Aa
still worried it's lyme
I'm an active wife and mother of three with a full-time job. On June 14, 2014, I discovered a tick attached to my right hip. The tick was removed. It was a deer tick but did not seem engorged. The evening before I was nauseous with diarrhea, and fever of 99.5. I felt fine the day I found the tick but was getting symptomatic again about the time I found the tick. I felt okay the next day but on Monday, I felt nauseous again. (I was pre-menstral at the time and get "run down" right before the cycle starts.) I went to the doctor on Tuesday, June 17, with low-grade fever, diarrhea, nausea, and slight headache. I brought the now dead tick, which they sent to the lab to test it for Lyme. Doctor prescribed Doxy 100mg X 2 per day for 14 days as a precaution. Eating crackers was about all I could handle.
I started the doxy Wednesday, June 18, and after taking it each time for about seven days, I'd feel horrible. Lips and face burning, nausea, headache, felt like an ulcer in my throat. Temperature was normal, one of those days I did have the low grade fever. The effects would be greater for the first couple hours after taking the doxy; then they'd lessen.
Day nine of doxy I actually started to feel better, the burning face, sweating, etc., was mild in comparison to the other days. I went back to the doctor, who checked my throat and found some visible irritation there (sorry don't remember the techie term), and got the results back that the tick was a deer tick but that lyme was not detectable. The doctor told me to stop the doxy due to the test results and the side effects I was having. (I initially thought I might have been "herxing.")
Saturday I felt good. Sunday I felt good. I played a soccer game (I'm in an adult recreational league) Sunday afternoon, got a bit dehydrated and hit the fluids well. I was eating normally. Monday I felt good until the evening. It was like I hit a brick wall. This was about 72 hours after I stopped the doxy. I was weak-limbed, dizzy, nauseous, sweaty, had diarrhea, slight headache, slight fever again. I put the kids to be and went to sleep early (10:30, early for me).
Tuesday started out okay, I had woken up twice in the night but went back to sleep. Took the kids to camp, went to work. At work I couldn't concentrate, the nausea was really bad. Feeling weak, sweaty, I left and went home. Could barely eat a slice of toast and some crackers. Drank about 24 ounces of water, 8 ounces of tonic water (sometimes settles my stomach), and 10 ounces of Perrier water. By the end of the day I had five minutes here and there when I felt somewhat normal then the nausea would over take me again. Tuesday night I also noticed random and weird pains in my joints and muscles. Places that have never hurt before: fingers, ankles, knees, elbows. Also, my neck and shoulders and upper back were (and are) very stiff, and a little painful when I move side to side and up or down.
I went back to the GP I've been seeing. Vitals appear normal, fever was absent (it comes and goes). He ordered blood tests for me for arthritis, and one for Lyme. Maybe another one, but I'm not sure. He gave me an anti-nausea prescription. I filled it but haven't yet taken it. I just woke up from a nap and have to get the kids soon. He told me that there's a lot of alarmist stuff out on the internet and that sometimes our sickness can be in our mind. I agreed with him but said that the joint and muscle stuff started to happen and THEN I looked it up on the internet and all my symptoms kept pointing me to Lyme.
Just wondering what the thoughts are in this community. I'm trying not to worry (but I am). I'm scared because I'm so busy with family and a demanding job and I'm not sure what to do if this doesn't improve as it is rather debilitating. I know there are so many of you who have it much, much worse. You have my sympathies!
Any advice? I'm thinking that I may have had Lyme from another tick interaction that I am unaware of and the doxy started something.
Thanks in advance. I've read lots of the comments out here and know you all our informed, helpful, and kind. I live in Maryland, by the way, so any doc recommendations would be appreciated. I'm good with traditional and nontraditional medicine.
I started the doxy Wednesday, June 18, and after taking it each time for about seven days, I'd feel horrible. Lips and face burning, nausea, headache, felt like an ulcer in my throat. Temperature was normal, one of those days I did have the low grade fever. The effects would be greater for the first couple hours after taking the doxy; then they'd lessen.
Day nine of doxy I actually started to feel better, the burning face, sweating, etc., was mild in comparison to the other days. I went back to the doctor, who checked my throat and found some visible irritation there (sorry don't remember the techie term), and got the results back that the tick was a deer tick but that lyme was not detectable. The doctor told me to stop the doxy due to the test results and the side effects I was having. (I initially thought I might have been "herxing.")
Saturday I felt good. Sunday I felt good. I played a soccer game (I'm in an adult recreational league) Sunday afternoon, got a bit dehydrated and hit the fluids well. I was eating normally. Monday I felt good until the evening. It was like I hit a brick wall. This was about 72 hours after I stopped the doxy. I was weak-limbed, dizzy, nauseous, sweaty, had diarrhea, slight headache, slight fever again. I put the kids to be and went to sleep early (10:30, early for me).
Tuesday started out okay, I had woken up twice in the night but went back to sleep. Took the kids to camp, went to work. At work I couldn't concentrate, the nausea was really bad. Feeling weak, sweaty, I left and went home. Could barely eat a slice of toast and some crackers. Drank about 24 ounces of water, 8 ounces of tonic water (sometimes settles my stomach), and 10 ounces of Perrier water. By the end of the day I had five minutes here and there when I felt somewhat normal then the nausea would over take me again. Tuesday night I also noticed random and weird pains in my joints and muscles. Places that have never hurt before: fingers, ankles, knees, elbows. Also, my neck and shoulders and upper back were (and are) very stiff, and a little painful when I move side to side and up or down.
