At The ER

Also curious if anyone has/have any of those symptoms I have? For me, it just feels like I am going nuts all of the time. Right now, I am trying my best to stabilize. I want to try things, and I plan on it.

Changing my schedule (near impossible)
Sleeping more... but how?
Trying DNRS
Trying new binders like charcoal, clays, etc.

Oh, I'm sure. It does help bring comfort to know this, but I do feel bad because I wouldn't want anyone else feeling as bad as I do.

I'm very sorry to hear that. Yeah, it sucks being told that. I've been doing this crap since 2011 and over the years more symptoms pilled on. I'm too young for this crap! Lol. I am just saying, I have all of those symptoms most all of the time. It's not like I have 2 things and then another 2, a lot of these things are consistent. Not to mention, this is without treatment, so it's not just a herx or anything and it's not like I can stop the meds to get some kind of "break". So I doubt anyone can blame me for being afraid to jump in and treat it, especially without a true plan ahead of me. The plan that I have now doesn't really feel like the most supportive one, so I have been pushing to get to the bottom of it.

Speaking on that, I just had an appointment with one of my doctors. He, (who also works in the same office as my Lyme doc) said to go ahead and just try the activated charcoal and that he has no idea why my other doc would not want me to try it. He said he agrees with me and that I make valid points about using it for detoxing the bad crap out. He said at the very least I may see no benefit, but he knows it is quite safe. There are many studies about this. Does anyone have any real problems with activated charcoal and/or clays, such as bentonite? So far, everyone says they tolerate them pretty well.

Ugh my ear is ringing so loud right now, it's making it hard to keep my left eye open - and that's the good one these days! Lol.

Hi Forest,
I’m sorry for what you are going through. For me the mental symptoms of panic attacks, anxiety, depression, random crying spells, suicidal thoughts can be even more debilitating than dealing with the physical symptoms muscle/joint pain, fatigue, brain fog etc. It’s a very helpless and scary feeling being out of control of your thoughts and also trying to deal with an illness that is difficult to treat and understand. I was curious if you feel that way separating the mental symptoms from the physical which one feels harder to deal with if that makes sense?

I think on one of your posts you mentioned how could some people drive or function the way they are. It’s important to remember all tick borne illness is unique to each individual as to the symptoms and severity they experience and there are so many variables to factor in for each person. My symptoms have varied over the years as far as my functional capability. Esp once you start treatment it’s usually worse in the beginning and then you start experiencing some better days. Unfortunately science has not caught up yet and it’s a very controversial disease ugh.

As far as activated charcoal goes I took it through most of my treatment on antibiotics and sometimes during herbal treatments. Not taking at the moment though bc my doc hasn’t recommended and it’s difficult on my med schedule to have the 2-3 hours needed in between. I did find it helpful though during past treatments. But I think it’s something you would want your doctor to be on board with.

I was also curious how long ago you first started experiencing symptoms and how long has it been with the more severe symptoms you are experiencing now?

I know for me prayer has been a huge comfort to me. I’m not sure if you believe in a Higher power or religion but if there is ever a time I know for me that is what saved me many times bc it was too much for me to handle on my own. I’ve felt the presence and comfort of God more than I ever have bc of my illness. But I know this kind of thing is very personal and I hope it’s not offensive to you in any way. I just thought I would share.

Post Edited (Sarahjane09) : 11/5/2021 12:47:06 PM (GMT-6)

You're asking if anyone has had the symptoms on your list? Yes, I have had all of those except for heavy breathing and musical ear syndrome. And many more. I know you have other symptoms as well that you have mentioned that aren't on the list. This can be an overwhelming illness, with so many symptoms at once. That list doesn't seem unusual to me at all, which I say just to reassure you that we believe that you have a lot going on because many of us have been in a similar situation. I know it's hard to believe when people say they understand, but sometimes we really do understand.

