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Recent Diagnosis Chronic Rocky Mountain Spotted Fever
An_188088 posted:
I was just referred to this discussion area and perhaps this may be of some support to myself and others. It was not unitl about 11 years later that I was finally diagnosed with the correct problem - Rocky Mountain Spotted Fever an Typhus fever. I recently had Herxheier reaction from my antibiotics, and it really is difficult trying to manage this disease. My doctor states this illness may stick with me for a while since I was giagnosed so late? is there anyone else out there with the same problem as I, and if so, how are you doing?
15 Replies |Watch This Discussion | Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverI was just referred to this discussion area and perhaps this may be of some support to myself and others. It was not unitl about 11 years later that I was finally diagnosed with the correct problem - Rocky Mountain Spotted Fever an Typhus fever. I recently had Herxheier reaction from my antibiotics, and it really is difficult trying to manage this disease. My doctor states this illness may stick with me for a while since I was giagnosed so late? is there anyone else out there with the same problem as I, and if so, how are you doing?
susiemargaret responded:
hello, 22246 --
while you are waiting for responses from others, let me add a little info for readers who may not be familiar with the things you've mentioned.
rocky mountain spotted fever (RMSF) is a bacterial infection transmitted to people by ticks (tickborne typhus fever is a synonym for it). it is treated with antibiotics., usually doxycycline. if not treated properly, it can lead to serious problems with the blood vessels, the heart, the lungs, the brain, the spinal cord, the liver, and the kidneys. the webMD info on it is at http://www.webmd.com/skin-problems-and-treatments/rocky-mountain-spotted-fever ; a list of other resources on RMSF is on the same page.
at the beginning of treatment, the patient may experience a jarish-herxheimer reaction. this is associated with the antibiotic treatment but is not an allergic reaction; rather, it is due to the effect of large amts of toxins being released into the body when the antibiotics destroy the malign bacteria. its symptoms are fever, chills, headache, stiffness, aching and pain, and the aggravation of any rashes, cuts, or sores. this reaction can be very serious, and altho in some cases it lasts for only a few days, it can last for weeks or months.
22246, i'm so sorry you are having to cope with this horrible RMSF and its treatment complications. please keep us posted on how you are doing.
-- susie margaret
while you are waiting for responses from others, let me add a little info for readers who may not be familiar with the things you've mentioned.
rocky mountain spotted fever (RMSF) is a bacterial infection transmitted to people by ticks (tickborne typhus fever is a synonym for it). it is treated with antibiotics., usually doxycycline. if not treated properly, it can lead to serious problems with the blood vessels, the heart, the lungs, the brain, the spinal cord, the liver, and the kidneys. the webMD info on it is at http://www.webmd.com/skin-problems-and-treatments/rocky-mountain-spotted-fever ; a list of other resources on RMSF is on the same page.
at the beginning of treatment, the patient may experience a jarish-herxheimer reaction. this is associated with the antibiotic treatment but is not an allergic reaction; rather, it is due to the effect of large amts of toxins being released into the body when the antibiotics destroy the malign bacteria. its symptoms are fever, chills, headache, stiffness, aching and pain, and the aggravation of any rashes, cuts, or sores. this reaction can be very serious, and altho in some cases it lasts for only a few days, it can last for weeks or months.
22246, i'm so sorry you are having to cope with this horrible RMSF and its treatment complications. please keep us posted on how you are doing.
-- susie margaret
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted Feverhello, 22246 --<br /> <br />while you are waiting for responses from others, let me add a little info for readers who may not be familiar with the things you've mentioned.<br /> <br /><b>rocky mountain spotted fever</b> (RMSF) is a bacterial infection transmitted to people by ticks (<b>tickborne</b> <b>typhus fever</b> is a synonym for it). it is treated with antibiotics., usually doxycycline. if not treated properly, it can lead to serious problems with the blood vessels, the heart, the lungs, the brain, the spinal cord, the liver, and the kidneys. the webMD info on it is at <a href="http://www.webmd.com/skin-problems-and-treatments/rocky-mountain-spotted-fever">http://www.webmd.com/skin-problems-and-treatments/rocky-mountain-spotted-fever</a> ; a list of other resources on RMSF is on the same page.<br /> <br />at the beginning of treatment, the patient may experience a <b>jarish-herxheimer reaction</b>. this is associated with the antibiotic treatment but is not an allergic reaction; rather, it is due to the effect of large amts of toxins being released into the body when the antibiotics destroy the malign bacteria. its symptoms are fever, chills, headache, stiffness, aching and pain, and the aggravation of any rashes, cuts, or sores. this reaction can be very serious, and altho in some cases it lasts for only a few days, it can last for weeks or months.<br /> <br />22246, i'm so sorry you are having to cope with this horrible RMSF and its treatment complications. please keep us posted on how you are doing.<br /> <br />-- susie margaret
Rockymountainliz responded:
Hello,
So sorry about this horrible disease you are having to battle with.This is a little late to right back, I just now saw your post today.
