Thinking of stopping meds for a few days. Good idea or bad idea?

Taking an ABX break during a heavy herx is OK. I would stay on the Nystatin, which pretty much stays localized in the gut for candida. However a yeast die-off has similar herx like Lyme. Your choice.

But when you re-start add them back only one at time spaced a few days apart to better determine if one of them is causing your symptoms.

You can also back off dosage on some of Buhner's herbs and see how that goes.

Haven't tried pulsing my abx. That sounds dangerous for someone like me cause I feel like I'll lose track easily and can't remember if I took it the day before or not. And Lyme brain issues don't help. I don't wanna hear that the meds aren't suppose to cause this side effect or that. I hate hearing that from doctors. I was going to ask my LLMD what I can take for the headaches? Like Excedrin migraine or something.

Is there a special format or spreadsheet you use to follow your symptoms. I feel like just writing in a diary isn't enough. There should be a way to list everything without it being too.....jumbled.

I know EXACTLY what you mean about writing an entire diary..this is how I did it..in the beginning I wrote EVERYTHING down and I do mean everything..I realize that for me that was not only consuming to much of the tiny bit of energy I had,but also causing me to focus to much on this demon we live with and I am finding out that your mind/imagination is one of your very worst enemies..so...I then started writing the date,any new good or bad thing happening and just highlighting the important things(such as about a week ago,my taste buds kicked into gear for the first time in years and then quit again...I wrote that down)..I write down exactly what meds,milligrams or U's,what supplements and how often/what time a day I take them...you do not have to do that everyday,just note when you change a time,dosage or whatever...ill also add a few word note such as"not feeling as bad today or feeling so much worse" because I can forget how I felt yesterday at this point in the game.lol

I want to REALLY make sure you understand this next part CLEARLY...for ME the meds (abx,nystatin etc) really have set me back a long way while they are working..I went from working a few hours per day,bit of blurred vision,bit of brain fog to totally wiped out and answering a phone 10 minutes AFTER it stopped wringing..overwhelming panic,felt like I was going blind and doubting my diagnoses...feelings of doom would hit me from nowhere..after much study and talking with people who have been through it I now know that the meds we are on definitely CAN cause what you and I are going through...you should also know that many of us have heard our regular docs say"no way can abx cause this" or worse yet,look at us as if we are crazy...my advice to you is the advice I am following myself...first take a deep breath and relax,there are people who undertand you here and willing to help...if you trust your LLMD then do not sweat what the other docs are saying..play the game with them and relax knowing your LLMD is the person wh's opinion counts,not the GP doc's...you and I and the rest of us are going to make it out of this nightmare and when you do,help others who are still suffering with it...if you panic,deep breathe and realize "its just the Lyme" and I am beating it.

I got sick in sept of '05..went from a happy,very healthy 265 pounds to 210 of quivering wimp by dec...started with a headache and flu like symptoms to a very stiff neck,unbelievable nausea within a couple weeks and by december I felt like I had lost my mind...finally went to the doc..saw a PA who promptly diagnosed me with depression and put me on PROZAC!!!

Make a long story short,I ended up with a SEVERE maxillary sinus infection in Jan '06..she gave me 3000mg of amoxicillin for 30 days..during the whole thing I was still strong enough to use a big chainsaw with one hand,but a week into the abx I tried to cut wood and wasn't strong enough to start the saw..horrible headaches,confusion,heart attack like symptoms,panic..within a month I was feeling a bit better and asked her for another month of the abx and she gave them to me..I stayed weak and nausea was awful,but I was getting better(had I known then what it was,had detoxed and used Nystatin we wouldn't be having this discussion).

I felt a million times better within about 4 months(it happened instant too..one day sick,next day starved to death and eating everything I could shove in my mouth)..I slowly but surely got better,but still "wasn't right" as far as energy..that started almost 9 yrs of one doctor after another,weird come and go symptoms including Bell's Palsy or "slapped face syndrome",heart palipitations,weak spells from nowhere,heat intolerance,pqnic attacks,air hunger..all waxing and waning ...I had never had a cavity and all of a sudden I was getting toothaches and then a round of abx and I would feel better..doctor after docter,tested for MS,Lupus,cardio,mold exposure on and on..finally last year after getting bitten by three ticks under my arm and the knots they left I asked for a Lyme test..two panels came back(Labcorp of course) and I started investigating Lyme as a possibility..got lucky with the number of an excellent LLMD and now? Here I am.lol
I strted treating with 200 mg doxy in May..like to have killed me in the respect that I was working a bit til then and I just couldn't handle it..stopped to get back to base and tried again..two weeks into it I couldn't walk...stopped and reset and stuck with it for 3-4 weeks and had to stop..took six weeks to get anywhere near back to base..but,I was not properly detoxing,taking the right supplements or anything..started Ceftin oct 9th and am on a easier rollercoaster right now..detoxing much better,taking my Nystatin religiously,Traveler help with more suggestions such as Kefir and charcoal..I am feeling much better in my knees and legs,still a bit crazy,blurry vision,but the slapped face feeling leaves for a few days at a time now and so does the burning,pain and tingling in my left arm..progress inch at a time is what its about for us and Ill take it :)

Its been a long road for sure.

