel Prize Winner (1954, >Chemistry; 1963, Peace) > >See our photos website! Enter " implants " for access at this link: ><http://.shutterfly.com/action/>http://.shutterfly.co\ m/action/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 They have some stuff to use on your mouth to help prevent this problem. Ask your doctor. Lynda At 08:41 AM 3/25/2006, you wrote: >For what its worth, I just started this winter with the severe dry >mouth, eyes, skin, nose etc. And my last dental check (this month) >also revealed two new cavities. Those are the first since my >implants. sheeeesh. >~ DeBolt~ > Re: Re: Dental work > >My orthodontist made my mouth guard especially for my mouth. I am >supposed to wear it every night. > >I know that breast implant women have lots of teeth problems, and >often the dry mouth is responsible. > >But, clenching your teeth will crack them, and will make them absess. > >Lynda > > >At 06:18 AM 3/25/2006, you wrote: > >Thanks for the responses. Lynda, what instructions did your dentist > >give you for your mouthguard? I know I need to use it or risk loosing > >every tooth on that side. I only have one set of teeth top and bottom > >that line up now. I have an old womans mouth at the ripe old age of 35! > > > > > > > > > > > >Opinions expressed are NOT meant to take the place of advice given > >by licensed health care professionals. Consult your physician or > >licensed health care professional before commencing any medical treatment. > > > > " Do not let either the medical authorities or the politicians > >mislead you. Find out what the facts are, and make your own > >decisions about how to live a happy life and how to work for a > >better world. " - Linus ing, two-time Nobel Prize Winner (1954, > >Chemistry; 1963, Peace) > > > >See our photos website! Enter " implants " for access at this link: > ><<http://.shutterfly.com/action/>http://. > shutterfly.com/action/>http://.shutterfly.com/action/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 For what its worth, I just started this winter with the severe dry mouth, eyes, skin, nose etc. And my last dental check (this month) also revealed two new cavities. Those are the first since my implants. sheeeesh. ~ DeBolt~ Re: Re: Dental work My orthodontist made my mouth guard especially for my mouth. I am supposed to wear it every night.I know that breast implant women have lots of teeth problems, and often the dry mouth is responsible.But, clenching your teeth will crack them, and will make them absess.LyndaAt 06:18 AM 3/25/2006, you wrote:>Thanks for the responses. Lynda, what instructions did your dentist>give you for your mouthguard? I know I need to use it or risk loosing>every tooth on that side. I only have one set of teeth top and bottom>that line up now. I have an old womans mouth at the ripe old age of 35!>>>>>>Opinions expressed are NOT meant to take the place of advice given >by licensed health care professionals. Consult your physician or >licensed health care professional before commencing any medical treatment.>>"Do not let either the medical authorities or the politicians >mislead you. Find out what the facts are, and make your own >decisions about how to live a happy life and how to work for a >better world." - Linus ing, two-time Nobel Prize Winner (1954, >Chemistry; 1963, Peace)>>See our photos website! Enter "implants" for access at this link:><http://.shutterfly.com/action/>http://.shutterfly.com/action/>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 has anyone gone thru the dr. huggins protocol, and how has it helped, if at all. Also, does anyone know what is someone to do if their dentist recommends a root canal and their is not a holistic dentist in their area? Can one just leave it alone or will it get worse? Thank you in advance for any information. diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Hi , My son is about to have dental surgery. They plan to put him to sleep to remove a syst he has in his gums. I'll keep you posted as to how the procedure goes. The Oral Surgeon is communicating with Dr. G and I'm waiting for the decision. Argie On Feb 10, 2011, at 8:16 AM, LH wrote: > My son had dental work done. We have had to break the work down into > 3 visits. Has anyone had problems with Valium or the " laughing " gas? > If so, what other options did your dentist offer to you? Thanks. > > Larra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Re valium - when I had RK surgery, I was given generic valium, and it didn't work. I ended up taking the max of 8 pills over a 2 hour period and I never felt it at all. (I can also drink shocking amounts of some types of alcohol and never even feel intoxicated. I thought that was a neat party trick when I was younger.) Also, the numbing eye drops didn't work either - I had to have injections in the conjuctiva. The doctor had a hard time believing it. A couple of months later he spoke to a colleague that had the same occurance, and it had been determined that there are a few people that both the drops and generic valium didn't work, whereas the name brand valium will. It was wierd. I've found one other person (w/CFS) who had the same experience with generic valium. It's pretty rare though - I wouldn't assume it would be the case for your son, but if the generic didn't work, liquid and name will. HTH ________________________________ From: LH <lrkhmomx3@...> Sent: Thu, February 10, 2011 10:16:41 AM Subject: Dental work  My son had dental work done. We have had to break the work down into 3 visits. Has anyone had problems with Valium or the " laughing " gas? If so, what other options did your dentist offer to you? Thanks. Larra ________________________________________________________________________________\ ____ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Games. http://videogames./platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 My son did well with " versed " the first time he had to have dental work done. The next time he went, they gave him valrium. It was a nightmare. He was only 6yo and he became so combative that we could hardly control him and it went on for hours. Versed is very fast acting and lasts just long enough for the procedure. Ellen From: thecolemans4@... Date: Thu, 10 Feb 2011 22:03:24 -0800 Subject: Re: Dental work Re valium - when I had RK surgery, I was given generic valium, and it didn't work. I ended up taking the max of 8 pills over a 2 hour period and I never felt it at all. (I can also drink shocking amounts of some types of alcohol and never even feel intoxicated. I thought that was a neat party trick when I was younger.) Also, the numbing eye drops didn't work either - I had to have injections in the conjuctiva. The doctor had a hard time believing it. A couple of months later he spoke to a colleague that had the same occurance, and it had been determined that there are a few people that both the drops and generic valium didn't work, whereas the name brand valium will. It was wierd. I've found one other person (w/CFS) who had the same experience with generic valium. It's pretty rare though - I wouldn't assume it would be the case for your son, but if the generic didn't work, liquid and name will. HTH ________________________________ From: LH <lrkhmomx3@...> Sent: Thu, February 10, 2011 10:16:41 AM Subject: Dental work My son had dental work done. We have had to break the work down into 3 visits. Has anyone had problems with Valium or the " laughing " gas? If so, what other options did your dentist offer to you? Thanks. Larra __________________________________________________________ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Games. http://videogames./platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 I have the same thing with alcohol and relaxing meds not helping. I am in the process of getting the paperwork to Dr G. Hope he can help me. I'm sure I've got PANDAS or something related. I have to stay well, so I can keep helping my sons. I think there is a real epidemic going on in our country with all of this. I'm sure everyone on this forum knows that. So many people I know are dealing with some form of this. What a nightmare. ---- Original Message ---- From: thecolemans4@... Subject: Re: Dental work Date: Thu, 10 Feb 2011 22:03:24 -0800 (PST) >Re valium - when I had RK surgery, I was given generic valium, and it >didn't >work. I ended up taking the max of 8 pills over a 2 hour period and >I never >felt it at all. (I can also drink shocking amounts of some types of >alcohol and >never even feel intoxicated. I thought that was a neat party trick >when I was >younger.) Also, the numbing eye drops didn't work either - I had to >have >injections in the conjuctiva. The doctor had a hard time believing >it. A >couple of months later he spoke to a colleague that had the same >occurance, and >it had been determined that there are a few people that both the >drops and >generic valium didn't work, whereas the name brand valium will. >It was wierd. I've found one other person (w/CFS) who had the same >experience >with generic valium. > >It's pretty rare though - I wouldn't assume it would be the case for >your son, >but if the generic didn't work, liquid and name will. > >HTH > > > > > >________________________________ >From: LH <lrkhmomx3@...