Aa
RMSF and alllergic to Doxy
I cannot find a forum for rocky mountain spotted feber so i am posting here. I hope someone can help me.
I was diagnosed with RMSF on October 8th. I began doxy at 100mg ONCE a day for 2 weeks, which i now know is a subclinical dose. On day 6 i got severe diffuse itching, so i took my last dose on day 7.
I made another trip to the mayo and the infectious disease doc said possible herxheimer reaction, but to restart the doxy at the clinical dose of 100mg 2x per day. On my 4th pill, i got a rash and the diffuse severe itching again. I saw an allergist today who said i am definitely allergic to the doxy. He said he would have done a challenge test to determine it, but i had already done it for him by restarting the doxy and reacting so quickly.
My last pill was yesterday morning and im still itching Benadryl barely offers any relief.
But what am i going to do about the RMSF since im allergic to doxy? Will it resolve on its own? The allergist said there was one other AB but it has a big black box warning for risk of death. That doesnt sound appealing.
Help
Sometimes a person who is allergic to a medication they need can have desensitization performed by an allergy doctor. I know several people who have had that done. I don't know if that would work for you or not--- so questions to ask your doctor.
"chloramphenicol " ----- is that the other drug your doctor mentioned? I'd never heard of it and, indeed, the literature does say it has a risk of fatal outcome.
That's too bad that you're allergic to the one drug that's going to help you. But do ask about the desensitization treatments,
But if your infectious disease doctor will only give you sub-par doses for far too little a time----- it may be moot! You could try to find a doctor that will treat it for longer (more efficacious) an ILADS doctor would be the best ---- then the de-sensitization would make more sense.
"chloramphenicol " ----- is that the other drug your doctor mentioned? I'd never heard of it and, indeed, the literature does say it has a risk of fatal outcome.
That's too bad that you're allergic to the one drug that's going to help you. But do ask about the desensitization treatments,
But if your infectious disease doctor will only give you sub-par doses for far too little a time----- it may be moot! You could try to find a doctor that will treat it for longer (more efficacious) an ILADS doctor would be the best ---- then the de-sensitization would make more sense.
Thanks for the reply. My primary doc is the one who gave me the sub clinical dose. The infectious disease doc wanted me to try again at the correct dose for a few reasons, i needed the correct dosage, to rule out herxheimer reaction, which in turn would perform a challenge test to see if i really was allergic to the doxy.
The allergist, just yesterday, did talk about desensitization and the chloramphenicol. He said in the future, if i had to have doxy, he could desensitize me to it. He also thought that maybe because i had had a total of 12 pills, and i was not acutely ill, that the rmsf would resolve on its own. Im doubtful of that.
At this point, im at the mercy of these doctors, i will say that this allergist has been the BEST doctor i have seen to date, including all the doctors at the infamous Mayo clinic.
So, i guess my next question is, do i wait ten days and have the rmsf test done again to see if i am still showing titers? And if i am, then i need to get the allergist to desensitize me so that i can actually take a correct course of the doxy and knock this rmsf out??
Thanks
The allergist, just yesterday, did talk about desensitization and the chloramphenicol. He said in the future, if i had to have doxy, he could desensitize me to it. He also thought that maybe because i had had a total of 12 pills, and i was not acutely ill, that the rmsf would resolve on its own. Im doubtful of that.
At this point, im at the mercy of these doctors, i will say that this allergist has been the BEST doctor i have seen to date, including all the doctors at the infamous Mayo clinic.
So, i guess my next question is, do i wait ten days and have the rmsf test done again to see if i am still showing titers? And if i am, then i need to get the allergist to desensitize me so that i can actually take a correct course of the doxy and knock this rmsf out??
Thanks
You're aware, I'm sure, that I can't give you medical advice, right? (grin)
But I wouldn't trust any titer given any time no matter what lab is giving it. Titers have a funny way of bouncing around depending on way too many reasons for me to remember. So retaking the test/titer may or may not prove anything.
And since you said 'titer' I'm going to guess that a Western Blot wasn't performed on you?
Was your test performed at Igenex or from a CDC sanctioned lab, as Mayo uses. (You hinted that you already knew that Mayo was not friendly towards Lyme, right?)
BTW---- Lyme specialists suggest 300-600 mg doxy per day (usually 400mg) for several months or until symptoms resolve and then for 3 months more. So anything less is 'sub-par' in the eyes of most good llmds.
Best of luck.
But I wouldn't trust any titer given any time no matter what lab is giving it. Titers have a funny way of bouncing around depending on way too many reasons for me to remember. So retaking the test/titer may or may not prove anything.
And since you said 'titer' I'm going to guess that a Western Blot wasn't performed on you?
Was your test performed at Igenex or from a CDC sanctioned lab, as Mayo uses. (You hinted that you already knew that Mayo was not friendly towards Lyme, right?)
BTW---- Lyme specialists suggest 300-600 mg doxy per day (usually 400mg) for several months or until symptoms resolve and then for 3 months more. So anything less is 'sub-par' in the eyes of most good llmds.
Best of luck.
I have no idea if a western blot was performed or not on the RMSF, but it was on the lymes which was negative for all bands, if im reading the report right.
I guess its all a moot point anyway since i cant take any Doxy.
I dont know what i was hoping for by posting here, but yes, i do know you cant give me any advice, opinions based on experience, on the other hand, are perfectly acceptable and reasonable!
I guess really, although i know its not likely, im just afraid this darn thing is going to kill me. And at rhisnpoint i just dont know what tondo. So any opinions about what other people would do if it were them, i would love to read them.
I guess its all a moot point anyway since i cant take any Doxy.
I dont know what i was hoping for by posting here, but yes, i do know you cant give me any advice, opinions based on experience, on the other hand, are perfectly acceptable and reasonable!
I guess really, although i know its not likely, im just afraid this darn thing is going to kill me. And at rhisnpoint i just dont know what tondo. So any opinions about what other people would do if it were them, i would love to read them.
