Aa
Just Discouraged :(
I started getting sick at the end of September with what I thought was the flu (my son had been ill). But when shoulder joint pain kicked in and stayed for almost two weeks I was diagnosed (THANKFULLY) with Lyme by, of all things, my pulmonologist who knew enough to run the blood test (Western blot) and deemed me positive. He put me on Doxy but I sought out an LLMD anyway. After 17 days on Doxy with no relief from the joint pain/swelling, the LLMD switched me to Amox. (3000mg/day) I've been on that for almost 3 weeks now and still feel like ****.
My shoulders (mostly left) hurt constantly, and if I move a certain way I shriek (freaking out everyone around me). I have shooting pains in my hands, knees, ankles. My skin itches. Now I have a sore throat and earache. I'm drained and stressed and have been crying all morning.
I'm a single mom with a 14 year old son. My son lost his dad when he was 8 years old, to lung cancer. Seeing me ill is really frightening for him so I'm also trying not to "act sick" much of the time. I'm a working professional, but can't drive to my job (thankfully can work from home) but have so many financial problems right now ... I feel like everything is piling on top of me at once.
Not sure what my question is... the LLMD thinks this is an acute infection because my symptoms came on quite suddenly (and I was staying at a friend's house in a VERY tick-heavy area... we brushed one off my son and two off our dog... I never saw a tick on me, or a bite or rash). I can't believe I'm still sick after all these weeks on the abx.
I know that people here have dealt with chronic illness for YEARS... but I guess I was assuming that if this were an acute infection I'd be better by now.
OH, but I also tested positive for Bartonella so they will start me on Zithro in 2 weeks for that. Great. :(
My shoulders (mostly left) hurt constantly, and if I move a certain way I shriek (freaking out everyone around me). I have shooting pains in my hands, knees, ankles. My skin itches. Now I have a sore throat and earache. I'm drained and stressed and have been crying all morning.
I'm a single mom with a 14 year old son. My son lost his dad when he was 8 years old, to lung cancer. Seeing me ill is really frightening for him so I'm also trying not to "act sick" much of the time. I'm a working professional, but can't drive to my job (thankfully can work from home) but have so many financial problems right now ... I feel like everything is piling on top of me at once.
Not sure what my question is... the LLMD thinks this is an acute infection because my symptoms came on quite suddenly (and I was staying at a friend's house in a VERY tick-heavy area... we brushed one off my son and two off our dog... I never saw a tick on me, or a bite or rash). I can't believe I'm still sick after all these weeks on the abx.
I know that people here have dealt with chronic illness for YEARS... but I guess I was assuming that if this were an acute infection I'd be better by now.
OH, but I also tested positive for Bartonella so they will start me on Zithro in 2 weeks for that. Great. :(
Thanks, Hope. I need to see the film. This morning I have a NEW symptom, chest pain!
The funny thing is that we THINK this is a new infection, but I also had "suspected Lyme" in 1989 which I had no test for, but was given abx for one week. I really hope this isn't that infection, but honestly it really seems too coincidental that we were in a place with a ton of ticks and I got very sick after a week of being there. Fingers crossed that this is all from the recent bite (which I never saw) and the Bartonella is causing a lot of the havoc in my body!
The funny thing is that we THINK this is a new infection, but I also had "suspected Lyme" in 1989 which I had no test for, but was given abx for one week. I really hope this isn't that infection, but honestly it really seems too coincidental that we were in a place with a ton of ticks and I got very sick after a week of being there. Fingers crossed that this is all from the recent bite (which I never saw) and the Bartonella is causing a lot of the havoc in my body!
Probably. Herxing is terrible! You should check out the film "Under Our Skin" if you haven't already. You'll see the terrible herxes that Mandy ( a pt. on the film ) went thru. Hang in there, at least you have found the Lyme in the beginning. I think mine is from 20 years ago....much more difficult to treat.
Went for my followup yesterday after a month on Amoxicillin. Still having joint/muscle/nerve pain, swelling in my shoulder and hands and a strange swelling on my neck that is likely from lymph glands but there is no obvious "node".
Doctor says this is all likely due to the Bartonella. Put me on Zithromax for a month in addition to another month of Amox. Took both last night before bed (not together...a few hours apart).
Had a terrible night... arms, legs, knees... ugh. Woke up this morning with swelling on my right hand (knuckles) and pain in my right shoulder (it has been mostly on the left side). My lower body is still and it's hard to walk.