> > >Sent: Thu, February 10, 2011 10:16:41 AM >Subject: Dental work > > >My son had dental work done. We have had to break the work down into >3 visits. >Has anyone had problems with Valium or the " laughing " gas? If so, >what other >options did your dentist offer to you? Thanks. > >Larra > > > > > > >_____________________________________________________________________ >_______________ >Be a PS3 game guru. >Get your game face on with the latest PS3 news and previews at >Games. >http://videogames./platform?platform=120121 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 What is amantadine used for... what type of rx is it? thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Wow, thanks for figuring all this out. Anymore, I can't tell what is causing what. I don't have it dialed in nearly as well as you do. I will pay attention to epinephrine. Is this what is in Alka Seltzer Cold? I know for my husband and I this is what we always take when ill. We used to buy it at Costco. But now it's hard to get and one time when we bought two large boxes they had to come and check us out. I guess there is an ingredient in it that is used in making crack or meth, whatever. A friend of mine said she couldn't get all the sudafed she needed because of the same. Maybe it's a different ingredient, don't know. I am all for putting up with the inconvenience for catching people that make that awful stuff. A beautiful young girl just jumped off the bridge near my house on meth (long story) not related to our kids, anyway, Just wondering what's the ingredient as I did give my son our last Alka Seltzer Cold because I have not been able to get the triaminc yellow as instructed by Dr G's office for my 14 year old son's congestion. We've been with Dr G for 9 years so I know the main drill but it did seem to help him for a little while. Thanks, Jerri r what a jerk. Maybe you can list it as an allergy next time. With swelling(of your rage). > > > > ________________________________ > From: newleaflady <carolemorris@... > <mailto:carolemorris%40comcast.net>> > <mailto:%40> > Sent: Sun, February 13, 2011 11:44:04 PM > Subject: Re: Dental work > > > > , I discovered in college that I was sensitive to > epinephrine...I was > usually a calm person but I found myself wanting to smack the dentist > and run > away. When I told them how I was feeling, they said oh it's the > epinephrine. And > I never had epi in a dental injection again. Fortunately it didn't put > me into a > lasting panic, but with all the stress I've had since, I wouldn't want > to chance > it. Not to mention that it feels pretty awful at the time anyway. They > can do > the shots without ANY epinephrine, it just takes longer to work, so > they don't > necessarily like to, but my current dentist is great about it. > > When I had an outpatient procedure one time, i told them this, and the > dr. said > OK and then obviously went ahead and used it anyway, because I had the > same > reaction. The nurse admitted it after the doctor had left. Arrogant > SOB. Anyway, > now I'm adamant to anyone that unless it's an emergency I will NOT > allow epi to > be used. > > Carol > > > > > > Sounds like a pattern with us, doesn't it? It's a very rare > problem, yet what > > > > ... 3 or 4 of us have had that experience in just this small > group? Wierd, > > isn't it? > > > > Xanax - no other anti-anxiety med - is the only thing that can pull > me out of > > severe anxiety, and even it doesn't really knock it out. If I'm > lucky, it > >makes > > > > it tolerable.  I just won't take more than a mg at a time anyway, > because if > > that's not enough then just too bad, so I don't know if higher doses > would stop > > > > a panic attack. Fortunately those have been gone for years now, > even with my > > > last big crisis. My panic attacks happened most when I had > dysautonomia and > > walked around w/blood pressure of 70/20. I've learned now that if > I'm even > >the > > > > slightest dehydrated, I have much worse anxiety too. A 1/2 gallon > of water > >will > > > > do more than a xanax. > > > > And nothing but antibiotics (well, now I think I can add amantadine > to that > >list > > > > - not a med) really gets to the root of my anxiety - especially a > > doxycycline/antifungal combo (although now I'm on Keflex and it > seems to be > > doing well this time too, except I really think it's more the > amantadine). > > > > Truly, if it weren't for Dr , I would be disabled. Back in > November I > > > was in such crisis that I wouldn't have been able to continue > working more than > > > > 2 more months. And I had a period of about a year and a half > before I went to > > > > TX where I actually was disabled but didn't realize it. I > literally couldn't > > > boil water to cook noodles. Some days I couldn't even get it > started for not > > > > being able to remember what I was doing. Then I'd remember " Oh - I > was > >getting > > > > a pot out " . 20 min later I might get water in it. Then I'd > forget to turn > >on > > > > the stove. Half an hour later I'd realize that. Then I'd start it, > walk out > >of > > > > the kitchen, and an hour later wonder what the burning smell was, > and it was an > > > > empty pot smoking on an overheated eye. Sometimes I'd set a timer > and carry > >it, > > > > and not know why the timer was going off, so I'd have to write a > note for it > >(if > > > > I could remember to). Or know why the timer went off but not be > able to > > remember to make it to the kitchen.  I still won't leave the > kitchen if I have > > > > the stove on. I keep a chair next to the stove and sit in it until > whatever > >I'm > > > > cooking is done. I learned to never leave for any reason. If a > local doc > >would > > > > give me doxycycline, I'd function for a few days till it was gone, > and it would > > > > start all over. > > > >  Even after starting the protocol, when a couple of major > stressors blew > > > > thru my world, I had some really bad periods - probably because I > wasn't taking > > > > anxiety meds - where I'd regress badly and not even know it until > someone else > > > told me.  Now I'm dancing with my kids and chasing them (running!) > through > >the > > > > house, laughing, playing, watched a movie, visited with friends I > haven't been > > > able to be with for years (and being invited back lol), etc, all in > less than a > > > > couple of months of a new med. It's staggering. > > > > > > If I have a bad day, or I think I'm not doing well, or I embarrassed > myself by > > > rambling and talking or typing too much, I just look back to those days. > > > > Oh - there was a point here: I think all of this peaked - not > exactly when I > > > > got strep - although that went untreated for months after I got > labeled a > > carrier and really messed me up, but the worst of it started after I > had a good > > > > bit of dental work - a cavity filled, a root canal, and something > else. I > > couldn't remember to take my antibiotics, went un-medicated, and all > hell broke > > > > loose (leaking heart valves, worse anemia, cognitive crash.) >  Another thing > >... > > > > did you know those shots the dentist use have something like > epinepherine? No > > > > wonder I'd start panicking after the injections. I never knew, but > that was > >the > > > > trigger for intense anxiety during dental procedures. I never > understood, > > because I wasn't actually scared of anything. But my body would go > so tense > >and > > > > rigid within a minute of the shot that my muscles would feel like I > had run a > > marathon and worked out in a gym for hours. If you notify your > dentist that > > you're sensitive to it, they can do lighter shots w/lower doses of > epi, and it > > > makes for enough improvement that I'd rather feel a little of the > dental work > > than be fully numbed. (I'll lie - no, that didn't hurt when I > jumped out of > >the > > > > chair.) > > > > > > > > > > __________________________________________________________ > Finding fabulous fares is fun. > Let FareChase search your favorite travel sites to find flight > and hotel bargains. > http://farechase./promo-generic-14795097 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 , Thank you very much for your long post. You're so right about change internal dialogue. That's a part of what cognitive behavior therapies do. I'm amazed that you had so many stressors and still functioning, posting here to support others. Thank you for doing that and I always enjoy reading your posts. Lucy ________________________________ From: <thecolemans4@...