Regarding cortisol testing, I have read that the best test to get is a four-point saliva test (meaning saliva samples from four times of day). A 24-hour urine test will tell you the total amount of cortisol you produce in that time period, but it will not tell you when it is produced. For example, you might spike way too high at bedtime and have trouble sleeping, but a 24-hour urine test won't tell you that. I had very high cortisol in the morning and low at the other three times of day, so my 24-hour urine test was normal, but my cortisol timing was very messed up, and I was glad to have had the data from the multi-point test so I could address it.

I also have read that if you are producing very little cortisol, then you might react very strongly to the bits that do get produced. High cortisol can mean low testosterone as well, so it might be informative to have a full panel of hormones (including thyroid) tested, if you can. You have mentioned suspecting HPA axis dysfunction, so perhaps you are aware of how all the hormone systems interact and affect each other. This is why I always recommend that people not look at a single hormone (such as cortisol) in isolation, as it often doesn't tell the whole story. That said, I totally understand that not everyone can afford comprehensive testing, and sometimes only TSH and cortisol will be covered by insurance.

First off, I just want to say that I am very sorry to hear that. That is very reassuring. yes, it really is hard to believe that someone else could be experiencing this kind of stuff. Right now I have such a massive migraine with extreme head pressure. Talking about it helps because it naturally de-stresses the body, which is critical in healing!

I have been wanting to do a 4 point cortisol test for awhile now. I am thinking of simply ordering my own. I take my sweet time and make sure to research as much as I can before going at it, as it's not one of those things where anybody will do right. These tests can all have different outcomes. With that said, I will be sure to find a reputable company with expertise in testing.

I completely agree with that. Doing a panel of hormones could be beneficial after doing a cortisol test, and sometimes at the/around the same time. I can't help but feel like this stuff is important. This is why I am going to start looking into all of this today.

You are all very helpful. Even if I do know some of this stuff. it helps spark more and more information. Everything old leads to something new. It's a big part of how I learn!

Forest said...
RobWireGuy - Before I forger, I am curious where I could get a good CD57 now that IGenX doesn't offer this anymore. They were who I went through for my Babesia diagnosis.

Also, what would be your reasons for getting this checked?

Take a look at this article.....gets into all the details:
https://pubmed.ncbi.nlm.nih.gov/11222912/

Unfortunately I got my test through a LLD.
Along with a positive IFA Test, it was the only "smoking gun"
I had in my diagnostic testing - not enough BANDS in my Western Blot.

Rob

Just to be clear, what do you mean by LLD? Lyme Literate? Just wondering if there's a difference from that and LLMD.

This is great info, thanks! All I do is read these days. When I was young, I was never much of a bookworm. If there's any positive side to this, it's made me really fight to learn and that is one thing I want to stay with me for the rest of my life.

Honestly, there is only one thing that works for me and in our world, it's it's sort of out of place for many to have it be considered a "need", but this is where I completely disagree as there are people on this earth that are simply different. I know I am different, but we are all the same in many ways. With that said, my "need" is a companion. By that, I mean a girlfriend. I ALWAYS seem to do better with a partner and I can't explain this to many as they wouldn't understand, but I know what fits me and what works for me. Maybe I'm just deficient in oxytocin or something, but I feel right when I am with someone special. Maybe it's not like a God, but to me, it's something like that. Having a person like that really makes me feel more comfortable, but not in the way most would assume. It's the way I feel about being there for my daughter. I do not really have a family, but I love the one I have put together, but I do not see my daughter often currently due to this whole situation and so her mother is taking care of her and I do not want my daughter seeing me like this under any circumstances. Ever. With that said, having a parter would help so much. Not just to help me out, but for me to give. I miss giving. I don't have anyone to give to. I feel extremely out of place when I don't have someone. I've tried animals, I've tried just having friends. It never did the trick. It could potentially be because I never really had a family, so I want my own, and I have had that a few times only to be without it again and again. Although that might sound strange - that to me is the closest thing that feels like God. I am a family kind of man and I only want the best for others. I just want to give to the world, even if it means sacrificing my happiness. Admittedly, I am sitting here tearing up about it because I miss her, and I miss having another person. Memories haunt me constantly due to this whole thing, being stuck and feeling so lonely as I sit here with no one to text or call me. I have always had to reach out and always had to be the one to ask for something. It sucks. This all made me want to reinvent my life. I'd certainly made me stronger, yet so weak and fragile at the same time.