I went back to the GP I've been seeing. Vitals appear normal, fever was absent (it comes and goes). He ordered blood tests for me for arthritis, and one for Lyme. Maybe another one, but I'm not sure. He gave me an anti-nausea prescription. I filled it but haven't yet taken it. I just woke up from a nap and have to get the kids soon. He told me that there's a lot of alarmist stuff out on the internet and that sometimes our sickness can be in our mind. I agreed with him but said that the joint and muscle stuff started to happen and THEN I looked it up on the internet and all my symptoms kept pointing me to Lyme.
Just wondering what the thoughts are in this community. I'm trying not to worry (but I am). I'm scared because I'm so busy with family and a demanding job and I'm not sure what to do if this doesn't improve as it is rather debilitating. I know there are so many of you who have it much, much worse. You have my sympathies!
Any advice? I'm thinking that I may have had Lyme from another tick interaction that I am unaware of and the doxy started something.
Thanks in advance. I've read lots of the comments out here and know you all our informed, helpful, and kind. I live in Maryland, by the way, so any doc recommendations would be appreciated. I'm good with traditional and nontraditional medicine.
A couple of quick notes:
Doxy won't treat non-Lyme infections that the "Lyme" ticks also carry about half the time, nor will the Lyme tests detect those other infections: babesia, bartonella, ehrlichiosis, and a few more. A doc familiar with the symptom overlap among various infections would likely order tests for more than Lyme, since different meds are usually needed against these other infections.
You ask, "No visible evidence of tick bite, no rash, so no idea if/when he was bitten. Strange case?" No, not strange at all. I never had a rash or saw a tick on me, but had blazing cases of Lyme and babesiosis (similar to malaria but carried by Lyme ticks).
You also say, "I'm feeling a little better, but will pursue more testing with a different doctor" -- that's good -- "(maybe the ID doc my husband is seeing as my insurance will work there--less out of pocket)..." Be aware that ID docs are NOT known for diagnosing Lyme very frequently. They are in the 'hard to get, easy to cure' group of MDs. It goes along with the principles of the Infectious Disease Society of America (IDSA), which many ID docs belong to and would naturally tend to follow their teachings.
When you do have funds available, I would spend them on a Lyme doc rather than an infectious disease doc. It took me 20 MDs to get diagnosed finally ... Doc #20, in desperation, ran a Lyme test on me, which came back positive (!), but she said very gently as she handed me the results that I could not possibly have Lyme, because I didn't look sick enough, and she had patients (so she said) who were 'near death' from Lyme. Great.
I took my positive test and went to a Lyme specialist, who happens to be an immunologist by training, but a Lyme doc can be any specialty or none. What counts is their point of view and understanding of Lyme and its co-infections.
You might get lucky with your in-network doc, and even if the tests show a negative, ALWAYS get copies of them and keep them in a folder or binder at home. At some point in the future, you may have opportunity to see a doc who thinks bigger thoughts and would see things in those test results that unenlightened docs just don't understand.
Also know that your negative results on tests could be because the basic tests (ELISA and Western blot) do not look for Lyme bacteria in your blood. Instead, the tests look for your immune system's reaction (antibodies) to the Lyme bacteria. The problem with that approach is that the human immune system is set up to kill invading bacteria quickly, and assuming all the bacteria are dead, the immune system stops reacting. However: Lyme bacteria, unlike most other bacteria, reproduce verrrry slowly, and it is when the bacterial wall is disrupted for reproduction purposes that the Lyme bacteria are most susceptible to the human immune system and medication. Therefore treatment for Lyme needs to be longer than a couple weeks of antibiotics: the Lyme bugs will just wait it out inside your body, and hide in slimy shields they create, called biofilms, which keep the human immune system from seeing and killing the Lyme bacteria.
This works to the advantage of Lyme bacteria, which reproduce VERY slowly, so that the immune system has often packed up and given up while the Lyme bacteria are just laying back and waiting to reproduce on a longer schedule. A quick-response immune system and slow, hidden infections are not a good match from the patients' point of view.
It is this fundamental error by infectious disease docs and many others (that is, that Lyme acts like all other bacteria) is a big part of the reason Lyme is hard to get treat. All the more reason to see a Lyme specialist. My family did, and we are well as a result. Best wishes to you --
PS if you can establish financial difficulty, there are charities that will fund testing and treatment. Lyme TAP and Lymelight Foundation are the ones I have read about, but the latter may focus only on children, not sure. Bottom line is that Lyme won't go away by itself, so whipping out the credit cards or passing the hat among family and friends could be a very reasonable thing to do. I sure would. Best wishes to you --
Doxy won't treat non-Lyme infections that the "Lyme" ticks also carry about half the time, nor will the Lyme tests detect those other infections: babesia, bartonella, ehrlichiosis, and a few more. A doc familiar with the symptom overlap among various infections would likely order tests for more than Lyme, since different meds are usually needed against these other infections.