> Sent: Sun, February 13, 2011 7:12:40 PM Subject: Re: Re: Dental work Hey Lucy, Honestly, no my anxiety is not cured. It is, however, dramatically better. It also fluctuates up and down. It's definitely a medical/chemical thing, because my thoughts don't have to be anxious for me to have the anxiety 'hum'. But I've been very sick for several years now (since 2003, though doing much better since the protocol), and I'm still severely anemic, my ASO titers are still way too high. I haven't had the opportunity to use Immunovir, and I think that is going to be an option that can help in the future too. Right now Dr isn't using it (I see him instead of Dr G - I can't afford 3 phone consults every 4-6 weeks and Dr R lets me spread them out since the boys were with Dr G for 3 years the first time & he knows I know the protocol in and out). I think I could convince him to, but I can't afford it yet because my husband was unemployed for 6 months, has only been working about 7 weeks, and is making half of what he used to, so it'll be a little bit before I can try that. It can take quite a bit of time for the anxiety to really cool down. I can tell a big difference in my anxiety & my cognitive function within 3 days on an antibiotic, and the relief is incredible, but it isn't gone. I just adapt to the new level but I still feel it. Think, though, if you see anxiety ON the meds, how much worse is it off of them? I personally cannot take any SSRI. I did what I thought was pretty well on Effexor for a while but I developed allergic gastritis to it and everything else I was taking or eating at that time, so I can't take that one now, either. Although you may not see improvements on the outside, it doesn't really mean it isn't helping at least some. No one around me could see the difference except by how the house looked. I mean, I was still anxious, but not as crippled. And there were many times that the anxiety was so intense (without anxiety meds, which your little one can't have) that I was nearing disability. My boss actually asked me at one point if I had taken out the short-term disability at work. I was on the verge of losing my job before I was switched to Keflex and started amantadine (which I'm pretty sure Dr G won't prescribe yet). I had had some really acute stressors one after another for a whole year straight, and I had not been on any meds, I couldn't eat hardly anything because of my stomach, I had black mold behind the walls in my house that I hadn't found until summer, my husband was unemployed, my oldest son was having a soy-induced suicidal meltdown, I had no help because no one could come to my house without getting sick, I had a new employer at work who knew nothing about autism (at an autism clinic, no less) and the stress it causes on parents and she called DHR saying I was in danger from him when I told her what a morning before school was like at our house (before finding and removing the soy he'd been eating). My youngest (9yr old) was developing Cyclic Vomiting Syndrome, my Mom was homeless, my husband had to go to rehab, etc etc etc. That's just what I can remember. And I was trying to do a job doing medical billing for 9 providers, for a preschool, had other duties added because they keep hiring people with no insurance or medical office experience, and I just about lost my freakin' mind. Wait I did. I didn't find it until the amantadine chilled me out enough to figure out where I'd left it. And I had even been taking the highest doses of xanax that I find acceptable, and it was barely touching it. My ASO (strep) titers had shot back up to 1100 (200 is normal right after having had strep) which is double what I can function at. I had been forgetting my doxycycline (stressors), eating non- diet stuff (because I wasn't capable of planning meals for myself anymore w/the gastritis), and who knows what else. So even though these meds help, you are just going to keep seeing it for a while. I don't know what level he functions at and how much he understands, but it's very important to teach him what anxiety is, and help him recognize worrying and other anxiety for what it is, and help him understand that it is not reality. Also teach him that it won't be permanent. We really can help ourselves when we learn to hear our internal dialogue and change it. It takes practice though, and a psychologist would be very helpful in figuring out those things (only if they have a lot of kids 'on the spectrum'). The sad thing that I truly hate to tell parents is this: It takes so long, and you just have to stick with it. I was one of the lucky ones: I got to see these huge incredibly dramatic leaps in my oldest, and my youngest was spared from severe autism (according to Dr G) by implementing dairy free at 9 months and not finishing vaccines, and starting at 18 months. He now has Chronic Fatigue Syndrome because we had to stop the protocol for a couple of years and he wasn't well yet, but while his brother didn't regress and continued to progress (and his labs were good per Dr G), even his brother does better being back on the meds. *I* counldn't tell as soon as he could. Two weeks into the antifungal, he ask me " Mom? Can I stay on this new medicine from TX forever? It makes me feel a lot better in my brain. It makes it so much easier to be good. " They're 9 & 11, and they're not fully recovered. BUT they are far better than I'd ever anticipated. Garrett (oldest) is really just socially delayed and has a slower time responding to kids who have been socializing since they were little, and still has more interest than is normal in engines and fuels, and 's brain just flickers about so much and he's pretty OCD. Garrett is angry with himself and feels lonely but it's getting much better, and 's a happy-go-lucky kid who just wants to play and do video games. The alternative to this was completely unacceptable. These kids can conceivably grow up, have jobs, have families. And Marcia, whose son is now fully recovered and in college, says her son was a LOT like G at this age, probably even a little worse. My own experience was that I suddenly changed from a variety of intense phases of Tourette's, Chronic Fatigue Syndrome, Fibromyalgia, back to Tourette's (which was actually PANDAS), to severe OCD and anxiety, and then at 30 years old, suddenly I was 'normal', my brain went quiet - and I thought THAT was when something was wrong lol - and I stopped walking on my toes, my chronic pain went away, and my brain started working in a totally different way. Yes, 4 years later I got strep, along w/dealing with autism, and off into illness I went all over again. But what I'm trying to say is things will seem static for a while, or worse, and then something wierd happens (like my son spiked a 106.9 fever and got dramatically better for 5 months) and you see all these huge improvements. Then you adjust to where you're at, and you want more. It will not go away quickly. You may not see anxiety ease until the full year is up and you move into year two - what we call recovery phase where the pieces all start clicking together. This IS chronic, and frankly, the protocol is the best we've got, and it's not even enough for most of us. We need immune modulators, and possibly the findings in XMRV are going to shift how we care for our kids a little more too. (What we don't need is DAN! - trust me - I've never been sicker - the supplements and probiotics are the worst of all for anxiety.) Once you accept that it isn't going to be a quick fix (I didn't have to accept that as hard with the kids as I did for myself - it took me a while to accept that I was going to continue to be sick even after I made it to Dr - that was a hard hit for me), you release a lot of wasted energy and just give everything you've got to following it the best you can with a kind of acceptance and just FAITH that this too shall improve. And it ALWAYS does. We just end up dealing with new problems and forget how far we've come. And then your kid starts waking up out of his fog and you have to go thru all the developmental stages (sometimes at a faster pace), and you deal with all kinds of behavioral crap that you wouldn't think means that things are actually .... better. Sometimes the negatives we're fighting were actually positives, but we were so miserable we couldn't see that. ________________________________ From: Lucy Town <lucy1628@...