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
Not to be a wet blanket, but the standard tests given to detect Lyme disease are often false negative, esp. after a little time has passed between the bite and the test. Three months could well be within that range.
If your doc used the Western blot and/or ELISA tests (which are tests common), then it is quite possible that the test was a 'false negative', meaning the test result could say you do not have Lyme, but the test was wrong and you could have Lyme.
Not everyone gets a rash or circular red bite -- I had a serious, miserable, documented, case of Lyme, but I also had no bites and no rashes.
On a second point, doxycycline can be effective against Lyme, but ONLY if given very very soon after the initial bite. Many of us do not know when we were first bitten, and thus the infection can be too well established for doxy alone to be effective, because Lyme bacteria create slimy, shielded areas in the body called biofilms, which shield the bacteria from the human immune system. Result: the Lyme bacteria party on indefinitely.
It really doesn't take long for the Lyme bacteria to encyst and to flourish. Even at that stage of infection, however, Lyme can be treated and eradicated, but doxycycline alone is, from what I read and what I lived through, other meds are needed to breach the biofilm so the antibiotics can kill the bacteria.
Having lived through Lyme myself, if I were in your situation, I would find a Lyme specialist for a work up and consultation.
If your doc used the Western blot and/or ELISA tests (which are tests common), then it is quite possible that the test was a 'false negative', meaning the test result could say you do not have Lyme, but the test was wrong and you could have Lyme.
Not everyone gets a rash or circular red bite -- I had a serious, miserable, documented, case of Lyme, but I also had no bites and no rashes.
On a second point, doxycycline can be effective against Lyme, but ONLY if given very very soon after the initial bite. Many of us do not know when we were first bitten, and thus the infection can be too well established for doxy alone to be effective, because Lyme bacteria create slimy, shielded areas in the body called biofilms, which shield the bacteria from the human immune system. Result: the Lyme bacteria party on indefinitely.
It really doesn't take long for the Lyme bacteria to encyst and to flourish. Even at that stage of infection, however, Lyme can be treated and eradicated, but doxycycline alone is, from what I read and what I lived through, other meds are needed to breach the biofilm so the antibiotics can kill the bacteria.
Having lived through Lyme myself, if I were in your situation, I would find a Lyme specialist for a work up and consultation.
Thanks helpful information. I had a tick bite 3 months ago with no rash or nothing. However I did basically stop breathing twice for a few seconds(Shock most likely),I thought I was having a panic attack and thought nothing of it. (I have panic disorder). After 3 months the tick bite was still there but no other symptoms. I went to the Dr he run a tick panel and I had RMSF antibodies. The Doxy has side effects but I think I will be okay. Reading about it scared me worse then having it. No severe symptoms at all,lucky i guess. So far anyhow. 3 months in I think even with no Doxy I would have been okay but not worth risking.
One more comment... on your IgG Western Blot results... I only showed a weak positive on Band 41, which most people have. Where I showed my Lyme specific antibodies was on the IgM portion.
But the dogma about Lyme says that the IgM is unreliable after the first month and that it should be ignored. It looks like your doc/lab didn't even run it for that reason. But Lyme doesn't follow the "rules" of behaviour that infectious disease doctors think it should. In my case, 6 years in to the infection, my body was still struggling to fight it as if it were a new infection.
Long term, Lyme moves out of the bloodstream and into tissues. It can be very difficult to find in the blood in a patient who's had it a year or more. As a result, the immune system doesn't see it and reduces antibody production. Some people very sick with late stage Lyme test completely negative. Also, some labs are just better than others at running the Western Blot and finding meaningful results.
Your Doxy treatment for RMSF will provide something of an antibiotic challenge for you where the Doxy kills a few spirochetes, which wakes up the immune system to the invaders, which results in new antibody production. Once you're done with the RMSF treatment, it would be a good time to get a full Western Blot done at IGeneX. You may have started producing new antibodies. You may also see something indicating Lyme on the IgM as I did.
But the dogma about Lyme says that the IgM is unreliable after the first month and that it should be ignored. It looks like your doc/lab didn't even run it for that reason. But Lyme doesn't follow the "rules" of behaviour that infectious disease doctors think it should. In my case, 6 years in to the infection, my body was still struggling to fight it as if it were a new infection.
Long term, Lyme moves out of the bloodstream and into tissues. It can be very difficult to find in the blood in a patient who's had it a year or more. As a result, the immune system doesn't see it and reduces antibody production. Some people very sick with late stage Lyme test completely negative. Also, some labs are just better than others at running the Western Blot and finding meaningful results.
