Aa
Can you see the bacteria?
For those of you who have had unfortunetly made it into chronic lyme disease like myself and have the brain inflammation and central nervous system problems on top of it all....... this may sound very strange unless you have had this happen...... 3 times now when I have been in my worst way..... when I'm having all these symptoms and burnin up and everything when I close my eyes even repeativly I see the darkness from my eyelids being shut but also sooooooo many squiggly lines..... like glowing almost..... does anyone think its possible to be seeing the actual bacteria if its in the brain and or muscle??? Anyone had it happen??
If it is the actual bacteria this is very hard to deal with and really upsetting...... it would be more bacteria then anything else. I can't believe how many.
If it is the actual bacteria this is very hard to deal with and really upsetting...... it would be more bacteria then anything else. I can't believe how many.
Ears ringing and more sensitive to noises, yeah I have to agree with that as well. No, its not really floaters that I was talking about, but those have increased a GREAT deal lately as well. Ugh! And yes I have increased anxiety as well..... its like I took a pill opposite off a relaxant and it just brings fears I already had and multiplies them to where I can't let go of them or quiet my mind or feeling of anxiety =(
are you talking about the floaters that get in your vision? i've had a ton of floaters in my eyes for about 22 years now--about the same time my ears started ringing. i also got really sensitive to light and loud noises about the same time. i know everyone gets a few floaters, but as a friend of mine described it, this was like looking through chicken noodle soup. i've adjusted over the years and don't notice either symptom horrible anymore---but then, i don't have the 24 hour a day anxiety now that i had back then, either---it's only several hours a day now!
Yep - I see these every day in my left eye. They've gotten bigger over the last few years in sync with my brain symptoms getting worse.
My practitioner says they should go with treatment.
Regards
Adey
My practitioner says they should go with treatment.
Regards
Adey
Ok so when I saw the doctor, I presented the studies that I did that basically all said that based on my labs and symptoms for the last 10 months it all pointed towards chronic disease he said something like this,
I have a mixed reaction to that information. I think this lyme is overblown. It is an important disease. I think that patients with this overlying chronic symptomology may actually have something else going on, and that's been my major interest but its out there. But when you deal with these complex biofilm forming microorganisms that are genetic and very complex can it make a western blot come up positive? Well of course it can.
Don't want to post everything on here, just the jist of it to get your opinions.
Then I asked, so I'm kinda stuck in the middle of not having a 100% diagnosis from you, he said something like.... well I think we did a pcr and it was negative, of course you have to take that with a grain of sand. We have that old western blot (which I was not on antibiotics yet since december) and I think you better trust that your not enough of a antibody that your in that issue (in the meantime another md I saw said I had A LOT of antibodies and needed to see a infectious disease doctor to see what's going on) and maybe knock down this other thing that we see other patients ---------- with your symptoms, so there ya go.
I have a mixed reaction to that information. I think this lyme is overblown. It is an important disease. I think that patients with this overlying chronic symptomology may actually have something else going on, and that's been my major interest but its out there. But when you deal with these complex biofilm forming microorganisms that are genetic and very complex can it make a western blot come up positive? Well of course it can.
Don't want to post everything on here, just the jist of it to get your opinions.
Then I asked, so I'm kinda stuck in the middle of not having a 100% diagnosis from you, he said something like.... well I think we did a pcr and it was negative, of course you have to take that with a grain of sand. We have that old western blot (which I was not on antibiotics yet since december) and I think you better trust that your not enough of a antibody that your in that issue (in the meantime another md I saw said I had A LOT of antibodies and needed to see a infectious disease doctor to see what's going on) and maybe knock down this other thing that we see other patients ---------- with your symptoms, so there ya go.
Yeah ill post alittle more hopefully tomorrow that will tell alittle more about where he is coming from but I still don't understand it haha =P
Oh no, not steriods! My doc believes steroids should never be used under any circumstance with Lyme, however I have heard of other docs using them, I just don't agree with it. I couldn't help but comment on this. I agree, there are other ways to deal with inflammation and herxing. For example, I was told by my doc that there were two kinds of teas to help with herxing, Boneset and Red Root tea. I did not try either of them yet, so I can't make a claim if it really helps, but it's worth a try.
Oh boy, do I ever agree with you -- it's not clear what gameplan your doc is operating from, but taking steroids when you know you have Lyme is something I would personally not do ... but remember, I'm not at a doc and don't even play one on TV.