I was diagnosed with Encyphilitis Secondary to Rocky Moutain Fever in April of 1997. I waited to long to go to the Dr., just thought I had a really bad stomach virus.
By that time the Dr.'s could not figue out what was wrong with me. I had such a high fever causing my brain to become inflamed---"-encyphilitis".
I do not remember anything, I went into a coma, ICU,etc. Was given last rights and would not make it through the night. I had been in icu about a month maybe. They took all the tubes, i.v.'s, etc. off. My mom made them leave on the breathing tube.Next day I woke up. I have to go by what everyone has told me. It is blank to me.
I then went to the Neurolgical part of the hospital. I could not talk, could not see well, could not understand anything. Anyway, I was going to try and make this as short as possible but kind of hard.
After that I had alot of different therapys. Long story short I am in a wheelchair, cognitive parts of my brain, urological nerve damage.
I have good days and bad days.
The part I don't understand about you how could you still be alive? I have never heard of "chronic" RMS.
It has been 8 months when you wrote this. If you get this tell me more about your "story". Let me know how u are doing.
So sorry about this horrible disease you are having to battle with.This is a little late to right back, I just now saw your post today.
I was diagnosed with Encyphilitis Secondary to Rocky Moutain Fever in April of 1997. I waited to long to go to the Dr., just thought I had a really bad stomach virus.
By that time the Dr.'s could not figue out what was wrong with me. I had such a high fever causing my brain to become inflamed---"-encyphilitis".
I do not remember anything, I went into a coma, ICU,etc. Was given last rights and would not make it through the night. I had been in icu about a month maybe. They took all the tubes, i.v.'s, etc. off. My mom made them leave on the breathing tube.Next day I woke up. I have to go by what everyone has told me. It is blank to me.
I then went to the Neurolgical part of the hospital. I could not talk, could not see well, could not understand anything. Anyway, I was going to try and make this as short as possible but kind of hard.
After that I had alot of different therapys. Long story short I am in a wheelchair, cognitive parts of my brain, urological nerve damage.
I have good days and bad days.
The part I don't understand about you how could you still be alive? I have never heard of "chronic" RMS.
It has been 8 months when you wrote this. If you get this tell me more about your "story". Let me know how u are doing.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted Fever<i>Hello,</i><br /><i>So sorry about this horrible disease you are having to battle with.This is a little late to right back, I just now saw your post today.</i><br /><i>I was diagnosed with Encyphilitis Secondary to Rocky Moutain Fever in April of 1997. I waited to long to go to the Dr., just thought I had a really bad stomach virus.</i><br /><i>By that time the Dr.'s could not figue out what was wrong with me. I had such a high fever causing my brain to become inflamed---"-encyphilitis".</i><br /><i>I do not remember anything, I went into a coma, ICU,etc. Was given last rights and would not make it through the night. I had been in icu about a month maybe. They took all the tubes, i.v.'s, etc. off. My mom made them leave on the breathing tube.Next day I woke up. I have to go by what everyone has told me. It is blank to me.</i><br /><i>I then went to the Neurolgical part of the hospital. I could not talk, could not see well, could not understand anything. Anyway, I was going to try and make this as short as possible but kind of hard.</i><br /><i>After that I had alot of different therapys. Long story short I am in a wheelchair, cognitive parts of my brain, urological nerve damage.</i><br /><i>I have good days and bad days.</i><br /><i>The part I don't understand about you how could you still be alive? I have never heard of "chronic" RMS. </i><br /><i>It has been 8 months when you wrote this. If you get this tell me more about your "story". Let me know how u are doing.</i>
OldNoob responded:
have had it over ten years. it has left me with many nuralogical issues hearing loss, ringing in the ears, copnstant headache , numbness in the face and hands, etc. i have tried the anti-biotics buti have not noticed any help from them. everyso oftem i have a emunie response that islike having it for the first time , i get quite ill and takesmonths to get better, but it contines to leave me with the nurological issues. i feel it is only going to get worse. best trhing you can do, is not overwork yourself or get too tired , andbe careful not to catch a flu or cold, theimmune response will start the process all over again.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted Fever<i>have had it over ten years. it has left me with many nuralogical issues hearing loss, ringing in the ears, copnstant headache , numbness in the face and hands, etc. i have tried the anti-biotics buti have not noticed any help from them. everyso oftem i have a emunie response that islike having it for the first time , i get quite ill and takesmonths to get better, but it contines to leave me with the nurological issues. i feel it is only going to get worse. best trhing you can do, is not overwork yourself or get too tired , andbe careful not to catch a flu or cold, theimmune response will start the process all over again.</i>
escoffee responded:
I had a case that didn't get caught until 4 months after infection. I've wound up on disability partly from the nerve damage it caused. It also got my kidneys. I didn't have any symptoms, but even after 10 years I still have rash from this. The only way I stay even halfway well is the fact that the doctor put me on antibiotics on a daily basis about 2 years ago. I quit taking them, I'm really sick. He told me things would never get much better. Hard to deal with. How do you deal with it. I get so tired of being sick and tired. I have grandchildren who only know me as being sick all the time. If anybody has any suggestions on how to live with this, I really need them. Thanks.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverI had a case that didn't get caught until 4 months after infection. I've wound up on disability partly from the nerve damage it caused. It also got my kidneys. I didn't have any symptoms, but even after 10 years I still have rash from this. The only way I stay even halfway well is the fact that the doctor put me on antibiotics on a daily basis about 2 years ago. I quit taking them, I'm really sick. He told me things would never get much better. Hard to deal with. How do you deal with it. I get so tired of being sick and tired. I have grandchildren who only know me as being sick all the time. If anybody has any suggestions on how to live with this, I really need them. Thanks.
