djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
does anyone else have very bad pains in their head? i have constant pain behind my eyes, in the base of my neck, in my temples, in the back of my head. the pressure is getting better from iv abx but its still driving me nuts. stiff neck too, feel like im a space cadet most of the time. the thing that suck is that all the symptoms get worse when i try to do anything (like use my head) also 1 month into abx i am struggling w feeling hopeless, (and i know that feeling is from the lyme too)this looks like its going to take some time, huh. ;0?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I have all of those plus lots more...u arent the only 1. Others will be able to give u better advice, but just wanted to let ya know I feel your pain...I'm actually having to come off 1 abx and dont know WHATS next...so u shouldnt feel hopeless. If u have worse symptoms since on abx...that may be a good sign of a herx.Means abx working. Are u on rocephin?
-------------------- Ill since 1998 DX 2005 Posts: 93 | From tampa, fl, usa | Registered: Apr 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Oh can I relate to "when I try to do something, all my symptoms get worse".
I have definitely found that everything is further exascerbated for me with light. This means: computer screens, television, lights (meaning reading - as if I could read), daylight, etc.
I hate to suggest, but try a dark room - for as long as you can stand. I have put black bristol board on the windows, and sometimes in the day it is so bad I am hiding under the blankets in addition to that.
The pain behind my eyes can be excruciating at times. The pain on my skin - I sometimes feel my skin is on fire; by the end of the day, my body feels like it's been beaten. When light is on my skin, I feel like it's beating me. See if you find a relationship between your exposed skin and your body pain. Your eyes, and their exposure to light.
My best defense is to cover up. I'm sorry to suggest this, because I personally look like a moron running around like the abominable snowman, but there it is.
I should mention, that one thing that I have found that helps with my body pain is soaking in the bath with a product called, "Batherapy". I'm not sure exactly what's making it such a relief, but it's much more relieving than epsom salts, or dead sea salts. There website is here:
and I have nothing to do with them except as a consumer. My boyfriend who doesn't have Lyme (knock wood) experiences relief on his knee which give him pain from time to time, so it's not just my imagination.
Please keep us up to date; we all experience a bit of relief when one of us experiences a bit of relief.
With best wishes,
canbravelyme.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I have all these symptoms too, and a lot of more
Actually the headache is my worst + this ear pressure pain.
Posts: 638 | From Wroclaw, Poland | Registered: Mar 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I have gotten quite a bit of relief from head and neck pain with cranio sacral therapy.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
canbrave-
thanks, i just ordered some! maybe it will give my fiance a break. she gives me massages religiously, the pain in my muscles is so deep.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
djf2005 your symptoms sound like my daughters. She has others, but these are the worse to live with!!!
Are you treating co-infections?
She finished babs treatment and these symptoms were so much better, but now I think she has relapsed. The pain in her forehead, behind the eyes, and neck came back like a ton of bricks.
She had a nerve block a few weeks ago on the ocipital nerve on the left side of the back of her head (the side of her bite), thankfully that is still holding or her temple and back of her head would be worse.
I really think the relapse came when she tried to use her head too much. She attempted to do some AP Chemestry II work and ended up almost going to the emergency room. (She already had demarol and phenegran so she made it through without going to the ER)
She had hoped to graduate this May, but this set back has totally blown her plans. I doubt she will even be able to complete the chemestry class. She is homebound and has a tutor that can work at her pace, but she saved the hardest class for last and now it is too late.
Sorry for venting! I don't want to make you feel even more hopeless!
Just wanted you to know that others out there do have the same symptoms. My doctor has many patients with these same symptoms who are now in remission! I have talked to some personally and this has given us hope.
I know that it doesn't help much when your pain is so bad that you can't even think about a future, just know that you have one! Keep on keeping on! You are your own best advocate.
You are lucky to have a fiance to help you through this. Keep her involved in your treatment. I hope she continues to be able to give you massages, as sometimes my daughters pain prevents anyone from touching her.
What abx are you taking?
Best Wishes!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
mommak-
thanks for the encouragement. did she have treatment for lyme & the coinfectios @ the same time, or were they seperate? i am on 4 g rocephin 4 days wk just added tindimax. but i do feel i have coinfections and want to get treated, just dont know if i can do it now?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
My head pounded with every heartbeat for eight months straight. I'm sorry to say these things can't be fixed in a day.
Everyone is different, as for me, I've been on abx now for 38 months. The great news is my head stopped pounding after three months on abx. And detoxing every day.
Many of the tick born diseases can be treated with a cycline abx. (doxycycline, minocycline, tetracycline) Have you taken any of these?
Also, toxins are a huge problem for us. If you are not on a vigorous detoxifacation protocol you must start.
When I started getting rid of toxins I started feeling a lot better. If you need suggestions on this please let us know.
Feelings of hopelessness are some of the feelings everyone gets when it is so hard to find a fix or cure. Things will happen for you soon I hope, and things will go back to normal.
It is a long tough road, to get to the end we must go step by step. Praying every day for the strength to deal with it since we can't fix it fast.