Inflammation is associated with Lyme, from what I read, and some people seem to suffer from it worse than others, so maybe the doc has a point there ... but I can only imagine there are other techniques to deal with inflammation than suppressing your immune system!
I take a bunch of vitamins and supplements, and from what I read, many of them are aimed at reducing inflammation and bolstering the immune system. That might be something to consider till you can get in to see a new doc.
Inflammation is associated with Lyme, from what I read, and some people seem to suffer from it worse than others, so maybe the doc has a point there ... but I can only imagine there are other techniques to deal with inflammation than suppressing your immune system!
I take a bunch of vitamins and supplements, and from what I read, many of them are aimed at reducing inflammation and bolstering the immune system. That might be something to consider till you can get in to see a new doc.
I thought it sounded pretty crazy myself =) I was thinkin...... um.... what?
That sounded like pure torture on my body..... fight..... no, surrender....... no, fight!...... no surrender. =P
That sounded like pure torture on my body..... fight..... no, surrender....... no, fight!...... no surrender. =P
Oh darn jackie..... I saw the doc today..... forgot to tell him about seeing the bacteria. =(
He offered prednisone for relief from my herxing..... and I said wouldn't that suppress my immune system? And he said that's why your flared up right now, cuse your system is overreacting to the antigen being presented, now that your weakening the microorganisms......
What do you think of that?
He offered prednisone for relief from my herxing..... and I said wouldn't that suppress my immune system? And he said that's why your flared up right now, cuse your system is overreacting to the antigen being presented, now that your weakening the microorganisms......
What do you think of that?
I know you don't need any more chores in life, but it might be really helpful going forward if you get copies of ALL the test results your current doc has done, and to always keep a set for yourself going forward. That way you can show them to a new doc (and I've been through a bunch of them) and never have to guess what the past tests said.
Some does don't care about past tests, but Lyme docs seems more open-minded, understanding that it's a process and they need data to chart a plan and calculate progress. I think by law they have to give you copies .... it can't hurt to ask. Take care --
Some does don't care about past tests, but Lyme docs seems more open-minded, understanding that it's a process and they need data to chart a plan and calculate progress. I think by law they have to give you copies .... it can't hurt to ask. Take care --
Yes I know..... thank you ladies. But I don't even have the 500 to give to the new doc otherwise I would be more then willing to give him that if its all I had.
From what I understood about my last labs I think he tested for bartonella spp...... babesiosis, ehrilcosis, anoplasmosis, lyme pcr, and a few others...... and they came back negative as far I understand except one that was some intensinal bacteria or something...... I lost my lab results but I posted it on here before ill see if I can find it and repost here =)
I agree with Ree's comments ...
I can understand your concerns about your doc ... Because there is no diploma or fixed method of treatment that a doc has to adhere to to be called an LLMD, they are all over the place ... and some of the ones I have read about seem kind of far out there. Lots of docs (including mine) don't call themselves "LLMD" because it's not an official designation or diploma or anything ... it's just a designator that patients use as shorthand for the doc being one who understands Lyme and may or may not follow the ILADS diagnosis and treatment guidelines. There is SO much not know about Lyme that there is no creed or system that LLMDs have to stick with, which means you have to keep your guard up and if a doc seems too far out there, to go get another opinion.
I won't repeat Ree's comments, but could copy and paste here what she says above, because it matches up exactly with what I think. Now, I'm not medically trained, so you can't rely on me that way, but I really would get a second opinion. I know it's expensive, but not nearly as expensive as suffering like you are. Take care -- we all want you to feel better!
I can understand your concerns about your doc ... Because there is no diploma or fixed method of treatment that a doc has to adhere to to be called an LLMD, they are all over the place ... and some of the ones I have read about seem kind of far out there. Lots of docs (including mine) don't call themselves "LLMD" because it's not an official designation or diploma or anything ... it's just a designator that patients use as shorthand for the doc being one who understands Lyme and may or may not follow the ILADS diagnosis and treatment guidelines. There is SO much not know about Lyme that there is no creed or system that LLMDs have to stick with, which means you have to keep your guard up and if a doc seems too far out there, to go get another opinion.
I won't repeat Ree's comments, but could copy and paste here what she says above, because it matches up exactly with what I think. Now, I'm not medically trained, so you can't rely on me that way, but I really would get a second opinion. I know it's expensive, but not nearly as expensive as suffering like you are. Take care -- we all want you to feel better!