" i do know you cant give me any advice, opinions based on experience, on the other hand, are perfectly acceptable and reasonable! "
That's good that you understand that. Member's on forums have to be very careful about not giving medical advice---- it's even against most forum rules.
But sometimes we skirt dangerously close to 'giving medical advice'. I try not to. But I do rely on science/pubmed etc articles to try to figure out some things that personal opinions/testimonials may skirt over.
Personal opinions, by their very nature, are subjective not objective. But I read them all anyway---- many helpful tips to found in them.
In that vein---- are you 100% positive that the rash was caused by doxy?
Read this article:
http://www.cdc.gov/rmsf/symptoms/
[...] most people with RMSF (90%) have some type of rash during the course of illness[...]
A close friend has it and, for reasons I won't go into, hasn't treated it and is still alive and doing fairly well 2 years after dx. (That's just one person but..,.) He will have to address it eventually, and I'm urging him to do that.
I don't know what to make of this (below) from the link I gave above:
"RMSF is a serious illness that can be fatal in the first eight days of symptoms if not treated correctly, even in previously healthy people."
It seems to imply that if you don't die in the first week you'll live. ?? I haven't a clue. But----- then I'd say you and my friend are past that deadline. :) And hundreds of others.
If you want to know my personal opinion---- and if I were you----- I'd make sure that the rash was a true allergic reaction or if it was the rash that RMSF gives to most people. That's it. :)
That's good that you understand that. Member's on forums have to be very careful about not giving medical advice---- it's even against most forum rules.
But sometimes we skirt dangerously close to 'giving medical advice'. I try not to. But I do rely on science/pubmed etc articles to try to figure out some things that personal opinions/testimonials may skirt over.
Personal opinions, by their very nature, are subjective not objective. But I read them all anyway---- many helpful tips to found in them.
In that vein---- are you 100% positive that the rash was caused by doxy?
Read this article:
http://www.cdc.gov/rmsf/symptoms/
[...] most people with RMSF (90%) have some type of rash during the course of illness[...]
A close friend has it and, for reasons I won't go into, hasn't treated it and is still alive and doing fairly well 2 years after dx. (That's just one person but..,.) He will have to address it eventually, and I'm urging him to do that.
I don't know what to make of this (below) from the link I gave above:
"RMSF is a serious illness that can be fatal in the first eight days of symptoms if not treated correctly, even in previously healthy people."
It seems to imply that if you don't die in the first week you'll live. ?? I haven't a clue. But----- then I'd say you and my friend are past that deadline. :) And hundreds of others.
If you want to know my personal opinion---- and if I were you----- I'd make sure that the rash was a true allergic reaction or if it was the rash that RMSF gives to most people. That's it. :)
Given that it's been a month since you were first diagnosed with RMSF, your docs may view you as being past the critical early days when things can go south very quickly. Maybe that's why they are relatively relaxed about the situation.
Here are clips from the CDC (Centers for Disease Control), the US govt arm in Atlanta, on the topic of RMSF, particularly including detailed commentary on the situation, including specific mentions of timing and at what points after infection things are most critical:
--------------------------
"Appropriate antibiotic treatment should be started immediately when there is a suspicion of Rocky Mountain Spotted Fever on the basis of clinical and epidemiological findings.
"Treatment should not be delayed until laboratory confirmation is obtained. In fact, failure to respond to a tetracycline argues against a diagnosis of Rocky Mountain Spotted Fever.
"Severely ill patients may require longer periods before their fever resolves, especially if they have experienced damage to multiple organ systems. ...
"Doxycycline (a tetracycline) (for adults at 100 milligrams every 12 hours, or for children under 45 kg (99 lb) at 4 mg/kg of body weight per day in two divided doses) is the drug of choice for patients with Rocky Mountain Spotted Fever.[4]
"Treatment should be continued for at least three days after the fever subsides, and until there is unequivocal evidence of clinical improvement. This will be generally for a minimum time of five to ten days. Severe or complicated outbreaks may require longer treatment courses.
"Doxycycline/ tetracycline is also the preferred drug for patients with ehrlichiosis, another tick-transmitted infection with signs and symptoms that may resemble those of Rocky Mountain Spotted Fever.
"Chloramphenicol is an alternative drug that can be used to treat Rocky Mountain spotted fever. However, this drug may be associated with a wide range of side effects, and careful monitoring of blood levels can be required.
[---following is the CDC position as posted on the same wiki website above:---]
"RMSF is a serious illness that can be fatal in the ***first eight days of symptoms*** if not treated correctly, even in previously healthy people.
[[Missi, you are past the first 8 days, right? so you might be in the clear from the worst outcomes]]
"The progression of the disease varies greatly. Patients who are treated early may recover quickly on outpatient medication, while those who experience a more severe course may require intravenous antibiotics, prolonged hospitalization or intensive care.
"Rash
"While most people with RMSF (90%) have some type of rash during the course of illness, some people do not develop the rash until late in the disease process, after treatment should have already begun.
"Approximately 10% of RMSF patients never develop a rash. It is important for physicians to consider RMSF if other signs and symptoms support a diagnosis, even if a rash is not present.
"A classic case of RMSF involves a rash that first appears 2-5 days after the onset of fever as small, flat, pink, non-itchy spots (macules) on the wrists, forearms, and ankles and spreads to include the trunk and sometimes the palms and soles. Often the rash varies from this description and people who fail to develop a rash, or develop an atypical rash, are at increased risk of being misdiagnosed.
"The red to purple, spotted (petechial) rash of RMSF is usually not seen until the sixth day or later after onset of symptoms and occurs in 35-60% of patients with the infection. This is a sign of progression to severe disease, and every attempt should be made to begin treatment before petechiae [tiny, pinpoint bruises just under the skin] develop.
"Long-term Health Problems
"Patients who had a particularly severe infection requiring prolonged hospitalization may have long-term health problems caused by this disease.
"Rickettsia rickettsii infects the endothelial cells that line the blood vessels. The damage that occurs in the blood vessels results in a disease process called a 'vasculitis', and bleeding or clotting in the brain or other vital organs may occur. Loss of fluid from damaged vessels can result in loss of circulation to the extremities and damaged fingers, toes or even limbs may ultimately need to be amputated.