Praying for relief of your pain.
Sherry Posts: 69 | From mississippi | Registered: Feb 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
yes, please. what is a good detox regimen???
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Sounds like Babs to me*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
california-
what was your treatment for babs? did you have it in conjuction w lyme? (were you treated for lyme & babs @ the same time?)
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Djf: Sorry to hear about that. I had alot of head pains when I first got lyme disease, and as the treatment works, these symptoms pop up again, along with frequent neck pain.
Sauna's help; warm epsom salt baths with baking soda helps; I do take the occasional Advil (ibupuferon) but that is not great for the liver.
For detox, I take daily chlorella (anytime during day), detox tea (Yogi brand), and Chitosan capsules before bed. Be sure to try to get enough exercise, it is important to move your body! Hope you feel better with treatment, the head pains should go away over time.
Yes, it may take some time -- certainly more than any of us would wish! But it is so worth it....you will get better, so hang in there and take one day at a time.
My best advice is just to get the best doctor that you can work with, even if it means switching doctors, and then stick with the program! Read lots, and if you do not have Buhner's book, that is worth buying and reading. Take care.
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I was actually treated for Lyme FIRST (wrong order to do it!!) because we didn't KNOW I had Babs!!!!!!!!!!!!!!!!!!!!!! So those symptoms were very defined after Rocephin and when we found out I had Babs and treated they left then- so it was very clear which were wihch!!!
I had thought that my residual symptoms were Lyme damage but then we did Meprin & zith and ta da, things got better almost immediately- and when we added Artemisia that took away the remaining arthritis in my hands- which I never thought was Babs- AND my residual ultra-spacey brain fog wihch I hadn't known was babs-
I was treated with Mepron & zith for 2 years and the second year with Artemisia.
I only had a few symptoms but would get them back off of those meds and why have a few when you can have NONE!*)!*)!?!
My Ehrlichiosis symptoms= TREATED FIRST gone with DOXY
Very GI oriented- Irritable Bowel Syndrome 24 hour a day nausea with vomiting Acid reflux 104 fevers for 3-4 days at time
My Lyme symptoms-(maybe TBE virus thrown in?>)
TREATED NEXT (after year no abx when I got sicker & sicker) gone with 1 year orals then 9 months IV Rocephin
progressive weakening fibromyalgia (agony throughout whole body) multiple chemical sensitivity horrible headaches/neck pain with vomiting fits chronic fatigue incontinence chorea twitching including LIMB twitching- face twitching eye twitches- muscle twitching- TWITCHING! and rippling twitching- micrography slurring falling memory deficits leading to dementia burning spots malar rash bodywide splotchy rash bulls-eye rash restless leg syndrome full body jolts loss of balance loss hearing loss vision blurring and Adie pupil also vomiting fits TWITCHING!@ choking/swallowing issues red swollen arthritis in knees and hands and other joints stiff claw hands progressive numbness from feet upwards (had gotten to top of calves could put pins in and not feel) Raynaudes synrdome early awakening sleep disorder
BABESIOSIS SYMPTOMS
TREATED NEXT and unlike Lyme which had been unresponsive for so long the response was immediate but would relapse if went off, but was nice to immediately get symptoms gone!! Put me from 95% after Rocephin to 99% within a week or so!! So of course I stayed on (and then by chance got treated with cipro for gastro enteritis I got traveling in India- and was respsonive- so presumptive Bartonella) 2 years MEPRON & ZITH, last year ARTEMISIA
slight stiffness in hands residual arthritis in hands swollen face from affected thyroid edema in whole body spaceyness/brain fog not progressive memory loss but fogginess and spaciness sharp piercing pains in head sharp piercing pains in eyes neck & shoulder stiffness & pain heart palpitations some chills terrible violent nightmares
AND I THOUGHT MY remaining CHILLS WERE BABS BUT
BARTONELLA SYMPTOMS
TREATED NEXT CIPRO & ZITHRO TOOK ME ALMOST INTO FULL REMISSIOn had no symptoms AT ALL ANYMORE for 2 months and LLMD said ONE MORE MONTH+ full remissioN!!!(but I had to go off because I got pregnant so...
burning spot under left eye burning feet lowgrade fever for 4 years left knee ache chronic chills/coldness despite fever
MY ONE REMAINING "LYME" SYMPTOM is that for less than a full minute each month my left knee aches pre-period.
Years now like that!!! Very nice. To live again*)!*)!*!!
And honestly since it is respnosive to CIPRO it is a Presumptive Bartonella Symptom and not even a Lyme symptom. I believe I am in full remission from Ehr, Babs & Lyme and just have remaining Bart- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
sarah-
thanks! did your brain feel swollen all the time too?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Not after IV Rocephin*!)!!*)!!
but before yes- esp when I got horrible headache like never before (and I had migraines since I was akid- nothing next to this) with stiff neck and vomiting fits- always happened together & ahd feeling of swollen brain-ness big time then*)!!!! YUCK!!!!!!!!!!!!!!!!
Glad it is all gone!!
Hope one day you get to say that as well!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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