My views are my views, as they are yours, and I have so much respect that. I'm agnostic, and you are what you are. I am happy that you take time to look into your view, as have I. For me this is what makes the best sense to me. I suppose it shows, being how I grew as logical yet emotional at the same time. I suppose it can be considered the best of both worlds by many, but then there are the few that may disagree. I simply can't be that way, because I believe that anything is possible, hence why I am agnostic and why I believe I am best fit with a partner as I believe it feels right. Isn't that what we are here for, to go after what feels right?

“ Just to be clear, what do you mean by LLD? Lyme Literate? Just wondering if there's a difference from that and LLMD.“

LLD - Lyme Literate Dr

LLMD - Lyme Literate Medical Dr

LLND - Lyme Literate Naturopathic Dr.

loski01 said...
Deejavu - I saw nothing wrong with your reply. Sometimes a more direct approach is needed to keep someone on track when lost in the mix of this. I almost didn’t schedule with Dr. A.C because she was rather firm with me on the phone with the direction she wanted to take treatment. I was like what test for Lyme again? I’ve done so many. But no, she found everything with her tests. She laughed when I brought it up and said it’s what she knows works - obviously it’s worked for her.

It’s easy to get lost in so much advice. Hell it’s easy to get lost just with neuro symptoms and sometimes the hope-ium keeps us going.

At this point it may be a disservice within the forum to keep throwing such a wide range of medical advice on so many topics/posts from so many people to someone who really needs a qualified doc to take the wheel?

I mean all of this kindly and it’s what I would’ve wanted for myself.

Thank you Loski for your thoughtful and honest words, they mean so much to me. People including myself (when I was sick) become very lost especially before I found Dr. Jernigan's protocol from his book. Even when I was reading his book some of what he wrote didn't make sense to me and other members were direct with me to put me back on track and I appreciated that. We all communicate differently.

That said did Dr. A.C. have lyme herself? Just curious. I hope the treatment plan is working for you. I'll tell you something a member said to me when I first joined a lyme forum (not this one). She said to me "Denise, having a positive attitude is half the battle in this disease"... I never forgot those words at when she first said them to me I honestly did not believe her. It was after I became well that I knew exactly what she meant. I wasn't always positive (especially when I had money problems) but I guess it's safe to say that basically I'm a positive person.

Do you know the quote by Charles Swindoll about attitude? I live by the words he wrote below:

The longer I live, the more I realize the impact of attitude on life.
Attitude, to me, is more important than facts.
It is more important than the past, than education, than money, than circumstances, than failures, than successes,
than what others think or say or do.

It is more important than appearance, giftedness or skill.
It will make or break a company… a church… a home.
The remarkable thing is we have a choice everyday regarding
the attitude we will embrace for that day.

Thanks again! Denise

Oh, don't I know it. I've been going through doctors for so many years now. Not many 28 year olds can say they have seen over 300 doctors and have a care time of 14 doctors (As I have over 20 diagnostics which is just crazy and I don't believe a lot of them are actually what they are at this point). I also have taken so many medications. I have been through it, and I have been doing this suffering thing for too long. I have been through the very worst more than once, so this is why I am complaining. This is why I am the way I am. I'm not new to this. I feel as though that's how some might view me, so I feel it's necessary to put it out there. I am mad. I am just so angry at the way things have been. When you reach the level of ill that I am (which I feel some of you are, or have been quite possibly), you feel hopeless because it is a feeling of "stuck". I am not in the same world I was in May 14th though. I was not well before, but then on May 15th, I woke up to my brain being in another dimension, and I have been stuck there ever since. It got excruciating since that day. That is why I thought this had nothing to do with this and that it was I got drugged and was back in withdrawal or something, because most in those parts say this is way worse than anything else - and whatever it is, the way I am feeling certainly feels like "worse than anything else", and I don't know how that can accurately be measured, but I have been a medical anomaly for quite some time. Going to the ER and various places to find such random results with no explanation, so now that I know it's this whole thing, it's a bit more comforting. It will be even more comforting when I get more test results, to better see what is happening so I can go after it without just "killing", because it could be actually making something else worse.