You ask, "No visible evidence of tick bite, no rash, so no idea if/when he was bitten. Strange case?" No, not strange at all. I never had a rash or saw a tick on me, but had blazing cases of Lyme and babesiosis (similar to malaria but carried by Lyme ticks).
You also say, "I'm feeling a little better, but will pursue more testing with a different doctor" -- that's good -- "(maybe the ID doc my husband is seeing as my insurance will work there--less out of pocket)..." Be aware that ID docs are NOT known for diagnosing Lyme very frequently. They are in the 'hard to get, easy to cure' group of MDs. It goes along with the principles of the Infectious Disease Society of America (IDSA), which many ID docs belong to and would naturally tend to follow their teachings.
When you do have funds available, I would spend them on a Lyme doc rather than an infectious disease doc. It took me 20 MDs to get diagnosed finally ... Doc #20, in desperation, ran a Lyme test on me, which came back positive (!), but she said very gently as she handed me the results that I could not possibly have Lyme, because I didn't look sick enough, and she had patients (so she said) who were 'near death' from Lyme. Great.
I took my positive test and went to a Lyme specialist, who happens to be an immunologist by training, but a Lyme doc can be any specialty or none. What counts is their point of view and understanding of Lyme and its co-infections.
You might get lucky with your in-network doc, and even if the tests show a negative, ALWAYS get copies of them and keep them in a folder or binder at home. At some point in the future, you may have opportunity to see a doc who thinks bigger thoughts and would see things in those test results that unenlightened docs just don't understand.
Also know that your negative results on tests could be because the basic tests (ELISA and Western blot) do not look for Lyme bacteria in your blood. Instead, the tests look for your immune system's reaction (antibodies) to the Lyme bacteria. The problem with that approach is that the human immune system is set up to kill invading bacteria quickly, and assuming all the bacteria are dead, the immune system stops reacting. However: Lyme bacteria, unlike most other bacteria, reproduce verrrry slowly, and it is when the bacterial wall is disrupted for reproduction purposes that the Lyme bacteria are most susceptible to the human immune system and medication. Therefore treatment for Lyme needs to be longer than a couple weeks of antibiotics: the Lyme bugs will just wait it out inside your body, and hide in slimy shields they create, called biofilms, which keep the human immune system from seeing and killing the Lyme bacteria.
This works to the advantage of Lyme bacteria, which reproduce VERY slowly, so that the immune system has often packed up and given up while the Lyme bacteria are just laying back and waiting to reproduce on a longer schedule. A quick-response immune system and slow, hidden infections are not a good match from the patients' point of view.
It is this fundamental error by infectious disease docs and many others (that is, that Lyme acts like all other bacteria) is a big part of the reason Lyme is hard to get treat. All the more reason to see a Lyme specialist. My family did, and we are well as a result. Best wishes to you --
PS if you can establish financial difficulty, there are charities that will fund testing and treatment. Lyme TAP and Lymelight Foundation are the ones I have read about, but the latter may focus only on children, not sure. Bottom line is that Lyme won't go away by itself, so whipping out the credit cards or passing the hat among family and friends could be a very reasonable thing to do. I sure would. Best wishes to you --
Here's a new twist to the lyme saga in our house. My husband has had tinnitus for several months. He also has had lots of fatigue and low-T/low-D. He works nights so that can be a factor--he doesn't get enough sleep. He has gone to quite a few doctors and been tested for a variety of conditions/illnesses. He has suspected Lyme since no other illnesses have been detected. He was vaccinated with Lymerix, first two doses, around 1999-2000. He has gotten the standard tests, ELISA/Western blot, as well as the C6 B. Burgdorferi IgM/IgG.
Hard to interpret this stuff so any help would be appreciated. Here are the results:
Lyme Ab/Western blot reflex 1.45 H
Lyme Ab Interp., EIA Positive
Lyme Disease Ab, Quant. IgM <0.91 Negative
C6 B. Burgdorferi IgM/IgG 1.19 H
Husband is on Doxy, 100 MG X 2 times a day, for three weeks. No visible evidence of tick bite, no rash, so no idea if/when he was bitten. Strange case?
For me, the two western blot tests I received negative results and my doc won't do any more advanced tests. I'm feeling a little better, but will pursue more testing with a different doctor (maybe the ID doc my husband is seeing as my insurance will work there--less out of pocket) when we have the funds available. Hoping within a month . . . We just can't swing it right now, which is very frustrating but reality.
Hard to interpret this stuff so any help would be appreciated. Here are the results:
Lyme Ab/Western blot reflex 1.45 H
Lyme Ab Interp., EIA Positive
Lyme Disease Ab, Quant. IgM <0.91 Negative
C6 B. Burgdorferi IgM/IgG 1.19 H
Husband is on Doxy, 100 MG X 2 times a day, for three weeks. No visible evidence of tick bite, no rash, so no idea if/when he was bitten. Strange case?
For me, the two western blot tests I received negative results and my doc won't do any more advanced tests. I'm feeling a little better, but will pursue more testing with a different doctor (maybe the ID doc my husband is seeing as my insurance will work there--less out of pocket) when we have the funds available. Hoping within a month . . . We just can't swing it right now, which is very frustrating but reality.
