Aa
Tomorrow is the day for LLMD and I almost had to cancel *no question- just update
As you all know, I have not had a good week! Sunday, my grandfather died, and thank you to everyone that sent me such beautiful messages. That same night my mother in law got into a car accident, (she's ok) but she just had back surgery in May and she was having some back pain following the accident. Last night was the wake for my poppy and after an 8 hour night of crying and gathering with family and friends , my mother in law called at 11:30pm, informing us that my husband's father just had a heart attack... My husband had to go without me to the hospital to be with his family at that time, while I stayed home with the children.
Today, we had the funeral services for my poppy and right after the buriel, we headed straight up to the hospital. As of right now, he is stable but in critical care. Soooo, needless to say, I am whipped, my kids cant stop crying and my husband is finally napping. What a day! What a week, and I was so close to cancel my appt. becuase at this point, I felt like it was selfish of me to take my husband away from his dad during this time.
My mother in law insists that I still go, because she wants me to get answers, but the little voice inside my head keeps saying to call and reschedule... I have had such a horrible week, and I just want it to end where, my father in law is ok, and I finally get some answers.
Thanks everyone for all of the support you give me, I feel good knowing I have everyone here to get me through this difficult time.
Pam
Today, we had the funeral services for my poppy and right after the buriel, we headed straight up to the hospital. As of right now, he is stable but in critical care. Soooo, needless to say, I am whipped, my kids cant stop crying and my husband is finally napping. What a day! What a week, and I was so close to cancel my appt. becuase at this point, I felt like it was selfish of me to take my husband away from his dad during this time.
My mother in law insists that I still go, because she wants me to get answers, but the little voice inside my head keeps saying to call and reschedule... I have had such a horrible week, and I just want it to end where, my father in law is ok, and I finally get some answers.
Thanks everyone for all of the support you give me, I feel good knowing I have everyone here to get me through this difficult time.
Pam
Well, I of course took advice from all of you here, I do have a pill organizer, but my problem is I forget to fill it, lol, I filled it up for the week. I just have to remember to do it again when I empty it. I just took my afternoon pills and thought of all of you guys doing the same thing. LOL
Thanks for letting me know about how herxing can be different for everyone, I didn't know what to expect. So, maybe I am herxing (mildly), or maybe not. I will take it day by day, and just keep good notes.
Pam :)
Thanks for letting me know about how herxing can be different for everyone, I didn't know what to expect. So, maybe I am herxing (mildly), or maybe not. I will take it day by day, and just keep good notes.
Pam :)
I agree with the comment above about Herxing being an individual thing. My LLMD told me that some patients don't Herx at all but still respond to treatment. The idea that you must Herx terribly, or that the more sick you are the more you will Herx, is in my opinion an over simplification.
My LLMD thinks that I'm the sort, possibly just by genetics, who does Herx more severely. I'm a large person, but can have terrible Herxing even from very low dosages. I used to endure it thinking it was a necessary evil but now I just take treatment "low and slow." That way I'm more functional more of the time, which seems to be in everyone's best interest.
I used to have two pill organizers full of supplements but for me they never seemed to make any difference, so I only take a few things daily. Though I guess it's all relative because while I think I don't take many Rx's or supps, I know my spouse complains about how much counterspace my meds occupy...
My LLMD thinks that I'm the sort, possibly just by genetics, who does Herx more severely. I'm a large person, but can have terrible Herxing even from very low dosages. I used to endure it thinking it was a necessary evil but now I just take treatment "low and slow." That way I'm more functional more of the time, which seems to be in everyone's best interest.
I used to have two pill organizers full of supplements but for me they never seemed to make any difference, so I only take a few things daily. Though I guess it's all relative because while I think I don't take many Rx's or supps, I know my spouse complains about how much counterspace my meds occupy...