"Patients who suffer this kind of severe vasculitis in the first two weeks of illness may also be left with permanent long-term health problems such as profound neurological deficits, or damage to internal organs. Those who do not have this kind of vascular damage in the initial stages of the disease typically recover fully within several days to months.
[Again, you are past the first two weeks, so maybe safe from vascular [[blood vessel]] damage.]
"Physician Diagnosis
"There are several aspects of RMSF that make it challenging for healthcare providers to diagnose and treat. The symptoms of RMSF vary from patient to patient and can easily resemble other, more common diseases. Treatment for this disease is most effective at preventing death if started in the first five days of symptoms. Diagnostic tests for this disease, especially tests based on the detection of antibodies, will frequently appear negative in the first 7-10 days of illness.
"Due to the complexities of this disease and the limitations of currently available diagnostic tests, there is no test available at this time that can provide a conclusive result in time to make important decisions about treatment. ...
"The diagnosis of RMSF must be made based on clinical signs and symptoms, and can later be confirmed using specialized confirmatory laboratory tests. Treatment should never be delayed pending the receipt of laboratory test results, or be withheld on the basis of an initial negative finding for R. rickettsii."
===========================================
If you start going downhill, I'd call the doc and tell him you are going to the ER unless you hear back from him pretty quickly.
Let us know how you do, okay? Sending you all good wishes -- you sound very strong, considering how upsetting this situation must be.
Here are clips from the CDC (Centers for Disease Control), the US govt arm in Atlanta, on the topic of RMSF, particularly including detailed commentary on the situation, including specific mentions of timing and at what points after infection things are most critical:
--------------------------
"Appropriate antibiotic treatment should be started immediately when there is a suspicion of Rocky Mountain Spotted Fever on the basis of clinical and epidemiological findings.
"Treatment should not be delayed until laboratory confirmation is obtained. In fact, failure to respond to a tetracycline argues against a diagnosis of Rocky Mountain Spotted Fever.
"Severely ill patients may require longer periods before their fever resolves, especially if they have experienced damage to multiple organ systems. ...
"Doxycycline (a tetracycline) (for adults at 100 milligrams every 12 hours, or for children under 45 kg (99 lb) at 4 mg/kg of body weight per day in two divided doses) is the drug of choice for patients with Rocky Mountain Spotted Fever.[4]
"Treatment should be continued for at least three days after the fever subsides, and until there is unequivocal evidence of clinical improvement. This will be generally for a minimum time of five to ten days. Severe or complicated outbreaks may require longer treatment courses.
"Doxycycline/ tetracycline is also the preferred drug for patients with ehrlichiosis, another tick-transmitted infection with signs and symptoms that may resemble those of Rocky Mountain Spotted Fever.
"Chloramphenicol is an alternative drug that can be used to treat Rocky Mountain spotted fever. However, this drug may be associated with a wide range of side effects, and careful monitoring of blood levels can be required.
[---following is the CDC position as posted on the same wiki website above:---]
"RMSF is a serious illness that can be fatal in the ***first eight days of symptoms*** if not treated correctly, even in previously healthy people.
[[Missi, you are past the first 8 days, right? so you might be in the clear from the worst outcomes]]
"The progression of the disease varies greatly. Patients who are treated early may recover quickly on outpatient medication, while those who experience a more severe course may require intravenous antibiotics, prolonged hospitalization or intensive care.
"Rash
"While most people with RMSF (90%) have some type of rash during the course of illness, some people do not develop the rash until late in the disease process, after treatment should have already begun.
"Approximately 10% of RMSF patients never develop a rash. It is important for physicians to consider RMSF if other signs and symptoms support a diagnosis, even if a rash is not present.
"A classic case of RMSF involves a rash that first appears 2-5 days after the onset of fever as small, flat, pink, non-itchy spots (macules) on the wrists, forearms, and ankles and spreads to include the trunk and sometimes the palms and soles. Often the rash varies from this description and people who fail to develop a rash, or develop an atypical rash, are at increased risk of being misdiagnosed.
"The red to purple, spotted (petechial) rash of RMSF is usually not seen until the sixth day or later after onset of symptoms and occurs in 35-60% of patients with the infection. This is a sign of progression to severe disease, and every attempt should be made to begin treatment before petechiae [tiny, pinpoint bruises just under the skin] develop.
"Long-term Health Problems
"Patients who had a particularly severe infection requiring prolonged hospitalization may have long-term health problems caused by this disease.
"Rickettsia rickettsii infects the endothelial cells that line the blood vessels. The damage that occurs in the blood vessels results in a disease process called a 'vasculitis', and bleeding or clotting in the brain or other vital organs may occur. Loss of fluid from damaged vessels can result in loss of circulation to the extremities and damaged fingers, toes or even limbs may ultimately need to be amputated.
"Patients who suffer this kind of severe vasculitis in the first two weeks of illness may also be left with permanent long-term health problems such as profound neurological deficits, or damage to internal organs. Those who do not have this kind of vascular damage in the initial stages of the disease typically recover fully within several days to months.
[Again, you are past the first two weeks, so maybe safe from vascular [[blood vessel]] damage.]
"Physician Diagnosis
"There are several aspects of RMSF that make it challenging for healthcare providers to diagnose and treat. The symptoms of RMSF vary from patient to patient and can easily resemble other, more common diseases. Treatment for this disease is most effective at preventing death if started in the first five days of symptoms. Diagnostic tests for this disease, especially tests based on the detection of antibodies, will frequently appear negative in the first 7-10 days of illness.
"Due to the complexities of this disease and the limitations of currently available diagnostic tests, there is no test available at this time that can provide a conclusive result in time to make important decisions about treatment. ...
"The diagnosis of RMSF must be made based on clinical signs and symptoms, and can later be confirmed using specialized confirmatory laboratory tests. Treatment should never be delayed pending the receipt of laboratory test results, or be withheld on the basis of an initial negative finding for R. rickettsii."
