Hi Sarah
I should probably be posting on the lyme board but I am here. I really feel as though the cortef is helping with the exhaustion. I am still tired but don't seem to have that total physical exhaustion feeling. Anyway I went to my doctor on Thursday and we decided to go back to the amox/probenecid plus the ketek. On Friday my throat became extremely sore-more than normal and I just felt awful. Same on Saturday. So I have had the sore throat since I started abx last November. I would say I have it 90 percent of the time sometimes real bad. I am not really sure what to do about it. My doctor mentioned going on IV abx if the sore throat didn't go away by next visit but I have had it for almost 7 months. I feel no better and seem to be having one continous herx. I did just have the WB done again just because I wanted to. I know it really doesn't mean anything.

I just am worried that I don't seem to be improving and wondering if I should just stop the abx for a while. I mean before I started them I was at least having some good days and now there are very few. What is you opinion on this whole sore throat thing. Doctor says it is the bacteria interacting with the abx but how can it go on for so long? What are your thoughts? I hope you are having some good days! Thanks for your input.
Kim

Hi Sarah
I should probably be posting on the lyme board but I am here. I really feel as though the cortef is helping with the exhaustion. I am still tired but don't seem to have that total physical exhaustion feeling. Anyway I went to my doctor on Thursday and we decided to go back to the amox/probenecid plus the ketek. On Friday my throat became extremely sore-more than normal and I just felt awful. Same on Saturday. So I have had the sore throat since I started abx last November. I would say I have it 90 percent of the time sometimes real bad. I am not really sure what to do about it. My doctor mentioned going on IV abx if the sore throat didn't go away by next visit but I have had it for almost 7 months. I feel no better and seem to be having one continous herx. I did just have the WB done again just because I wanted to. I know it really doesn't mean anything.

I just am worried that I don't seem to be improving and wondering if I should just stop the abx for a while. I mean before I started them I was at least having some good days and now there are very few. What is you opinion on this whole sore throat thing. Doctor says it is the bacteria interacting with the abx but how can it go on for so long? What are your thoughts? I hope you are having some good days! Thanks for your input.
Kim
Kim, Hi, sorry it took me so long to get back to you. I'm sorry that you are feeling bad. I think that you should post this ? on the Lyme board, so that other people can reply. I get a sore throat sometimes before I start feeling really bad, or if I try to do too much and exhaust myself. But I don't have it all the time. That must suck so bad. Maybe the doc needs to change your ABX's, everyone is different and reacts differently to ABX's. It sounds like a herx, but normallythere is a waxing and waning, not a constant herx. could it be the Ketek that is causing it? Maybe you could switch to flagyl or plaquenil for a while and see if that helps. I did feel better before I started taking the ABX's and felt worse when on them. I took 2 months off and felt even worse than I had when on them. But if you feel like you need a "Holiday" discuss this with your doc. Some LLMD's agree to this some do not.
I am glad that you feel the Cortef is helping, the preg. is helping me too. And I am back on my ABX's for 2 weeks now, I did have the soar throat but only for 2 days. I hate this darn disease there are to many variables and it is difficult when nobody responds the same or experiences the same things. All I can say is trial and error, keep trying until you find the mix that works for you. I really like the plaq. to me it helps alot. It has done wonders for my son. Hope you are having a good day!! Sarah:wave:

Thanks Sarah
I just had such a bad weekend I needed someone to talk with that has this disease too. When I first started abx I was on biaxin/plaquenill and amox/probenecid. I had a bad herx after about 5 days which consisted of sore throat, aches, bad flu feeling. Two weeks later he switched me to ketek along with amox/probenecid and I got the same symptoms again only the sore throat stayed. My husband is a pharmacist and he really thinks the sore throat is from the ketek. It is just so hard for me to believe that I could have it for almost 7 months! I will say that it is worse certain times so I don't know.The doctor has never mentioned taking a break from the abx. I definately feel worse since starting them last November. I almost wish I could feel like I did before them and that was really bad. I think I am headed for IV next month. I see my doctor on June 14th. He wanted to discuss my case with another doctor. I keep thinking something else is wrong with me but I guess that is normal. I just had my blood sent off to Igenex again but I am not sure if he put me down for co-infection testing also. Thanks for the reply and I will just keep pushing on. Maybe that is why I am so tired all the time too because of the constant sore throat. I will post over on the Lyme board too. Keep in touch.
Kim