A big problem of Lyme Disease testing and diagnosis is that doctors were taught that a negative means No Lyme, even though the researchers and the CDC know very well that the ELISA and the Western Blot are usually false negative in the first month after infection. During that time, it's a clinical diagnosis. Your first doctor was right to prescribe the Doxy given your tick bite and symptoms, but wrong to test you and then to tell you to stop Doxy when the test was negative.
However, taking antibiotics early in the infection often inhibits antibody formation. Your body doesn't need to make as many antibodies when the antibiotics are working to kill off the spirochetes in the blood.
As a result, people who took insufficient antibiotics in the beginning will often test false negative. You could continue to test negative for Lyme even if you have a worsening infection.
I have been in treatment for 2.5 years already for late stage Lyme and I'm still too sick to work or even drive most of the time. I can't possibly encourage you enough to do whatever it takes to see a doctor willing to prescribe a longer course of antibiotics. And the sooner the better. Bugs that aren't killed off in the first several days of antibiotics have had time to leave the bloodstream and get into the tissues where it's harder to kill. I would be looking for a couple months worth myself. This is your chance to thoroughly eradicate it.
Disclaimer: I'm not a doctor and I'm not diagnosing you! But I really encourage you to contact a local Lyme support group for names of local doctors who are willing treat you longer if appropriate. You could have a different form of Borrelia that doesn't show up on Lyme tests (such as Borrelia Miyamotoi), or you could have another tick borne disease that would likely be treated by the Doxy.
The fact that you started getting better on Doxy, and then started getting worse after stopping is a huge red flag for infection. Depression doesn't just cause lots of significant symptoms overnight.
However, taking antibiotics early in the infection often inhibits antibody formation. Your body doesn't need to make as many antibodies when the antibiotics are working to kill off the spirochetes in the blood.
As a result, people who took insufficient antibiotics in the beginning will often test false negative. You could continue to test negative for Lyme even if you have a worsening infection.
I have been in treatment for 2.5 years already for late stage Lyme and I'm still too sick to work or even drive most of the time. I can't possibly encourage you enough to do whatever it takes to see a doctor willing to prescribe a longer course of antibiotics. And the sooner the better. Bugs that aren't killed off in the first several days of antibiotics have had time to leave the bloodstream and get into the tissues where it's harder to kill. I would be looking for a couple months worth myself. This is your chance to thoroughly eradicate it.
Disclaimer: I'm not a doctor and I'm not diagnosing you! But I really encourage you to contact a local Lyme support group for names of local doctors who are willing treat you longer if appropriate. You could have a different form of Borrelia that doesn't show up on Lyme tests (such as Borrelia Miyamotoi), or you could have another tick borne disease that would likely be treated by the Doxy.
The fact that you started getting better on Doxy, and then started getting worse after stopping is a huge red flag for infection. Depression doesn't just cause lots of significant symptoms overnight.
Thanks for the update -- a few comments if I may, fwiw:
"I do not have lupus, I am not diabetic. My kidneys and liver are functioning normally." This good news, so mark it off your list off possibles.
"I'm still nauseous, have a low grade fever, diarrhea and random joint pains." All reasons to keep plowing ahead, as you already are.
"Doctor number two sent me for an ultrasound for my thyroid since he thinks he felt nodules." Good that the doc is ordering the ultrasound, will rule out anything going on there. Lyme mucks with the thyroid, so it could be an effect of that, but I wouldn't stress over thyroid generally. Nodules are not uncommon, from what I've read, and I had a few a while back. Most of them are unimportant, but docs check them out to be sure. Wouldn't lose any sleep over them, just see what the tests say.
"Also more blood tests. He told me that I don't have Lyme." No surprise there. Did you get full copies of ALL the tests? Some docs give them to you at the appointment, others make you ask for them (hey, toner is expensive!), but I would *always* ask for 'complete copies of all the tests and all their pages' just so they don't hand you a summary page and send you home. My theory: I paid for them, they're mine. When I've been blown off by a lazy clerk in the doc's office, I smile and offer to pay for the copies 'if that's an issue', and they roll their eyes and go make the copies, free. What looks uninteresting to Doc A may speak volumes to Doc B.
" I'm meeting with doc this week; and will be scheduling an appt with another doctor who will take the Lyme possibility seriously." Good for you! And take copies of the current tests for the new doc to see ... but get your own copies back.
"I have been very stressed for about six months with work, finances, etc., and I know that plays a part but doc two said I might be depressed . . . It is depressing when you don't know what is wrong with you!" Well said! Any remember, Lyme messes with the whole endocrine system, which controls emotions among other things. It's not a character flaw in you.
"So I guess I'll see what the latest round of tests show and get someone else (if he won't--and it sounds like it) to order the blood work for all and anything related to tick-borne infections, etc. I've gotten some good leads via personal messages." Good!
You're doing what I would do -- plow ahead, and keep us posted. And ... are you taking magnesium [Mg] supplements with your vitamins (if you take any)? Lyme uses up Mg in its nasty little reproductive process, and the American diet is already often low in Mg, so think about it. Any variety endingin '-ate': Mg malate, orotate, aspartate, citrate, etc. But NOT 'Cal-Mag' [a combo of calcium and magnesium] -- for some reason I don't know, it just doesn't work well in a lot of people I've talked to and read about. I still take Mg every day, and I can tell the difference when I run out and need to get some more ... and I don't even have Lyme any more.
