Hello everyone. I'm writing because I feel like the only person in the world with these symptoms. I was told by a highly regarded LLMD that my Igenex blood work was "suggestive" of Lyme disease because of my weak response (response to what, I don't know - I was too nervous to ask and the doctor is a man of few words). Also, I suppose my symptoms had something to do with the diagnosis.
The worst symptom I have, and it's been going on for 16 months now, is anxiety, but for absolutely no reason. I know that many of you can relate to this. But with me, the anxiety is always accompanied by a lump in my throat as though I had just been given the worst news in the world, and this tremendous " ache" under my left rib cage. This combination also plunges me into a low, sad, mood in which I pretty much feel like doing absolutely nothing. I just retired 3 months ago, and prior to the onset of these symptoms, I had had great plans for my retirement. Now it just seems to loom as a big nothingness. I'm on a boatload of anti-anxiety meds and a thyroid pill every day. The doctor started me on antibiotics (today is only day 4) and 4 acidophilus pills daily. He said I'd probably feel worse befor I felt better, but said that probably wouldn't happen for 2 weeks. Well, I don't know what's going on, but today I feel awful with the aforementioned symptoms multiplied by 5. Could I be herxing? If so, is that a good sign? Like so many of you, I've had every test in the book - all negative - but now I'm wondering if the diagnosis of Lyme might not even be accurate. I don't have the headaches and joint pains and other symptoms which so many of you write about.
Sorry to bum you out. I'm just feeling really old and sorry for myself today. I used to be a happy and well-balanced person. Now I feel more like a basket case.
Thank you all.
Hi Missyouall,
Welcome to the forum. I am so sorry you are feeling this way. It is so debilitating.
It was my anxiety that led me to get a diagnosis for Lyme disease, so I can very much relate to what you are going through. The other symptoms at the time were not so bad, and could have been explained away by age, overwork and other things.
It sounds like you are in good hands with your doctor. Everybody reacts to their meds differently. You could be starting to herx, or it could be just the whole business getting to you. Herxing is a good sign, but you might want to have a look at our "New to Lyme?" thread at the top of the forum. There is information there on how to detox. It can really help lessen the severity of the herx reaction.
Keep telling yourself that the anxiety and depression is just a symptom of the disease. Somehow the other symptoms like joint pain are easier to accept as the disease.
I can tell you with confidence that all of this will get much, much better. Close to finishing my treatment, my mind is clear and I only get anxious when things are truly anxiety-worth! I am back to do all the things I love to do. You will get there as well.
Co-Moderator Lyme Disease Forum
Welcome to the forum. I am so sorry you are feeling this way. It is so debilitating.
It was my anxiety that led me to get a diagnosis for Lyme disease, so I can very much relate to what you are going through. The other symptoms at the time were not so bad, and could have been explained away by age, overwork and other things.
It sounds like you are in good hands with your doctor. Everybody reacts to their meds differently. You could be starting to herx, or it could be just the whole business getting to you. Herxing is a good sign, but you might want to have a look at our "New to Lyme?" thread at the top of the forum. There is information there on how to detox. It can really help lessen the severity of the herx reaction.
Keep telling yourself that the anxiety and depression is just a symptom of the disease. Somehow the other symptoms like joint pain are easier to accept as the disease.
I can tell you with confidence that all of this will get much, much better. Close to finishing my treatment, my mind is clear and I only get anxious when things are truly anxiety-worth! I am back to do all the things I love to do. You will get there as well.
Co-Moderator Lyme Disease Forum
Hey Missy, hope you are feeling better.
I found out that women actually keep up their same cycle their whole life even after menopause ..they still cycle but it is out of balance. So you could be 20 yrs old and estrogen dominant or 60 yrs old.
Parasites and coinfections ??? Bartonella is famous for anxiety.and mold exposure too.
Metametrix has an expensive but excellent parasite test that gives all kinds of other info on how you are processing . It was $395
but the best money I ever spent and had another stool test done a year before and nothing showed up with a local lab.
hormone test
metametrix parasite stool test
google Jack Kruse Leptin and Lyme . He is a neuro surgeon.
This whole blog especially the question and answer section is worth pringing out and going over with your doctor.
HRT made me go from gripping paralyzing anxiety to laughing. I forgot my face could even do smile anymore.
