I went back to my LLMD this June since I felt I had no choice. I was ok one month - then I felt so sick, that i couldnt function well.
My LLMD's PA gave me Ketek, Sulphur, Mepron, and Plaquenol. I herxed so bad for 16 days that I wound up in the hospital emergency room thinking I was poisoned and had sepsis. I was further rushed to the emergency room 1 other time because I had stiffness in my neck and chest muscles, ribs, etc. and I felt like I couldnt breathe. The doctors said I was getting 100% air concentration in my lungs, but I felt like I couldnt take a deep breathe. I had no signs of rash etc.
We stated pulsing the meds including the Ketek, and herx started again, and I became suicidal. I pulsed again, and started with just sulphur and then added Ketek ( no Mepron yet or plaquenil) and herxed again. My whole body started twiching, felt like I couldnt breathe again, (I also have it in my throat box and ridge of my nose) not to mention my face as well. I twitched all over my body that I couldnt sleep at all. I would sleep 1 hr. and then wake up like from a bad nightmare gasping for air. Its been 5 weeks with no sleep. Finally I took a Xanax because I was having anxiety attacks every day, and runnign to the emergency room. My swelling was so bad and toxin level
Ketek is a VERY strong drug, and not everyone can tolerate it. You may be able to tolerate it later as sprirchete level is lowered, but it may not be the best drug to start early in treatment with. I have had Lyme for 16 years and was high functioning for 6 years, but screwed myself up by not going to the doctors earlier- and not taking enough doxy to keep my disease under control.
People can yell at me- but my worse fear of relapsing happened, and it hit me like a tanker. I did not feel any of the symptoms that I came out when I herxed. I had some problems during the year, insomnia, waking up gagging sometimes, but thought it was normal stress related items. It all came out as Lyme when I started meds. Its frightening that some normal every day symptoms could add up and make you feel ok one day and the next like you will die. All my symptoms are different from when I stated last time, so not sure if I had been re-infected. I never had anxiety last time, couldnt concentrate and see things correctly and had pressure in my head, and numerous other symptoms, but never had it in my chest muscles, and certainly didnt think it would go into my throat!
I am so distraught right now. Had to close my business down for an indefinite time. My husband is taking good care of me- supportive, as I cry every day. Even had one of hose Lyme rages. ASked him to help me kill myself because I can not see living life like this anymore. I havent left the house in over a month, afraid to see my nephew who has autism and wants to come over and play with me. I do not want him to see me shaking, and crying.
I stopped the Ketek, and my doctor supplemented with BiaxinXL 2 tabs once daily, with the Mepron and plaquenil again and now I take Xanax, but fearful I may be allergic to it since I have been itchy and woke up with some hives on my chest this morning.
On a good note, I am not shaking so much since being off Ketek for 4 days. I just started my Biaxin yesterday, and actually feel more human again although I know I will start herxing again.
They considered putting me back on doxy since did so well on it in the past. I had it IV for about 4 or so, and then thats when I turned the corner on this thing. Then I had to switch LLMD since the drive to DR. B was 2 hrs. After the doxy- he had put me on a sulphur, Larium and Mepron combo for about 3 moths or so and then put me back on doxy for maintanence orally.
I am annoyed at myself, but I see on line that the standard treatment for Babesia is Mepron and Azithromax. I do not understand why they put me on Sulpur, Lariam and Mepron back then. My current test for Babs fish assay came back negative, so I worried that maybe I had kicked it. I havent had a Babs attack. I shake and sweat, but not sure if it is my CNS symptoms. I was able to tell babs attack in the past. Would get flush, feel weak, and then feel like blood pressure was dropping. Then it would pass after an hr or so.
I am so angry. Doesnt anyone ever get over late Lyme Disease or is it just that they have and dont come on the posts?
Why cant they tell us if we have Lyme out of our systoms anymore? Isnt anyone working on a test like this? This is destroying my life. I lost a baby 8 years ago in my 5th month of pregnancy, and they biopsied the placenta and found spirochetes. My husband and I have no children. WE didnt try again because I started a business and then lost my partner due to 911. Fortunately I have made enough money to not have to work while I try to recover.