WTF?? Is this the bacteria going nuts due to the added abx?
Doctor says this is all likely due to the Bartonella. Put me on Zithromax for a month in addition to another month of Amox. Took both last night before bed (not together...a few hours apart).
Had a terrible night... arms, legs, knees... ugh. Woke up this morning with swelling on my right hand (knuckles) and pain in my right shoulder (it has been mostly on the left side). My lower body is still and it's hard to walk.
WTF?? Is this the bacteria going nuts due to the added abx?
It didn't last too long, but if it comes back today I will do that (call the doc). The most annoying symptom I'm having right now is this fullness in my throat when I swallow. I still see my swollen lymph nodes so I'm sure it's that.
Thanks... I'm really hoping this is all herxing ...
Thanks... I'm really hoping this is all herxing ...
Always check with your doc, but if it gets too uncomfortable, consider backing down.
Itchiness could be an allergic reaction.
Can you call your LLMD sooner than your appointment for advice?
Itchiness could be an allergic reaction.
Can you call your LLMD sooner than your appointment for advice?
Red, itchy palms now? Anything else??
Thanks, both.
I have not stopped treatment, still on the Amox. I go back to the LLMD on Tuesday, at which point I will start the Zithromax for the Bartonella infection.
Gorby, I don't have burning either (although one night I did wake up with actual reflux, that gross feeling of burning liquid coming up your throat). I'll try that.
I have not stopped treatment, still on the Amox. I go back to the LLMD on Tuesday, at which point I will start the Zithromax for the Bartonella infection.
Gorby, I don't have burning either (although one night I did wake up with actual reflux, that gross feeling of burning liquid coming up your throat). I'll try that.
just a suggestion - I have had the feeling of fullness in my throat - I found taking some 'omeprazole' helped this - not sure if it has different name in U.S. - it is for treating 'acid reflux' - I didn't have any 'burning' that you would expect from 'acid reflux' - just the 'fullness' feeling.
Good Question. I don't have a good answer.
I've read on various sites that if you react too soon or too long to antibiotics, than it's not a Herx but instead more likely a side effect or medication reaction. Yet I've seen 2 LLMD's and both say that depending on the co-infection and the med and the bacterial load in the patient, fast onset following the start of treatment and long lasting Herx reactions are possible.
That fits me well, at times I Herx within hours of a dose of abx and I've experienced Herxing that lasted until I stopped the causative antibiotic, which in my bolder efforts lasted over a month. Also, my Herx symptoms are similar even if I'm on different classes of abx or even an anti-malarial.
If you have stopped treatment, then if what you are experiencing is a Herx is should wear off, but I can't give you a measure. It's hard to tell because a Herx is a worsening of symptoms, but Lyme symptoms can also fluctuate on their own or in response to stress, heat, etc.
However, unlike a flare, the end of a Herx should be followed by a period of improvement, though if you are still very ill (that is, if your treatment so far is insufficient) then small improvements may be difficult to detect.
I've read on various sites that if you react too soon or too long to antibiotics, than it's not a Herx but instead more likely a side effect or medication reaction. Yet I've seen 2 LLMD's and both say that depending on the co-infection and the med and the bacterial load in the patient, fast onset following the start of treatment and long lasting Herx reactions are possible.
That fits me well, at times I Herx within hours of a dose of abx and I've experienced Herxing that lasted until I stopped the causative antibiotic, which in my bolder efforts lasted over a month. Also, my Herx symptoms are similar even if I'm on different classes of abx or even an anti-malarial.
If you have stopped treatment, then if what you are experiencing is a Herx is should wear off, but I can't give you a measure. It's hard to tell because a Herx is a worsening of symptoms, but Lyme symptoms can also fluctuate on their own or in response to stress, heat, etc.
However, unlike a flare, the end of a Herx should be followed by a period of improvement, though if you are still very ill (that is, if your treatment so far is insufficient) then small improvements may be difficult to detect.
Thanks, Wonko! Really appreciate the support.
Well, today I can see my swollen lymph nodes (side of my neck towards the collarbone). It's very pronounced on the left side.
How long does Herxing last (if that's what this is?) I just finished 3 weeks of Amox (after 17 days on Doxy before switching).
Well, today I can see my swollen lymph nodes (side of my neck towards the collarbone). It's very pronounced on the left side.