To answer your question about IV antibiotics, my doctor reserves IV antibiotics for people who don't respond to oral antibiotics. I would assume each doctor is different though.
I agree with Jackie about examining the possibility of co-infections because they require a different treatment regimen. As far as the test results, I know some doctors are careful about officially labeling it Lyme without enough evidence. In my case, I tested positive for co-infections and negative for Lyme. I believe I also have Lyme based on my symptoms, but my LLMD will not call it Lyme and thinks I may just have co-infections at this point. However, if I don't get better from the co-infection treatment, she will treat me for Lyme also. Anyway, it sounds as if you need a doctor to look at the entire picture more closely since you are feeling worse and worse.
I agree with Jackie about examining the possibility of co-infections because they require a different treatment regimen. As far as the test results, I know some doctors are careful about officially labeling it Lyme without enough evidence. In my case, I tested positive for co-infections and negative for Lyme. I believe I also have Lyme based on my symptoms, but my LLMD will not call it Lyme and thinks I may just have co-infections at this point. However, if I don't get better from the co-infection treatment, she will treat me for Lyme also. Anyway, it sounds as if you need a doctor to look at the entire picture more closely since you are feeling worse and worse.
Thanks Jackie =)
You know what's funny? Is he does not like to be referred to as a llmd.... the one I see now..... and he says that he is on the lyme board.......or lyme literate board...... might be ilads but not sure...... that's why I find it funny(as in weird) that he seems to just run around it and not believe in the usual way of what I hear llmds do. Like my positive 23 41 panels of the igM western blot indicate to a lot of llmds that I have lyme considering every single symptom I have points to it and has for 9 months now, that the igM panels actually more then likely indicate chronic lyme...... and my llmd basically said that since I did not have any positive igGs that it looks like I don't have lyme for that reason, and that the positive igM there is a lot of controversy about meaning anything he said but in his opinion he considers it enough proof that "something" is going on for treatment....... but he still won't put the title on it even after my reamatologist said it is not my lupus since it has not responded to lupus treatments that were succesful before....... the neurologist said I had way to many symptoms to match any kind nearolgical disorders as well........what in the world?? I do want to see another llmd but he is 500 bucks for the first session...... I don't have it. I also keep reading that for people that have the extent of neurological symptoms like I do should be on iv antibiotics...... do you think that's true? Or does it just depend on the doc? He only has me on 250 mg of azithromycin as a precaution for my lupus. But I have just been feeling worse the last month or 2 I have been taking it..... just feels worse worse and worse.
You know what's funny? Is he does not like to be referred to as a llmd.... the one I see now..... and he says that he is on the lyme board.......or lyme literate board...... might be ilads but not sure...... that's why I find it funny(as in weird) that he seems to just run around it and not believe in the usual way of what I hear llmds do. Like my positive 23 41 panels of the igM western blot indicate to a lot of llmds that I have lyme considering every single symptom I have points to it and has for 9 months now, that the igM panels actually more then likely indicate chronic lyme...... and my llmd basically said that since I did not have any positive igGs that it looks like I don't have lyme for that reason, and that the positive igM there is a lot of controversy about meaning anything he said but in his opinion he considers it enough proof that "something" is going on for treatment....... but he still won't put the title on it even after my reamatologist said it is not my lupus since it has not responded to lupus treatments that were succesful before....... the neurologist said I had way to many symptoms to match any kind nearolgical disorders as well........what in the world?? I do want to see another llmd but he is 500 bucks for the first session...... I don't have it. I also keep reading that for people that have the extent of neurological symptoms like I do should be on iv antibiotics...... do you think that's true? Or does it just depend on the doc? He only has me on 250 mg of azithromycin as a precaution for my lupus. But I have just been feeling worse the last month or 2 I have been taking it..... just feels worse worse and worse.
one more thought -- docs who do not follow the ILADS approach to Lyme often hold that an extended infection with Lyme is not actually Lyme, but that the Lyme was cured and your immune system is over-reacting to the now-gone Lyme bacteria -- that is, an auto-immune reaction.
Some docs (nonLLMDs) therefore see nothing wrong with treating Lyme with steroids, to suppress the 'auto-immune' reaction of the body -- the only problem being that from all I read, it doesn't work, because Lyme is often NOT cured by a couple weeks of antibiotics like other bacterial infections are, for several known reasons.