I would love to take Doxy again, but just found out that it is just bacteriostatic, and doesnt kill anything- just stops it from reproducing. So, I may stabilize with it, but then I'll still have Lyme in system and maybe it will rear its ugly head years from again and truly kill me when I am older and have less strength. I am 40 now and living with this 16 years.
I know many of you will criticize me for not going to see my doctor for a long time. He says 4 years, i thought it was 2 or so.
But, constantly seeing doctors for 16 years verey month, and then being misdiagnosed 16 years ago for 2 years, my faith in the medical profession waned, and I was tired of reading horror stories of people in wheelchairs, months in bed with IVs, and still not well.
Right now my family is upset that I am dealing with a PA at my LLMD. I am also upset that she handed me so much drug at one time, especially 2 that i had never had before. Maybe I should be grateful that I herxed so bad and knocked the hell of it in one month, but that herx was like nothing I ever experienced, and I honestly thought I would die. It also made me so scared of this disease and for the peopel I love, that I want to move once I feel up to it. My husbands job is here, and it may be difficult. Just last week a tick was found on my nephew who has autism and may not be able to express his feelings if he gets sick. A lyme doctor who treats him for autism as well says no phroylactic for him. We believe the tick was not on him long enough to contrate anything. It came off easily, and the head was not in yet. It was just stuck slightly. He probably picked it the same day at school in the playground.
he is checked daily for ticks at bath time.
The last week also, I checked my husband who went in the woods and he had one on his back as well, same thing, not engorged yet, just digging in, a nymph. Came off easily, and no blood. He wont take antibiotics though although I begged him.
Sorry for such a long post. Time for Mepron.
Donna
I am sorry to hear about your relapse. But it does happen.
My LLMD feels that you don't have to kill yourself with herxing to get better. I am on a VERY low dose of Mino. I started out taking 50mg a WEEK. I am now up to 200mg a week. BTW -- I herxed like crazy on the 50 a week. But it wasn't so bad that I couldn't tolerate it. BTW -- I am getting alot better.
I also know someone else who is on low doses of mepron, zithromax and plaquenol and improving greatly. We see the same LLMD.
Lyme is not the same for everyone. You may be a person who cannot tolerate higher doses, and may have to start out with a smaller dose and work your way up.
You probably allready know this, but gasping for air is a symptom of babesia.
And I am sorry about your husband, that must be very difficult. I would just keep trying, and when symptoms do appear just keep pointing them out to him. (Plant seeds)
Good Luck,
Lisi
[This message has been edited by Lisianthus (edited 18 July 2005).]
Hope you like it here, because we'd be glad to have you!
Treepatrol's links http://flash.lymenet.org/ubb/Forum5/HTML/000569.html
Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html
Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm
Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html
The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html
More info: http://www.ILADS.org/
Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html
Lyme Disease State Info http://www.lymeinfo.net/support.html
Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html
Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html
Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html
Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html
http://www.anapsid.org/lyme/matthewgoss/index.html
------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
Want to echo the post above. Everyone is different and the only way to find out how a person will react to drugs is to try them. Maybe it should have been started off more slowly, but even with doses like yours, I never had such a bad herx. Think it depends on the germ load. Which we can't measure.
The doc office needs to know about your reactions, so they can adjust. They can't predict in advance, and don't know unless you tell them. Oldtimers sometimes call these shots on their own, but not sure I want to recommend this.
The treatments for babesia vary. This disease can be hard to beat, just like lyme. The typical drugs are mepron + zithromax (or other macrolide) or clindamycin + quinine. Quinine has lots of side effects, can be nasty for some people. But there are other combinations, including lariam, malarone, artemisinin. So it is not as standard as you might think. No perfect combination, in other words. The combinations are used because the parasite tends to become resistant when only one drug used.
Lots of people see PAs and NPs. This is because the lyme docs are overwhelmed with patients and there is only so many they can see in a day.