Why take Mg? Lots of reasons in addition to Lyme using it up -- including that it elevates mood and helps sleep.
You sound like you are doing all the prudent and thoughtful things to wend your way through the medical morass. You hang on -- and keep us posted! J.
"I do not have lupus, I am not diabetic. My kidneys and liver are functioning normally." This good news, so mark it off your list off possibles.
"I'm still nauseous, have a low grade fever, diarrhea and random joint pains." All reasons to keep plowing ahead, as you already are.
"Doctor number two sent me for an ultrasound for my thyroid since he thinks he felt nodules." Good that the doc is ordering the ultrasound, will rule out anything going on there. Lyme mucks with the thyroid, so it could be an effect of that, but I wouldn't stress over thyroid generally. Nodules are not uncommon, from what I've read, and I had a few a while back. Most of them are unimportant, but docs check them out to be sure. Wouldn't lose any sleep over them, just see what the tests say.
"Also more blood tests. He told me that I don't have Lyme." No surprise there. Did you get full copies of ALL the tests? Some docs give them to you at the appointment, others make you ask for them (hey, toner is expensive!), but I would *always* ask for 'complete copies of all the tests and all their pages' just so they don't hand you a summary page and send you home. My theory: I paid for them, they're mine. When I've been blown off by a lazy clerk in the doc's office, I smile and offer to pay for the copies 'if that's an issue', and they roll their eyes and go make the copies, free. What looks uninteresting to Doc A may speak volumes to Doc B.
" I'm meeting with doc this week; and will be scheduling an appt with another doctor who will take the Lyme possibility seriously." Good for you! And take copies of the current tests for the new doc to see ... but get your own copies back.
"I have been very stressed for about six months with work, finances, etc., and I know that plays a part but doc two said I might be depressed . . . It is depressing when you don't know what is wrong with you!" Well said! Any remember, Lyme messes with the whole endocrine system, which controls emotions among other things. It's not a character flaw in you.
"So I guess I'll see what the latest round of tests show and get someone else (if he won't--and it sounds like it) to order the blood work for all and anything related to tick-borne infections, etc. I've gotten some good leads via personal messages." Good!
You're doing what I would do -- plow ahead, and keep us posted. And ... are you taking magnesium [Mg] supplements with your vitamins (if you take any)? Lyme uses up Mg in its nasty little reproductive process, and the American diet is already often low in Mg, so think about it. Any variety endingin '-ate': Mg malate, orotate, aspartate, citrate, etc. But NOT 'Cal-Mag' [a combo of calcium and magnesium] -- for some reason I don't know, it just doesn't work well in a lot of people I've talked to and read about. I still take Mg every day, and I can tell the difference when I run out and need to get some more ... and I don't even have Lyme any more.
Why take Mg? Lots of reasons in addition to Lyme using it up -- including that it elevates mood and helps sleep.
You sound like you are doing all the prudent and thoughtful things to wend your way through the medical morass. You hang on -- and keep us posted! J.
Just an update: I do not have lupus, I am not diabetic. My kidneys and liver are functioning normally. I'm still nauseous, have a low grade fever, diarrhea and random joint pains. Doctor number two sent me for an ultrasound for my thyroid since he thinks he felt nodules. Also more blood tests. He told me that I don't have Lyme. I'm meeting with doc this week; and will be scheduling an appt with another doctor who will take the Lyme possibility seriously.
I have been very stressed for about six months with work, finances, etc., and I know that plays a part but doc two said I might be depressed . . . It is depressing when you don't know what is wrong with you! So I guess I'll see what the latest round of tests show and get someone else (if he won't--and it sounds like it) to order the blood work for all and anything related to tick-borne infections, etc. I've gotten some good leads via personal messages.
Will keep you posted. And as always, advice is welcome.
I have been very stressed for about six months with work, finances, etc., and I know that plays a part but doc two said I might be depressed . . . It is depressing when you don't know what is wrong with you! So I guess I'll see what the latest round of tests show and get someone else (if he won't--and it sounds like it) to order the blood work for all and anything related to tick-borne infections, etc. I've gotten some good leads via personal messages.
Will keep you posted. And as always, advice is welcome.
Ditto Rico's comments about LLMDs being key to understanding Lyme and its diagnosis and treatment.
If you ask a doc is s/he is an LLMD, they will almost certainly say no, because it is just patient slang and not a formal degree or title. It's short for 'Lyme-literate MD', but could just as well as been called an MDWGWLIA -- ''MD who gets what Lyme is about'. Okay, just kidding, but the term LLMD is not one generally used by docs themselves, because it has no meaning in the medical profession overall.
And if you ask a nonLLMD if they are a Lyme specialist, you will likely get a bunch of docs who really don't understand Lyme say that 'Yes, I work in the Lyme area' regardless of the fact that unless they take the ILADS/LLMD point of view, they likely do not understand Lyme.
There is a split in the medical community, and that is what we patients have to understand and navigate around to find a doc who really DOES understand that a couple weeks of doxycycline often are too little too late, and are also often not the right meds for killing the nonLyme bacteria that the Lyme ticks often bring us too.