Every age is good to get the entire Estrogen, estradiol, progesterone, testosterone, DHEA , T3, free T3, T4 and all that stuff done.
Lyme suggestive is an interesting diagnosis? How much was that Igenex test? Mine was $900 but it told me about bartonella and lots of other stuff.
good luck and let us know how you make out.
bucci
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.
Hep C ....fibro, rhumatoidal,depression,
I found out that women actually keep up their same cycle their whole life even after menopause ..they still cycle but it is out of balance. So you could be 20 yrs old and estrogen dominant or 60 yrs old.
Parasites and coinfections ??? Bartonella is famous for anxiety.and mold exposure too.
Metametrix has an expensive but excellent parasite test that gives all kinds of other info on how you are processing . It was $395
but the best money I ever spent and had another stool test done a year before and nothing showed up with a local lab.
hormone test
metametrix parasite stool test
google Jack Kruse Leptin and Lyme . He is a neuro surgeon.
This whole blog especially the question and answer section is worth pringing out and going over with your doctor.
HRT made me go from gripping paralyzing anxiety to laughing. I forgot my face could even do smile anymore.
Every age is good to get the entire Estrogen, estradiol, progesterone, testosterone, DHEA , T3, free T3, T4 and all that stuff done.
Lyme suggestive is an interesting diagnosis? How much was that Igenex test? Mine was $900 but it told me about bartonella and lots of other stuff.
good luck and let us know how you make out.
bucci
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.
Hep C ....fibro, rhumatoidal,depression,
Thank you for your kind responses, achieving grace and bucci - they were very helpful and made me feel not quite so alone. I do think I'm in good hands with this doctor even though I've only met with him twice. The other doctor I'm working with is a gynecologist/endocrinologist who has done a great job in balancing my hormones and treating my thyroid. She also has extensive blood work done on me at least twice a year to ensure that everything is in balance.
When my symptoms persisted, it was she who recommended the LLMD. The LLMD, in turn, recommended a good psychiatrist/psychopharmacologist (who, happily, specializes in Lyme and is eminent in his knowledge of the disease) to take over the anxiety medications I was placed on by someone in whom I had lost confidence.
I will certainly do more reading on your wonderful site. I'm sure there's a lot of helpful info here for me.
Bucci, I don't know how much the Igenex test cost because Medicare paid for it, at least that was my understanding. I know I was also tested for coinfections, which were negative. Hep C and lupus also negative.
Thank you both again. I was so glad to hear from someone who understands.
When my symptoms persisted, it was she who recommended the LLMD. The LLMD, in turn, recommended a good psychiatrist/psychopharmacologist (who, happily, specializes in Lyme and is eminent in his knowledge of the disease) to take over the anxiety medications I was placed on by someone in whom I had lost confidence.
I will certainly do more reading on your wonderful site. I'm sure there's a lot of helpful info here for me.
Bucci, I don't know how much the Igenex test cost because Medicare paid for it, at least that was my understanding. I know I was also tested for coinfections, which were negative. Hep C and lupus also negative.
Thank you both again. I was so glad to hear from someone who understands.
Hi missyouall - just wanted to welcome you to the forum! I hope this can be a place for you to come to feel less alone - and probably learn a lot, too! We're all in a similar boat and it really helps to have people who understand what you're going through.
I've been herxing pretty badly myself lately, and even though I've been going through this for a while, every time I still question everything - whether this could really be a herx or whether it's even really Lyme at all, and my anxiety is through the roof at this time! Sometimes 4 panic attacks per day! Detoxing really is crucial - there are so many different ways to do it and every little bit helps! It really makes all the difference in the world. I know it's hard and sometimes it seems endless, but it does get better - hang in there!
Co-Moderator, Lyme Disease Forum
I've been herxing pretty badly myself lately, and even though I've been going through this for a while, every time I still question everything - whether this could really be a herx or whether it's even really Lyme at all, and my anxiety is through the roof at this time! Sometimes 4 panic attacks per day! Detoxing really is crucial - there are so many different ways to do it and every little bit helps! It really makes all the difference in the world. I know it's hard and sometimes it seems endless, but it does get better - hang in there!
Co-Moderator, Lyme Disease Forum
Hi Missyouall-
One of my first symptoms of Lyme was intense anxiety/panic attacks. I started herxing within 2 hours after taking my first antibiotic for Lyme, so I'd say it's definitely possible to herx within 5 days. I did not have joint pain until starting antibiotics, but it started up after treatment as a herx too.