How long does Herxing last (if that's what this is?) I just finished 3 weeks of Amox (after 17 days on Doxy before switching).
The ear pain could be Bartonella. For years, like late 90's/early 00's (before I even "knew" I was ill!) I've had frequent problems with my ears, both sides. Sometimes I'd see the dr. and they'd say "Yup! It's infected!" and other times "Nope! It's not infected!" and I'd either get antibiotics or not, depending on the appearance. I never understood why, as an adult, I got several ear infections (and events where it FELT just as bad, but was declared not to be infected...) per year. In hindsight, those periodic doses of antibiotics for misdiagnosed ear infections are probably what helped keep my illness at bay for so long!
At my most recent LLMD appt., this came up and he said that Bart often plays that game, gooping up the ears but often only in a mild way that discomforts us but looks ok upon visual inspection by a doctor. A more gross comment, I also for many years had brown ooze come out of my ears. I just thought it was my gross cross to bear, but after 5 or so months on abx it stopped!
Shoulder pain: Similar story! Also years ago, before I "knew" I was ill, I recall that in summer of '04 I developed a nasty shoulder pain on my right side. I'm a computer person, and was working all the time around then, so I blamed my computer mouse. (Though that sure didn't explain the fevers I was getting that summer as well, but it seemed like the most simple explanation!) To this day, I still have my computers set up "lefty style" with the mouse on the left. My shoulder pain would come and go over the years, and only when it got really bad while I was Herx-ing and NOT working (due to illness) did I put it together.
I did not have an acute onset, nor do I recall the bite, nor did I ever see a bull's eye rash, but I do have a list of odd little instances I thought were merely traits that I now understand to be the sublte signs of my infections that smoldered for years before blowing up in my face.
Hang in there. While your acute presentation sounds very uncomfortable, hopefully the fact that it was caught early (yes, send that doctor a thank-you card!) will help you recover faster and more completely.
Don't feel "guily" that you're not the sickest person in the world. This is YOUR life and it's about YOU. We don't play the "I'm sicker than you" game on this forum, thankfully. We are each going through our own struggles. Of course there is a time and place for compassion for others, but we understand how affected you are right now.
At my most recent LLMD appt., this came up and he said that Bart often plays that game, gooping up the ears but often only in a mild way that discomforts us but looks ok upon visual inspection by a doctor. A more gross comment, I also for many years had brown ooze come out of my ears. I just thought it was my gross cross to bear, but after 5 or so months on abx it stopped!
Shoulder pain: Similar story! Also years ago, before I "knew" I was ill, I recall that in summer of '04 I developed a nasty shoulder pain on my right side. I'm a computer person, and was working all the time around then, so I blamed my computer mouse. (Though that sure didn't explain the fevers I was getting that summer as well, but it seemed like the most simple explanation!) To this day, I still have my computers set up "lefty style" with the mouse on the left. My shoulder pain would come and go over the years, and only when it got really bad while I was Herx-ing and NOT working (due to illness) did I put it together.
I did not have an acute onset, nor do I recall the bite, nor did I ever see a bull's eye rash, but I do have a list of odd little instances I thought were merely traits that I now understand to be the sublte signs of my infections that smoldered for years before blowing up in my face.
Hang in there. While your acute presentation sounds very uncomfortable, hopefully the fact that it was caught early (yes, send that doctor a thank-you card!) will help you recover faster and more completely.
Don't feel "guily" that you're not the sickest person in the world. This is YOUR life and it's about YOU. We don't play the "I'm sicker than you" game on this forum, thankfully. We are each going through our own struggles. Of course there is a time and place for compassion for others, but we understand how affected you are right now.
Good advice, Jackie. I have been walking and it does seem to help (although sometimes the hip pain makes it hard to keep going). I am normally a very active person... I play golf and tennis and workout regularly. Not being able to do those things definitely adds to the frustration, but I keep telling myself it is temporary. I hope so.
I have a high pain threshold too (had two kids with no drugs of any kind!) but it's the nagging aches that drag on and on that get me down... Need my body back!!
I have a high pain threshold too (had two kids with no drugs of any kind!) but it's the nagging aches that drag on and on that get me down... Need my body back!!