The good part of it is,I used to get worn out,panicky and all these crazy symptoms and think "God,Ill be glad when they find out what this is"..Now at least I can say "God,Ill be glad when this mess is over"..be surprised what a difference that makes :)

Yes,those stomach issues are awful to deal with..Traveler turned me on to the Ginger Tea thing and that seems to help me for some reason..a lot of gas around my sternum area that will not leave is the one thing I despise almost the most of any of the symptoms.

I made one of those midnight runs to the hospital too and was blown away when they said "panic attack"..I knew I was dying..that was earlier on in this ordeal and it taught me to avoid the hospital until I tried calming down first..so far,so good. :)

Water,water and more water..Buffered Vit C (I'm not sure if I can mention the name of it on here or not? I'm still new here)..I use the Epsom salts/hydrogen peroxide baths(better now that I know not to use really hot water..THAT was a learning curve)..Lemon water almost constantly through the day,just getting ready to start the Charcoal and Milk thistle.

I messed up all around at first..didn't quit drinking soda,ate whatever I wanted and it bit me..I figured I was tough enough to live this long with it and the abx would just "work"...another learning curve :)

I did have some kind of breakthrough this afternoon though..I have been having a horrible time seeing and really worn out..I went from hot to cold all day today and really have more than usual eye issues..I had some welding that HAD to be done tonight to pay a bill tomorrow..all of a sudden I started sweating(its very cool here this evening) and my eyes started burning and it was like honey came out of my tear ducts..10 minutes later I could see as if nothing was wrong and I felt better overall..hope this lasts awhile.lol

Wow..it sounds as if you and I have a LOT of the same symptoms!

The weird thing about that "sweating episode" is,I felt it coming on all day(I know that sounds odd),but I was indoors all day yesterday through the day and the temp remained the same and I was going from hot to cold and back again and around my eyelids felt "weird"..it was in the 40's when I finally went to the shop and I know this will sound crazy,but I wasn't hot nor cold when the sweating started(never did feel either way throughout it) and that mess that came out of my eyes was very sticky feeling...I could see again almost instantly..that is still going on with my eyes this morning a bit too.

Another symptom we seem to be sharing is the nausea..every morning for 9 yrs now I have woke up and within 15-20 minutes had a wave of nausea hit me..this has been a constant without change other than somedays are worse than others..it generally goes away as the day progresses,but since starting ABX that's not a sure thing anymore and I may walk around like that all day...mornings are worse for nausea,mid day is worse for panic attacks and by late afternoon I am usually doing better and then its just the brain fog and fatigue..like I said though,since ABX,nothing is the same :) I will try cabbage juice,but I have a REALLY hard time with Kefir,so not sure if I can handle that or not.lol

OMG! That first epsom salt/hydrogen peroxide bath was a real shocker for me..I thought "this is crazy,what is this gonna do"...got the water hot as I could stand it,dumped a big bottle of hydrogen peroxide in,about 4 or 5 cups of epsom salt and laid there til the water cooled off..bad move on my part..rashes broke out on my lower back and down both legs(they have been a bit of a come and go thing for 9 yrs anyway),my body felt like jelly and I couldn't hardly walk for a couple of days..needless to say I have read up on such things quite a bit since then and have come to understand that regardless of how tough a person USED to be has nothing to do with the here and now..I'm a LOT more careful with everything I do or try different now..baby steps..I am 6'3" and know what you mean about a tub sucking :(

Do you have problems with heat and humidity? Humidity floors me and as time has went along I went from fishing constantly in my spare time to not fishing at all in the past couple of years..same with the heat..it saps my energy very quickly and I was never like that before this stuff.

You reminded me of those headaches..I have been getting some rough ones,but I had a really bad car wreck back in March,herniated a couple of disks in my neck and figured that was what they were from,but since talking to you I remember the real headaches didn't start until I started the ABX..I KNOW Nsaids are supposed to be a no go for us,but my regular doc prescribed 800mg because I refuse to take pain pills because I just can't handle the feeling they give me...that Ibuprofen usually takes care of my shoulder/arm/hand pain(dulls it at least) and knocks my headache as well..I try to only take it when I am at my worst though because of how hard it is on my gut..I had totally forgotten all that til this morning(told you I have brain fog.lol)..another thing that helps me is a fan or the a/c blowing in my face when they hit and that also helps when I have a bad day(or week) of air hunger.

