Then I know that I am not alone and this is somewhat normal.
I had to wait until Sept 13 for my first LLMD appt so I have been on my own as the PCP who prescribes this for me is not lYMe Literate
so you folks are a life saver
thank you so much, kristin
Posted by Lymester (Member # 5848) on :
Kristin,
Go to Newbiew Learning Links by treepatrol. This link is near the top (approx 7-9) down on the Medical Questions page.
lisa
Posted by TexasChaos (Member # 7465) on :
The herx experience is different for everybody, because not only are we all different, but our infections are different as well, with varying organs involved, etc.
Personally, I have two different kinds of herxes (thus far).
The first kind caused me to be so incredibly sleepy that I could NOT keep my eyes open for anything. It was like being drugged. (Seriously, I fell asleep in the middle of church and hubby had a hard time waking me up!) I would sleep for a good 18 hours each day I was herxing, which usually lasted about 3 to 5 days.
Much like a woman's period, eh?
The second kind I have begun experiencing recently while changing my medications from treating Babesia to treating Bartonella. At first, I thought I was having an allergic reaction to the meds. It made all my existing symptoms worse, and brought back some "old" symptoms that I thought I had gotten rid of for good.
Namely, severe headache, nausea, lack of appetite, muscle twitches and spasms, muscle pain, joint pain, burning pain in feet and hands, and scads of other neurological symptoms (blurry vision, etc).
Hope this helps!
Posted by i want help (Member # 9786) on :
am having muscle twitches and swallowing problems!! feels like involuntary or incomplete swallowing-anorexia-insomnia-anxiety
just restarted my ceftin 5 days ago---
is this lyme?? thanks kristin
Posted by firepipersnurse (Member # 9637) on :
kristen, i know you've been posting alot lately and i realize your full of worry but have you considered anxiety and panic attacks as part of your symptomology? i'm not saying you don't have "lyme" and i know the wait to see a llmd can be very trying but your symptoms seem to me to be triggered by panic and anxiety and just plain worry. understandble, but have you had a completed physical blood work, cardiac workup and neuro workup to try to eliminate other disorders?
let me know, you can pm me anytime but i see your posts and i know your fearful but i never heard back as to what tests you have undergone to rule out other things...
karen
Posted by i want help (Member # 9786) on :
the panic seems to be coming from the lyme? almost like a herx- with ABX treatment
have had all sorts of tests to rule out other things
have joint pain, chills, ears ring, shin splints, had tick bite rash lots of tick experience and live in MAss
the difficulty swallowing is scaring me But i think I read somewhere that this is a symptom of lyme???? it is hard when not feeling well to do research am trying to do a search on swallowing
Posted by i want help (Member # 9786) on :
basically--to clarify
has anyone had diff swallowing and breathing either from herx or lyme?/ that's all I want to know
and what helped? thank you kristin
Posted by TexasChaos (Member # 7465) on :
It sure sounds like Lyme to me.
I know what you mean when you mention problems with swallowing. That is indeed a Lyme symptom. I only tend to get it when I'm herxing, but some people have it all the time. It definitely makes it hard to swallow pills!
The joint pain and ringing ears are also Lyme symptoms. I don't know about chills or shin splints though. I can't remember.
Panic/anxiety attacks are also related to tick-borne diseases. I had never had one in all my life until last year. I suddenly felt like all the air had been sucked out of the room and I couldn't breathe. My heart was pounding like crazy. Fortunately, that has gone away with my abx and I haven't had one since (knock on wood).
If you live in Mass and have had lots of tick bites, you should DEFINITELY get tested.
Posted by firepipersnurse (Member # 9637) on :
difficulty swallowing can be a sign of anxiety or panic attack. i have had this and it was related to anxiety/panic that i've never had in my life. i got myself all worked up and scared and then started having problems swallowing. i found if i didn't think about it, it didn't happen, as was the case of alot of different things i experienced.
i too live in mass and although i had a tick bite and rash, sometimes other things can be going wrong with your body that are not totally lyme related.
for instance, i thought i was having trouble with my leg, well lo and behold after an xray and mri of my knee, i have tissue injury from kickboxing. so that's another thing i'll deal with in the next few weeks.
although there are alot of lyme related symptoms you describe, it is best to rule out i.e., ear infection, migrained headaches, etc....because sometimes it's something different although it could be related to lyme there are alot of lyme mimicking illnesses/symptoms out there.
good luck karen
Posted by lymednva (Member # 9098) on :
I have had difficulty swallowing and difficulty with breathing, felt like I couldn't get enough air. Those can both be Lyme symptoms, which are magnified when herxing.
I also have dysautonomia caused by Lyme. With that can come difficulty in regulating body temperatures. When I herx I sometimes have this happen again, both chills and feeling too hot, all within an hour or so.
While anxiety can also play a role in this, if you are on abx when this happens it sounds to me like a herx.
Of course this is my opinion and I am not a medical professional.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by i want help: the panic seems to be coming from the lyme? almost like a herx- with ABX treatment
Absolutely sounds like lyme! 5 days into the abx is pretty normal for the beginning of a herx.
[ 02. September 2006, 07:46 PM: Message edited by: Lymetoo ]
Posted by i want help (Member # 9786) on :
pcp says her gut instinct is my primary diagnosis is DYSAUTONOMIA
this is a symptom of lyme
interesting....
she says there is a center in new york for dys that might be able to help me
on days like this with hot cold and hot cold and not breathing or swallowing
i do not know how to handle
doing my best thanks
Posted by Jill E. (Member # 9121) on :
I never had anxiety or panic until I got Lyme, it has been among my many symptoms.