You may also have coinfections that are undiagnosed, unless your doc has tested you for the likely suspects. In your situation, I would find an LLMD for a fresh look. Just my *non-medically-trained* personal opinion. Wishing you well --
Some docs (nonLLMDs) therefore see nothing wrong with treating Lyme with steroids, to suppress the 'auto-immune' reaction of the body -- the only problem being that from all I read, it doesn't work, because Lyme is often NOT cured by a couple weeks of antibiotics like other bacterial infections are, for several known reasons.
You may also have coinfections that are undiagnosed, unless your doc has tested you for the likely suspects. In your situation, I would find an LLMD for a fresh look. Just my *non-medically-trained* personal opinion. Wishing you well --
Here's another thought: I just did a search for 'lyme misdiagnosed as lupus' and it is possible because some of the test results can lead a doc to think it's lupus when it's really Lyme. If your doc is not up on the latest in Lyme, then getting a second opinion from a Lyme specialist would be my next move.
In particular, because lupus is an autoimmune disease, it is often treated with steroids, which suppress the immune system .... and suppressing the immune system is exactly the wrong thing to do in Lyme, which is a bacterial infection.
I would not change your meds on your own -- but I really really, if I were in your situation, find a new doc for a second opinion, and that doc would be an LLMD.
I'm not medically trained, but just passing along what my uneducated next move would be. Take care!
In particular, because lupus is an autoimmune disease, it is often treated with steroids, which suppress the immune system .... and suppressing the immune system is exactly the wrong thing to do in Lyme, which is a bacterial infection.
I would not change your meds on your own -- but I really really, if I were in your situation, find a new doc for a second opinion, and that doc would be an LLMD.
I'm not medically trained, but just passing along what my uneducated next move would be. Take care!
Yes, I recall now you mentioning thyroid herbs -- but think about talking to your doc about getting thyroid replacement meds to replace the thyroid hormones your thyroid isn't making. It has made a gigantic difference for me. That could at least take one source of misery off the table. Having lupus certainly makes it all harder ...
All I can say is -- keep plowing ahead, and consider seeing a new doc for a new view to what is going on. Especially with Lyme on top of lupus, maybe a second opinion from a Lyme doc would help.
I wish I could send you a magic cure -- but at least will be thinking of you and sending all good wishes. Plow ahead!
All I can say is -- keep plowing ahead, and consider seeing a new doc for a new view to what is going on. Especially with Lyme on top of lupus, maybe a second opinion from a Lyme doc would help.
I wish I could send you a magic cure -- but at least will be thinking of you and sending all good wishes. Plow ahead!
I think they might have tested it.... and the last couple of times it was actually at the low point line..... the starting line may be needing some assistance so I don't know if you remember but I started taking thyroid support by gaia herbs? All natural...... I haven't been taking it lately cuse I seem to just be getting worse lately and so I wanted to try to stop the new things I started doing to see if that would help although I don't know how long I should wait for an answer....... honestly lately I am just at the end of my rope.... in tears. I've had lupus for 11 years and have worked the entire time even cripled during my flares..... but this?? No matter what I do I only seem to be getting worse and worse...... some days I can barely make it to the restroom.....nonetheless do anything else..... I don't know what to do anymore.
Thanks Jackie =)
Thanks Jackie =)
Here's another thought: Lyme likes to take over the endocrine system generally, meaning among other things: thyroid.
I didn't start to feel good again till I was tested for thyroid levels and started on a prescription for that. It's aMAZing. Maybe ask your doc next visit.
Hope you feel better soon! J.
I didn't start to feel good again till I was tested for thyroid levels and started on a prescription for that. It's aMAZing. Maybe ask your doc next visit.
Hope you feel better soon! J.
I've been on d3 for about a month now and just started the magnesium again..... despite what my doc says..... I have to try it again, just a low dose 300mg a day.
Magnesium supplements helped me mood-wise ... and Vitamin D, if you don't get much sun. I also take Vitamin D-3, but probably just general Vitamin D is okay too.
Yeah it definetly has made me touchy.... I'm alittle more irratble at times..... and I worry even more then I used to, most times I can't shut it off and I hate it. =)
I do try to control it and think about or do other things (if my conditions will allow, which most days it doesnt) but even then sometimes it doesn't help or the worry comes back =(
I do try to control it and think about or do other things (if my conditions will allow, which most days it doesnt) but even then sometimes it doesn't help or the worry comes back =(
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