It's all very silly, a grim version of the tea party in 'Alice in Wonderland' where everything is upside down and backwards. Someday it will be sorted out, but for now, it's a delicate dance of trying to figure out which docs really know what they are talking about. Thus Ricobord's comments above.
If you ask a doc is s/he is an LLMD, they will almost certainly say no, because it is just patient slang and not a formal degree or title. It's short for 'Lyme-literate MD', but could just as well as been called an MDWGWLIA -- ''MD who gets what Lyme is about'. Okay, just kidding, but the term LLMD is not one generally used by docs themselves, because it has no meaning in the medical profession overall.
And if you ask a nonLLMD if they are a Lyme specialist, you will likely get a bunch of docs who really don't understand Lyme say that 'Yes, I work in the Lyme area' regardless of the fact that unless they take the ILADS/LLMD point of view, they likely do not understand Lyme.
There is a split in the medical community, and that is what we patients have to understand and navigate around to find a doc who really DOES understand that a couple weeks of doxycycline often are too little too late, and are also often not the right meds for killing the nonLyme bacteria that the Lyme ticks often bring us too.
It's all very silly, a grim version of the tea party in 'Alice in Wonderland' where everything is upside down and backwards. Someday it will be sorted out, but for now, it's a delicate dance of trying to figure out which docs really know what they are talking about. Thus Ricobord's comments above.
Plenty of Lyme patients show the same markers as Lupus, and plenty of Lyme patients have been misdiagnosed with Lupus.
Sometimes those "highly recommended" doctors are the worst about Lyme Disease, especially infectious disease docs and many neurologists and rheumatologists in "prestigious" hospitals or teaching institutions. They are sometimes the most dogmatic about "guidelines" and protocols.
Infectious DIsease doctors sometimes call themselves Lyme specialists. It's just us patients who call the Lyme Literate docs LLMDs (or LLNDs for the naturopaths). An LLMD follows the ILADS treatment protocols. If he's an ID doc, it's highly unlikely he'll diagnose Lyme without a CDC positive Western Blot, as he'll follow the IDSA protocols.
Hopefully whoever you're seeing will test for multiple tick borne diseases and be willing to look beyond a negative Western Blot.
It is "official," but not widely known that a whole lot of patients test negative on Lyme testing for the first 4 weeks of the infection. A negative Western Blot means nothing during this time. At a minimum, you need another Western Blot.
Sometimes those "highly recommended" doctors are the worst about Lyme Disease, especially infectious disease docs and many neurologists and rheumatologists in "prestigious" hospitals or teaching institutions. They are sometimes the most dogmatic about "guidelines" and protocols.
Infectious DIsease doctors sometimes call themselves Lyme specialists. It's just us patients who call the Lyme Literate docs LLMDs (or LLNDs for the naturopaths). An LLMD follows the ILADS treatment protocols. If he's an ID doc, it's highly unlikely he'll diagnose Lyme without a CDC positive Western Blot, as he'll follow the IDSA protocols.
Hopefully whoever you're seeing will test for multiple tick borne diseases and be willing to look beyond a negative Western Blot.
It is "official," but not widely known that a whole lot of patients test negative on Lyme testing for the first 4 weeks of the infection. A negative Western Blot means nothing during this time. At a minimum, you need another Western Blot.
Be sure to get paper copies of ALL your test results to take home with you. Things get mysteriously lost or hidden in doc's file rooms, and it's not uncommon to see more than one doc over the course of having Lyme, and what looks negative to one doc might say different things to a different doc.
Lyme is still not entirely understood in the medical world, so go the extra mile to help your docs see the whole picture, both now and later.
Lyme is still not entirely understood in the medical world, so go the extra mile to help your docs see the whole picture, both now and later.
Thanks for the reply. I'm still pressing on and am going to a highly recommended doc, don't know if he's LLMD but I'll find out later this week. I was screened for lupus, which showed up high so I'm testing for that too.
As I was reading your post, I started thinking that maybe you'd picked up Bartonella and/or Ehrlichia and/or Anaplasma (HME or HGA). You should also get tested for Babesia. I've heard that a fever within a very short time of the tick bite often indicates Babesia. (My fever started 3 days later.) You definitely need more testing.
HME and HGA testing are pretty good at standard labs. Just know that Bartonella testing is unreliable at most labs. Lab tests are very limited and look for 1 species, even though there are a dozen. Doxy early on would take care of it, but only early on.
I've never heard that RA or OA suddenly spring up along with headaches, fatigue and nausea, especially right after a tick bite. The fact that your doctor was already warning you to stay off the Internet so you don't get scared means he's following the dogma of the CDC and IDSA. Unfortunately that dogma is under increasing pressure for being too restrictive and woefully inadeqaute for diagnosing and treating the disease. I would doubt that such a doctor would go beyond a lab test result.
A Western Blot wouldn't be useful for you until 3-4 weeks or so after a tick bite. Since it takes at least 2 weeks for the test, that would give it 6 weeks to get established. I personally would much prefer to just take the Doxy, especially since you got better on it. Also, you had more than a week of Doxy, which can interfere with antibody production. You might never test positive for Lyme or the other bacteria, even if you do have one or more of them.