Such a bummer to read your post. I have the same issues, same cause. Is there any hope out there?
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverSuch a bummer to read your post. I have the same issues, same cause. Is there any hope out there?
susiemargaret replied to escoffee's response:
hello, E --
rocky mtn spotted fever is indeed a horrible disease.
before the advent of antibiotics that could treat it, up to 30% of those afflicted with it died. that proportion fell to about 5% by the mid-1950s and has steadily declined since the 1980s. by 2008, the fatality rate was 0.5%.
i am afraid those statistics are the only good news i could find. i send caring and healing thoughts to you; i am so sorry you have to cope with this vicious condition.
-- susie margaret
rocky mtn spotted fever is indeed a horrible disease.
before the advent of antibiotics that could treat it, up to 30% of those afflicted with it died. that proportion fell to about 5% by the mid-1950s and has steadily declined since the 1980s. by 2008, the fatality rate was 0.5%.
i am afraid those statistics are the only good news i could find. i send caring and healing thoughts to you; i am so sorry you have to cope with this vicious condition.
-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted Feverhello, E --<br /> <br />rocky mtn spotted fever is indeed a horrible disease.<br /> <br />before the advent of antibiotics that could treat it, up to 30% of those afflicted with it died. that proportion fell to about 5% by the mid-1950s and has steadily declined since the 1980s. by 2008, the fatality rate was 0.5%.<br /> <br />i am afraid those statistics are the only good news i could find. i send caring and healing thoughts to you; i am so sorry you have to cope with this vicious condition.<br /> <br />-- susie margaret
escoffee replied to susiemargaret's response:
I'm learning to deal with it. No choice. Looks like I haven't yet got to the point other people have, so I guess I should be grateful. Prayers and caring and healing thoughts are very greatly appreciated for all of us.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverI'm learning to deal with it. No choice. Looks like I haven't yet got to the point other people have, so I guess I should be grateful. Prayers and caring and healing thoughts are very greatly appreciated for all of us.
toniriddle1 responded:
just noticed this post from 2 years ago, im still battling this rmsf. i went almost a year before they even found out what was wrong with me. then it was crazy from there on out. i was having chest pains,nerve problems, fainting, and there wasnt a place on my body that didnt have some sort of pain. after treatment its been 5 -6 years an im still having major pain and problems, my children cant even remember what it was like to live with a unsick mother. im scared to death of the woods and animals that come near me, thinking they may have a tick on them. i dont allow my children to fish anymore, swim at the lake, because of the fear. i still have night sweats, and anxity, and joint and muscle pain. im disabled now, unable to work, or even play with my children. this is so hard for me. i hate to hear about anyone that went through this, cause no one truly understands it unless they go through it. almost 2 years of my life are gone, that was at my sickest. and the rest has been a struggle jus to be normal. my prayers are with you. and lets hope that they get you fixed alot sooner than they did me.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted Fever<i>just noticed this post from 2 years ago, im still battling this rmsf. i went almost a year before they even found out what was wrong with me. then it was crazy from there on out. i was having chest pains,nerve problems, fainting, and there wasnt a place on my body that didnt have some sort of pain. after treatment its been 5 -6 years an im still having major pain and problems, my children cant even remember what it was like to live with a unsick mother. im scared to death of the woods and animals that come near me, thinking they may have a tick on them. i dont allow my children to fish anymore, swim at the lake, because of the fear. i still have night sweats, and anxity, and joint and muscle pain. im disabled now, unable to work, or even play with my children. this is so hard for me. i hate to hear about anyone that went through this, cause no one truly understands it unless they go through it. almost 2 years of my life are gone, that was at my sickest. and the rest has been a struggle jus to be normal. my prayers are with you. and lets hope that they get you fixed alot sooner than they did me.</i>
escoffee replied to toniriddle1's response:
My grandchildren have never known me not being sick, except for my two oldest, and the younger of the two was so young that she probably doesn't remember. I had periods when I was so sick that I really don't remember stuff that went on. I feel like I've lost pieces of myself. My doctor has me on doxycline (was tetracycline until they quit making it) on a daily basis, and finally I'm starting to feel better after 10 years. He says it will never be but so good, and I had a really bad spell when I ran out of tetracycline early this year. Haven't got much to offer except my prayers and the knowledge that you aren't alone. Ask your doctor about taking 100 mg of doxycline daily. It keeps me level, even if I do have some bad days.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverMy grandchildren have never known me not being sick, except for my two oldest, and the younger of the two was so young that she probably doesn't remember. I had periods when I was so sick that I really don't remember stuff that went on. I feel like I've lost pieces of myself. My doctor has me on doxycline (was tetracycline until they quit making it) on a daily basis, and finally I'm starting to feel better after 10 years. He says it will never be but so good, and I had a really bad spell when I ran out of tetracycline early this year. Haven't got much to offer except my prayers and the knowledge that you aren't alone. Ask your doctor about taking 100 mg of doxycline daily. It keeps me level, even if I do have some bad days.
hopetomakeit replied to toniriddle1's response:
News from the end. I'm 32 and my body has said "enough". The good news is when it hit my spine and took out my legs SOME of the pain went away. to those that dont know, rmsf can kill. Pleas spray your kids! And to my frinds in rmsf, I love you, your NOT insane, and dont give up. You may forget alot, but dont forget to smile! trust me at its worse you can still find one. When in dought hug your kids. Passing the torch, keep happy, its not so bad!
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverNews from the end. I'm 32 and my body has said "enough". The good news is when it hit my spine and took out my legs SOME of the pain went away. to those that dont know, rmsf can kill. Pleas spray your kids! And to my frinds in rmsf, I love you, your NOT insane, and dont give up. You may forget alot, but dont forget to smile! trust me at its worse you can still find one. When in dought hug your kids. Passing the torch, keep happy, its not so bad!
escoffee replied to hopetomakeit's response:
My prayers and sympathy go out to you. Your positive attitude is inspiring. This group makes me realize I'm not alone.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverMy prayers and sympathy go out to you. Your positive attitude is inspiring. This group makes me realize I'm not alone.
avonlady responded:
I was diagnosed with Rocky Mountain Spotted Fever a month or so ago..I was given antibotics..I still have spots on my ankle..They burn a lot..I am going to go back to my dr and see if he will send me to a specialist.. I hope he can do something to help me..My foot also feels like it is asleep.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverI was diagnosed with Rocky Mountain Spotted Fever a month or so ago..I was given antibotics..I still have spots on my ankle..They burn a lot..I am going to go back to my dr and see if he will send me to a specialist.. I hope he can do something to help me..My foot also feels like it is asleep.
If your regular doctor is good, stick with him. He probably knows or is willing to find out what to do to help you the best. My primary care did a lot more for me than any specialist he send me to.
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverIf your regular doctor is good, stick with him. He probably knows or is willing to find out what to do to help you the best. My primary care did a lot more for me than any specialist he send me to.
janz04401 responded:
I have chronic pain from untreated LYME disease & also turned into other co-infections and I was treated for rocky mountain spotted fever. I tested for lyme about 7yrs before the Doctor's would treat me They kept telling me it was a fault positive. I started to lose my vision due to acute case of uvitis/iritis (which can definatetly be caused by lyme disease. I was very, very sick and went untreated for years. I am now on pain management (which I had to beg, fight tooth & nail to get!!. It has not been fun as I am sure you know. Do you have Lyme disease?? It sounds like u might, have you been tested for lyme??
Report This| Share this:Recent Diagnosis Chronic Rocky Mountain Spotted FeverI have chronic pain from untreated LYME disease & also turned into other co-infections and I was treated for rocky mountain spotted fever. I tested for lyme about 7yrs before the Doctor's would treat me They kept telling me it was a fault positive. I started to lose my vision due to acute case of uvitis/iritis (which can definatetly be caused by lyme disease. I was very, very sick and went untreated for years. I am now on pain management (which I had to beg, fight tooth & nail to get!!. It has not been fun as I am sure you know. Do you have Lyme disease?? It sounds like u might, have you been tested for lyme??
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