Aa
Relapse without treatment???
Hello,
Is is possible to be infected, have symptoms that slowly resolve over a period of 1 year witout treatment, and then 16 years later the symptoms re-appear??? Dr's are now syspecting that I have Lyme, and my ELISA test was indeterminant. Dr's have tested me for a whole wack of other possibilites (MS, ALS, Lupus, RA, MG) and all came back negative. Only my ELISA test was indeterminant.
Is is possible to be infected, have symptoms that slowly resolve over a period of 1 year witout treatment, and then 16 years later the symptoms re-appear??? Dr's are now syspecting that I have Lyme, and my ELISA test was indeterminant. Dr's have tested me for a whole wack of other possibilites (MS, ALS, Lupus, RA, MG) and all came back negative. Only my ELISA test was indeterminant.
Just reading your blog, how are you feeling now on treatment for nine months? I felt much worse after abx about a week after I took them so bad I had to quit for three weeks and then resume. It's been over three months and haven't seen a whole lot of improvement. Let me know how you are making out.
Shoot..... 2 years.... It has to turn soon.... I think this is also a slow process because it's hard to kill off all the bacteria, but then also your body needs to heal from the damage it has caused as it takes time to heal neurological issues....
My burnt smell hallucination is worse today.... Almost makes me gag... But it can switch on and off in a matter of seconds..... I guess I will take this as a good sign.... Maybe the meds are actually starting to take affect...
I picked up the Lyme test from my Dr. which I was told was indeterminate, and it said negative to lyme!!! I spoke to my Dermatologist who ordered the Lyme test back in Dec and spoke to her. She had indicated that she spoke to the Lab technician and he had told her that they "detected something, but not sure what it is" Well, on the report, all they said was negative for Lyme via ELSIA and Western Blot, but in the interpolation all they said was results should be interpreted via clinical signs and symptoms.... That's it???? Could they have mentioned that they found something else and don't know what it is????? Now I'm going to have to go tell my ID Dr. this verbally....
From what I was told, the Lyme testing here in Canada is pathetic.... Mostly because they say less than 50 people per year get it and really it will never get any better untill people start worrying anout it.... I told a few people that I have it, and only a couple knew Lyme exists..... The guys in the lab hardly ever even get a request to do the test.... This is also worrisome.... My ID Dr. said they have no clue what they are looking for. Supposedly my ID Dr. sends tests to California for Lyme, but in my case he didn't even bother... He just started treating me..... I suppose the binder of medical records and tests that I have built up over the past 10 months is proof enough....
My burnt smell hallucination is worse today.... Almost makes me gag... But it can switch on and off in a matter of seconds..... I guess I will take this as a good sign.... Maybe the meds are actually starting to take affect...
I picked up the Lyme test from my Dr. which I was told was indeterminate, and it said negative to lyme!!! I spoke to my Dermatologist who ordered the Lyme test back in Dec and spoke to her. She had indicated that she spoke to the Lab technician and he had told her that they "detected something, but not sure what it is" Well, on the report, all they said was negative for Lyme via ELSIA and Western Blot, but in the interpolation all they said was results should be interpreted via clinical signs and symptoms.... That's it???? Could they have mentioned that they found something else and don't know what it is????? Now I'm going to have to go tell my ID Dr. this verbally....
From what I was told, the Lyme testing here in Canada is pathetic.... Mostly because they say less than 50 people per year get it and really it will never get any better untill people start worrying anout it.... I told a few people that I have it, and only a couple knew Lyme exists..... The guys in the lab hardly ever even get a request to do the test.... This is also worrisome.... My ID Dr. said they have no clue what they are looking for. Supposedly my ID Dr. sends tests to California for Lyme, but in my case he didn't even bother... He just started treating me..... I suppose the binder of medical records and tests that I have built up over the past 10 months is proof enough....
Look on the bright side: at least you're in motion and not still trying to figure out what hit you. It's a long road for everyone, but finding out we're ON a road is a significant achievement.
I remember Amy Tan's recounting of her hallucinations. I haven't heard of those happening to anyone else, so it's probably a fairly rare occurrence.
Like you, my thought process and initiative are affected when I'm not feeling well: it's a significant degradation of my ability to think and effect action. It's the bugs.