> Sent: Sun, February 13, 2011 7:45:05 PM Subject: Re: Re: Dental work , Are your meds. prescribed by Dr. G. for anxiety purpose? Are you taking SSRI for anxiety? Sounds like your anxiety got better controlled while on antifungals/antibiotics but not cured. My son took Prozac before seeing Dr. G. and he has been taking antiviral, antifungal , Ery-tab and SSRI for 4-5 months, I don't notice any difference in anxiety level. He had doxycycline for 3 month (100mg x 2) before seeing Dr. G. and I didn't notice any improvement in anxiety level either. That means both Doxycycline and Ery-tab don't work for his anxiety. Sigh! Appreciate your reply, ! Lucy ________________________________ From: <thecolemans4@...> Sent: Sun, February 13, 2011 12:17:25 PM Subject: Re: Re: Dental work Hey Lucy, If it's doxycycline (that's the only one I've stopped and started enough to confirm a pattern before I was finally put on long term antibiotics), then the 3 rd full day on it is when I looked up and noticed that today was very different than previous days. I would have suddenly accomplished a lot more, things that had seemed hard or impossible to do got done without much thought. My house would be neater, food would be cooked, and I would realize I had not spent the day locked in my head worrying like I was in a rocking chair. It's a pretty intense experience. But it can take experiencing it a few times before you feel confident that the antibiotic really did this. It doesn't necessarily make all anxiety go away immediately - if it did I wouldn't still be on xanax. But the improvement is dramatic enough, often by the end of the course. And it has been my experience that the biggest improvement only comes w/antibiotics and antifungals together, which is really really hard to get from a mainstream doctor. But one alone can still help. The TYPE of antibiotic is important too. Zythromycin can improve ocd and anxiety, but only after you've finished it - during the course, my brain will spark and flicker even worse. I hate it, and will only take it if I have to cover something specifically that won't be covered by doxycycline, and now lately, keflex. I honestly don't know if keflex would help anyone as much as doxycycline does, because I haven't taken it without also having the new addition of amantadine - which I do know is the cause of my most recent improvements (because I did stop and try other meds, only to reress badly until the doctor moved on back to the amantadine). Doxycycline has actual anti-inflammatory and immune modulating properties to it, so it is actually doing something to the immune system, maybe the immune activation in the brain like minocycline is known to do (but minocycline doesn't work on me). HTH ________________________________ From: Lucy Town <lucy1628@...> Sent: Sun, February 13, 2011 12:19:59 AM Subject: Re: Re: Dental work , How soon did you feel the relieve of anxiety after being on antibiotic and antifungal? Would the anxiety return if you stop taking antibiotic and antifungal? Thank you! Lucy ________________________________ From: <thecolemans4@...> Sent: Sat, February 12, 2011 8:44:48 AM Subject: Re: Re: Dental work Oh I haven't had success with an anti-depressant yet. Xanax is a benzo like valium. I did actually do well on Effexor for almost a year, then it destroyed my stomach. But xanax, I wouldn't recommend it very everyone, because it is addictive and I know too many people who it wears off on and they increase the doses. You're not supposed to take it more than a year. I'm the opposite though - I'm always taking less, and then I'll quit it - it sedates after it has eased the anxiety enough that you're not in a state of 'unnnn!' and I hate that. It's a need/hate relationship. SSRIs, though - do exactly as you describe - jack me up. Awful. They don't affect the kids that way though. I haven't had more than 10 drinks in the last 12 years, and if I do, I find it makes me feel worse. But if you do drink alcohol, Dr G says to only drink tequila. It's the only alcohol that won't feed yeast (and I find that very true). I miss my merlot, but I'm allergic to it - triggers fibromyalgia, and so does whiskey and bourbon. BTW - narcotics might get you moving, but if I take say cough syrup more than a couple of days, I find my thoughts get really negative. They won't relax you either - they'll jack you up. If you're like me (and you probably are if you can drink people under the table - one at a time in a row - I'm a legend at one wedding and they still talk about it 20 years later lol), at first it will seem like a miracle, and it can be hard to notice the negatives cropping up, but they're there. They're really hard on anxiety. I do believe in using 12-step thinking - that eases my anxiety more than anything non-med I've been able to find, but the generalized anxiety 'hum' never goes away without treatment. And the only thing that works is the antibiotic - especially along with an antifungal. My brother has the same severe anxiety as I do, and I've directed him a couple of times (begged and nagged for years though) towards specifically requesting doxycycline, and after experiencing it a couple of times in combo with nizoral, he's finally a believer, and is going to be seeking help w/Dr too. There are very very few doctors that would treat anxiety this way. Docs that treat lyme will, but the antibiotic choices they typically use are baaad news for me. That's all I'll say 'bout alcohol on-list since this list is about our kids, and I've given off a loooot of personal info lol, but I bet a lot of our moms (and dads) experience some of this too. Dr G devoted a chat (back in the years we chatted every Tuesday) to sugar free mixed drink recipes - it was fun . You're welcome to contact me off-list too. ________________________________ From: Jerri & Nick Gann <njgann@...> Sent: Sat, February 12, 2011 12:21:53 AM Subject: Re: Re: Dental work Wow,never tried Xanaz, but any other anti-depressent I have ever tried has gotten me so jacked up after some time (at first they would seem to help) I felt like i was on crack (I'm guessing I've never been on crack) like ten cups of expresso and I'm grinding my teeth on something, and I could drink others under the table(aloohol) and tell them every embarrassing thing they did. No one wanted to hear that of course. Never had panic attacks, just generalized anxiety always, i can totally relate to post tramatic stress veterans and that is where I always want to give money, if I ever do. Many of them say they can't get to relaxation, although I think, many of them have been to that point and know what it's like. I don't think I've ever been there, so maybe I'm not as desperate as one vet i read about, who off'd himself from inhaling " dust off. " It gave him enough of a relief from the moment he actually died from it. Sorry, I know this is very negative and I hope no one ever tries it because i wrote about it, but I am desperate for my body to relax but certainly don't want to do that. I drink a lot of water but will try and drink more , thanks for that suggestion of being hydrated. I recently had a short course of Keflex and had brief moments of feeling relaxed and optimistic towards everything. The minute the course ended that was gone and our family dr. said I do not need anymore antibiotics. But those few momets have me hoping this is the answer and I'm working with Dr. G and hope he accepts me as a patient and gives me a longer dose of antibiotics that will work, whether Keflex or other. Isn't that better than drinking yourself to death or seeking out other forms of relaxion that are exremely harmful? I joke around with everyone, I would take herion if I knew someone that had it, but some days I am serious. Thanks for being so brave to share everything, . I know I have a lot of the same symptoms and I'm desperate for help for my kids and for me so I can continue to help them. bravo! Youve helped me and probably many others to be brave too. ---- Original Message ---- From: thecolemans4@... Subject: Re: Re: Dental work Date: Fri, 11 Feb 2011 21:46:21 -0800 (PST) >Sounds like a pattern with us, doesn't it? It's a very rare problem, >yet what >... 