Keep your chin up. It does look like some people are never cured, and their goal is remission or at least symptoms under control. You got functional before, you can do it again.
I would ask your help with a mortgage, but can't afford anything now except a refrigerator box, thanks to lyme!
[This message has been edited by lou (edited 18 July 2005).]
I am feeling MUCH better now, but unable to tolerate mepron/zith. not on meds again due to severe herx on the mepron/zith. Will try again after I deal with the endometriosis and a move to another state.
YOu can get back to "remission", You did it once and that is a very good sign that you will do it again.
Trails
Welcome to the board! We're here to help and support, not criticize.
Could you ask your doc or PA to start out a bit more slowly on the meds? What were (are) your doses?
Where is Mahopat? Sorry to say I never heard of it.
I have found it's hard for family members to understand the enomnity of your suffering.
janet
[This message has been edited by janet thomas (edited 18 July 2005).]
Please don't beat yourself up. What we know about treating lyme seems to have progressed alot in the six years I have had lyme.
You did the best you could at the time and it worked for a while. Gradually you will find the right drug combo and start to improve. It takes a lot of time to get well.
All you can do it the best you can do.
Take care,
Mel
quote:
Originally posted by mtgebrkr:
I recently relapsed from CNS lyme after 6 years. I had it under control, or so I thought. I never felt 100%, but felt well enough to work 12 hrs a day, and runa successful business. I was taking doxy since that seems ed to be the only drug that really hepled me when I finally learned after 6 yrs after being diagnosed that I had babesia as well and why I was not responding so well prior to that.
Unfortunately I did not take the high levels of doxy required to keep the bug under control and for a couple of years, I would miss doses and just take 200mg etc.instead of taking 100mg 3X daily. I never visited my doctor for Lyme. I never knew that I could have taken 200 mg twice daily. I was also fearful that they would not give me antibiotics anymore. I was getting it on my own with refills from prior prescriptions.I went back to my LLMD this June since I felt I had no choice. I was ok one month - then I felt so sick, that i couldnt function well.
My LLMD's PA gave me Ketek, Sulphur, Mepron, and Plaquenol. I herxed so bad for 16 days that I wound up in the hospital emergency room thinking I was poisoned and had sepsis. I was further rushed to the emergency room 1 other time because I had stiffness in my neck and chest muscles, ribs, etc. and I felt like I couldnt breathe. The doctors said I was getting 100% air concentration in my lungs, but I felt like I couldnt take a deep breathe. I had no signs of rash etc.We stated pulsing the meds including the Ketek, and herx started again, and I became suicidal. I pulsed again, and started with just sulphur and then added Ketek ( no Mepron yet or plaquenil) and herxed again. My whole body started twiching, felt like I couldnt breathe again, (I also have it in my throat box and ridge of my nose) not to mention my face as well. I twitched all over my body that I couldnt sleep at all. I would sleep 1 hr. and then wake up like from a bad nightmare gasping for air. Its been 5 weeks with no sleep. Finally I took a Xanax because I was having anxiety attacks every day, and runnign to the emergency room. My swelling was so bad and toxin level
Ketek is a VERY strong drug, and not everyone can tolerate it. You may be able to tolerate it later as sprirchete level is lowered, but it may not be the best drug to start early in treatment with. I have had Lyme for 16 years and was high functioning for 6 years, but screwed myself up by not going to the doctors earlier- and not taking enough doxy to keep my disease under control.
People can yell at me- but my worse fear of relapsing happened, and it hit me like a tanker. I did not feel any of the symptoms that I came out when I herxed. I had some problems during the year, insomnia, waking up gagging sometimes, but thought it was normal stress related items. It all came out as Lyme when I started meds. Its frightening that some normal every day symptoms could add up and make you feel ok one day and the next like you will die. All my symptoms are different from when I stated last time, so not sure if I had been re-infected. I never had anxiety last time, couldnt concentrate and see things correctly and had pressure in my head, and numerous other symptoms, but never had it in my chest muscles, and certainly didnt think it would go into my throat!