I don't mean to scare you, but I got insufficient antibiotics after my tick bite. It went into hiding with weird fatigue attacks once or twice a year for the next five years before chronic symptoms started. Some LLMDs say that insufficient treatment in the beginning makes it harder to treat later. I would guess that's true for me.
Also, testing a tick is completely unreliable. Ticks TRANSFER Lyme bacteria to their hosts and could test negative for the bacteria after they've already transferred it all to the human. Treatment decisions should never be based on tick testing results. (Labs that test ticks should report this in their results.) It's almost wasteful to run a useless test like this.
I'm sorry to say that I'm not at all impressed with your doctor. I encourage you to call to ask exactly what tests are pending. If Bartonella, Ehrlichia, Babesia, and Anaplasma aren't on the list, ask if the doctor will please submit a lab order for them. He should also look at your white blood cell count (can help with an Ehrlichia diagnosis) and eosinophils. (Usually they just order a CDC w/ diff.)
I will send you a private message with the name of doctor in Maryland. I strongly encourage you to go to an LLMD, even if you have to pay out of pocket. The risk of you developing a potentially chronic tick borne disease just isn't worth it when you have kids to care for.
HME and HGA testing are pretty good at standard labs. Just know that Bartonella testing is unreliable at most labs. Lab tests are very limited and look for 1 species, even though there are a dozen. Doxy early on would take care of it, but only early on.
I've never heard that RA or OA suddenly spring up along with headaches, fatigue and nausea, especially right after a tick bite. The fact that your doctor was already warning you to stay off the Internet so you don't get scared means he's following the dogma of the CDC and IDSA. Unfortunately that dogma is under increasing pressure for being too restrictive and woefully inadeqaute for diagnosing and treating the disease. I would doubt that such a doctor would go beyond a lab test result.
A Western Blot wouldn't be useful for you until 3-4 weeks or so after a tick bite. Since it takes at least 2 weeks for the test, that would give it 6 weeks to get established. I personally would much prefer to just take the Doxy, especially since you got better on it. Also, you had more than a week of Doxy, which can interfere with antibody production. You might never test positive for Lyme or the other bacteria, even if you do have one or more of them.
I don't mean to scare you, but I got insufficient antibiotics after my tick bite. It went into hiding with weird fatigue attacks once or twice a year for the next five years before chronic symptoms started. Some LLMDs say that insufficient treatment in the beginning makes it harder to treat later. I would guess that's true for me.
Also, testing a tick is completely unreliable. Ticks TRANSFER Lyme bacteria to their hosts and could test negative for the bacteria after they've already transferred it all to the human. Treatment decisions should never be based on tick testing results. (Labs that test ticks should report this in their results.) It's almost wasteful to run a useless test like this.
I'm sorry to say that I'm not at all impressed with your doctor. I encourage you to call to ask exactly what tests are pending. If Bartonella, Ehrlichia, Babesia, and Anaplasma aren't on the list, ask if the doctor will please submit a lab order for them. He should also look at your white blood cell count (can help with an Ehrlichia diagnosis) and eosinophils. (Usually they just order a CDC w/ diff.)
I will send you a private message with the name of doctor in Maryland. I strongly encourage you to go to an LLMD, even if you have to pay out of pocket. The risk of you developing a potentially chronic tick borne disease just isn't worth it when you have kids to care for.
and PS -- meant to also say: about half the time, the 'Lyme' ticks also carry other infections that need separate testing and often different meds than Lyme. Regular docs don't usually pick up on this, which is another reason to find a Lyme specialist. Based on your symptoms, a Lyme doc will know what else to test for.
I had Lyme and babesiosis, which is similar to malaria (!). My doc first treated the 'babs' and then treated the Lyme. Depending on the mix of co-infections, different docs approach it in different ways. Being on the cutting edge of medicine isn't as glamorous as I'd like it to have been, needless to say, but getting well was worth the effort. Go for it!
I had Lyme and babesiosis, which is similar to malaria (!). My doc first treated the 'babs' and then treated the Lyme. Depending on the mix of co-infections, different docs approach it in different ways. Being on the cutting edge of medicine isn't as glamorous as I'd like it to have been, needless to say, but getting well was worth the effort. Go for it!
The usual tests like Western blot are not definitive -- they are indicators, but not foolproof by any means. That you got a recurrence of symptoms after stopping the doxy sounds to (not-medically-trained) me like the meds were knocking down whatever you've got, and when the meds stopped, the bugs came back strong. So I'd guess that the doxy was effective against whatever is ailing you. That's a typical reaction, from what I read.
The problem with doxy is that if it's not started very very soon after initial infection, it is not effective against Lyme, because after a short period of time, Lyme bacteria create slimy shields ('biofilms') in the body where the immune system (and doxy) cannot reach the bacteria to kill them.
Thus doxy is effective before Lyme's biofilm stage is reached, but it's hard to tell sometimes exactly where you are in the process. (I've often thought that we may see a recent bite, but maybe there was a previous bite not noticed [on the scalp, for instance] that left behind a persisting, untreated infection that is now in a biofilm, which is why doxy doesn't always wipe out what looks like only a recent infection.)
There are other meds which can break through the biofilm, but usually it's only true Lyme docs who take that next step beyond doxy. If your current doc says the doxy you have taken would have already killed everything that ails you, then I'd find another doc for a second opinion.