Your Doxy treatment for RMSF will provide something of an antibiotic challenge for you where the Doxy kills a few spirochetes, which wakes up the immune system to the invaders, which results in new antibody production. Once you're done with the RMSF treatment, it would be a good time to get a full Western Blot done at IGeneX. You may have started producing new antibodies. You may also see something indicating Lyme on the IgM as I did.
There is definitely a way out. Doxy is the first choice drug for a new Lyme infection and is often used as part of late stage Lyme therapy, too. If I were in your shoes, I would go for the Doxy desensitization and treatment for RMSF. Get rid of the RMSF first as it is probably your highest priority right now. Do not be surprised if you feel worse on Doxy. This is common when a Lyme patient takes it. (Just look up "herxheimer" reactions in Lyme patients.)
Then, get to a LLMD for Lyme treatment. The Doxy should take care of the RMSF, at which point you move on to long term Lyme treatment. If whatever treatment the doctor gives you for RMSF is insufficient, then a good LLMD should be able to finish it off. It would probably just need a longer course of antibiotics.
With my insurance, I pay far more for treatments prescribed by an out-of-network doctor than by an in-network doctor. If this is the case for you, too, then going through an in-network physician for the desensitization makes the most sense.
Long term treatment for Lyme helps the vast majority of patients who go through it. There is hope and there is help! But you have to get to an LLMD first. Feeling down and discouraged are part and parcel of the Lyme complex. It's no fun, especially when you don't have a lot of support. I had trouble getting my family to understand how sick I was. Two days before I was hospitalized I was telling my mother how much pain I was in and she thought that doctors might tell me it's "normal aging." I couldn't believe it. She really didn't get it. Getting my diagnosis helped, but I had to make the decision to get tested at IGeneX and get to an LLMD primarily on my own. Only then could I convince my spouse that it was the right thing to do.
It's worth it to feel better again! Hang in there! One step at a time. Tackle your RMSF first.
Then, get to a LLMD for Lyme treatment. The Doxy should take care of the RMSF, at which point you move on to long term Lyme treatment. If whatever treatment the doctor gives you for RMSF is insufficient, then a good LLMD should be able to finish it off. It would probably just need a longer course of antibiotics.
With my insurance, I pay far more for treatments prescribed by an out-of-network doctor than by an in-network doctor. If this is the case for you, too, then going through an in-network physician for the desensitization makes the most sense.
Long term treatment for Lyme helps the vast majority of patients who go through it. There is hope and there is help! But you have to get to an LLMD first. Feeling down and discouraged are part and parcel of the Lyme complex. It's no fun, especially when you don't have a lot of support. I had trouble getting my family to understand how sick I was. Two days before I was hospitalized I was telling my mother how much pain I was in and she thought that doctors might tell me it's "normal aging." I couldn't believe it. She really didn't get it. Getting my diagnosis helped, but I had to make the decision to get tested at IGeneX and get to an LLMD primarily on my own. Only then could I convince my spouse that it was the right thing to do.
It's worth it to feel better again! Hang in there! One step at a time. Tackle your RMSF first.
I worded it wrong. It said immunoBLOT, not immunoassay.
Question, is immunoblot the same as western blot?
Does an elisa need to be done before a western blot, in other words, is it always done before a western blot?
Next, the lab used says the test was developed by Force Diagnostics. So its one of those not fda approved things.
Next, all bands were IGG bands. They were
19
23
28
30
39
41
45
58
66
93
All were negative- non reactive
It also says ehrlochia chaffeenis igg < 1:64
And the igm was <1:20
The RMSF says igg titers detected at 1:64 but igm titers not detected
The one from the Mayo just says Elisa Negative.
Hope this helps.
Really, at this point im ready to throw in the towel. If i did get a diagnosis for lymes, the drugs to treat it makes rmsf worse. If i did get a doc to desensitize me to doxy, thats a hospitilization, they would only treat me for what they believe would cure it, which is a week or two on doxy, we know thats not gonna fix it at this late stage of the disease, so either way i look at it, my moddle name right now is screwed.
I know i sound like a real downer, and right now i am somewhat depressed over this whole mess. There just seems to be no way out.
Question, is immunoblot the same as western blot?
Does an elisa need to be done before a western blot, in other words, is it always done before a western blot?
Next, the lab used says the test was developed by Force Diagnostics. So its one of those not fda approved things.
Next, all bands were IGG bands. They were
19
23
28
30
39
41
45
58
66
93
All were negative- non reactive
It also says ehrlochia chaffeenis igg < 1:64
And the igm was <1:20
The RMSF says igg titers detected at 1:64 but igm titers not detected
The one from the Mayo just says Elisa Negative.