And it is a long road. When I was finally diagnosed, I figured I'd slap the bugs around and be well in a couple of months. That was a couple of years ago. I have decided to be resolute and take a long view, so that I am not disappointed and crushed when I have a bad spell. Seems to work pretty well.
Memorize the good days, and know they will come again.
I remember Amy Tan's recounting of her hallucinations. I haven't heard of those happening to anyone else, so it's probably a fairly rare occurrence.
Like you, my thought process and initiative are affected when I'm not feeling well: it's a significant degradation of my ability to think and effect action. It's the bugs.
And it is a long road. When I was finally diagnosed, I figured I'd slap the bugs around and be well in a couple of months. That was a couple of years ago. I have decided to be resolute and take a long view, so that I am not disappointed and crushed when I have a bad spell. Seems to work pretty well.
Memorize the good days, and know they will come again.
This is incredible..... Looks like allot of people have this "burnt" smell.... What else is going to happen next??? I probably have over 20 different symptoms, and yet new ones keep popping up (mind you some have seemed to resolve... for now) At first this smell didn't bother me much, but it's starting to get to me... Kind of like Chinese Water Torture.... Who would think that this would be so bothersome.... I had a look on the net and Amy Tan had hallucinations! Now that would be scary.... 8-(
I noticed that my spelling (and thought process) had headed south.... I've been through this before, and then it gets better, but now it's been as bad as it's ever been.
I hope the meds start to improve things soon. It's been only 4 days thus far, and I probably have another 300 to go.... 8-(
Herxes are different for everyone: some people get none, some get a lot, and how strong the Herxes are varies from person to person and time to time in the same person.
Doesn't matter whether IV or oral abx ... a Herx is the result of the bugs dying off and releasing toxins into your body, hence you feel lousy. I never had particularly bad Herxes compared to how bad I felt pre-abx. Other people are the other way around. Depends on what disease you've got, what drugs you're on, and your particular body chemistry.
My LLMD says (and I have read) that olfactory hallucinations (smelling stuff that isn't there) is common in Lyme. Mine comes and goes. A couple of weeks ago, I thought I smelled smoke and was running around checking everything. It's possible it was the people downstairs burning their dinner, but I don't know for sure.
My smell-o-vision is usually a nauseating smell, along with a brief shiver and slight disorientation for a few minutes. Author Amy Tan, who has written about her adventures with Lyme disease, called it a 'dead rat' smell, and I agree, it's as bad as you can imagine a dead rat would be. Worse than an open sewer, and I *have* been near those.
Doesn't matter whether IV or oral abx ... a Herx is the result of the bugs dying off and releasing toxins into your body, hence you feel lousy. I never had particularly bad Herxes compared to how bad I felt pre-abx. Other people are the other way around. Depends on what disease you've got, what drugs you're on, and your particular body chemistry.
My LLMD says (and I have read) that olfactory hallucinations (smelling stuff that isn't there) is common in Lyme. Mine comes and goes. A couple of weeks ago, I thought I smelled smoke and was running around checking everything. It's possible it was the people downstairs burning their dinner, but I don't know for sure.
My smell-o-vision is usually a nauseating smell, along with a brief shiver and slight disorientation for a few minutes. Author Amy Tan, who has written about her adventures with Lyme disease, called it a 'dead rat' smell, and I agree, it's as bad as you can imagine a dead rat would be. Worse than an open sewer, and I *have* been near those.
I've been looking on the net regarding the Herxheimer reaction, and I've seen allot of conflicting information. Thus far I haven't noticed anything different. Symptoms always seemed to fluxuate previously, so I would say it's difficult to make any absolute assessment if it has indeed changed.
Does the Herxheimer usually occur when you take oral meds? Or just with IV? How common is it??? The only thing that I have noticed thus far is that I usually had times when i had no taste or smell, now I actually have had a couple of periods where I smell what appears to be Ashes from a fireplace..... in a place where no fireplace exists!!!
Arrrgh....
Been taking the meds now for 48hrs, and I don't feel any different.... No side effects or change in symptoms at all.... The Dr. told me that I might feel worse after starting the meds.... In a way I actually hope i do feel a little worse as it indicates that the meds are actually effective!