I have 2 pill orgnzrs, one for meds and inflamation drugs (am pm), the other is for nutracells (am and pm as well) I also take Sacchomides boullardi probiotic. Funny if ya think about it, we're all taking the same stuff at the same times, lol. Good time to think of one another and wish each other well as we "take a drink"
I am so glad to hear you are getting somewhere! I have been away for a while a couple of months. I am on doxy and a few other abx. I think you can't take doxy with milk. I didn't herx very much in the beginning, but had a major flare up a two or so weeks later. It was shocking...but it passed. I am starting to see a monthly flare up pattern (around my period). I never noticed this until my husband marked my monthly 'moon cycle' on the calendar because he was sick about me freaking out about being pregnant unecessarliy. Then I connected the dots.
I made a big chart for my meds that has the days of the week across the top, and times of the day down the side. I compiled my drugs into that chart (on the computer). It looks like a big pill organizer. It is a good visual to easily organize my pills.
I made a big chart for my meds that has the days of the week across the top, and times of the day down the side. I compiled my drugs into that chart (on the computer). It looks like a big pill organizer. It is a good visual to easily organize my pills.
I do what Ree does -- use a pill organizer and also have a list taped to the inside of the cupboard door of what to take when, and with or without food. Also in the fridge (where I keep most of my meds and supplements) I have the once-a-day meds in one pyrex baking dish and the twice-a-day in another dish, and the probiotics sit between the dishes so I remember to take the probiotic in the middle of the day.
When I go on a trip out of town, I use little zip baggies and write "Monday a.m." and "Monday p.m." etc. on them so I can keep it all straight.
When I go on a trip out of town, I use little zip baggies and write "Monday a.m." and "Monday p.m." etc. on them so I can keep it all straight.
I was going to say what Jackie already said about the herxes and probiotics. I am a big fan of probiotics and believe they are necessary to replace the good bacteria that the antibiotic is killing off. It's a good idea to take it before a problem arises.
I hear you about the pills...Putting them into a pill organizer helps. Between medications and supplements, I must be taking about 20 different things. SOme on empty stomach, some with food, some not with others. It is a little crazy. We just do the best we can, I guess.
I hear you about the pills...Putting them into a pill organizer helps. Between medications and supplements, I must be taking about 20 different things. SOme on empty stomach, some with food, some not with others. It is a little crazy. We just do the best we can, I guess.
Hi Jackie! I always feel so much better when I talk to you guys :) I feel like I have a pretty good understanding about all of this, but then I start to get myself all confused as to what is what LOL!
My doc, did tell me to get on a probiotic, I have it , yet haven't taken it because I thought I only needed to take it when the first signs of a yeast problem occured, I must've misunderstood at one point or another. I will take your advice and plan on taking it 4 hrs. after my morning dose. It is so hard to keep track of all of my meds, because, I cannot take certain pills together, some require to take with food, others take only before bed,,, ahhhh !!!
I am going to have to start another post, I have more questions, LOL
Talk to ya soon, :)
Pam
My doc, did tell me to get on a probiotic, I have it , yet haven't taken it because I thought I only needed to take it when the first signs of a yeast problem occured, I must've misunderstood at one point or another. I will take your advice and plan on taking it 4 hrs. after my morning dose. It is so hard to keep track of all of my meds, because, I cannot take certain pills together, some require to take with food, others take only before bed,,, ahhhh !!!
I am going to have to start another post, I have more questions, LOL
Talk to ya soon, :)
Pam
It's good that you're keeping records of how you feel. I'd encourage you to simply write down whatever that feeling is at the moment or at least at the end of the day, without downplaying a symptom or feeling that doesn't seem like Lyme, or isn't the right kind of symptom, or whatever. Being a neutral observer is hard when it's your own body, but that's the advantage of just writing it down without analyzing it.
I look back on my log and am amazed at patterns I didn't see until later, or symptoms I didn't realize were so frequent. You say above: "I don't believe I am having herxing problems. I have had some minor things happen, but nothing that seems alarming--" Herxes don't have to be alarming -- they can be very low level; it's different in different people.
You also ask: "If I don't have a herx, does this make lyme less possible, or could it mean that I have had this for so long that I might not have herxing right away?" There's not that tight a correlation, to my understanding. I was very very ill but never had much in the way of Herxes. How long you've been infected doesn't directly correlate with the severity of Herxing, to my understanding. It's more complex than that. My Herxes were never as bad as the illness itself, but everyone is different.