I am so distraught right now. Had to close my business down for an indefinite time. My husband is taking good care of me- supportive, as I cry every day. Even had one of hose Lyme rages. ASked him to help me kill myself because I can not see living life like this anymore. I havent left the house in over a month, afraid to see my nephew who has autism and wants to come over and play with me. I do not want him to see me shaking, and crying.
I stopped the Ketek, and my doctor supplemented with BiaxinXL 2 tabs once daily, with the Mepron and plaquenil again and now I take Xanax, but fearful I may be allergic to it since I have been itchy and woke up with some hives on my chest this morning.
On a good note, I am not shaking so much since being off Ketek for 4 days. I just started my Biaxin yesterday, and actually feel more human again although I know I will start herxing again.They considered putting me back on doxy since did so well on it in the past. I had it IV for about 4 or so, and then thats when I turned the corner on this thing. Then I had to switch LLMD since the drive to DR. B was 2 hrs. After the doxy- he had put me on a sulphur, Larium and Mepron combo for about 3 moths or so and then put me back on doxy for maintanence orally.
I am annoyed at myself, but I see on line that the standard treatment for Babesia is Mepron and Azithromax. I do not understand why they put me on Sulpur, Lariam and Mepron back then. My current test for Babs fish assay came back negative, so I worried that maybe I had kicked it. I havent had a Babs attack. I shake and sweat, but not sure if it is my CNS symptoms. I was able to tell babs attack in the past. Would get flush, feel weak, and then feel like blood pressure was dropping. Then it would pass after an hr or so.
I am so angry. Doesnt anyone ever get over late Lyme Disease or is it just that they have and dont come on the posts?
Why cant they tell us if we have Lyme out of our systoms anymore? Isnt anyone working on a test like this? This is destroying my life. I lost a baby 8 years ago in my 5th month of pregnancy, and they biopsied the placenta and found spirochetes. My husband and I have no children. WE didnt try again because I started a business and then lost my partner due to 911. Fortunately I have made enough money to not have to work while I try to recover.
I would love to take Doxy again, but just found out that it is just bacteriostatic, and doesnt kill anything- just stops it from reproducing. So, I may stabilize with it, but then I'll still have Lyme in system and maybe it will rear its ugly head years from again and truly kill me when I am older and have less strength. I am 40 now and living with this 16 years.
I know many of you will criticize me for not going to see my doctor for a long time. He says 4 years, i thought it was 2 or so.
But, constantly seeing doctors for 16 years verey month, and then being misdiagnosed 16 years ago for 2 years, my faith in the medical profession waned, and I was tired of reading horror stories of people in wheelchairs, months in bed with IVs, and still not well.Right now my family is upset that I am dealing with a PA at my LLMD. I am also upset that she handed me so much drug at one time, especially 2 that i had never had before. Maybe I should be grateful that I herxed so bad and knocked the hell of it in one month, but that herx was like nothing I ever experienced, and I honestly thought I would die. It also made me so scared of this disease and for the peopel I love, that I want to move once I feel up to it. My husbands job is here, and it may be difficult. Just last week a tick was found on my nephew who has autism and may not be able to express his feelings if he gets sick. A lyme doctor who treats him for autism as well says no phroylactic for him. We believe the tick was not on him long enough to contrate anything. It came off easily, and the head was not in yet. It was just stuck slightly. He probably picked it the same day at school in the playground.
he is checked daily for ticks at bath time.The last week also, I checked my husband who went in the woods and he had one on his back as well, same thing, not engorged yet, just digging in, a nymph. Came off easily, and no blood. He wont take antibiotics though although I begged him.
Sorry for such a long post. Time for Mepron.
Donna
Best;
Donna
I moved from Put Valley and had an ILADS LLMD in Westchester. I don't know if you had seen him or are interested, but if so, please email me.
I had lived on a wooded property, never saw a rash or a tick but it's clear I was bitten somewhere around there. I never even walked on the grass since I was so aware of Lyme in the area, and am so angry that I was bitten with the precautions I took.
Please hang in there, we all understand.
God Bless.
Linda