Sounds like a reasonable doc you have there.
I was afraid of the side effects of the abx, but they were nothing compared to the disease effects. I was on the same drugs you are, and some other ones too, and they were not a problem at all -- and I am a real lightweight when it comes to meds.
Keep us posted --
I was afraid of the side effects of the abx, but they were nothing compared to the disease effects. I was on the same drugs you are, and some other ones too, and they were not a problem at all -- and I am a real lightweight when it comes to meds.
Keep us posted --
Hi Jackie,
The Infections Disease Dr said he’s pretty sure that I have Lyme. Allot of my symptoms and onset seem to match up with what he has seen previously, and they pretty well have ruled out everything else it could be via tests. He placed me on 500 mg X 2 per day of Metronidazole, and 250 mg X 2 per day of Azithromycin. Said that I will do that for 2 months, and then probably change to different antibiotics for another couple of months, and then switch once again. Said I should expect to be on meds for about 1 year, but it may vary depending on how I respond. He is also ordering up repeat Lyme tests here in Canada, but indicated that most likely it will come back negative, or indeterminate again, but said that occasionally it does switch to positive during antibiotic treatment. If I turn positive, he will most likely do a round of IV antibiotics.
He indicated that the meds might make me feel sick at first, and also that once the meds start to work, my symptoms will most likely intensify, but that I need to stick it out and over the next couple of months or so I should start to see some improvements. Hope he is right!
Thanks to all on this board for your help…. It’s tough getting through this, but you have to be grateful that this is at least treatable. So many diseases that have symptoms such as this are not….
Buddy,
The Infections Disease Dr said he’s pretty sure that I have Lyme. Allot of my symptoms and onset seem to match up with what he has seen previously, and they pretty well have ruled out everything else it could be via tests. He placed me on 500 mg X 2 per day of Metronidazole, and 250 mg X 2 per day of Azithromycin. Said that I will do that for 2 months, and then probably change to different antibiotics for another couple of months, and then switch once again. Said I should expect to be on meds for about 1 year, but it may vary depending on how I respond. He is also ordering up repeat Lyme tests here in Canada, but indicated that most likely it will come back negative, or indeterminate again, but said that occasionally it does switch to positive during antibiotic treatment. If I turn positive, he will most likely do a round of IV antibiotics.
He indicated that the meds might make me feel sick at first, and also that once the meds start to work, my symptoms will most likely intensify, but that I need to stick it out and over the next couple of months or so I should start to see some improvements. Hope he is right!
Thanks to all on this board for your help…. It’s tough getting through this, but you have to be grateful that this is at least treatable. So many diseases that have symptoms such as this are not….
Buddy,
If your MD is sympathetic, you could send him to (or, if you can, print out and take to him) material on the ILADS [dot] org website, called 'Treatment Guidelines', by Joseph Burrascano MD. (Just google "ilads treatment guidelines" and it's the first hit.) It's very readable, but also detailed and specific for MDs on treatment approaches. Burrascano is one of the leaders in treating Lyme.
ILADS usually makes non-LLMDs sneer, because it's not in agreement with the CDC's "so what" attitude toward Lyme. But for an MD who is sympathetic or at least open minded, the ILADS material is invaluable.
Good luck, let us know how it goes at your appointment.
ILADS usually makes non-LLMDs sneer, because it's not in agreement with the CDC's "so what" attitude toward Lyme. But for an MD who is sympathetic or at least open minded, the ILADS material is invaluable.
Good luck, let us know how it goes at your appointment.
Thanks for the advice! I was told by the Dermatologist that I needed IV, but she isn't that familliar with Lyme. Good to know that oral works too.
I'll hav e to see how things go tomorrow.... Hopefully I can get a more firm diagnosis from someone who has experiance about Lyme. If I get pushback, I probably will have to look at getting help from the US. Clinically I'm in pretty bad shape and they rulled out (as best they can) all the other possibilities. It has to be something.
Thanks!
I'll hav e to see how things go tomorrow.... Hopefully I can get a more firm diagnosis from someone who has experiance about Lyme. If I get pushback, I probably will have to look at getting help from the US. Clinically I'm in pretty bad shape and they rulled out (as best they can) all the other possibilities. It has to be something.