Hope this helps.
Really, at this point im ready to throw in the towel. If i did get a diagnosis for lymes, the drugs to treat it makes rmsf worse. If i did get a doc to desensitize me to doxy, thats a hospitilization, they would only treat me for what they believe would cure it, which is a week or two on doxy, we know thats not gonna fix it at this late stage of the disease, so either way i look at it, my moddle name right now is screwed.
I know i sound like a real downer, and right now i am somewhat depressed over this whole mess. There just seems to be no way out.
Oops... I mentioned anxiety after the shot. But your comment said you felt that with the Medrol. Lots of people feel weird on steroids, so that could have been a side effect. But since steroids make a Lyme patient feel worse, it could even have been a sign of the Lyme infection getting worse.
When I first got a prednisone shot, I felt slightly better for about a day, then I started getting worse. A few days later, I ended up in the ER. They gave me more prednisone, oral this time. By the last day (4) of it, I was feeling miserable. It wasn't until the last dose that I made the connection, and regretted taking it. But it was too late. The damage was done. I went steadily downhill after that.
When I first got a prednisone shot, I felt slightly better for about a day, then I started getting worse. A few days later, I ended up in the ER. They gave me more prednisone, oral this time. By the last day (4) of it, I was feeling miserable. It wasn't until the last dose that I made the connection, and regretted taking it. But it was too late. The damage was done. I went steadily downhill after that.
The bulls eye rash is definitive for Lyme Disease. But you could have already had Lyme from a bite years earlier when you didn't see a rash. The shot of Rocephin, while powerful, wouldn't be enough to kill all of it. A month of high dose Doxy generally does the trick at the the beginning.
Also, getting infected on top of an existing infection usually results in the patient getting sicker. There was a study in mice where they infected two groups of mice with two different strains of Lyme, and then gave a third group both strains. The group with two different strains were noticeably sicker than the two other groups with only one strain.
I have yet to hear of a single good experience by someone with Lyme at a Mayo clinic. They are especially rigid and narrow in their take on the disease. I believe the "immunoassay" is the same test I had, which is also known as an IFA (for Immuno Fluorescent Assay), which is an alternative screening test to the ELISA. I was (false) negative on my IFA.
When I had an IFA done again at IGeneX, I was a 40. 80 and up is considered a positive. But IGeneX calls 40-79 an "equivocal." I was at the rock bottom of equivocal, and nowhere near the 80 that the first lab required for positive.
What did your Western Blot result say? Did it just say "negative" or did it show the specific bands? Let us know what the specific bands are with any number of + signs next to it. A single plus is a low positive, three is a high positive.
Unfortunately, doctors are so enslaved to test results that they'll believe the tests over the bulls eye rash. No guidelines anywhere say a single Rocephin shot will cure a new Lyme infection, so I'm surprised a doc would do that. It just goes to show how extensive the misinformation and misunderstandings are.
Often, with anti-Lyme medications, a patient will get a "herxheimer" reaction. We all it a "herx" for short. It is either generic, with headache and fatigue and malaise, or symptom specific, where your specific symptoms flare up and get worse. Lyme can also cause neuropsychiatric symptoms, so a herxheimer could include an intensification of these symptoms. Your anxiety after the shot could have been a herxheimer reaction. Bartonella is a common coinfection of Lyme and is known to cause neuropsychiatric symptoms. You could also have acquired Bartonella, which mimics many Lyme symptoms but is only partially treated by Doxy or Rocephin.
I have persistent rib pain. It's in the cartilage/connective tissue, especially in the front lower ribs. Whenever I take a new Lyme med (that works), this pain gets worse before declining and eventually improving. It's my barometer for whether the med works or not. But not everybody has a reaction like this. Some have no reaction, but just slowly start feeling better.
Hidden Babesia can also hamper Lyme treatment. This isn't well understood as the CDC continues in its denial about how widespread Babesia is. There is little to any research work on how these infections interact, and it's only the LLMDs who are aware of them and how different and difficult they can be when they coexist. Given how crummy you feel, you'll need to consider coinfections as well. They just seem to make a Lyme patient sicker.
Yes, steroids make tick borne infections worse. It's good you stopped. But what little you had did suppress your immune system and could have interfered with antibody development. This makes it even more likely you'll test false negative on antibody tests. Do them anyway, though. I'd had steroids but managed to produce just enough antibodies for an IGeneX positive Western Blot and a Bartonella "not negative" result, which got my my diagnosis.