Does your doc have you on probiotics to replenish the 'good bacteria' in your gut? The abx are killing off everything, good and bad, and that can, in severe cases, cause very serious problems. The probiotics need to be taken at times away from the abx, at least several hours -- I generally aim for 4 hours before or after the meds, once a day. (There is a nonbacterial probiotic that is yeast-based, and some people do well with that. The generic name is S. boulardii. I had problems with it, because I seem to be yeast-sensitive or something. Most people do all right with it, and it can be taken at any time of day because the antibiotics, which kill bacteria and nonyeast probiotics, don't kill the yeast in yeast-based probiotics.) Check with your doc, but your visits to the bathroom may be connected with this issue.
I look back on my log and am amazed at patterns I didn't see until later, or symptoms I didn't realize were so frequent. You say above: "I don't believe I am having herxing problems. I have had some minor things happen, but nothing that seems alarming--" Herxes don't have to be alarming -- they can be very low level; it's different in different people.
You also ask: "If I don't have a herx, does this make lyme less possible, or could it mean that I have had this for so long that I might not have herxing right away?" There's not that tight a correlation, to my understanding. I was very very ill but never had much in the way of Herxes. How long you've been infected doesn't directly correlate with the severity of Herxing, to my understanding. It's more complex than that. My Herxes were never as bad as the illness itself, but everyone is different.
Does your doc have you on probiotics to replenish the 'good bacteria' in your gut? The abx are killing off everything, good and bad, and that can, in severe cases, cause very serious problems. The probiotics need to be taken at times away from the abx, at least several hours -- I generally aim for 4 hours before or after the meds, once a day. (There is a nonbacterial probiotic that is yeast-based, and some people do well with that. The generic name is S. boulardii. I had problems with it, because I seem to be yeast-sensitive or something. Most people do all right with it, and it can be taken at any time of day because the antibiotics, which kill bacteria and nonyeast probiotics, don't kill the yeast in yeast-based probiotics.) Check with your doc, but your visits to the bathroom may be connected with this issue.
Hi ree, thank you. I don't believe I am having herxing problems. I have had some minor things happen, but nothing that seems alarming, at least not yet!LOL
If I don't have a herx, does this make lyme less possible, or could it mean that I have had this for so long that I might not have herxing right away? I am so confused, because if I have a twitchy muscle, say on my lip or butt, and then have slight ankle pain and hip pain, I am thinking this could be the start of a herx, but then it isn't as bad as I thought I would probably be feeling.
I am keeping a daily record of whatever I may feel for the day, and today I have had some stomach,(bathroom problems) twice already withing one hr. soooo,,,,,,
Thanks for the advice!!
Have a great day,
Pam
If I don't have a herx, does this make lyme less possible, or could it mean that I have had this for so long that I might not have herxing right away? I am so confused, because if I have a twitchy muscle, say on my lip or butt, and then have slight ankle pain and hip pain, I am thinking this could be the start of a herx, but then it isn't as bad as I thought I would probably be feeling.
I am keeping a daily record of whatever I may feel for the day, and today I have had some stomach,(bathroom problems) twice already withing one hr. soooo,,,,,,
Thanks for the advice!!
Have a great day,
Pam
Hi Pam,
I haven't been on medhelp regularly lately so I am just checking in now. I am very sorry to hear about your loss and your other circumstances.
When I took Doxy, I herxed like crazy and I believe it was the second day the herx began. This was several years ago. I am taking other abx now. Wonko is right about the sun. You want to wear sunblock even if planning to be outdoors for only a little while.
Hang in there -
I haven't been on medhelp regularly lately so I am just checking in now. I am very sorry to hear about your loss and your other circumstances.
When I took Doxy, I herxed like crazy and I believe it was the second day the herx began. This was several years ago. I am taking other abx now. Wonko is right about the sun. You want to wear sunblock even if planning to be outdoors for only a little while.