3 or 4 of us have had that experience in just this small group? >Wierd, >isn't it? > >Xanax - no other anti-anxiety med - is the only thing that can pull >me out of >severe anxiety, and even it doesn't really knock it out. If I'm >lucky, it makes >it tolerable. I just won't take more than a mg at a time anyway, >because if >that's not enough then just too bad, so I don't know if higher doses >would stop >a panic attack. Fortunately those have been gone for years now, even >with my >last big crisis. My panic attacks happened most when I had >dysautonomia and >walked around w/blood pressure of 70/20. I've learned now that if >I'm even the >slightest dehydrated, I have much worse anxiety too. A 1/2 gallon of >water will >do more than a xanax. > >And nothing but antibiotics (well, now I think I can add amantadine >to that list >- not a med) really gets to the root of my anxiety - especially >a >doxycycline/antifungal combo (although now I'm on Keflex and it seems >to be >doing well this time too, except I really think it's more the >amantadine). > >Truly, if it weren't for Dr , I would be disabled. Back in >November I >was in such crisis that I wouldn't have been able to continue working >more than >2 more months. And I had a period of about a year and a half before >I went to >TX where I actually was disabled but didn't realize it. I literally >couldn't >boil water to cook noodles. Some days I couldn't even get it started >for not >being able to remember what I was doing. Then I'd remember " Oh - I >was getting >a pot out " . 20 min later I might get water in it. Then I'd forget >to turn on >the stove. Half an hour later I'd realize that. Then I'd start it, >walk out of >the kitchen, and an hour later wonder what the burning smell was, and >it was an >empty pot smoking on an overheated eye. Sometimes I'd set a timer >and carry it, >and not know why the timer was going off, so I'd have to write a note >for it (if >I could remember to). Or know why the timer went off but not be able >to >remember to make it to the kitchen. I still won't leave the kitchen >if I have >the stove on. I keep a chair next to the stove and sit in it until >whatever I'm >cooking is done. I learned to never leave for any reason. If a >local doc would >give me doxycycline, I'd function for a few days till it was gone, >and it would >start all over. > > Even after starting the protocol, when a couple of major >stressors blew >thru my world, I had some really bad periods - probably because I >wasn't taking >anxiety meds - where I'd regress badly and not even know it until >someone else >told me. Now I'm dancing with my kids and chasing them (running!) >through the >house, laughing, playing, watched a movie, visited with friends I >haven't been >able to be with for years (and being invited back lol), etc, all in >less than a >couple of months of a new med. It's staggering. > > >If I have a bad day, or I think I'm not doing well, or I embarrassed >myself by >rambling and talking or typing too much, I just look back to those >days. > >Oh - there was a point here: I think all of this peaked - not >exactly when I >got strep - although that went untreated for months after I got >labeled a >carrier and really messed me up, but the worst of it started after I >had a good >bit of dental work - a cavity filled, a root canal, and something >else. I >couldn't remember to take my antibiotics, went un-medicated, and all >hell broke >loose (leaking heart valves, worse anemia, cognitive crash.) Another >thing ... >did you know those shots the dentist use have something like >epinepherine? No >wonder I'd start panicking after the injections. I never knew, but >that was the >trigger for intense anxiety during dental procedures. I never >understood, >because I wasn't actually scared of anything. But my body would go >so tense and >rigid within a minute of the shot that my muscles would feel like I >had run a >marathon and worked out in a gym for hours. If you notify your >dentist that >you're sensitive to it, they can do lighter shots w/lower doses of >epi, and it >makes for enough improvement that I'd rather feel a little of the >dental work >than be fully numbed. (I'll lie - no, that didn't hurt when I jumped >out of the >chair.) > > > > > > >________________________________ >From: RobinW <thelancienfamily@...> > >Sent: Fri, February 11, 2011 2:35:56 AM >Subject: Re: Dental work > > >Valium doesn't do it for me either...I was in the er last summer for >a panic >attack and they broke down and gave me morphine because valium and >ativan didn't >work. > >--- In , <thecolemans4@...> >wrote: >> >> Re valium - when I had RK surgery, I was given generic valium, and >it didn't >> work. I ended up taking the max of 8 pills over a 2 hour period >and I never >> felt it at all. (I can also drink shocking amounts of some types >of alcohol >>and >> >> never even feel intoxicated. I thought that was a neat party trick >when I was >> younger.) Also, the numbing eye drops didn't work either - I had >to have >> injections in the conjuctiva. The doctor had a hard time >believing it. A >> couple of months later he spoke to a colleague that had the same >occurance, and >> >> it had been determined that there are a few people that both the >drops and >> generic valium didn't work, whereas the name brand valium will. >> It was wierd. I've found one other person (w/CFS) who had the >same experience >> >> with generic valium. >> >> It's pretty rare though - I wouldn't assume it would be the case >for your son, > >> but if the generic didn't work, liquid and name will. >> >> HTH >> >> >> >> >> >> ________________________________ >> From: LH <lrkhmomx3@...> >> >> Sent: Thu, February 10, 2011 10:16:41 AM >> Subject: Dental work >> >>  >> My son had dental work done. We have had to break the work down >into 3 visits. > >> Has anyone had problems with Valium or the " laughing " gas? If so, >what other >> options did your dentist offer to you? Thanks. >> >> Larra >> >> >> >> >> >> >> __________________________________________________________ >> Be a PS3 game guru. >> Get your game face on with the latest PS3 news and previews at > Games. >> http://videogames./platform?platform=120121 >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 ,I feel the same way as Lucy. Thank You,Tammy F. > > , > > Thank you very much for your long post. You're so right about change > internal > dialogue. That's a part of what cognitive behavior therapies do. > > I'm amazed that you had so many stressors and still functioning, > posting here to > support others. Thank you for doing that and I always enjoy reading > your posts. > > Lucy > > ________________________________ > From: <thecolemans4@... > <mailto:thecolemans4%40>> > <mailto:%40> > Sent: Sun, February 13, 2011 7:12:40 PM > Subject: Re: Re: Dental work > > Hey Lucy, > > Honestly, no my anxiety is not cured. It is, however, dramatically > better. It > also fluctuates up and down. It's definitely a medical/chemical thing, > because > my thoughts don't have to be anxious for me to have the anxiety 'hum'. > But I've > > been very sick for several years now (since 2003, though doing much > better since > > the protocol), and I'm still severely anemic, my ASO titers are > still way > too high. I haven't had the opportunity to use Immunovir, and I think > that is > going to be an option that can help in the future too. Right now Dr > > isn't using it (I see him instead of Dr G - I can't afford 3 phone > consults > every 4-6 weeks and Dr R lets me spread them out since the boys were > with Dr G > for 3 years the first time & he knows I know the protocol in and out). > I think > I could convince him to, but I can't afford it yet because my husband was > unemployed for 6 months, has only been working about 7 weeks, and is > making half > > of what he used to, so it'll be a little bit before I can try that. > > It can take quite a bit of time for the anxiety to really cool down. I > can tell > > a big difference in my anxiety & my cognitive function within 3 days > on an > antibiotic, and the relief is incredible, but it isn't gone. I just > adapt to > the new level but I still feel it. Think, though, if you see anxiety > ON the > meds, how much worse is it off of them? > > I personally cannot take any SSRI. I did what I thought was pretty > well on > Effexor for a while but I developed allergic gastritis to it and > everything else > > I was taking or eating at that time, so I can't take that one now, either. > > Although you may not see improvements on the outside, it doesn't > really mean it > isn't helping at least some. No one around me could see the difference > except > by how the house looked. I mean, I was still anxious, but not as > crippled. And > > there were many times that the anxiety was so intense (without anxiety > meds, > which your little one can't have) that I was nearing disability. My boss > actually asked me at one point if I had taken out the short-term > disability at > work. I was on the verge of losing my job before I was switched to > Keflex and > started amantadine (which I'm pretty sure Dr G won't prescribe yet). > > I had had some really acute stressors one after another for a whole year > straight, and I had not been on any meds, I couldn't eat hardly > anything because > > of my stomach, I had black mold behind the walls in my house that I > hadn't found > > until summer, my husband was unemployed, my oldest son was having a > soy-induced > suicidal meltdown, I had no help because no one could come to my house > without > getting sick, I had a new employer at work who knew nothing about > autism (at an > autism clinic, no less) and the stress it causes on parents and she > called DHR > saying I was in danger from him when I told her what a morning before > school was > > like at our house (before finding and removing the soy he'd been > eating). My > youngest (9yr old) was developing Cyclic Vomiting Syndrome, my Mom was > homeless, > > my husband had to go to rehab, etc etc etc. That's just what I can > remember. > And I was trying to do a job doing medical billing for 9 providers, for a > preschool, had other duties added because they keep hiring people with no > insurance or medical office experience, and I just about lost my > freakin' mind. > > Wait I did. I didn't find it until the amantadine chilled me out > enough to > figure out where I'd left it. And I had even been taking the highest > doses of > xanax that I find acceptable, and it was barely touching it. My ASO > (strep) > titers had shot back up to 1100 (200 is normal right after having had > strep) > which is double what I can function at. I had been forgetting my > doxycycline > (stressors), eating non- diet stuff (because I wasn't capable of > planning > meals for myself anymore w/the gastritis), and who knows what else. > > So even though these meds help, you are just going to keep seeing it > for a > while. I don't know what level he functions at and how much he > understands, but > > it's very important to teach him what anxiety is, and help him recognize > worrying and other anxiety for what it is, and help him understand > that it is > not reality. Also teach him that it won't be permanent. We really can > help > ourselves when we learn to hear our internal dialogue and change it. > It takes > practice though, and a psychologist would be very helpful in figuring > out those > things (only if they have a lot of kids 'on the spectrum'). > > The sad thing that I truly hate to tell parents is this: It takes so > long, and > you just have to stick with it. I was one of the lucky ones: I got to see > these huge incredibly dramatic leaps in my oldest, and my youngest was > spared > from severe autism (according to Dr G) by implementing dairy free at 9 > months > and not finishing vaccines, and starting at 18 months. He now has > Chronic > Fatigue Syndrome because we had to stop the protocol for a couple of > years and > he wasn't well yet, but while his brother didn't regress and continued to > progress (and his labs were good per Dr G), even his brother does better > being back on the meds. *I* counldn't tell as soon as he could. Two > weeks into > > the antifungal, he ask me " Mom? Can I stay on this new medicine from TX > forever? It makes me feel a lot better in my brain. It makes it so > much easier > to be good. " They're 9 & 11, and they're not fully recovered. BUT they > are > far better than I'd ever anticipated. Garrett (oldest) is really just > socially > delayed and has a slower time responding to kids who have been > socializing since > > they were little, and still has more interest than is normal in > engines and > fuels, and 's brain just flickers about so much and he's pretty > OCD. > Garrett is angry with himself and feels lonely but it's getting much > better, > and 's a happy-go-lucky kid who just wants to play and do video > games. > The alternative to this was completely unacceptable. These kids can > conceivably > > grow up, have jobs, have families. And Marcia, whose son is now fully > recovered > > and in college, says her son was a LOT like G at this age, probably > even a > little worse. > > My own experience was that I suddenly changed from a variety of > intense phases > of Tourette's, Chronic Fatigue Syndrome, Fibromyalgia, back to > Tourette's (which > > was actually PANDAS), to severe OCD and anxiety, and then at 30 years > old, > suddenly I was 'normal', my brain went quiet - and I thought THAT was > when > something was wrong lol - and I stopped walking on my toes, my chronic > pain went > > away, and my brain started working in a totally different way. Yes, 4 > years > later I got strep, along w/dealing with autism, and off into illness I > went all > over again. But what I'm trying to say is things will seem static for a > while, or worse, and then something wierd happens (like my son spiked > a 106.9 > fever and got dramatically better for 5 months) and you see all these > huge > improvements. Then you adjust to where you're at, and you want more. > It will > not go away quickly. You may not see anxiety ease until the full year > is up and > > you move into year two - what we call recovery phase where the pieces > all start > clicking together. > > This IS chronic, and frankly, the protocol is the best we've got, > and it's > not even enough for most of us. We need immune modulators, and > possibly the > findings in XMRV are going to shift how we care for our kids a little > more > too. (What we don't need is DAN! - trust me - I've never been sicker - > the > supplements and probiotics are the worst of all for anxiety.) Once you > accept > that it isn't going to be a quick fix (I didn't have to accept that as > hard with > > the kids as I did for myself - it took me a while to accept that I was > going to > continue to be sick even after I made it to Dr - that was a > hard hit for > > me), you release a lot of wasted energy and just give everything > you've got to > following it the best you can with a kind of acceptance and just FAITH > that this > > too shall improve. And it ALWAYS does. We just end up dealing with new > problems and forget how far we've come. And then your kid starts > waking up out > of his fog and you have to go thru all the developmental stages > (sometimes at a > faster pace), and you deal with all kinds of behavioral crap that you > wouldn't > think means that things are actually .... better. Sometimes the > negatives we're > > fighting were actually positives, but we were so miserable we couldn't > see that. > > ________________________________ > From: Lucy Town <lucy1628@... <mailto:lucy1628%40>> > <mailto:%40> > Sent: Sun, February 13, 2011 7:45:05 PM > Subject: Re: Re: Dental work > > , > > Are your meds. prescribed by Dr. G. for anxiety purpose? Are you > taking SSRI > for anxiety? Sounds like your anxiety got better controlled while on > antifungals/antibiotics but not cured. > > My son took Prozac before seeing Dr. G. and he has been taking antiviral, > antifungal , Ery-tab and SSRI for 4-5 months, I don't notice any > difference in > anxiety level. He had doxycycline for 3 month (100mg x 2) before > seeing Dr. G. > and I didn't notice any improvement in anxiety level either. That > means both > Doxycycline and Ery-tab don't work for his anxiety. Sigh! > > Appreciate your reply, ! > > Lucy > > ________________________________ > From: <thecolemans4@... > <mailto:thecolemans4%40>> > <mailto:%40> > Sent: Sun, February 13, 2011 12:17:25 PM > Subject: Re: Re: Dental work > > Hey Lucy, > If it's doxycycline (that's the only one I've stopped and started > enough to > confirm a pattern before I was finally put on long term antibiotics), > then the 3 > > rd full day on it is when I looked up and noticed that today was very > different > than previous days. I would have suddenly accomplished a lot more, > things that > had seemed hard or impossible to do got done without much thought. My > house > would be neater, food would be cooked, and I would realize I had not > spent the > day locked in my head worrying like I was in a rocking chair. > > It's a pretty intense experience. But it can take experiencing it a > few times > before you feel confident that the antibiotic really did this. > > It doesn't necessarily make all anxiety go away immediately - if it did I > wouldn't still be on xanax. But the improvement is dramatic enough, > often by > the end of the course. And it has been my experience that the biggest > improvement only comes w/antibiotics and antifungals together, which > is really > really hard to get from a mainstream doctor. But one alone can still help. > > The TYPE of