It is hard to focus and deal with everything with a Lyme infection. To help avoid feeling overwhelmed, just focus on the next step. For you, that would be getting tested at IGeneX. If one of your current doctors won't do it, then contact a local Lyme support group to ask about a doctor in your are who will.
One step at a time. Dealing with a late stage Lyme infection is not a sprint, it's a distance run that requires dogged persistence of one step at a time.
Also, getting infected on top of an existing infection usually results in the patient getting sicker. There was a study in mice where they infected two groups of mice with two different strains of Lyme, and then gave a third group both strains. The group with two different strains were noticeably sicker than the two other groups with only one strain.
I have yet to hear of a single good experience by someone with Lyme at a Mayo clinic. They are especially rigid and narrow in their take on the disease. I believe the "immunoassay" is the same test I had, which is also known as an IFA (for Immuno Fluorescent Assay), which is an alternative screening test to the ELISA. I was (false) negative on my IFA.
When I had an IFA done again at IGeneX, I was a 40. 80 and up is considered a positive. But IGeneX calls 40-79 an "equivocal." I was at the rock bottom of equivocal, and nowhere near the 80 that the first lab required for positive.
What did your Western Blot result say? Did it just say "negative" or did it show the specific bands? Let us know what the specific bands are with any number of + signs next to it. A single plus is a low positive, three is a high positive.
Unfortunately, doctors are so enslaved to test results that they'll believe the tests over the bulls eye rash. No guidelines anywhere say a single Rocephin shot will cure a new Lyme infection, so I'm surprised a doc would do that. It just goes to show how extensive the misinformation and misunderstandings are.
Often, with anti-Lyme medications, a patient will get a "herxheimer" reaction. We all it a "herx" for short. It is either generic, with headache and fatigue and malaise, or symptom specific, where your specific symptoms flare up and get worse. Lyme can also cause neuropsychiatric symptoms, so a herxheimer could include an intensification of these symptoms. Your anxiety after the shot could have been a herxheimer reaction. Bartonella is a common coinfection of Lyme and is known to cause neuropsychiatric symptoms. You could also have acquired Bartonella, which mimics many Lyme symptoms but is only partially treated by Doxy or Rocephin.
I have persistent rib pain. It's in the cartilage/connective tissue, especially in the front lower ribs. Whenever I take a new Lyme med (that works), this pain gets worse before declining and eventually improving. It's my barometer for whether the med works or not. But not everybody has a reaction like this. Some have no reaction, but just slowly start feeling better.
Hidden Babesia can also hamper Lyme treatment. This isn't well understood as the CDC continues in its denial about how widespread Babesia is. There is little to any research work on how these infections interact, and it's only the LLMDs who are aware of them and how different and difficult they can be when they coexist. Given how crummy you feel, you'll need to consider coinfections as well. They just seem to make a Lyme patient sicker.
Yes, steroids make tick borne infections worse. It's good you stopped. But what little you had did suppress your immune system and could have interfered with antibody development. This makes it even more likely you'll test false negative on antibody tests. Do them anyway, though. I'd had steroids but managed to produce just enough antibodies for an IGeneX positive Western Blot and a Bartonella "not negative" result, which got my my diagnosis.
It is hard to focus and deal with everything with a Lyme infection. To help avoid feeling overwhelmed, just focus on the next step. For you, that would be getting tested at IGeneX. If one of your current doctors won't do it, then contact a local Lyme support group to ask about a doctor in your are who will.
One step at a time. Dealing with a late stage Lyme infection is not a sprint, it's a distance run that requires dogged persistence of one step at a time.
We can all relate to the Lyme brain so don't worry about it at all. I get no support from my mother who I have lived with the past 2 years since my fiancée has been working overseas.
He got MRSA from a spider bite but I have never heard of a spider or mosquito carrying Lyme.
Sure hope you feel better soon.
He got MRSA from a spider bite but I have never heard of a spider or mosquito carrying Lyme.
Sure hope you feel better soon.
The CDC states that there 'is no credible evidence' that mosquitoes can carry Bb.
But this article says they do:
http://www.ncbi.nlm.nih.gov/pubmed/17044261
"Borrelia burgdorferi sensu lato infection in mosquitoes from Szczecin area."
Of course that's only a sensu lato infection but can it be ignored?
I remain on the fence.:)
But this article says they do:
http://www.ncbi.nlm.nih.gov/pubmed/17044261
"Borrelia burgdorferi sensu lato infection in mosquitoes from Szczecin area."
Of course that's only a sensu lato infection but can it be ignored?
I remain on the fence.:)
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
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.
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".
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.
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."
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.
I will look for that documentation. I read where it said it was a co-infection of Lyme.
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!
"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.
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
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
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.
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
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