Hang in there -
Jackie- I guess I can say, so far so good, as far as taking the doxy. Today I start my third day, and I have only had some heart burn, stomach pain and twitchy muscles in my left cheek, right thumb , left calf, and my butt,>lol, My fatigue hits me and today I slept in for the first time in months, Thank you so much for all of your helpful information, I feel blessed to have you as my internet friend that is dealing with this first hand.
Wonko-Thank you for sharing what you have experienced, I wasn't sure if it could start so suddenly, but like you said, everyone is different in their reaction. I was trying to read up on dosage of doxy and the 1 month prescription to see if he believes that I may have lyme and the treatment regimen he put me on is to watch for any type of herxing. I suppose we'll see what happens, lol
ewford- Thank you that was so sweet and heartfelt! Believe me, I have spread the word so much already and I am not even formally diagnosed yet It's amazing how much my family is looking deeper into this whole ordeal, and they are even spreading the word. The day that I went for my appt. I also visited with my cousins that live in Nanuet, NY.
My cousin Joe, has MS, (we are not cousins by blood), my blood cousin Phyllis has Familial Mediterranian Fever, my cousin Judy was telling me how her 7 yr. old has been going through bouts of his legs not moving and he was crawling with his arms to get around. She was asking me all sorts of questions about what I have been going through over the years. I told her to watch the documentary Under Our Skin.
I also told her as my husband and I were on our way to my appt. in Mt. Kisco, NY, we were looking at all of the trees and saying how beautiful the colors were and how many ticks are in there, LOL I can't help it now, that's all I think about when I see alot of foresty trees.
It's funny that you said, how I don't look at you guys as a bunch of whackos, I think you all are so very intelligent and after the research that I have done,YOU GUYS HAVE THE RIGHT INFORMATION!!!!!!!! and everyone needs to realize that lyme disease does exist and can cause so many problems.
I say all the time to my family, " I don't care who thinks I am nuts, I am going to be fully aware of what's going on with me, so I can protect my family as well."
I will continue to spread the word whether or not this is lyme I have. No one needs to suffer.
You guys are my friends and I am so appreciative for all of you!
Thank You from the bottom of my heart!
Pam
Wonko-Thank you for sharing what you have experienced, I wasn't sure if it could start so suddenly, but like you said, everyone is different in their reaction. I was trying to read up on dosage of doxy and the 1 month prescription to see if he believes that I may have lyme and the treatment regimen he put me on is to watch for any type of herxing. I suppose we'll see what happens, lol
ewford- Thank you that was so sweet and heartfelt! Believe me, I have spread the word so much already and I am not even formally diagnosed yet It's amazing how much my family is looking deeper into this whole ordeal, and they are even spreading the word. The day that I went for my appt. I also visited with my cousins that live in Nanuet, NY.
My cousin Joe, has MS, (we are not cousins by blood), my blood cousin Phyllis has Familial Mediterranian Fever, my cousin Judy was telling me how her 7 yr. old has been going through bouts of his legs not moving and he was crawling with his arms to get around. She was asking me all sorts of questions about what I have been going through over the years. I told her to watch the documentary Under Our Skin.
I also told her as my husband and I were on our way to my appt. in Mt. Kisco, NY, we were looking at all of the trees and saying how beautiful the colors were and how many ticks are in there, LOL I can't help it now, that's all I think about when I see alot of foresty trees.
It's funny that you said, how I don't look at you guys as a bunch of whackos, I think you all are so very intelligent and after the research that I have done,YOU GUYS HAVE THE RIGHT INFORMATION!!!!!!!! and everyone needs to realize that lyme disease does exist and can cause so many problems.
I say all the time to my family, " I don't care who thinks I am nuts, I am going to be fully aware of what's going on with me, so I can protect my family as well."
I will continue to spread the word whether or not this is lyme I have. No one needs to suffer.
You guys are my friends and I am so appreciative for all of you!
Thank You from the bottom of my heart!
Pam
I've never taken doxy but I was on mino for 2 years, and I think the two are similar.
With doxy, mino and certain other abx, you are more sensitive to the sun. So if you're having Indian Summer like we are here in the Midwest, you'll want to be careful of how much exposure you get to the rays.
