I finally was (clinically)diagnosed with neuro lyme HELP me with herx symtptoms please!! My doc is at ILADS conference and unreachable.
I was on ceftin then he swithced me to biaxin on the second or third day in middles of night chills, body aches,thoughts circling etc (thoughts circling worst)
the next day and today BALANCE is WAY off new symptom for me. I am walking like I am drunk! this is scary for me. I wish my doctor would give me alist of possible herx symptoms so I know what could happen. IT is so unpredictable to me. I do not know if it is a herx or maybe something is wrong?
What does anyone think? is there a list of herx symptoms that could be posted here on lymenet? I know it is individual, but if it has happened t o someone else it would make everyone feel better.
I am also dizzy-new symptom.
this is going to be an incredibly difficult recovery for me if I am so anxious about the changes in my body. I do not know what to do.
I am taking 2 500 mg of Biaxin and .70 Effexor and 2.0 mg klonopin
doc wants to add plaquenil next week but I have eye problems and saw literature that this is contraindicated so maybe he will switch. He also wants to add mepron and avelox. slowly. If i am having trouble now I do not know what I will do.
anyways can anyone have input on these new symptoms and how to calm down? I am very stressed and have a LOT going on in my life with little support (am trying to get some)
thank you, Kristin Posted by nan (Member # 63) on :
Here is a list of lyme symptoms (which doesn't always show up correctly)...BUT...herx symptoms are exacerbations of any one of these lyme symptoms!
Loss of balance is definitely a symptom...and will cause you to walk into walls and appear drunk!
Hang on....todays symptoms may be gone tomorrow and replaced by more new ones. Herxing as you are is an indication that your meds are working!
Good luck!
Musculoskeletal System Joint pain or swelling Stiffness of joints, back, neck Muscle pain or cramps Creaking, cracking joints Heel pain Spinal sensitivity Movement of pain or swelling to different joints
Neurologic System Headache - persistent/severe Bell's Palsy (facial paralysis) Burning or stabbing pains Tremors or unexplained shaking Numbness in body and/or extremities, tingling, pinpricks Weakness or partial paralysis Pressure in the head Lightheadedness, wooziness Poor balance, dizziness, difficulty walking Increased motion sickness Seizures, stroke symptoms Restless legs
Mental Capability Memory loss (short or long term) Confusion, difficulty in thinking Forgetting how to perform simple tasks Speech difficulty (slurred or slow) Stammering, stuttering speech Going to the wrong place
Psychological well-being Mood swings, irritability Unusual depression Panic-anxiety attacks Overemotional reactions, crying easily Aggression, rage Too much sleep, insomnia Difficulty falling or staying asleep Obsessive-compulsive behavior Suicidal thoughts Paranoia Disorientation (getting or feeling lost)
Head, Face, Neck Stiff or painful neck Headache, mild or severe Twitching of facial or other muscles Jaw pain or stiffness Sore throat Unexplained hair loss Scalp rash
Eyes, Vision Floaters Double or blurry vision Pain in eyes, or swelling around eyes Light sensitivity Flashing lights Tearing and/or dry Vision loss/Blindness Ears/Hearing Decreased hearing in one or both ears Buzzing or ringing in ears (tinnitus) Pain in ears Sound sensitivity
Digestive and Excretory System Diarrhea Constipation Irritable bladder (trouble starting, stopping) Frequent urination Upset stomach, vomiting Bloating Gastroesophageal reflux
Respiratory/Circulatory System Shortness of breath Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Heart block, heart attack Valve prolapse, murmurs
Reproductive Loss of sex drive Sexual dysfunction Unexplained menstrual pain, irregularity Unexplained breast pain, discharge Testicular or pelvic pain
General Well-being Extreme fatigue Symptoms change, come and go Pain moves to different body parts Unexplained weight gain or loss Malaise Chills All types of rashes on the body and /or scalp Swollen glands Unexplained fevers (high or low grade) Itching Continual infections (sinus, kidney, yeast, bladder, etc.) Increased sensitivity to allergens Exaggerated response to alcohol or sweets Nodules under the skin Early on, experienced a flu-like illness, after which you have not felt well since.