I'm still on the fence on whether herxing is a good sign, but I suppose it's at least affirmation that stuff is getting stirred up. I'm sorry to hear that you are having a hard time. : (
One of my first symptoms of Lyme was intense anxiety/panic attacks. I started herxing within 2 hours after taking my first antibiotic for Lyme, so I'd say it's definitely possible to herx within 5 days. I did not have joint pain until starting antibiotics, but it started up after treatment as a herx too.
I'm still on the fence on whether herxing is a good sign, but I suppose it's at least affirmation that stuff is getting stirred up. I'm sorry to hear that you are having a hard time. : (
Thank you, Scarlet Grace, for your comments and understanding. You're helping to educate me. Up until about 6 weeks ago, I had absolutely NO idea that this disease could wreak such havoc and in so many devastating ways.
Today is day 6 on my abx and I've felt pretty crummy most of the time. Today it's really bad brain fog and an intensifying of the sore, bloated stomach I usually experience. Also quite anxious for no reason.
And you know the kicker? Last night, from about 7pm til bedtime at midnight, I suddenly felt absolutely fine, almost like my old self again. Then, wham, everything was back as soon as I opened my eyes this morning. What the heck is going on here?
Today is day 6 on my abx and I've felt pretty crummy most of the time. Today it's really bad brain fog and an intensifying of the sore, bloated stomach I usually experience. Also quite anxious for no reason.
And you know the kicker? Last night, from about 7pm til bedtime at midnight, I suddenly felt absolutely fine, almost like my old self again. Then, wham, everything was back as soon as I opened my eyes this morning. What the heck is going on here?
I was just reading a nice post from some kind member when I decided to see what that cute little button in the upper right hand corner did. So, being brain fogged, I pressed it and found that it meant that I wanted to ignore the post (Not true!) and then - poof - the post disappeared. I apologize to whoever wrote to me and I wish I could retrieve your comments.
Oh no! At least you didn't do it as a mod - that was embarassing! If you go to "My profile" and then "edit ignored users" you can change the settings there!
Co-Moderator, Lyme Disease Forum
Co-Moderator, Lyme Disease Forum
Thank you borderline. I did the edit. I'll never touch an unknown button again. I'm sorry to say that every day I feel worse...yesterday was awful with every symptom exacerbated. Last night, my brain fog had me so mixed up that, first, I somehow lost/misplaced my evening antibiotic pill. Then later when I went to take one, I reached into the fridge for my water bottle, slugged some water down and then couldn't remember whether or not I had taken a pill from the bottle and put it on my tongue before I drank the water. So - just to be sure - I took another pill. Only later did it occur to me to count how many pills were remaining to see if the count was accurate. Sure enough, I had taken 2 (generic Bactrim, double strength tablets!). I feel helpless and am only clinging to a thread of hope. I have no real support network and I don't even know for sure if I have Lyme. As I first wrote, the LLMD said the Igenex was "suggestive" of Lyme. Am I supposed to feel this bad on day 7 of abx?? My sore stomach is now much worse and it feels as if something were gnawing away at my insides. The anxiety and lump in my throat keep me from wanting to eat, and when I do eat, my stomach gets even worse. And that mysterious ache under my left rib cage, which I've had off and on since the 1970's, is going full force. Can someone please help with a comment? You folks are pretty much the only ones I can turn to. Thanks.
I'm sorry you're struggling so much with all of this - being sick is by no means easy, and often extremely emotional and isolating! Most people find it gets better with time, and the beginning of treatment is especially overwhelming (and confusing!). The doubts you're having are natural, but it does help to make an effort to avoid getting sucked up in them. Your treatment will have the best chance of working if you believe in it. Trust me, I know that optimism can seem impossible, sometimes even ridiculous, when you're feeling awful, but it really does make all the difference in the world once you get past how annoyingly hokey "just be positive!" can sound.
I've forgotten whether or not I've taken my pills plenty of times! Normally I have my pill organizer to make things easier, but my probiotics are in the fridge and half the time I just stand there with a bottle in my hand wondering whether or not I just took one! Plus 9 times out of 10 I drop them on the floor and/or under the fridge!