When I was Herxing, at one point I got such bad pains in my jaw and neck and shoulder that I made an emergency appointment with my dentist thinking I had an abscess. Uh, no. It was just all the sludge backed up in my lymph system and so on. I figured out to gently stroke/massage in the direction that would help the extra fluid get back toward my body and away from my extremities, and it seemed to help.
My knees are sometimes sore, and I find walking gently helps keep the fluid moving. Not too far for too long, just a bit. But everyone is different -- I have NOT had the severe joint pain that others report -- and I have a high pain threshhold. Try things, gently -- and if it works, good; if not, try something else!
My knees are sometimes sore, and I find walking gently helps keep the fluid moving. Not too far for too long, just a bit. But everyone is different -- I have NOT had the severe joint pain that others report -- and I have a high pain threshhold. Try things, gently -- and if it works, good; if not, try something else!
Thanks guys. I have another question: On Friday I developed a sore throat and earache. They have gone away, but I'm left with a "full" feeling in my throat when I swallow. Not like I can't breathe, just feels "full"... hard to explain. Could it be my lymph nodes?
My knuckles are quite swollen today, as is my left shoulder. My aunt has had RA her whole life and this gives me a newfound appreciation for her. Her hands are completely deformed from the RA and she types, knits, etc... I keep reminding myself of that.
My knuckles are quite swollen today, as is my left shoulder. My aunt has had RA her whole life and this gives me a newfound appreciation for her. Her hands are completely deformed from the RA and she types, knits, etc... I keep reminding myself of that.
I'm sorry you are feeling so horrible. I feel your pain! I've been getting the horrible shoulder pain as well! It's in my shoulderblade and is very painful. I've also had the feeling that I'm bruised and sore.
I also recommend the Epson Salt baths. They really do help. I've been dealing with the depression and frustration lately as well, and I think it may be from the abx. It's gotten really bad since I've started my combo abx. Hang in there, and try to think Positive.
Keep us updated.
I also recommend the Epson Salt baths. They really do help. I've been dealing with the depression and frustration lately as well, and I think it may be from the abx. It's gotten really bad since I've started my combo abx. Hang in there, and try to think Positive.
Keep us updated.
You sound like you are handling things very very well, esp. given how lousy you feel. That's all you can do, and please drop in here when you need a boost. This site has been very helpful for me when things seemed worst.
Sending you and your son and family all good wishes!
Sending you and your son and family all good wishes!
Thanks Jackie!! I really appreciate the support and information.
Yes, I have talked to my son and he understands on an intellectual level, but I just think he has underlying anxiety about losing me (when I travel for work, when I have an asthma attack, etc.). I think all kids fear losing their parents, but when it has actually happened it just heightens that fear. He's doing ok, but I do know I have to be careful not to add to his anxiety by complaining too much about my situation. On the other hand, I need him to step up and help me out here.
It's a nice day today so I'm going to try and get outdoors which might help my mood. I am lucky to live near one of the best LLMDs out there, so I feel good about my treatment. I just have to be patient.
You guys have been enormously helpful and I really appreciate that!!
-Marian
Yes, I have talked to my son and he understands on an intellectual level, but I just think he has underlying anxiety about losing me (when I travel for work, when I have an asthma attack, etc.). I think all kids fear losing their parents, but when it has actually happened it just heightens that fear. He's doing ok, but I do know I have to be careful not to add to his anxiety by complaining too much about my situation. On the other hand, I need him to step up and help me out here.
It's a nice day today so I'm going to try and get outdoors which might help my mood. I am lucky to live near one of the best LLMDs out there, so I feel good about my treatment. I just have to be patient.
You guys have been enormously helpful and I really appreciate that!!
-Marian
Gorby's advice is good.
Part of the dance the Lyme bacteria do is to use up the magnesium stores in your body, which can cause muscle aches and pains and confusion and so on, which is why Epsom salts baths might help. Also helps mood. I took magnesium supplements also.
I haven't had Bartonella, but others here have -- Bart has its own set of nasty symptoms separate from those of Lyme, and perhaps worse in some ways. Hang on till you get on the Bart meds -- it might get better.
As Gorbs said, your symptoms may be related to the die off from the antiobiotics ... the drugs are doing the right thing by killing the bacteria, but it takes a while for your body to collect all the leftover trash from the bugs dying -- that's a 'Herx' reaction. It will pass, but if it's really really bad, ask your MD if you should back off a bit on the drug dosage...tho don't do so without your MD's okay.