antibiotic is important too. Zythromycin can improve ocd and > anxiety, but only after you've finished it - during the course, my > brain will > spark and flicker even worse. I hate it, and will only take it if I > have to > cover something specifically that won't be covered by doxycycline, and > now > lately, keflex. I honestly don't know if keflex would help anyone as > much as > doxycycline does, because I haven't taken it without also having the new > addition of amantadine - which I do know is the cause of my most recent > improvements (because I did stop and try other meds, only to reress > badly until > the doctor moved on back to the amantadine). > > Doxycycline has actual anti-inflammatory and immune modulating > properties to it, > > so it is actually doing something to the immune system, maybe the immune > activation in the brain like minocycline is known to do (but > minocycline doesn't > > work on me). > > HTH > > > ________________________________ > From: Lucy Town <lucy1628@... <mailto:lucy1628%40>> > <mailto:%40> > Sent: Sun, February 13, 2011 12:19:59 AM > Subject: Re: Re: Dental work > > , > > How soon did you feel the relieve of anxiety after being on antibiotic > and > antifungal? Would the anxiety return if you stop taking antibiotic and > antifungal? > > Thank you! > Lucy > > ________________________________ > From: <thecolemans4@... > <mailto:thecolemans4%40>> > <mailto:%40> > Sent: Sat, February 12, 2011 8:44:48 AM > Subject: Re: Re: Dental work > > Oh I haven't had success with an anti-depressant yet. Xanax is a benzo > like > valium. I did actually do well on Effexor for almost a year, then it > destroyed > my stomach. But xanax, I wouldn't recommend it very everyone, because > it is > addictive and I know too many people who it wears off on and they > increase the > doses. You're not supposed to take it more than a year. I'm the opposite > though - I'm always taking less, and then I'll quit it - it sedates > after it has > > eased the anxiety enough that you're not in a state of 'unnnn!' and I > hate > that. It's a need/hate relationship. SSRIs, though - do exactly as you > describe - jack me up. Awful. They don't affect the kids that way though. > > I haven't had more than 10 drinks in the last 12 years, and if I do, I > find it > makes me feel worse. But if you do drink alcohol, Dr G says to only drink > tequila. It's the only alcohol that won't feed yeast (and I find that > very > true). I miss my merlot, but I'm allergic to it - triggers > fibromyalgia, > and so does whiskey and bourbon. BTW - narcotics might get you moving, > but if > I take say cough syrup more than a couple of days, I find my thoughts > get really > > negative. They won't relax you either - they'll jack you up. If you're > like me > > (and you probably are if you can drink people under the table - one at > a time in > > a row - I'm a legend at one wedding and they still talk about it 20 > years later > lol), at first it will seem like a miracle, and it can be hard to > notice the > negatives cropping up, but they're there. They're really hard on > anxiety. I do > > believe in using 12-step thinking - that eases my anxiety more than > anything > non-med I've been able to find, but the generalized anxiety 'hum' > never goes > away without treatment. And the only thing that works is the antibiotic - > especially along with an antifungal. > > My brother has the same severe anxiety as I do, and I've directed him > a couple > of times (begged and nagged for years though) towards specifically > requesting > doxycycline, and after experiencing it a couple of times in combo with > nizoral, > he's finally a believer, and is going to be seeking help w/Dr > too. > There are very very few doctors that would treat anxiety this way. > Docs that > treat lyme will, but the antibiotic choices they typically use are > baaad news > for me. > > That's all I'll say 'bout alcohol on-list since this list is about our > kids, and > > I've given off a loooot of personal info lol, but I bet a lot of our > moms (and > dads) experience some of this too. Dr G devoted a chat (back in the > years we > chatted every Tuesday) to sugar free mixed drink recipes - it was fun . > You're welcome to contact me off-list too. > > > > ________________________________ > From: Jerri & Nick Gann <njgann@... <mailto:njgann%40sti.net>> > <mailto:%40> > Sent: Sat, February 12, 2011 12:21:53 AM > Subject: Re: Re: Dental work > > Wow,never tried Xanaz, but any other anti-depressent I have ever > tried has gotten me so jacked up after some time (at first they would > seem to help) I felt like i was on crack (I'm guessing I've never > been on crack) like ten cups of expresso and I'm grinding my teeth on > something, and I could drink others under the table(aloohol) and tell > them every embarrassing thing they did. No one wanted to hear that of > course. Never had panic attacks, just generalized anxiety always, i > can totally relate to post tramatic stress veterans and that is where > I always want to give money, if I ever do. Many of them say they > can't get to relaxation, although I think, many of them have been to > that point and know what it's like. I don't think I've ever been > there, so maybe I'm not as desperate as one vet i read about, who > off'd himself from inhaling " dust off. " It gave him enough of a > relief from the moment he actually died from it. Sorry, I know this > is very negative and I hope no one ever tries it because i wrote > about it, but I am desperate for my body to relax but certainly don't > want to do that. I drink a lot of water but will try and drink more > , thanks for that suggestion of being hydrated. I recently had > a short course of Keflex and had brief moments of feeling relaxed and > optimistic towards everything. The minute the course ended that was > gone and our family dr. said I do not need anymore antibiotics. But > those few momets have me hoping this is the answer and I'm working > with Dr. G and hope he accepts me as a patient and gives me a longer > dose of antibiotics that will work, whether Keflex or other. Isn't > that better than drinking yourself to death or seeking out other > forms of relaxion that are exremely harmful? I joke around with > everyone, I would take herion if I knew someone that had it, but some > days I am serious. Thanks for being so brave to share everything, > . I know I have a lot of the same symptoms and I'm desperate > for help for my kids and for me so I can continue to help them. > bravo! Youve helped me and probably many others to be brave too. > ---- Original Message ---- > From: thecolemans4@... <mailto:thecolemans4%40> > <mailto:%40> > Subject: Re: Re: Dental work > Date: Fri, 11 Feb 2011 21:46:21 -0800 (PST) > > >Sounds like a pattern with us, doesn't it? It's a very rare problem, > >yet what > >... 3 or 4 of us have had that experience in just this small group? > >Wierd, > >isn't it? > > > >Xanax - no other anti-anxiety med - is the only thing that can pull > >me out of > >severe anxiety, and even it doesn't really knock it out. If I'm > >lucky, it makes > >it tolerable. I just won't take more than a mg at a time anyway, > >because if > >that's not enough then just too bad, so I don't know if higher doses > >would stop > >a panic attack. Fortunately those have been gone for years now, even > >with my > >last big crisis. My panic attacks happened most when I had > >dysautonomia and > >walked around w/blood pressure of 70/20. I've learned now that if > >I'm even the > >slightest dehydrated, I have much worse anxiety too. A 1/2 gallon of > >water will > >do more than a xanax. > > > >And nothing but antibiotics (well, now I think I can add amantadine > >to that list > >- not a med) really gets to the root of my anxiety - especially > >a > >doxycycline/antifungal combo (although now I'm on Keflex and it seems > >to be > >doing well this time too, except I really think it's more the > >amantadine). > > > >Truly, if it weren't for Dr , I would be disabled. Back in > >November I > >was in such crisis that I wouldn't have been able to continue working > >more than > >2 more months. And I had a period of about a year and a half before > >I went to > >TX where I actually was disabled but didn't realize it. I literally > >couldn't > >boil water to cook noodles. Some days I couldn't even get it started > >for not > >being able to remember what I was doing. Then I'd remember " Oh - I > >was getting > >a pot out " . 