Do get and keep copies of ALL your test results along the way. What seems harmless to Doc #1 may say entirely different things to Doc #2 down the road.
Lyme also can induce anxiety as a side effect of the infection, so don't beat yourself up if you feel antsy about all this. It's normal to be concerned and anxious when potentially ill, AND Lyme could be causing any anxiety you might have.
Keep us posted! Take care. (And ditto Mojogal's words of wisdom above.)
The problem with doxy is that if it's not started very very soon after initial infection, it is not effective against Lyme, because after a short period of time, Lyme bacteria create slimy shields ('biofilms') in the body where the immune system (and doxy) cannot reach the bacteria to kill them.
Thus doxy is effective before Lyme's biofilm stage is reached, but it's hard to tell sometimes exactly where you are in the process. (I've often thought that we may see a recent bite, but maybe there was a previous bite not noticed [on the scalp, for instance] that left behind a persisting, untreated infection that is now in a biofilm, which is why doxy doesn't always wipe out what looks like only a recent infection.)
There are other meds which can break through the biofilm, but usually it's only true Lyme docs who take that next step beyond doxy. If your current doc says the doxy you have taken would have already killed everything that ails you, then I'd find another doc for a second opinion.
Do get and keep copies of ALL your test results along the way. What seems harmless to Doc #1 may say entirely different things to Doc #2 down the road.
Lyme also can induce anxiety as a side effect of the infection, so don't beat yourself up if you feel antsy about all this. It's normal to be concerned and anxious when potentially ill, AND Lyme could be causing any anxiety you might have.
Keep us posted! Take care. (And ditto Mojogal's words of wisdom above.)
Yeah, I'm not chilling about this. Trying to stay relatively calm but get to the bottom of this as quickly and thoroughly as possible. The deer tick test results were that Lyme was not detected. HOWEVER, the fact that I have original symptoms and worse now after the short doxy course seem to point to the possibility that I already had the disease from some previous and unknown tick bite . . .
Thanks for replying! :)
Thanks for replying! :)
Thanks so much for replying. I'm at work right now, functioning at about 25 to 30% and waiting for preliminary blood test results. The doctor ordered at least three: test for arthritis (can't remember if it is osteo, rheumatoid, or both, Lyme test (guessing Western blot?), and one for blood infection (sorry I don't know the proper terminology). With the holiday tomorrow, it looks like I'll have to wait until Monday for the results. Wednesday I have an appointment with a highly recommended internist. Hope he's LLMD. I'll still look for another LLMD and based on the results of the tests continue to pursue.
What I find telling is that about 72 hours after I stopped the doxy I felt like I hit a wall with a return of symptoms plus the joint and muscle pain. Has anyone else out there had this happen?
Thanks again, I'll keep you posted. I'm also glad that you seem to have beaten lyme--that's awesome!
What I find telling is that about 72 hours after I stopped the doxy I felt like I hit a wall with a return of symptoms plus the joint and muscle pain. Has anyone else out there had this happen?
Thanks again, I'll keep you posted. I'm also glad that you seem to have beaten lyme--that's awesome!
If I was bit and knew it, I would not chill. Jackie has given you info but I want to stress the importance of starting to fight now so you don't end up like many of us with chronic symptoms.
Welcome -- sorry you have reason to be here, but very glad you are proactive in this situation.
The doc who told you to chill is doing the standard doc routine, which is well-meaning, but ... not always effective. There is a huge split in the medical community, which it sounds like you are aware of. This is also tick season, and yes, you are right that you could have gotten bitten and not known it ... and more than once. I never saw the tick that got me nor had a rash, but Mr Tick did a number on me, so I'm keen on getting to a *knowledgeable* doc fast.
There is a professional association (for want of a better word) of docs who understand and believe in Lyme as a serious event, and while there is no test to join the assn, they are often a very good source of a local doc who is a believer.
The group is nationwide (and even worldwide, I think) and called ILADS, International Lyme and Associated Diseases Society. I will send you the email address in a private message through this site. In the blue bar at the top of this page you are looking at, there is a button called 'my medhelp'. When you have a message from someone like me, the button will say 'my medhelp (1)', so click through. Going to do that now, it should be there in a couple of minutes.
Let us know how you do, and *hang in there* -- you are doing all the right things.
The doc who told you to chill is doing the standard doc routine, which is well-meaning, but ... not always effective. There is a huge split in the medical community, which it sounds like you are aware of. This is also tick season, and yes, you are right that you could have gotten bitten and not known it ... and more than once. I never saw the tick that got me nor had a rash, but Mr Tick did a number on me, so I'm keen on getting to a *knowledgeable* doc fast.
There is a professional association (for want of a better word) of docs who understand and believe in Lyme as a serious event, and while there is no test to join the assn, they are often a very good source of a local doc who is a believer.
The group is nationwide (and even worldwide, I think) and called ILADS, International Lyme and Associated Diseases Society. I will send you the email address in a private message through this site. In the blue bar at the top of this page you are looking at, there is a button called 'my medhelp'. When you have a message from someone like me, the button will say 'my medhelp (1)', so click through. Going to do that now, it should be there in a couple of minutes.
Let us know how you do, and *hang in there* -- you are doing all the right things.
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