Thanks Sarah
I just had such a bad weekend I needed someone to talk with that has this disease too. When I first started abx I was on biaxin/plaquenill and amox/probenecid. I had a bad herx after about 5 days which consisted of sore throat, aches, bad flu feeling. Two weeks later he switched me to ketek along with amox/probenecid and I got the same symptoms again only the sore throat stayed. My husband is a pharmacist and he really thinks the sore throat is from the ketek. It is just so hard for me to believe that I could have it for almost 7 months! I will say that it is worse certain times so I don't know.The doctor has never mentioned taking a break from the abx. I definately feel worse since starting them last November. I almost wish I could feel like I did before them and that was really bad. I think I am headed for IV next month. I see my doctor on June 14th. He wanted to discuss my case with another doctor. I keep thinking something else is wrong with me but I guess that is normal. I just had my blood sent off to Igenex again but I am not sure if he put me down for co-infection testing also. Thanks for the reply and I will just keep pushing on. Maybe that is why I am so tired all the time too because of the constant sore throat. I will post over on the Lyme board too. Keep in touch.
Kim
Kim, why did your doc switched you from the Biaxin & plaq. after only 2 weeks. You may have already told me this before, I'm just having LYME BRAIN!! sometimes I rmen=mber everything so well and then other times I can't think, the uncertainity of how you will feel day to day is so awful:dizzy:
Something has definately got to be adjusted for you thoug, you can't continually have this sore throat. It can't possibly be good for your throat to feel like that all the time. Other than it possibly being the ABX's has the doc given you any indication of what it could be, not that we don't already have enough going on! Do you think it is the AI and not the LD? It must be very helpful having your husband a pharicist. At least he can tell you before you start taking something what the side-effects are and wether it is worth taking or not. What is his take on the long term prescribing of ABX's by LLMD's? Take care of yourself and keep me informed. My husband gets sore throats all the time, He took ABX's for 3 weeks and had the sore throat the entire time, he gave up on the ABX's, because he felt so bad, don't do this!! I am curious as to what you come up with. Sarah:wave:

Hey Sarah
The doctor switched me off the biaxin because I was having the bad metal taste 24/7 and couldn't stand it. I called and asked if there was something else I could take instead and he said ketek. I know it is bad for the liver but I knew the risk and what signs to look for if trouble was coming. It was at my request the meds were switched.
He told me the sore throat is from the abx killing the bacteria. I asked him again last visit. I agree that I don't think I should have had it this long either. It can't be good for my body to endure this on top of everything else. I do 100 percent believe it is caused from the abx because it began 5 days after I started taking them and I hadn't had a sore throat in about 5 years. I still think I have a co-infection though. My first symptoms were high fever 103-chills, worse headache ever, backache, muscle pain and the following day joint pain. I don't want to go on IV if I have a co-infection because then it won't make a difference. It is nice having a pharmacist in the family. I always ask him his opinion on what I am taking. He does agree with the cortef. He knows what it has been like for me the past 2 years and said if it would help then I should try it. Anyway, I woke up this morning with the bad sore throat again...plus now I am sweating and having the chills much more than before. I don't know what is going on with me. I will give the doctor a week and then give him a call. I will post over on the lyme board since this has more to do with that than cortef. Thanks again as I really appreciate hearing your opinions on all this stuff.
Kim