Posted by humanbeing (Member # 8572) on :
Hey Kiddo,
At least we can be grateful that you now have a definitive diagnosis and now you are on a road to recovery...
That said, my worst lyme days were when I started biaxin...I also had trouble walking a straight line, dizzy, chest pain, lymph pain, and of course, the psychotic circling thoughts and music that wouldn't stop.
I was extremely agitated and jumpy. I worried about every little thing going on with me and obsessively googled and lymneted everything for hours on end.
I was not myself. I considered checking into psychiatric hospital cause I saw Brie do it on desperate housewives...
I considered moving away from my family for a year till I could come back sane.
This is hard to write even now but the good news is that I am no longer a crazy person. 10 months into treatment and I am more myself, although still have "moments" of the nutty me.
Would strongly encourage you to get a ll therapist or psychiatrist...I have no doubt lyme is a major psyciatric disease for some like it's cousin syphilis.
Be kind to yourself and seek out people who truely understand your situation and love you. This is a lonely, painful recovery but you can do it if you take one day at a time and stay as calm as possible.
I'm cheering and praying for you
Kim Posted by WildCondor (Member # 434) on :
Welcome to the Lyme world! When you add a new antibiotic you can expect an increase in symptoms, plus the addition of new ones like the dizziness. At times the medictions have side effects as well, so it can be hard to tell what is what. I know its scary and frustrating...try to hang in there and grin and bear it. Most of us have been there and herxing is a good sign that the drugs are working. Posted by i want help (Member # 9786) on :
thank you all--so difficult you expect to geet BETTER when you are sick not WORSE or DIFFERENT
thanks so much kristin
Posted by theviewfromthecurb (Member # 10310) on :
Hi-
I am new as of today as well and felt compelled to
write you. the reply giving you the herx symptoms
is probably the most comprehensive one iv'e seen,
and very cool of them to send such detail.
i've experienced everything on that list (as lot's of us)and more...
with the exception of testicular pain (being a
girl helps!) hee hee!
Some more that I experienced are:
1. vibrations...
you know when a fly buzzes by your ear and you
hear it? this is like that sensation only very
loud and vibrates throughout the head. this
happens all day to me...another vibration thing
that can be very difficult is when you lay down.
it feels like your body is filled with bumble
bees, swarming fast, and stinging deep inside at
all the nerves... very painful. BUT what works for
me is quite odd... loud music!!! I can't have ear
phones(to painful) and it's only certain music.
It actually puts me to sleep!!! my theory is
simular to a baby that can only fall asleep when
being driven around in a car, something about the
car's rocking motion...well over the years i have
tested so much and music is one of the best!
CAUTION: some music seems to make it worse(mostly
country!!!KIDDING!) but you should try what might
suit you. I have even gone to concerts when
feeling well and it's effects are like a miracle
drug for me!
2.halutionations... i won't get to much into
detail unless you want to really know but some
people get them.they go away as the treatment
continues. I kinda liked it!
3. this is my favorite... when i am at my worse, i
can hear peoples thoughts as they are talking to
me... kinda weird but can be beneficial! also,
experience other forms of "6th sense" stuff...we
will leave it at that!
...bumps and bruises are common for us as it
effects the brain...kinda like the mirrors on the
side of trucks, you never quite really know the
actual distance and therefore bump into
everything!
Remember: you will never be alone, even though it
feels like it most always... there is so much to
live for and if you concentrate on what you are
for, and not what you are against... then it's a
whole new world.
Know that the medicine is working... and accept
it's healing process... imagine and visualize the
herxing an exit for the spirochettes...let them
the heck out! If you are worried and stressed,
it allows the lyme to get an edge on you... and
you are NOT going to let that happen any longer!