20 min later I might get water in it. Then I'd forget > >to turn on > >the stove. Half an hour later I'd realize that. Then I'd start it, > >walk out of > >the kitchen, and an hour later wonder what the burning smell was, and > >it was an > >empty pot smoking on an overheated eye. Sometimes I'd set a timer > >and carry it, > >and not know why the timer was going off, so I'd have to write a note > >for it (if > >I could remember to). Or know why the timer went off but not be able > >to > >remember to make it to the kitchen. I still won't leave the kitchen > >if I have > >the stove on. I keep a chair next to the stove and sit in it until > >whatever I'm > >cooking is done. I learned to never leave for any reason. If a > >local doc would > >give me doxycycline, I'd function for a few days till it was gone, > >and it would > >start all over. > > > > Even after starting the protocol, when a couple of major > >stressors blew > >thru my world, I had some really bad periods - probably because I > >wasn't taking > >anxiety meds - where I'd regress badly and not even know it until > >someone else > >told me. Now I'm dancing with my kids and chasing them (running!) > >through the > >house, laughing, playing, watched a movie, visited with friends I > >haven't been > >able to be with for years (and being invited back lol), etc, all in > >less than a > >couple of months of a new med. It's staggering. > > > > > >If I have a bad day, or I think I'm not doing well, or I embarrassed > >myself by > >rambling and talking or typing too much, I just look back to those > >days. > > > >Oh - there was a point here: I think all of this peaked - not > >exactly when I > >got strep - although that went untreated for months after I got > >labeled a > >carrier and really messed me up, but the worst of it started after I > >had a good > >bit of dental work - a cavity filled, a root canal, and something > >else. I > >couldn't remember to take my antibiotics, went un-medicated, and all > >hell broke > >loose (leaking heart valves, worse anemia, cognitive crash.) Another > >thing ... > >did you know those shots the dentist use have something like > >epinepherine? No > >wonder I'd start panicking after the injections. I never knew, but > >that was the > >trigger for intense anxiety during dental procedures. I never > >understood, > >because I wasn't actually scared of anything. But my body would go > >so tense and > >rigid within a minute of the shot that my muscles would feel like I > >had run a > >marathon and worked out in a gym for hours. If you notify your > >dentist that > >you're sensitive to it, they can do lighter shots w/lower doses of > >epi, and it > >makes for enough improvement that I'd rather feel a little of the > >dental work > >than be fully numbed. (I'll lie - no, that didn't hurt when I jumped > >out of the > >chair.) > > > > > > > > > > > > > >________________________________ > >From: RobinW <thelancienfamily@... > <mailto:thelancienfamily%40gmail.com>> > > <mailto:%40> > >Sent: Fri, February 11, 2011 2:35:56 AM > >Subject: Re: Dental work > > > > > >Valium doesn't do it for me either...I was in the er last summer for > >a panic > >attack and they broke down and gave me morphine because valium and > >ativan didn't > >work. > > > >--- In <mailto:%40>, > <thecolemans4@...> > >wrote: > >> > >> Re valium - when I had RK surgery, I was given generic valium, and > >it didn't > >> work. I ended up taking the max of 8 pills over a 2 hour period > >and I never > >> felt it at all. (I can also drink shocking amounts of some types > >of alcohol > >>and > >> > >> never even feel intoxicated. I thought that was a neat party trick > >when I was > >> younger.) Also, the numbing eye drops didn't work either - I had > >to have > >> injections in the conjuctiva. The doctor had a hard time > >believing it. A > >> couple of months later he spoke to a colleague that had the same > >occurance, and > >> > >> it had been determined that there are a few people that both the > >drops and > >> generic valium didn't work, whereas the name brand valium will. > >> It was wierd. I've found one other person (w/CFS) who had the > >same experience > >> > >> with generic valium. > >> > >> It's pretty rare though - I wouldn't assume it would be the case > >for your son, > > > >> but if the generic didn't work, liquid and name will. > >> > >> HTH > >> > >> > >> > >> > >> > >> ________________________________ > >> From: LH <lrkhmomx3@...> > >> <mailto:%40> > >> Sent: Thu, February 10, 2011 10:16:41 AM > >> Subject: Dental work > >> > >>  > >> My son had dental work done. We have had to break the work down > >into 3 visits. > > > >> Has anyone had problems with Valium or the " laughing " gas? If so, > >what other > >> options did your dentist offer to you? Thanks. > >> > >> Larra > >> > >> > >> > >> > >> > >> > >> __________________________________________________________ > >> Be a PS3 game guru. > >> Get your game face on with the latest PS3 news and previews at > > Games. > >> http://videogames./platform?platform=120121 > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Amantadine isn't a med. Psychiatrists use it as an adjunct for movement disorders, usually as a result of side-effects from some of the rougher psych drugs. It's being researched as far as I can tell for parkinsons, tourette's, etc. But from what tiny bit I've read (receptor stuff makes my brain hurt - agonist, antagonist, blah blah blah) those wouldn't seem to be targets for that med, so I give up trying to understand. Apparently it's also an NMDA receptor antagonist, w/an effect on ?glutamate... (I keep saying it's helped so much that my OCD is too reduced to research why it's helping lol, but it's true!) Another milder med that affects NMDA receptors is otc Mucinex DM. I doubt it would be a med because first there may not be enough info on long-term effects on this kind of receptor blocking, and maybe it would be considered a band-aid? (In my case, I needed a band-aid or not be able to work anymore. They didn't need me bleeding my insanity all over them.  I don't really know. (I kind of hate to spark so much curiousity about this med on the list since it's about the protocol and I've never seen it used by Dr G, so I might need to stop mentioning it... except gosh I wanna share!) HTH  ________________________________ From: Pedersen <mpedestrian@...> Sent: Mon, February 14, 2011 1:47:29 PM Subject: Re: Dental work  What is amantadine used for... what type of rx is it? thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Thanks , I may be alone here but I think there all a lot of us Mom's looking for some kind of help. I know I have to get healthy and keep myself together somehow, for everyone in my house's sake. I'm hoping Dr G will help me. My main doc would not order the lab tests for me. I undeerstand why. Everything Dr G does is not in the mainstream. I've hung my hat on him and I'm hoping he will help me too. I've had too much like you and most of it, within my own body, I don't blame anyone else for it. I just need some relief and so far I haven't fallen for illegal stuff. I'm responsible for everyone in this house. Too much. Keep sharing girl, I sure need it. ---- Original Message ---- From: thecolemans4@... Subject: Re: Re: Dental work Date: Wed, 16 Feb 2011 18:23:31 -0800 (PST) >Amantadine isn't a med. Psychiatrists use it as an adjunct for >movement >disorders, usually as a result of side-effects from some of the >rougher psych >drugs. >It's being researched as far as I can tell for parkinsons, >tourette's, etc. But >from what tiny bit I've read (receptor stuff makes my brain hurt - >agonist, >antagonist, blah blah blah) those wouldn't seem to be targets for >that med, so I >give up trying to understand. > >Apparently it's also an NMDA receptor antagonist, w/an effect on >?glutamate... >(I keep saying it's helped so much that my OCD is too reduced to >research why >it's helping lol, but it's true!) Another milder med that affects >NMDA >receptors is otc Mucinex DM. > >I doubt it would be a med because first there may not be enough >info on >long-term effects on this kind of receptor blocking, and maybe it >would be >considered a band-aid? (In my case, I needed a band-aid or not be >able to work >anymore. They didn't need me bleeding my insanity all over them.  >I don't >really know. (I kind of hate to spark so much curiousity about this >med on the > list since it's about the protocol and I've never seen it >used by Dr >G, so I might need to stop mentioning it... except gosh I wanna >share!) > >HTH > > > > > > > >________________________________ >From: Pedersen <mpedestrian@...> > >Sent: Mon, February 14, 2011 1:47:29 PM >Subject: Re: Dental work > > >What is amantadine used for... what type of rx is it? > >thanks > > > > Quote Link to comment Share on other sites More sharing options...
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