Have you talked with your son about how you have an acute illness like having a big case of the flu, and it's not like when his father died from an illness for which there are not always cures. Lyme probably contributes to some deaths (tho MDs don't tend to recognize it that way), but mostly we keep chugging on. That might give your son some comfort...? Just a thought. I'm no MD or psychologist...and I have my own traumatic medical history to deal with, so I understand how hard it is to let the past be past.
Hang on, let us know how you do. A big part of the misery of Lyme+ are the psychological/neurologic aspects that make the physical stuff worse and less tolerable. We've all been there. Hang on.
Part of the dance the Lyme bacteria do is to use up the magnesium stores in your body, which can cause muscle aches and pains and confusion and so on, which is why Epsom salts baths might help. Also helps mood. I took magnesium supplements also.
I haven't had Bartonella, but others here have -- Bart has its own set of nasty symptoms separate from those of Lyme, and perhaps worse in some ways. Hang on till you get on the Bart meds -- it might get better.
As Gorbs said, your symptoms may be related to the die off from the antiobiotics ... the drugs are doing the right thing by killing the bacteria, but it takes a while for your body to collect all the leftover trash from the bugs dying -- that's a 'Herx' reaction. It will pass, but if it's really really bad, ask your MD if you should back off a bit on the drug dosage...tho don't do so without your MD's okay.
Have you talked with your son about how you have an acute illness like having a big case of the flu, and it's not like when his father died from an illness for which there are not always cures. Lyme probably contributes to some deaths (tho MDs don't tend to recognize it that way), but mostly we keep chugging on. That might give your son some comfort...? Just a thought. I'm no MD or psychologist...and I have my own traumatic medical history to deal with, so I understand how hard it is to let the past be past.
Hang on, let us know how you do. A big part of the misery of Lyme+ are the psychological/neurologic aspects that make the physical stuff worse and less tolerable. We've all been there. Hang on.
Thank you so much. I am taking a good probiotic (Jarrodopholus) and I know how lucky I am to have been diagnosed early. I'm really thankful to my pulmonologist for that.
Your words of encouragement do help...I will try to stay positive.
I also feel bruised all over... if I touch my head or almost any part of my body it feels as though I've got a bruise but there is nothing there. I understand that this can be caused even more by the Bartonella than the Lyme.
Thank you so much, again. It's good to have the support.
pg
Your words of encouragement do help...I will try to stay positive.
I also feel bruised all over... if I touch my head or almost any part of my body it feels as though I've got a bruise but there is nothing there. I understand that this can be caused even more by the Bartonella than the Lyme.
Thank you so much, again. It's good to have the support.
pg
Hi - sorry to hear you are going through this horrible time at the moment - you are lucky in that you have been diagnosed early - my shoulder/neck pain was among my first symptoms of lyme - it took me over two years to start treatment for lyme.
Try to stay positive - lyme can cause anxiety/depression amongst its numerous other -possible - symptoms.
Sometimes the antibiotics can contribute to 'crying' - I cried almost non-stop whilst on 'doxy.' - I feel it can be part of 'herxing'. Do you know to drink plenty of water - it is a good idea to take a good probiotic like 'acidophilus' . A hot bath with some 'epsom salts' added can be helpful too - it helped me with my muscle pain.
I can understand how stressed you must be right now but do try to relax - it isn't easy I know but if you can relax this will help with the muscle/joint pain.
No one can tell you how long it will be before you start to feel better - it is often the case that we can feel worse when on antibiotics - due to the die-off of bacteria.
I hope you start to feel better soon.
Keep us posted - Best wishes
gorbs x
Try to stay positive - lyme can cause anxiety/depression amongst its numerous other -possible - symptoms.
Sometimes the antibiotics can contribute to 'crying' - I cried almost non-stop whilst on 'doxy.' - I feel it can be part of 'herxing'. Do you know to drink plenty of water - it is a good idea to take a good probiotic like 'acidophilus' . A hot bath with some 'epsom salts' added can be helpful too - it helped me with my muscle pain.
I can understand how stressed you must be right now but do try to relax - it isn't easy I know but if you can relax this will help with the muscle/joint pain.
No one can tell you how long it will be before you start to feel better - it is often the case that we can feel worse when on antibiotics - due to the die-off of bacteria.
I hope you start to feel better soon.
Keep us posted - Best wishes
gorbs x
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