Today you have started a new healing process with
your mind... it's the most powerful tool we
possess. I know that we can't be "pollyantic" in
our thinking everyday, but know that you deserve
to be happy and healthy, and allow yourself time.
Remember to watch as much comedy shows as
possible. (i didn't smile for over a year,
seriously, and got a cheak cramp when i did after
so long)not a good thing...
email me anytime, and good luck.
Posted by lymie tony z (Member # 5130) on :
Kristin,
It is extremely important to utilize any relaxation/meditative techniques you are practiced in.
I have been where you are right now and can tell you that it will pass...keep that in mind as well...don't stop believing that it WILL PASS...
You are not going insane...it is the disease...
I believe you should get on some IV meds as soon as your doctor is free to prescribe.
It is difficult to logically believe that you are getting better when your symptoms increase in severity...
But that is exactly what tells you that you are killing spirochetes... Just imagine all the little squigly bums dieing and disappearing down your bloodstream and thru your kidney's and out of your body.
and hang in there...zman
Posted by i want help (Member # 9786) on :
lymie tony,
what kind of IV? will herx be worse on this? I do want to speed things up and am up for it. I will ask him at my next appt. It is brutal walking sideways stuttering what's next??? the worse is the thoughts in the head It is intolerable.
thanks for your help I really appreciate it kristin
Posted by cbb (Member # 788) on :
Hi Kristin, You've been given excellent info, but I'd like to add a few comments.
I'm assuming you know what needs to be done to try to keep the body in balance while on antibiotics (abx), but will post some suggestions anyway.
Are you drinking lots of water? This helps to flush the toxins out of the system. Some recommend a squeeze of lemon in the water to help keep the acid balance in the body.
It's important to try to eliminate as much sugar & carbs as possible. Eat a very nutritious diet. Helps prevent Candida - systemic yeast infection which also has many of the same symptoms of Lyme.
Get adequate sleep. Rest during the day when your body says you need to.
Don't push yourself, but any exercise you're able to do (like walking) will help raise the body temp & increase the oxygen level - 2 things the spirochetes don't like.
Are you taking lots of acidophilus? The abx kill the good bacteria along with the bad so the good needs to be replenished with Acidophilus capsules (Health Food Store). In his "Diag Hints & Treatment Guidelines...", Dr B recommends 2 capsules (top quality) with each meal. www.ilads.org/burrascano_0905.html
If you're taking abx with a meal, save part of your meal or plan a snack to go with the acidophilus 2 hours later. Always have 2 hours between the abx & acidophilus - before & after - so it will be able to help you.
Some LLMDs say: if the herx gets too bad, take a short break (couple days) from the abx to give your body a rest. Check with your dr when he's available & see what he wants you to do.
Ask as many questions as you need to & read, read, read from the "Newbie links".
Posted by AliG (Member # 9734) on :
Hi Kristin,
I have nothing to add to that list.
When I saw your post, I just wanted to tell you how glad I am that you are finally getting some REAL help!
Hooray! You're on your way!
Ali
Posted by BostonLyme2005 (Member # 7680) on :
Kristin,
Your mail box is full, I cannot send you a PM.
Ring Ring!
Posted by Robin123 (Member # 9197) on :
Hi Kristin --
I know you have to get your meds figured out.
But when I read you have eye symptoms, I wanted to let you know there's a juice called Mangosteen juice that is able to alleviate Lyme symptoms, including eye problems.
There's a lot of different brands in the health food stores now, plus a multilevel marketed one.
I started on the Ultra Mangosteen one 2 weeks ago and it has taken down pain, including in the eyes.
See the discussions on it in this site. One is on the first page, something like questions about Xango, and the other is on the 2nd page, about mangosteen juice helping.
If you try it, drink water with it too, as it will detox the body also, but very gently, for me at least.
![[group hug]](graemlins/grouphug.gif)
o someone else it would make everyone feel better.![[Smile]](smile.gif)