Shin splints were among my first symptoms. I used to be a power walker and kept throwing out my athletic shoes thinking there was something wrong with them.
I later heard on a CD of a speech by one of the top Lyme doctors that shin splints is often a sign of Lyme.
I've never had the breathing or swallowing problems although I know people with Lyme and Babesia who do.
However, please remember to always read the package insert with the medications, because allergic reactions can include rashes, swollen tongue or lips, and I think maybe breathing problems but I'm not sure. I just always keep referring to the package insert whenever I get a symptom just to make sure it's not an allergic reaction.
Two years into treatment I developed dysautonomia. I think it can be part of the Lyme or coinfections symptomology because several of us have it.
And as others have said, herxes vary a lot from person to person, medication to medication, etc. I hardly herx, others herx a lot. You just never know until you get into treatment more and more.
Take care, Jill
Posted by TexasChaos (Member # 7465) on :
Ahhh, I have this but never knew it had an actual name until y'all mentioned it.
Here's a link to a good article about dysautonomia.
But I have asthma, so I know that difficulty breathing can feel alot like anxiety (which is itself, for me, a symptom of lyme disease).
In asthma, difficulty breathing is caused by constricted/inflamed airways. Could this be caused by Ceftin? I do not know the answer -- but perhaps you can read up on Ceftin and see if that could cause bronchial inflammation and difficulty breathing as a side effect. When in doubt, call your PCP -- even on a holiday weekend!
Otherwise, it sounds like a possible herx reaction. The timing is right.
My herxes -- always 2-5 days into a new antibiotic -- usually bring back all the worst of the lyme symptoms (facial numbness, fatigue, spaciness, muscle twitchiness, etc.) Which then resolve over time. But not completely yet, two months and counting....
take care and see what you can learn on-line about Ceftin if you are on that.
Posted by Vermont_Lymie (Member # 9780) on :
PS: Celery seed extract is an herb recommended by someone else here on the lymenet, that is said to help with both asthma and anxiety.
Posted by i want help (Member # 9786) on :
many many thanks to all who contributed
of interest: yesterday did not eat at all really--today--much the same it is 527 here
After sugar (oj) and some peanut butter
I felt better-coincidenct? time passed? or related?
of course, now scared to take next dose of ceftin for fear or relapse!
could this air hunger be caused by low blood sugar? did some research and did not get much in the way for answers
any thoughts?????
thank again Posted by serendipity (Member # 8474) on :
The food likely helped- Not eating can cause your blood sugar to dip (hypoglcymeia). That can contribute to anxiety and jitterness.
Do try to eat, having dips in your blood sugar will only make you feel worse. OJ (sugar) is good for getting your blood sugar up...but protein (peanut butter) will help maintain it so you don't crash afterwards.
Is there a reason why you aren't eating much. I'm sorry you are having such a difficult time.
[ 02. September 2006, 06:45 PM: Message edited by: serendipity ]
Posted by i want help (Member # 9786) on :
no appetite-probably due to distress about this condition
I feel so bad for all of us...
I usually have so much joy!
It is hard to function like this with day to day changes that are unexpected
will force food down
again, thank so much to all of you Posted by Andie333 (Member # 7370) on :
Air hunger can sometimes be a symptom of Bartonella (another tick-borne disease common in the mid-Atlantic region).
I remember being in the mall last summer. A woman came up to me and asked if I needed her to call 911. I have NO idea what she was talking about.
And then I heard my breathing, which was raspy and gasping.
I'll be fine, I said and finally went over and sat down until things were a little calmer.
Not to be too redundant, but regarding the unpredictibility of herxes, it helped me to keep a chart of my symptoms on a daily basis (I've been doing that now for 16 months). Then I could see the pattern in my herxes and schedule work and social things accordingly.
There was a time that I was in so much despair, grief, and pain that i did not eat much. I would go through the day and notice around now that I had just a bite to eat.
I would just get deeper and deeper into despair and anxiety.
Slowly I started getting in the habit of eating at regular times, and eating well. It has made a tremendous difference. Now I love food again Posted by humanbeing (Member # 8572) on :
Hi Kristen,
I want to chime in here that I have major worry during a herx, also a little OCD with circling thoughts and songs...feel crazy.
Also, I have difficulty getting a breath and swallowing. Sometimes I cough up water cause I don't swallow right.
Nausea is still a problem I have gone from 125 to 102 sin Jan. dont want to eat but force myself to keep up blood sugar...(Very Important)
My other sympt. are shin splints, head, neck/jaw/teeth eye pain/shoulders/...and now groin and bladder/legs (this is new this month--after 8 months of treatment!)
Lyme is a brain infection. That means it can affect any organ or body system. It moves around and can cause severe psych issues--as with syphillis.
You have my phone #--call if yo need to talk. I can relate to all your worries and symptoms and the best advice I have for you is to be still and calm, breath deep, let your body heal in it's own time.
Unlike other illness you have had in your life, this one aint goin away any time soon so be very patient with yourself and find joy in small ways. Remember, you are not dying, you are healing. Kinda like throwing up after drinking too much, the body needs to get rid of all the toxins....
Blessings, Kim
Posted by shazdancer (Member # 1436) on :
Well said, Kim!
Kristin, I have found that when I'm sick and don't eat regularly, I don't feel hungry, I just feel sicker! Also, many of us have done better on a protein-and-veggies diet, staying away from sweets, breads, and starches. See if that helps you.
Think of your illness like a flu without the fever. You'll need lots of rest, and peace and quiet. I know it's hard to see light at the end when you're at the beginning of this Lyme tunnel, but hang in there. It does get better!
Take care, Shaz
Posted by i want help (Member # 9786) on :
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