Thanks!
Sounds like you've located a couple of good candidates among MDs up there. Many LLMDs here in the US don't use IV treatment, just oral treatment using pills or liquid, depending on the coinfections. Sometimes IV is used, but I don't have the feeling it's done commonly or as a first resort. Oral abx are said to be just as effective in most cases, and less risky to the patient (due to risk of infection from IV/PICC lines).
If your LLMD is sending the test out, it may be to IgeneX labs in California. They do testing for a number of the LLMDs here in the US. The CDC/IDSA people sneer at IgeneX, but .... so what. I've no idea how the Canadian medical authorities would react to a diagnosis based on an IgeneX test.
Many folks on this site have been or are on longterm oral antibiotics, and it can work just fine. (PS I'm not in Canada, but in the US.)
Good luck to you --
If your LLMD is sending the test out, it may be to IgeneX labs in California. They do testing for a number of the LLMDs here in the US. The CDC/IDSA people sneer at IgeneX, but .... so what. I've no idea how the Canadian medical authorities would react to a diagnosis based on an IgeneX test.
Many folks on this site have been or are on longterm oral antibiotics, and it can work just fine. (PS I'm not in Canada, but in the US.)
Good luck to you --
Thanks for the input! I agree, Government run healthcare does have it's problems. It seems that the dr's here are also scared because of what they see happening in the US. It amazes me on how something like this could happen.
The private dr I saw (He is a bit of a rebel, hence the reason for being private) is somewhat familiar with lyme. He has seen numerous cases. He indicated that the Dr I am being referred to apparently is a good LLMD (the one other than the one being threatened) However, he won't put me on IV antibiotics without a positive test. (Supposedly he will be sending a test to the US, but not sure if that would count as a positive test) But the private dr said he will most likely put me on long term oral antibiotics. Not sure if that will do me any good since i have numerous neurological issues.
I'm in Toronto, so not too far from the US border. Did you visit the doctor in the US, and then bring back med's to Canada??? Did you administer the IV antibiotics yourself??? So many questions and headaches. Not something you want to deal with when your sick.
Thanks
The private dr I saw (He is a bit of a rebel, hence the reason for being private) is somewhat familiar with lyme. He has seen numerous cases. He indicated that the Dr I am being referred to apparently is a good LLMD (the one other than the one being threatened) However, he won't put me on IV antibiotics without a positive test. (Supposedly he will be sending a test to the US, but not sure if that would count as a positive test) But the private dr said he will most likely put me on long term oral antibiotics. Not sure if that will do me any good since i have numerous neurological issues.
I'm in Toronto, so not too far from the US border. Did you visit the doctor in the US, and then bring back med's to Canada??? Did you administer the IV antibiotics yourself??? So many questions and headaches. Not something you want to deal with when your sick.
Thanks
As if it's not bad enough being ill, you've got the government telling you and your doctor what you're allowed to do. [Is everybody out there listening? This what happens when the government takes over medical care! Just because something is 'free' doesn't mean it's worth having.]
Buddy88, can you get yourself to the US for treatment? Once established as a patient, I began to see my LLMD only every three months for maintenance. Ontario being a big place, I don't know how far you are from the US border.
That's my best suggestion, and if you are able to do that, research your potential LLMDs carefully to be sure they are ILADS-oriented and not some of the wackadoodle docs who are out there claiming to be ILADS-types. It's not easy, but it's doable, if you crawl the web and sites like this. Please do NOT post potential MD's names here in public, because of the same harrassment factor you are seeing in Canada, but here in the States, at least for now, MDs still have the ability to practice medicine without asking Uncle Sam first.
Best wishes to you -- let us know what happens and how it goes.
Buddy88, can you get yourself to the US for treatment? Once established as a patient, I began to see my LLMD only every three months for maintenance. Ontario being a big place, I don't know how far you are from the US border.
That's my best suggestion, and if you are able to do that, research your potential LLMDs carefully to be sure they are ILADS-oriented and not some of the wackadoodle docs who are out there claiming to be ILADS-types. It's not easy, but it's doable, if you crawl the web and sites like this. Please do NOT post potential MD's names here in public, because of the same harrassment factor you are seeing in Canada, but here in the States, at least for now, MDs still have the ability to practice medicine without asking Uncle Sam first.