I know how hard it is to deal with all of this without adequate support - but that's what we're here for! Please don't forget that if you just want to post to vent your frustrations or feelings, and don't hesitate to send an email my way if you need someone to talk to - that's the one and only perk about having lyme disease/any disease - we all know what each other is going through! Hang in there.
Co-Moderator, Lyme Disease Forum
I've forgotten whether or not I've taken my pills plenty of times! Normally I have my pill organizer to make things easier, but my probiotics are in the fridge and half the time I just stand there with a bottle in my hand wondering whether or not I just took one! Plus 9 times out of 10 I drop them on the floor and/or under the fridge!
I know how hard it is to deal with all of this without adequate support - but that's what we're here for! Please don't forget that if you just want to post to vent your frustrations or feelings, and don't hesitate to send an email my way if you need someone to talk to - that's the one and only perk about having lyme disease/any disease - we all know what each other is going through! Hang in there.
Co-Moderator, Lyme Disease Forum
Thanks so much borderlyme. That post was really helpful and gave me a smile. I'm curious about your user name. Does it imply that, like me, your blood tests were only suggestive of Lyme, like a "borderline" case?
You mention how isolating this illness can be. I feel that so strongly. My daughter is married with two children and, wonderful as she is, she just doesn't like it if I'm not the happy joking mother she was used to for so long. Even when she knows I'm home alone and feeling poorly, she'll just say, "Well, don't worry. Things will get better," and leave it at that. I look to her for some comfort or for company, but it just isn't there. Ah, well.
On a very rare positive note, I awoke feeling better today and felt almost normal til after I ate breakfast at about 11:30. Not much, but it's something, and I appreciated every moment of it.
You mention how isolating this illness can be. I feel that so strongly. My daughter is married with two children and, wonderful as she is, she just doesn't like it if I'm not the happy joking mother she was used to for so long. Even when she knows I'm home alone and feeling poorly, she'll just say, "Well, don't worry. Things will get better," and leave it at that. I look to her for some comfort or for company, but it just isn't there. Ah, well.
On a very rare positive note, I awoke feeling better today and felt almost normal til after I ate breakfast at about 11:30. Not much, but it's something, and I appreciated every moment of it.
My username was originally a mix between the two illnesses I've been dealing with my whole life, my lyme disease and a parent's borderline personality disorder. In retrospect though it is perfect - my Igenex test came back at 80 - the cutoff for being positive, and even now the western blot is so unbelievably close to being cdc positive - which I really need for insurance reasons.
I can relate as far as your daughter - I have a similar situation with my sister. She's a wonderful person and I love her dearly but her comments about my health/illness are very, "oh, that sucks..." It's hard not to be able to feel like yourself, but you'll get there. I'm having one of those days where out of nowhere I'm struck with how much easier life is and how much easier it is for my real self to shine through because I'm not feeling all that sick today.
Co-Moderator, Lyme Disease Forum
I can relate as far as your daughter - I have a similar situation with my sister. She's a wonderful person and I love her dearly but her comments about my health/illness are very, "oh, that sucks..." It's hard not to be able to feel like yourself, but you'll get there. I'm having one of those days where out of nowhere I'm struck with how much easier life is and how much easier it is for my real self to shine through because I'm not feeling all that sick today.
Co-Moderator, Lyme Disease Forum
I'm delighted to hear that you're having an emotionally sunny day, borderline. I'm sorry for what you've had to go through. It's really true that each person we encounter is carrying some kind of cross.
I'm wondering, though, does one ever get to the point in Lyme treatment when one can become fully oneself again- with little or no relapsing into a mental netherworld? If not, I would find that almost unbearable, I think.
I'm wondering, though, does one ever get to the point in Lyme treatment when one can become fully oneself again- with little or no relapsing into a mental netherworld? If not, I would find that almost unbearable, I think.
So sorry, borderline, I keep getting your user name wrong.
I just realized that it's not me being dense about your user name. If I don't proofread my message, my iPad sneakily changes it to "borderline" which is a word it can recognize. IPad owners will understand. Once again, borderlyme, glad you're having a happy day.
I totally understand - sometimes the things I post on here using my iphone are completely senseless! Boy does that thing love to autocorrect!
Co-Moderator, Lyme Disease Forum
Co-Moderator, Lyme Disease Forum