===========================================
If you start going downhill, I'd call the doc and tell him you are going to the ER unless you hear back from him pretty quickly.
Let us know how you do, okay? Sending you all good wishes -- you sound very strong, considering how upsetting this situation must be.
Im sorry if i mislead anyone and didnt make myself very clear, so i will telll it from beginning to now.
I removed a tick in april of this year and didnt think much of it because of the area in which i live. A few days later i developed a pretty good maculopapular rash on the insides of both of my thighs, and a petechial rash on my feet. I had no idea what it was and ignored it. I then began running a low grade fever, having muscle and joint aches and severe fatigue.
I went to the doctor and he thought i just had a mild infection and gave me a zpack. I reacted badly to the zpack and had to get a cortisone shot.
A few weeks layer i then developed a diffuse rash on both arms and my entire legs. This rash was just red blotches that never went away. In August i went back to my doctor, he was out so i saw the PA. She took one look at me and said that looks like rocky mountain spotted fever. I didnt remember being bitten by the tick and told her i didnt think i had been bitten by a tick. She gave me a shot of Rocephin and a medrol pack. I woke up the next morning with severe hives all over my body. I went to urgent care, it was a saturday, and they told me to start the medrol pack immediately. The hives were so bad they lasted 2 days even with the medrol pack.
When my husband got home, i told him what the PA said and he reminded me of the tick bite back in the spring. I left a few days later for the Mayo for a separate issue and forgot all about the possible RMSF
I went back to my primary care doctor in October and asked for a tickbourne panel. It came back positive for RMSF at 1:64. Meaning i was either actively infected or recently infected(i think).
So, he prescribed 100mg doxy 1x per day. On day 6 and 7 I had severe all over body itching with a sandpaper rash across my chest. As soon as i stopped the doxy the rash went away. Im positive the rash was from the doxy.
I made another trip to the mayo, saw the infectious disease doctor, she said it was either herxheimer reaction or an allergic reaction and to start the doxy again at the 100mg 2x a day and if i started the severe itching soon after starting, it is an allergic reaction and to stop the doxy, she also felt that having had 7 pills should have been enough to clear up the RMSF since i had apparently contracted it back in April but didnt know it until October.
When i got home i went to an allergist because i have now reacted to several antibiotics that i have been able to take in the past. He said i was definitely allergic to the Doxy, the Rocephin, all quinolones and possibly the zpack. I showed him all the pictures of all the rashes and the hives, as i had taken pictures to document everything.
He said that he would have done a challenge test on me to determine if i was truly allergic, but i had already done that by restarting the doxy and having the severe itching, etc after just a few doses.
He said that if i were acute, he would put me in the hospital and desensitize me, but he says im past that stage and he thinks the amount of Doxy i had should be sufficient. He said the chloramphenical comes with a big black box warning and is very risky.
I obviously disagree that the amount of doxy i had was sufficient.
So, that leaves me in the conundrum of what to do now. Ive had the RMSF since April, cannot take Doxy, and have had no changes in my condition. The maculopapular rash comes and goes, i get random patches of petechial rashes on my arms and feet, the blotchy red patches on my arms comes and goes, the fever comes and goes and is followed by chills, and i still have muscle and joint pain and severe fatigue. All of this tels me that the infection is still ongoing, even though i was originally infected several months ago.
So, as i type this, i think i may have answered my own question, i think i may need to go back to that allergist and ask him to desensitize me to the Doxy so that i can take a proper course. Because what if i get RMSF again, and im one of the 25% that gets accutely ill, i guess it would kill me with no Doxy.
I realize that my fear of dying is a bit over the top and probably anxiety induced, but ive been sick since April and i just dont want to be sick anymore. So yeah, i know im not going to die, i just dont know how long this thing can stick around without proper treatment.
Please let me know if anyone agrees or disagrees with that course of action, or rather if your opinion is that its what you would do if you were in my situation.
So, theres my story, i hope it makes sense.
Thanks to everyone for listening and for the thoughtful replies, no one in my real life seems to be concerned at all.
I removed a tick in april of this year and didnt think much of it because of the area in which i live. A few days later i developed a pretty good maculopapular rash on the insides of both of my thighs, and a petechial rash on my feet. I had no idea what it was and ignored it. I then began running a low grade fever, having muscle and joint aches and severe fatigue.
I went to the doctor and he thought i just had a mild infection and gave me a zpack. I reacted badly to the zpack and had to get a cortisone shot.
A few weeks layer i then developed a diffuse rash on both arms and my entire legs. This rash was just red blotches that never went away. In August i went back to my doctor, he was out so i saw the PA. She took one look at me and said that looks like rocky mountain spotted fever. I didnt remember being bitten by the tick and told her i didnt think i had been bitten by a tick. She gave me a shot of Rocephin and a medrol pack. I woke up the next morning with severe hives all over my body. I went to urgent care, it was a saturday, and they told me to start the medrol pack immediately. The hives were so bad they lasted 2 days even with the medrol pack.
When my husband got home, i told him what the PA said and he reminded me of the tick bite back in the spring. I left a few days later for the Mayo for a separate issue and forgot all about the possible RMSF
I went back to my primary care doctor in October and asked for a tickbourne panel. It came back positive for RMSF at 1:64. Meaning i was either actively infected or recently infected(i think).
So, he prescribed 100mg doxy 1x per day. On day 6 and 7 I had severe all over body itching with a sandpaper rash across my chest. As soon as i stopped the doxy the rash went away. Im positive the rash was from the doxy.
I made another trip to the mayo, saw the infectious disease doctor, she said it was either herxheimer reaction or an allergic reaction and to start the doxy again at the 100mg 2x a day and if i started the severe itching soon after starting, it is an allergic reaction and to stop the doxy, she also felt that having had 7 pills should have been enough to clear up the RMSF since i had apparently contracted it back in April but didnt know it until October.
When i got home i went to an allergist because i have now reacted to several antibiotics that i have been able to take in the past. He said i was definitely allergic to the Doxy, the Rocephin, all quinolones and possibly the zpack. I showed him all the pictures of all the rashes and the hives, as i had taken pictures to document everything.