:eek: Hey Sarah
The doctor switched me off the biaxin because I was having the bad metal taste 24/7 and couldn't stand it. I called and asked if there was something else I could take instead and he said ketek. I know it is bad for the liver but I knew the risk and what signs to look for if trouble was coming. It was at my request the meds were switched.
He told me the sore throat is from the abx killing the bacteria. I asked him again last visit. I agree that I don't think I should have had it this long either. It can't be good for my body to endure this on top of everything else. I do 100 percent believe it is caused from the abx because it began 5 days after I started taking them and I hadn't had a sore throat in about 5 years. I still think I have a co-infection though. My first symptoms were high fever 103-chills, worse headache ever, backache, muscle pain and the following day joint pain. I don't want to go on IV if I have a co-infection because then it won't make a difference. It is nice having a pharmacist in the family. I always ask him his opinion on what I am taking. He does agree with the cortef. He knows what it has been like for me the past 2 years and said if it would help then I should try it. Anyway, I woke up this morning with the bad sore throat again...plus now I am sweating and having the chills much more than before. I don't know what is going on with me. I will give the doctor a week and then give him a call. I will post over on the lyme board since this has more to do with that than cortef. Thanks again as I really appreciate hearing your opinions on all this stuff.
Kim

Kim, I understand about the metal taste. I just deal with it. My husband was complaining about it while he was on Biaxin too. My son doesn't notice it at all. The Biaxin & plaq. has done such wonders for my son, I haven't heard any success stories as good as his, he was infected for 6 years and was pretty sick. don't know if it's the Biaxin or the plaq. which has made such a big improvement. Like I said before I was put on the plaq. for a year by Rheumi and went into remission for 2 years, just by taking the plaq. But while in remission my adrenals were getting worse. But that is probably because I owned a bus. with 2 cops who insisted that we live off coffee, doughnuts, pizza and Dr. Pepper. We always ate at our shop, and that was our main diet, plus we owned a screen printing bus. and were subjecting ourselves to toxic fumes constantly. And working 12-15 hours a day during peak season. This would be exhausting to anyone.
Have you been tested for Babesia by Igenex? You have the main symptoms, I would check into that. And there are different strains for different regions of the country, so make sure you test for the right one. this was the mistake my doc. made he tested using Quest, which only tests one strain. I need to be tested for the WA-1 because I am from the West Coast and possibly picked it up when I got the tick infestation in 89 in WA ST. They did test me for lonestari, which is a Texas co-infection. We have to be responsible for our own testing to make sure that we are tested for the correct co-infections, we should be getting 1/2 off on our bills for all the research and work we do for ourselves!! I responded to your post here, so that other people could respond on the Lyme board without just reading my suggestions. I'll bet you that Ticker mentions Babesia too. The more input the better!!:wave: Sarah

Sarah
I don't think I was tested for any co-infections. I was going to ask the doctor about it last visit and somehow I just completely forgot about it. He started talking about IV if I didn't improve. I even asked my husband to remind me if I forget to mention it and he forgot too. I am pretty sure that is my problem. I have babesia and that is why I am not getting better. I am upset with myself for not asking about it. Now I have to wait another month and then get tested for it. I know he wrote down WB on the test sheet but I don't think anything else was circled. I think I could have handled the biaxin if I knew I wasn't going to be on it for months. I couldn't taste food and it just made my mouth sore inside.
I agree that we should all get reduced prices on all this testing. Of course when I first went I had no idea about co-infections but the more I read about them, the more I think I have one. Hopefully someone on the Lyme board will have some advice. I know Ticker usually has some good thoughts. My sore throat is a little better this afternoon. Once I take the Ketek though it will flare up again. Talk to you soon and thanks for your thoughts on all this.
Kim

Kim, I did the same thing you did with the co-infection test. I had been tested for co-infections by a east coast lab, but don't know exactly what region they tested for. I sent for the Igenex kit to take with me to my appt. to have my doc test for WA-1 babesia, and not only forgot the kit, but completely forgot to ask. Duh, so now I am waiting for next appt. when I intially went to LLMD I didn't even put 2 and 2 together that I could have been infected with Babesia in 89 in WA St. I have had the babesia symptoms ever since then. Then I got infected again in Texas in 97, and that's all we discussed, but by researching so much, I pretty much know that I got infected first in 89. Definatley ask next time, and I will to!! If I can remeber, LOL! Keep in Touch, Sarah

Sarah
I guess no one over on the Lyme board has any input as to my sore throat. I don't seem to have much luck getting responses from my questions. I think Ticker is about the only one who ever has an answer. Oh well...I have to go in to work for a couple hours today. I was feeling much more energetic last night but then again it always is that way. After dinner I start to feel better. I know that is sometimes how AF is but gee why can't I feel like that during the day??? Does that happen to you too?
Kim