Ahhh those wonderful panic attacks..a long time ago my regular doc diagnosed me with General Anxiety Disorder(another crap diagnoses to add to the dozens of others) and he prescribed 1mg of Ativan and he said to let it disolve on my tounge when I felt one coming on..I despise medicine of any type and am VERY wary of it,so I 1/4 it and it helped..over the last 5 yrs I had moved up to 1/2 and would use it as a last resort or if I had to go somewhere that I knew it would stress me out I would take a 1/2 and it helped quite a bit..a script of 30 would usually last me between 2-3 months and have had times where I wouldn't take one for a month at a time or longer..my panic attacks came on with some warning that it was going to happen,I could think myself through them and within 15 minutes they were usually gone..some were raunchy,but in general I could deal with it even at its worst with a 1/2 of Ativan...THAT changed when I started ABX..after I was on Doxy for about a week I finally found out what a REAL panic attack was all about..the others were nothing,these were EVIL..they would come on me within 30 seconds or less,full force! Legs go to rubber,chest pain,tingling in both arms and hands,shaking and feel like "this is the big one"..they would start around my upper stomach,tight feeling like a band and then move right around the sternum area and from there the rodeo was on..those type required the full 1mg of Ativan and even at that dose it was a rough ride..they could last an hour or more..the 3rd week on doxy it was just a cycle between panic,pain and confusion with air hunger and horrible brain fog thrown in just for fun..I felt like I was coming unglued..I went by the protocol sheet from my LLMD and pulsed..that didn't help(if retrospect I may have only did that for a few days,but it felt like a month..I was truly going nuts)..so,my sheet said I could stop,get back to base and try it again..that's why I "reset" 3x..what I SHOULD have done was call my LLMD when the very first episode occurred,explained what was going on and then went with what he said(I do that now)..I finally reached the end of my rope of being able to deal with them and called him the end of september...after a minor butt chewing I was told to move to Ceftin and to CALL with the slightest of problems..they said the people that call everyday with everything are a bit of a problem,but the ones like me that NEVER call are the biggest problem..I was raised to not bother people and its worked out good for me over the years,the opposite is true though when we are dealing with this..call your LLMD before changing ANYTHING and either get "permission" or suggestions..that's why they are there.

The panic attacks took a couple of weeks to calm down and go back to the "old school" ones I was used to..when I started the Ceftin I was figuring that they would return like the Doxy type..I am still having them every day or two,but NOTHING like the ones I had on Doxy..the 1/4 or 1/2 mg of Ativan are back to "managing" them so much better.

Also about the Ceftin vs Doxy for ME(not saying this would be the case with anyone else)..my stomach issues are easier to deal with,I have been having weakness/pain in my knees and calves to the point it was getting rough to walk and "steer" my legs..when I went on Doxy that was amplified many times over to the point of a wheelchair running through my mind a few times a day(horrible,scary thought that didn't help the panic either)..when I switched to Ceftin a week later I wrote in my journal "legs seem to be feeling a bit better,no knee pain today"(see,a journal helps.lol)..a week or so later I wrote"no calf pain today and feet feel warm"...its now been only a month and the calf/knee pain is staying at bay and been replaced by more heel pain in the mornings.lol

I know that feeling of stomach tightness in a vehicle and the other symptoms too...mine is like gas around my sternum and it makes it hard to breathe sometimes..my wife is sick too,we have two kids and so I have to buck up and drive myself most times...I feel better driving than riding anyway because it keeps my mind off of it.

Traveler gave me some excellent links to a "diet",but I haven't had the time to really look it over as well as I should yet,but intend to..I know I have developed an allergy to Soy over the years for some reason and it gives me gas that moves into my chest which in turn brings on a panic attack..that sucks because I used soy sauce in my jerky marinades and on Chinese food :(

Anything I am telling you or anyone else reading this is these things are just what I personally am doing and I do not advocate or encourage anyone to do the same things without calling their LLMD or regular Doc first..I have made some big mistakes and hope not to repeat them...to many times at least.lol

Yes,bathtubs,foreign vehicles and twin sized beds were not intended for me or your husband.lol

I use Emergenc-C. It is a buffered efervescent(sp?) And I use one pack in the morning and one in the evening..both with at least 8oz of water.I can tell the difference when I take it.I ran out about 4 days ago and drove 30miles one way yesterday to pick some up,got there and grab some things I didn't really need and Ill be danged if I didn't just waddle right off without getting it! Brain fog is a beautiful thang :)

That eye deal happened once before while I was on doxy..it was like honey mixed with salt started oozing out of my tear ducts..burned my eyes bad for a few minutes and the low and behold,I could see excellent for a day or so..really gave me a much needed shot of hope when it happened.

That soy thing really hurt my feelings whenI realized what had happened..I used it in my deer/beef jerky and had just started liking chinese food and the soy sauce was a big part of it..now I avoid it..I tried it about a month ago again(due to being stupid and having to look at a hot horseshoe more than once) and the same "herx like " reaction..so I'm done with it :(

If you're taking Ceftin, you might want to ask your LLMD about complementing it with Bactrim,

since Ceftin is a cell wall drug that doesn't kill on replication, and Bactrim will stop the spirochetes from reproducing.

about the tearing up thing-

Does anyone ever tear up when they're about to fall asleep, and then your head starts shaking and you can't move for 15 seconds or so?

This has happened to me several times and is pretty disturbing.