He said that he would have done a challenge test on me to determine if i was truly allergic, but i had already done that by restarting the doxy and having the severe itching, etc after just a few doses.
He said that if i were acute, he would put me in the hospital and desensitize me, but he says im past that stage and he thinks the amount of Doxy i had should be sufficient. He said the chloramphenical comes with a big black box warning and is very risky.
I obviously disagree that the amount of doxy i had was sufficient.
So, that leaves me in the conundrum of what to do now. Ive had the RMSF since April, cannot take Doxy, and have had no changes in my condition. The maculopapular rash comes and goes, i get random patches of petechial rashes on my arms and feet, the blotchy red patches on my arms comes and goes, the fever comes and goes and is followed by chills, and i still have muscle and joint pain and severe fatigue. All of this tels me that the infection is still ongoing, even though i was originally infected several months ago.
So, as i type this, i think i may have answered my own question, i think i may need to go back to that allergist and ask him to desensitize me to the Doxy so that i can take a proper course. Because what if i get RMSF again, and im one of the 25% that gets accutely ill, i guess it would kill me with no Doxy.
I realize that my fear of dying is a bit over the top and probably anxiety induced, but ive been sick since April and i just dont want to be sick anymore. So yeah, i know im not going to die, i just dont know how long this thing can stick around without proper treatment.
Please let me know if anyone agrees or disagrees with that course of action, or rather if your opinion is that its what you would do if you were in my situation.
So, theres my story, i hope it makes sense.
Thanks to everyone for listening and for the thoughtful replies, no one in my real life seems to be concerned at all.
According to the infectious disease doctor at the Mayo in Rochester, approximately 25% of people who contract RMSF will become accutely ill amd require hospitalization, and a certain percentahe of that 25% actually die. The rest are divided into two groups, those that respond favorably to a course of Doxy and have no lingering after affects, the rest seem to take from a few to several months to completely resolve. Those were her words. They love statistics at the mayo.
Hope that helps you understand that part better, as i understand this is a Lymes board.
Missi
Hope that helps you understand that part better, as i understand this is a Lymes board.
Missi
A co-infection of Lymes? Ive never read that anywhere that if you have RMFS you automatically have Lymes, or visa versa.
Do you have any links with documentation to show me that?
Are you saying that if your bitten by an infected tick, that tick will infect you with Lymes, RMSF, and all the other tick born diseases?
Im new to all of this so any documentation is appreciated.
Missi
Do you have any links with documentation to show me that?
Are you saying that if your bitten by an infected tick, that tick will infect you with Lymes, RMSF, and all the other tick born diseases?
Im new to all of this so any documentation is appreciated.
Missi
A co-infection does not mean 'automatically' having anything. It means that the ticks that carry one thing MAY carry other things too. I read somewhere long ago that maybe half of the ticks that carry Lyme ALSO carry something else, which can be any one of a number of other infections not related to Lyme. The only commonality among the diseases is that they all hitch a ride with the same ticks.
Lyme, RMSF, babesiosis, bartonella, and others are all separate diseases, but *can* be carried by the same ticks. Note: it's 'can be carried', not ARE carried, and if the tick has co-infection A, it does not mean the tick also has co-infection B, C, and/or D ... but it might.
The co-infections need separate testing and separate treatment from Lyme, and a good doc will make an educated guess based on your symptoms which (co)infections to test for. Then a treatment program can be structured of what to treat first with what meds, etc.
Sometimes the infections play hide-and-seek, partly because Lyme can suppress the immune system and cause the tests to not read accurately. Over time and through treatment, the doc can figure out from the patient's reaction to treatment what else might be lurking in the background.
This confusion does not occur in every patient: I had Lyme and babesiosis, and the treatment was very straightforward: treat babesia; then treat Lyme. Done.
Others here have had a longer and more complex course of treatment due to the interaction of various infections with the immune system, so the tests are indistinct, but it is test results on which treatment plans are constructed. Lyme in these situations is not a straight shot like I was lucky enough to have.
It is what it is, and the only thing to do is find an open-minded doc experienced in Lyme and its co-infections and the twists and turns of diagnosis and treatment. Sometimes a doc just doesn't work out and then you go find another one, but it's just part of the deal. The ticks play by their own rules, and science hasn't quite got it all nailed yet, so there are some dips and turns in the road.
ILADS [dot] org has treatment guidelines that have useful data for understanding Lyme and its co-infections. This is cutting-edge medicine, so there are no hard-and-fast answers or a single treatment approach.
Complicating matters are that so-called mainstream medicine (including the main voluntary organization for infectious disease docs, the IDSA, Infectious Disease Society of America) have as an article of faith that Lyme is hard to get and easy to cure with a couple weeks of doxycycline.
If you are still ill after treatment recommended by the IDSA, you may well be told you have 'post-Lyme syndrome', meaning the bacteria are dead, but your immune system is still acting like you're infected and so you feel lousy. To the contrary, ILADS holds that if you still have symptoms, you are probably still infected. Thus the bitter feelings by the IDSA toward ILADS, and if you go to an infectious disease doc, you will likely get this view that you aren't really sick, your body just thinks you are.
You are free to follow that approach, but it is not what I would do.
I know how through-the-looking-glass all this is. I recommend a documentary called 'Under Our Skin', available free online, which explains the split in the medical community. Don't be frightened by the terribly ill people you see there, because not everyone gets that sick. I didn't, and I had Lyme and babesiosis, but movies are movies and need to show what CAN happen, not what WILL happen.
Once the split in the medical community makes sense to you, the rest of it will too. Sounds like some crazy delusion, but it's not. I am now fully well and have been for several years after treatment by a Lyme specialist, as are others I know.
Lyme, RMSF, babesiosis, bartonella, and others are all separate diseases, but *can* be carried by the same ticks. Note: it's 'can be carried', not ARE carried, and if the tick has co-infection A, it does not mean the tick also has co-infection B, C, and/or D ... but it might.