Also, old doxy can degrade into toxic substances, so if you stay on it for awhile make sure you use up your old pills and get news ones as necessary.
Sometimes I start to Herx or react to a med the day I start, other times it's a week to 10 days. I think it varies from person to person and you may not know until later, though hindsight, if/when you started to Herx.
Good luck. I think about a month after starting abx I started to feel more confident about my diagnosis and more confident in my LLMD.
With doxy, mino and certain other abx, you are more sensitive to the sun. So if you're having Indian Summer like we are here in the Midwest, you'll want to be careful of how much exposure you get to the rays.
Also, old doxy can degrade into toxic substances, so if you stay on it for awhile make sure you use up your old pills and get news ones as necessary.
Sometimes I start to Herx or react to a med the day I start, other times it's a week to 10 days. I think it varies from person to person and you may not know until later, though hindsight, if/when you started to Herx.
Good luck. I think about a month after starting abx I started to feel more confident about my diagnosis and more confident in my LLMD.
Pam
Do read up on doxy side effects and esp how to avoid them, like stomach upset, because it's harder to go there and then try to stop the side effects than to avoid them in the first place.
Not trying to alarm you, but it's what I would do, given the number of comments I've seen over time from people having problems with doxy.
Keep us posted. Best -- J
Do read up on doxy side effects and esp how to avoid them, like stomach upset, because it's harder to go there and then try to stop the side effects than to avoid them in the first place.
Not trying to alarm you, but it's what I would do, given the number of comments I've seen over time from people having problems with doxy.
Keep us posted. Best -- J
I took my first dose of doxy at 1pm today and by 4:30, I was sleeping until 6pm. It is now 10:30pm and I am ready to go to bed, soo very tired. I have had some stomach pain and pain in my calf muscles but I am assuming its a seperate issue because its too soon to start having problems with only one dose of 100mg. My next dose is 200mg. He prescribed 300mg daily for 1 month.
My whole family is on board with this. I think everyone is thinking I am going to get as bad as it was on the documentary. I told them that so far, I havent really been dx'd yet, and if I do have noticed problems and bad reactions that its actually a good sign because then we are on the right track.
I am so glad that I went yesterday,,, just extremely exhausted!!
Does herxing begin that soon, or does it usually take a couple of days? Also, can sudden sleepiness be part of the drug side effect?
I suppose I should just look it up> LOL
You guys are the best, thanks.
Pam
My whole family is on board with this. I think everyone is thinking I am going to get as bad as it was on the documentary. I told them that so far, I havent really been dx'd yet, and if I do have noticed problems and bad reactions that its actually a good sign because then we are on the right track.
I am so glad that I went yesterday,,, just extremely exhausted!!
Does herxing begin that soon, or does it usually take a couple of days? Also, can sudden sleepiness be part of the drug side effect?
I suppose I should just look it up> LOL
You guys are the best, thanks.
Pam
My Herxes were never as bad as being sick in the first place -- but ewford's right, everyone is different.
YEA!!!!!!!!!!!!!!!!!!!!!!!
It's nice to be believed , isn't it? I hope you find some answers and you grt some closure. Now to attack this thing if you are positive. Just remember the Herx is the bacteria dying off and releasing cytokines back into the blood stream, For some it's bad, for others it isn't much. For me, I don't remember it kicking my a$$, so I can't be an accurate judge. Maybe someone else can respond.
It's nice to be believed , isn't it? I hope you find some answers and you grt some closure. Now to attack this thing if you are positive. Just remember the Herx is the bacteria dying off and releasing cytokines back into the blood stream, For some it's bad, for others it isn't much. For me, I don't remember it kicking my a$$, so I can't be an accurate judge. Maybe someone else can respond.
Home run! That's great, that you felt cared for. As it should be.
I haven't taken doxy, but others here have and can comment. I just went to drugs [dot] com and looked it up, and there is some good, plain English advice there about how to take it. I'd follow the directions very closely, like drinking a lot of water etc., because it can upset the stomach in some people. Apparently it can also affect birth control pills' effectiveness. Important things to know.