Best wishes to you -- let us know what happens and how it goes.
I saw a private Dr. last week and he stated that their is a very good chance that I have Lyme as I have some very distinct symptoms, but it will be very difficult to find anybody to treat me. He said that their are only 2 dr's in Ontario that are treating Lyme, amd one of them is being threatened of losing his license and will not see any new patients. I did watch the movie Under My Skin, and it's shocking one how the Dr's are being persecuted and sued by the insurance and medical community. It's no wonder nobody wants to treat Lyme patients.
At least I have found a couple of Dr's who seem to think I have lyme and it's on the radar. The first dr wanted to start me on antibiotics but then backed off and said she needs to follow the government guideline and I need a positive on the Canadian test. I tested indeterminate in the Test, a test which has a 90% false negative rate. The private Dr said that indeterminate should be Taken as a positive. I guess will have to keep pushing. But it looks like Canada and the US might be like pushing against a brick wall.
Are their other options out there??? The rest of the world can't be so anal. Is Europe any better? How about Asia??? I don't just want sit here and wait.
Thanks,
Thanks for the input! I have been researching all the various sites and have gained some knowledge.
Still trying to figure if the symptoms fit and figure out if this is what I have..... The dr's still arn't sure but now suspect that it is lyme. But they said they need medical proof before they treat me....
All I know is that it has affected my entire body at one point or another. I have had both sensory and motor symptoms and it has pretty well shelfed me..... I have an appointment with a dr. that supposedly has some knowledge about lyme. Have to see what he says.
Funny thing is I hope I actually have lyme now. After Dr's started taking MS, then ALS, Lime looks pretty good! At least it is treatable (If you can get treatment that is... which is the sad part) The fact that my symptoms seem to cycle over a span of weeks pretty well rules out ALS, and doesn't seem to fit with MS. My tests done (And I have done allot) all came back normal. Only my lyme test came back indeterminant.
I have not had this experience but have read of similar stories. I did have a treatment-free remission where my symptoms got better on their own, but it didn't last 16 years. I also think that I had a quiet infection for years before I became obviously ill.
There is a popular Lyme documentary called "Under Our Skin." It's on the Oscar short list for best documentary, last I heard. Anyway, one of the main characters depicted, "Mandy," was given the standard few weeks of antibiotics for Lyme when she was about 18. I'm not sure how long she was well after that, but the movie starts with her at age 28 and extremely ill from inadequately treated Lyme. You can search the film title to read more about her case and watch clips online.
I personally do think that Lyme and co-infections can go dormant only to wreak havoc at some later time when we are weak (like stress, major life event, sick from something else). I also think that is why long term treatment is necessary to fully erradicate. I don't want to go through this again years later.
Have you found the ILADS website yet? That is a good source of info. If you like books, there is a good one called "Cure Unknown" by P. Weintraub that is in many libraries or in paperback through amazon. Columbia University also has a Lyme and tick born infection research program with some good online info.
There is a popular Lyme documentary called "Under Our Skin." It's on the Oscar short list for best documentary, last I heard. Anyway, one of the main characters depicted, "Mandy," was given the standard few weeks of antibiotics for Lyme when she was about 18. I'm not sure how long she was well after that, but the movie starts with her at age 28 and extremely ill from inadequately treated Lyme. You can search the film title to read more about her case and watch clips online.
I personally do think that Lyme and co-infections can go dormant only to wreak havoc at some later time when we are weak (like stress, major life event, sick from something else). I also think that is why long term treatment is necessary to fully erradicate. I don't want to go through this again years later.
Have you found the ILADS website yet? That is a good source of info. If you like books, there is a good one called "Cure Unknown" by P. Weintraub that is in many libraries or in paperback through amazon. Columbia University also has a Lyme and tick born infection research program with some good online info.
Thanks for the input, but do you think it possible to be in remission for up to 16 years????
Others more knowledgable than I should comment, but to my understanding, Lyme and coinfections may calm down after the initial infection, but they are only hiding out in your body. They can indeed pop up again later, from what I read and from what people have posted here.
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