The co-infections need separate testing and separate treatment from Lyme, and a good doc will make an educated guess based on your symptoms which (co)infections to test for. Then a treatment program can be structured of what to treat first with what meds, etc.
Sometimes the infections play hide-and-seek, partly because Lyme can suppress the immune system and cause the tests to not read accurately. Over time and through treatment, the doc can figure out from the patient's reaction to treatment what else might be lurking in the background.
This confusion does not occur in every patient: I had Lyme and babesiosis, and the treatment was very straightforward: treat babesia; then treat Lyme. Done.
Others here have had a longer and more complex course of treatment due to the interaction of various infections with the immune system, so the tests are indistinct, but it is test results on which treatment plans are constructed. Lyme in these situations is not a straight shot like I was lucky enough to have.
It is what it is, and the only thing to do is find an open-minded doc experienced in Lyme and its co-infections and the twists and turns of diagnosis and treatment. Sometimes a doc just doesn't work out and then you go find another one, but it's just part of the deal. The ticks play by their own rules, and science hasn't quite got it all nailed yet, so there are some dips and turns in the road.
ILADS [dot] org has treatment guidelines that have useful data for understanding Lyme and its co-infections. This is cutting-edge medicine, so there are no hard-and-fast answers or a single treatment approach.
Complicating matters are that so-called mainstream medicine (including the main voluntary organization for infectious disease docs, the IDSA, Infectious Disease Society of America) have as an article of faith that Lyme is hard to get and easy to cure with a couple weeks of doxycycline.
If you are still ill after treatment recommended by the IDSA, you may well be told you have 'post-Lyme syndrome', meaning the bacteria are dead, but your immune system is still acting like you're infected and so you feel lousy. To the contrary, ILADS holds that if you still have symptoms, you are probably still infected. Thus the bitter feelings by the IDSA toward ILADS, and if you go to an infectious disease doc, you will likely get this view that you aren't really sick, your body just thinks you are.
You are free to follow that approach, but it is not what I would do.
I know how through-the-looking-glass all this is. I recommend a documentary called 'Under Our Skin', available free online, which explains the split in the medical community. Don't be frightened by the terribly ill people you see there, because not everyone gets that sick. I didn't, and I had Lyme and babesiosis, but movies are movies and need to show what CAN happen, not what WILL happen.
Once the split in the medical community makes sense to you, the rest of it will too. Sounds like some crazy delusion, but it's not. I am now fully well and have been for several years after treatment by a Lyme specialist, as are others I know.
Thanks for the explanation. But i have RMSF, i do not have Lymes. The two can be mutually exclusive. The post by mojogal made it sound like if you habe rmsf you also have lymes, or maybe i just didnt understand her post, but i dont believe that if you have rmsf it is just a coinfection of lymes.
I really only posted here because im allergic to doxy and was wondering if anyonehad heard of anyone else in this situation and what to do about it.
I will bow out now, as it seems no one can offer assistance.
I greatly appreciate those of you who did try.
Missi
I really only posted here because im allergic to doxy and was wondering if anyonehad heard of anyone else in this situation and what to do about it.
I will bow out now, as it seems no one can offer assistance.
I greatly appreciate those of you who did try.
Missi
And PS, RMSF is NOT a coinfection of anything. It is almost always a stand alone infection and is the most rare and deadliest of all tick born diseases. Im sorry you guys are suffering Lymes, but RMSF is no joke and to suggest it is just a coinfection is totally not cool. Not cool at all. I wonder has anyone ever died within 10 days of contracting Lymes? It happens often with RMSF.
Peace out
Peace out
"RMSF is no joke and to suggest it is just a coinfection is totally not cool. Not cool at all."
No one said it is a joke, and I did not suggest it is 'just' a co-infection.
Hope you get well soon.
No one said it is a joke, and I did not suggest it is 'just' a co-infection.
Hope you get well soon.
Please don't misunderstand... I only saw genuine efforts here to help. A "coinfection" of Lyme is just another tick borne disease that might come along with Lyme. Sometimes the "coinfections" of Lyme are as bad or worse than Lyme, so that word does not diminish your illness in any way. It's just a mention that some people with one also have the other.
RMSF is indeed nasty and can kill fairly quickly. Lyme can kill, too, but definitely less often. You don't seem to have any symptoms of Lyme while you have classic symptoms of RMSF, so I doubt you need to worry about Lyme, either.
RMSF can also become chronic and do long term damage, so your concern about being treated sufficienty is valid. Lyme is controversial, but doctors are also surprisingly under-informed about RMSF, too. To tell you to wait a few months for it to go away isn't consistent with the literature on the disease.
Personally, I'd go find a doctor who would do the desensitization work for you for Doxy and get you treated until your symptoms are gone. If you still have rashes, it sure sounds like you're still infected. You're doing a good job of being your own advocate!
RMSF is indeed nasty and can kill fairly quickly. Lyme can kill, too, but definitely less often. You don't seem to have any symptoms of Lyme while you have classic symptoms of RMSF, so I doubt you need to worry about Lyme, either.
RMSF can also become chronic and do long term damage, so your concern about being treated sufficienty is valid. Lyme is controversial, but doctors are also surprisingly under-informed about RMSF, too. To tell you to wait a few months for it to go away isn't consistent with the literature on the disease.
Personally, I'd go find a doctor who would do the desensitization work for you for Doxy and get you treated until your symptoms are gone. If you still have rashes, it sure sounds like you're still infected. You're doing a good job of being your own advocate!
I will look for that documentation. I read where it said it was a co-infection of Lyme.
I just read the other posts. Ditto what Jackie said about co-infections. I have Bartonella, a co-infection which to me is worse then Lyme.
Here it is From Dr Horowitz's new book
"These pathogens join a rapidly expanding list of other bacteria, viruses and parasites that are transmitted by tick bites, including ehrlichia, anaplasma and babesia (a malaria-like parasite that creates day and night sweats and chills). There is also bartonella (cat scratch disease), mycoplasma, Rocky Mountain spotted fever, Q fever, typhus, and tularemia.