I'm curious - people keep saying that others are experiencing worse or more terrifying symptoms. This shouldn't be measured as some kind of competition, but what's worse than going blind in one eye (don't say going blind in two!), and having the loss of ability to move your body? Being told you might have MS or ALS is quite terrifying. I also have issues hearing out of my left ear, but those things are less bothersome in my opinion than the vertigo/anxiety, as I mean... they affect me in a way that makes me want to scream. I would also certainly argue that suffering is worse than death, as I have felt some of the worst suffering imaginable. Also, I can't really imagine much worse than anaphylaxis, which is the only thing I have yet to have, and crossing my fingers that it doesn't come up, but breathing comes especially hard to the point where I do gag. I mean red rashes that go through my entire body, complete fear all of the time, I feel like I am constantly falling when on a flat surface, I feel like my body is flaming hot, I get a change of constipation one day and diarrhea the next, etc. I mean there is so much I can list. It does feel like when I reach out for support, I keep being told I am not the worst and it starts to feel like a competition, and I just don't see the point in that.

This IS a support forum, after all. I just want to make that clear. This is one of the first times in my life I am asking for help and I wanting some extra attention, as I have done it all of my life and I am just os tired. I am hoping one day I can give it back, maybe even get my degree to help many. I would love to come at this with an approach that can help give people their lives back and in the most painless way, if possible.

I am writing this as my lifeline, I am so scared that I have to keep active on here or I fear I will go madly insane. My mental health is so screwy right now but after spending time understand how mental health meds make you worse. I never want to touch the things, because I know those people that suffer from being on them and coming off of them, and I was one of those people. I also went to the psych unit back in January of 2018 thinking it would help - it did nothing and I was away from my partner at the time, which worsened things even more. Again, I have a lot of experience and it kinda sucks coming from so much pain only to be back in it.

With that said, I am not trying to say anything rude to anyone here. I just want to be extremely clear about everything that I am saying. Just like you were saying, I am simply trying to make sure it's this that's the true cause. I want to be sure, because I spent 3 years thinking it was another unexplainable thing. It's like coming across this same thing, getting well and having it again. Well... it IS that! I beat it once only to have it happen again. Or, I beat it when it wasn't that bad back in 2011, 2014, 2017-2018 and now I am doing it again since waking up May 15th feeling as if I am in another world, stuck in complete panic and agony that doesn't ever end. These massive long-lasting times of hell seem to carry stronger which each few years that pass, and this time around I am not taking anything to ease it, purposely - or possibly stupidly. I happen to explain my symptoms to my docs and they say maybe it's something autoimmune as well on top of my current diagnostics, and I just wanna be sure I am covering all of my bases here, but then that's a problem because a lot of them do not want to continue testing. I have been sick, and I just got used to it. It's this level of sick that is tearing me apart. I am stuck in bed and I am fortunate that I have the ability to look at my computer screen without having as many attacks as I was, but then there are times I feel like it all starts right over. It reminds me of when I was going through my "withdrawal" and since I have been through another illness that looks just like this, it's confusing. To have been through all of it, and now to be alone on top of all of that. So I just want to be able to complain. I want the support and the darn pat on the back lol. I know that some are not trying to come off rude, but... some have made comments that have felt offensive. Maybe I'm just sensitive, but that in it's own should explain how bad I feel, and I wish to respected on that front. Regardless of how "bad" anyone is, I am "bad" in my own way, and it's the worst kind of "bad" I have ever been. Only comparing to myself, no other comparisons needed.

I wish you all a great day. Believe me, I do hope the best for everyone.

Forest, I don't know if you have mentioned it or if anyone has asked you this. Have you had the Covid vaccine? I ask because it has damaged others on this forum or sent them into a bad relapse.