Sarah
I guess no one over on the Lyme board has any input as to my sore throat. I don't seem to have much luck getting responses from my questions. I think Ticker is about the only one who ever has an answer. Oh well...I have to go in to work for a couple hours today. I was feeling much more energetic last night but then again it always is that way. After dinner I start to feel better. I know that is sometimes how AF is but gee why can't I feel like that during the day??? Does that happen to you too?
Kim

Kim, sorry you didn't get any replies about your throat. I don't know!!:dizzy: As for the daily physical wellbeing. I get up and it takes me an hour or so to get moving, I just veg. Then I am feeling a little better, but bathing, hair washing, blow drying, make-up exhausts me again. I feel better around 1 after lunch and that is when I try to do everything before my husband gets home at 5:15, by 4:00 I am usually feeling very bad and want to go to sleep, but can't. Then after dinner I feel better until about 8, then from 8 to 10 feel fatigued again. this is usually pretty much how every day goes. It sucks!:mad: I think this is the AI pattern! Sarah

Sarah
Oh yeah, I have the strange pattern too. I usually feel good mid morning until early afternoon, then I crash especially if I had to go in to work. I always feel better after dinner for a little while and then crash again. It is almost like ok it is night time so now you can feel better. I had read that is how AI usually is. My throat is so sore again today and my eyes burn like crazy. No matter how much of the drops I put in them, nothing helps. I only get the dry eyes when my throat is super sore. I told the doctor about it last time and he said it is the bacteria. I just know they hurt!! Oh well, I will just have to believe the doctor when he says it is the dying off causing the sore throat. You probably read on the other thread about the story in our local paper about Babesiosis and how it is rare in NH. I had to laugh because I am sure it is rare because no one is ever tested for it. Sad but true...Hope you are doing ok today. It is beautiful in NH..sunny and warm. Talk to you soon.
Kim

Sarah
Oh yeah, I have the strange pattern too. I usually feel good mid morning until early afternoon, then I crash especially if I had to go in to work. I always feel better after dinner for a little while and then crash again. It is almost like ok it is night time so now you can feel better. I had read that is how AI usually is. My throat is so sore again today and my eyes burn like crazy. No matter how much of the drops I put in them, nothing helps. I only get the dry eyes when my throat is super sore. I told the doctor about it last time and he said it is the bacteria. I just know they hurt!! Oh well, I will just have to believe the doctor when he says it is the dying off causing the sore throat. You probably read on the other thread about the story in our local paper about Babesiosis and how it is rare in NH. I had to laugh because I am sure it is rare because no one is ever tested for it. Sad but true...Hope you are doing ok today. It is beautiful in NH..sunny and warm. Talk to you soon.
Kim
Kim, I read your post on the Lyme board before this one, and basically said the same thing about it being rare, that is probably the case. I'm sorry that your throat is hurting so bad, that is just so peculiar to me,:confused: this happens to me when I am going into a crisis (flare), it's like you are in a constant flare, I feel so bad for you! My son has problems with his eyes watering, do you have that or just the dry eyes? Have you been tested for sjogren's syndrome? Lyme causes so many problems, you never know:dizzy: Sarah

Hi Sarah
I never have been tested for Sjogren's. I have read up on it and the only similarity I have is the dry eyes. My eyes only hurt and burn when my throat is really sore. Not just when it is somewhat sore. I have been told is is a sign of aging too?? I can go days when they don't bother me at all so it comes and goes. I did read dry eyes is a symptom of Lyme too so I don't know. Maybe next month I will ask the doctor again. I did find some eye gel that I used last night and worked very well. It stayed in longer than the drops. They don't water, just get dry and burn. I think someone on the other board posted about dry eyes at one time. I know the treatment for Sjogren's is Plaquenil. They are fine so far this morning but when I get to work I will put some gel in them just to keep them moist. I was reading up on Ehrlichiosis and I started off with many of those symptoms too. In fact most of them so now I am thinking I should be tested for that too. Feeling pretty good this morning. I do think the cortef is starting to kick in for me. I hope you have a nice day!
Kim