The existence of these co-infections — so-called because they are often transmitted along with Lyme disease — explain why some people with Lyme remain chronically ill even after treatment: while the Lyme is identified and treated, these other infections are not. In addition, testing for co-infections is often unreliable, as it is for Lyme disease, so co-infections often go undiagnosed."
"These pathogens join a rapidly expanding list of other bacteria, viruses and parasites that are transmitted by tick bites, including ehrlichia, anaplasma and babesia (a malaria-like parasite that creates day and night sweats and chills). There is also bartonella (cat scratch disease), mycoplasma, Rocky Mountain spotted fever, Q fever, typhus, and tularemia.
The existence of these co-infections — so-called because they are often transmitted along with Lyme disease — explain why some people with Lyme remain chronically ill even after treatment: while the Lyme is identified and treated, these other infections are not. In addition, testing for co-infections is often unreliable, as it is for Lyme disease, so co-infections often go undiagnosed."
Mojo, i was tested for every single tick born illness at the mayo, also Q fever and a few other things, I only have RMSF, so i will count myself lucky in that regard.
I know that im highly emotional right now because im simply frightened. I apologize for my tone, i dont mean to ne rude.
I know that im highly emotional right now because im simply frightened. I apologize for my tone, i dont mean to ne rude.
We can totally relate. And it is a very good thing to only have 1 tick borne illness. It's easier to treat. Just keep at it and don't accept any doctor who thinks you don't need to be treated.
Way too many doctors, especially ID docs, seem to trivialize or diminish tick borne disease because that's what they were taught. They seem to think if you're not overtly sick (fever, et.al.), then your immune system will just fight it off, especially in these days of fear of drug resistant bacteria. There's widespread ignorance of how low grade chronic infections can do damage over time.
Some more observant doctors better appreciate how serious they can be. Fortunately, RMSF is getting more press these days for its potential seriousness and for going undiagnosed, especially when there's no rash. Consider yourself fortunate that you did get diagnosed properly and that your doctor was willing to run the whole tick borne panel for you.
You are welcome here. Maybe we need to add to the forum name and call it "Lyme & Tick Borne Disease Community".
Way too many doctors, especially ID docs, seem to trivialize or diminish tick borne disease because that's what they were taught. They seem to think if you're not overtly sick (fever, et.al.), then your immune system will just fight it off, especially in these days of fear of drug resistant bacteria. There's widespread ignorance of how low grade chronic infections can do damage over time.
Some more observant doctors better appreciate how serious they can be. Fortunately, RMSF is getting more press these days for its potential seriousness and for going undiagnosed, especially when there's no rash. Consider yourself fortunate that you did get diagnosed properly and that your doctor was willing to run the whole tick borne panel for you.
You are welcome here. Maybe we need to add to the forum name and call it "Lyme & Tick Borne Disease Community".
I made a comment in my earlier post about how you didn't describe any symptoms that sounded like Lyme. But I just noticed the first couple posts you put in another forum. The hair on the back of my neck went up as, I hate to say it, I realized that every single thing you describe could be caused by late stage Lyme Disease.
Fibromyalgia & chronic fatigue are very common misdiagnoses for Lyme, especially when someone tests false negative. Low cortisol, thyroid problems, joint problems, and general malaise and fatigue are common late stage Lyme symptoms. LLMDs (Lyme Literate Medical Doctors) have also noticed that people with late stage Lyme often develop multiple allergies and sensitivities, whether they be environmental, food, or medicines. I got really drug sensitive when I was very sick. I could only tolerate small doses of medications and seemed to have every side effect listed. That has improved for me with treatment.
A huge problem in getting diagnosed properly is the tests. They were developed for surveillance (sampling) purposes to track new cases of Lyme in New England. The patients they used to come up with the Western Blot interpretation all had new infections with a bulls eye rash. They know very well that the antibodies that show up on the Western Blot change over time. This is because the bacteria hides and morphs itself to dodge antibodies.
Doctors who treat a lot of Lyme have complained about the tests since they day they were implemented, but to no avail. The CDC stubbornly refuses to admit they're flawed. If you're scientifically minded or even just curious, you can look up articles by Tom Grier, a scientist who explains Lyme testing and why the CDC testing protocol is so poor, missing as many as half of actual cases.
I had Lyme for 6 years before I was finally diagnosed. I tested false negative on a CSF antibody test and a blood screening test. I only got a Western Blot run because I convinced my GP to authorize IGeneX testing. IGeneX shows relevant, Lyme specific bands that are inexplicably and inexcusably ignored by the CDC and will offer a more liberal interpretation of the test.
If I'd had a Western Blot run at my regular lab, it would have been completely negative, with only a Band 41 showing on both parts, something a whole lot of people who've never had Lyme also show. But at IGeneX, they showed that I had two Lyme specific bands that other labs ignore. I had so many symptoms and a history of a tick bite and acute illness right after, that it was obvious to me. But no infectious disease doctor would ever have diagnosed me with Lyme. They are required to follow the IDSA "guidelines" to follow the blood tests.
Since you've already tested negative (not a surprise for someone who's had it for years), you'll need to find an open minded doctor willing to order IGeneX tests, or you'll need to find a LLMD for a complete work up. You can find a one in your area via ILADS.org, a medical society for doctors who are knowledgeable about tick borne disease and are willing to look beyond the dogma to treat patients as individuals.
You can also find one via local support groups. Often they know some Lyme aware doctors who take insurance who will at least order IGeneX testing and render a diagnosis, perhaps even offer treatment beyond the "standard" month. But you'll need a good LLMD if you want to get well. If you are willing to tell us where you are, some others here might be able to offer a recommendation privately. We don't generally name doctors on the forum as it invites harassment of them by people who don't "believe" in chronic Lyme Disease.
I encourage you to do some research into the controversy over Lyme. I encourage you to ask questions here as most regulars have experienced late stage Lyme, gone undiagnosed, been misdiagnosed, and finally ended up at an LLMD after exhausting possibilities elsewhere.