I don't know whether those who have had stomach trouble with doxy followed the directions completely, but besides being a good idea generally, I think it's esp. imp. with doxy.
Sending you all good wishes --
I haven't taken doxy, but others here have and can comment. I just went to drugs [dot] com and looked it up, and there is some good, plain English advice there about how to take it. I'd follow the directions very closely, like drinking a lot of water etc., because it can upset the stomach in some people. Apparently it can also affect birth control pills' effectiveness. Important things to know.
I don't know whether those who have had stomach trouble with doxy followed the directions completely, but besides being a good idea generally, I think it's esp. imp. with doxy.
Sending you all good wishes --
Ok,,,,, Dr. C is such a great guy!! I felt like I was in good hands. He went over my paperwork, and asked a lot of questions... I finally had someone listen to me and "get it!!" He said that alot of my symptoms are found in lyme disease. He said that my night sweats could be from the co'infection Babesia. He took some blood and wanted to get me started on Doxy as a "trial" run, to see what type of effect it has on me, he is also reccommended probiotics. I will be back to see him in 4 weeks, and my blood results should come back in about 10 days.
It's funny how, eventhough I did not get a Yes, its Lyme, or No , its not lyme,,,, I feel like it was one of the best Dr's appts. I have had in my whole life.
I feel validated that I was heard and not brushed off!!!!!!!!! He wants to help me, not send me on my way in tears.
I guess we'll see what the outcome is in 4 weeks.
Is there anything I should know about the Doxy, and what type of effects it could cause? I am wondering because I want to make sure that I am prepared as far as my kids are concerned. I am not going to worry or think the worst, but I am just making sure of what to expect if there is anything,,, you know what I mean,
Thanks again everyone for everything!!!! Very much appreciated!!!!! :)
Pam
It's funny how, eventhough I did not get a Yes, its Lyme, or No , its not lyme,,,, I feel like it was one of the best Dr's appts. I have had in my whole life.
I feel validated that I was heard and not brushed off!!!!!!!!! He wants to help me, not send me on my way in tears.
I guess we'll see what the outcome is in 4 weeks.
Is there anything I should know about the Doxy, and what type of effects it could cause? I am wondering because I want to make sure that I am prepared as far as my kids are concerned. I am not going to worry or think the worst, but I am just making sure of what to expect if there is anything,,, you know what I mean,
Thanks again everyone for everything!!!! Very much appreciated!!!!! :)
Pam
Hi Pam,
So sorry to hear about your bad week and so sorry for the loss of your grandfather.
I wish you the best of luck at your appointment. Hopefully you will get some answers.
Keep us updated and feel better.
Carrie
So sorry to hear about your bad week and so sorry for the loss of your grandfather.
I wish you the best of luck at your appointment. Hopefully you will get some answers.
Keep us updated and feel better.
Carrie
I am still going.... my mother in law just called me and she said that I absolutely better not cancel, I have waited long enough!! She said that my father in law is doing good, and the nurses at the hospital had to give him a "chill pill" because he was a bit cranky with them, (swearing and telling them to leave him alone) LOL He is a trip!! Thank God, he seems to be back to himself, so now at least I will not feel sooooooo guilty going tomorrow.
This is it guys!!!!!! I can't believe the time has come for this appt!! Once I get an answer one way or another I will update ASAP!
Love and hugs,
Pam
This is it guys!!!!!! I can't believe the time has come for this appt!! Once I get an answer one way or another I will update ASAP!
Love and hugs,
Pam
Condolences to you and your whole family. Bad things happen in threes, don't they say, and your family has had its three for a long long time.
DO go to the doc -- everyone needs you to be well. Take care --
DO go to the doc -- everyone needs you to be well. Take care --
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Jackie, Wonko, Ree are great sources of knowlege and info and are indespensible to this forum. I only hope that you get a diag and get well. Please.....if it IS Lymes......PLEASE spread the word about your case and let your friends know on the other boards so you in turn can return the favor and help someone else. Maybe they have been missdiagnosed and need some "pushing" to get help themselves. That's all I ask.