If you have an underlying Lyme infection, your immune system may be compromised and you may have difficulty fighting off the RMSF, which you acquired more recently. You may also find on Doxy that other symptoms start popping up or flaring up that aren't consistent with RMSF. That is consistent with treating Lyme. It's called a herxheimer reaction.
Anyway, there is much to know about late stage Lyme, so I'll stop before I overwhelm you. Feel free to tell us your story. We have much to commiserate with.
Fibromyalgia & chronic fatigue are very common misdiagnoses for Lyme, especially when someone tests false negative. Low cortisol, thyroid problems, joint problems, and general malaise and fatigue are common late stage Lyme symptoms. LLMDs (Lyme Literate Medical Doctors) have also noticed that people with late stage Lyme often develop multiple allergies and sensitivities, whether they be environmental, food, or medicines. I got really drug sensitive when I was very sick. I could only tolerate small doses of medications and seemed to have every side effect listed. That has improved for me with treatment.
A huge problem in getting diagnosed properly is the tests. They were developed for surveillance (sampling) purposes to track new cases of Lyme in New England. The patients they used to come up with the Western Blot interpretation all had new infections with a bulls eye rash. They know very well that the antibodies that show up on the Western Blot change over time. This is because the bacteria hides and morphs itself to dodge antibodies.
Doctors who treat a lot of Lyme have complained about the tests since they day they were implemented, but to no avail. The CDC stubbornly refuses to admit they're flawed. If you're scientifically minded or even just curious, you can look up articles by Tom Grier, a scientist who explains Lyme testing and why the CDC testing protocol is so poor, missing as many as half of actual cases.
I had Lyme for 6 years before I was finally diagnosed. I tested false negative on a CSF antibody test and a blood screening test. I only got a Western Blot run because I convinced my GP to authorize IGeneX testing. IGeneX shows relevant, Lyme specific bands that are inexplicably and inexcusably ignored by the CDC and will offer a more liberal interpretation of the test.
If I'd had a Western Blot run at my regular lab, it would have been completely negative, with only a Band 41 showing on both parts, something a whole lot of people who've never had Lyme also show. But at IGeneX, they showed that I had two Lyme specific bands that other labs ignore. I had so many symptoms and a history of a tick bite and acute illness right after, that it was obvious to me. But no infectious disease doctor would ever have diagnosed me with Lyme. They are required to follow the IDSA "guidelines" to follow the blood tests.
Since you've already tested negative (not a surprise for someone who's had it for years), you'll need to find an open minded doctor willing to order IGeneX tests, or you'll need to find a LLMD for a complete work up. You can find a one in your area via ILADS.org, a medical society for doctors who are knowledgeable about tick borne disease and are willing to look beyond the dogma to treat patients as individuals.
You can also find one via local support groups. Often they know some Lyme aware doctors who take insurance who will at least order IGeneX testing and render a diagnosis, perhaps even offer treatment beyond the "standard" month. But you'll need a good LLMD if you want to get well. If you are willing to tell us where you are, some others here might be able to offer a recommendation privately. We don't generally name doctors on the forum as it invites harassment of them by people who don't "believe" in chronic Lyme Disease.
I encourage you to do some research into the controversy over Lyme. I encourage you to ask questions here as most regulars have experienced late stage Lyme, gone undiagnosed, been misdiagnosed, and finally ended up at an LLMD after exhausting possibilities elsewhere.
If you have an underlying Lyme infection, your immune system may be compromised and you may have difficulty fighting off the RMSF, which you acquired more recently. You may also find on Doxy that other symptoms start popping up or flaring up that aren't consistent with RMSF. That is consistent with treating Lyme. It's called a herxheimer reaction.
Anyway, there is much to know about late stage Lyme, so I'll stop before I overwhelm you. Feel free to tell us your story. We have much to commiserate with.
Hindsight is 20/20 so they say. Last year early summer of 2012, something bit me, i felt it bite me and it itched like crazy. Within a few hours i had a huge bullseye rash at the bite mark. Can mosquitos or spiders carry lymes? If a spider can carry mrsa, why not lymes? A short while after i got very sick with flu like symptoms. Went to irgent care got a shot of rocephin, a zpack, a steroid shot and something else, i was very sick. (ps, that was my 2nd rocephin shot ever, on my 3 rd shot back in august i had a severe allergic reaction to it) I then couldnt get rid of the ear infection and had to have tubes inserted because my eardrums were so severely retracted, one was stuck to the bone in my middle ear and had to be pryed off. I hadnt felt well prior to all of this but have gone downhill severely since.
I just went and relooked at my testing paperwork and an "immunoassay" was done for Lymes. Is that the same as a western blot? Dont they only do a western blot if something is positive on the elisa? Of course the all knowing mayo clinic only ran an elisa. The first lab did the other testing here at home.
I will also say that when that doctor gabe me the medrol pack back in august of this year after i reacted to the rocephin, i went ballostic, i was only able to take day 1 and i went a bit nuts, i felt rageful, not like me at all. My doc said i wasnt psychotic but to stop the steroids immediately. Ive read on this forum that steroids make things worse.
My story is very long and complicated and my short term memory is shot so im sorry im telling it in pieces.
Im so very tired and am about ready to throw in the towel and say just let whatever happens happen. I get ZERO support at home. And that. In itself is very frustrating.
Thanks
I just went and relooked at my testing paperwork and an "immunoassay" was done for Lymes. Is that the same as a western blot? Dont they only do a western blot if something is positive on the elisa? Of course the all knowing mayo clinic only ran an elisa. The first lab did the other testing here at home.
I will also say that when that doctor gabe me the medrol pack back in august of this year after i reacted to the rocephin, i went ballostic, i was only able to take day 1 and i went a bit nuts, i felt rageful, not like me at all. My doc said i wasnt psychotic but to stop the steroids immediately. Ive read on this forum that steroids make things worse.
My story is very long and complicated and my short term memory is shot so im sorry im telling it in pieces.
Im so very tired and am about ready to throw in the towel and say just let whatever happens happen. I get ZERO support at home. And that. In itself is very frustrating.
Thanks
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