phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
A lot of you speak of pain with lyme. That is one symptom that I don't have I do have some body aches to the bone when I overdo but no more than if I was well at my age. I think.
My main problem is the weird head feeling, some off balance from time to time and feeling as I am going to be dizzy plus the anxiety/depression and some fatigue that comes and goes. If it wasn't for these symptoms I would feel well for my age. Then there are times I feel bad but if I make myself get out most of the time I feel better. Then I began to doubt is it Lyme or Anxiety/depression.. Anyone just have the head thing, as I call it.
Since I only had the two positive bands Igm 23 and IgG 41 could I have a hopeful curable case. Oh, my rheumy thinks I don't have lyme so I see him no more.
Venting,
Posts: 1058 | From VA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not everyone has pain - or it can come and go. With neuroborreliosis as you have, the pain often comes later on if it goes untreated and the liver becomes damaged. Liver damage and dysfunction is responsible for a lot of widespread body pain - but that's just part of the picture. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
I don't have much body pain. Mine is more dizziness, anxiety, heart pounding, awful weakness, brain burning/pressure, loopy, and hypersensitive.
I truly feel like if my head issues would go away, the others things would get better, too, and I could function again.
Luckily my joints have been spared, so far.
Posts: 1142 | From South | Registered: Dec 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Tks, Keebler and Hambone. Hambone I now remember you sharing your symptoms in one of my post. Yes I feel the same If the head issues would go away I could function. Oh, I too have the heart palps, pounding and weakness. Sometimes I think I am in denial.
You have probably told me but what treatment have you tried that helps with the head issues and how long have you been on treatment and is it working?
I have started back on my supplements slowly added the essential amino acids in a small dose. I may try going back on clindy. in the next couple of days. It seems to help with the head thing..
God Bless, phyl
Posts: 1058 | From VA | Registered: Oct 2010
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by phyl6648: You have probably told me but what treatment have you tried that helps with the head issues and how long have you been on treatment and is it working?
So far, nothings really helped. I've only been on abx 3 months.
I think my issue is too much Quinolinic Acid in the brain, and have started taking Selenium and soon-to-start taking Resveratrol to try to help with that. Oh, and something to help my body make glutathione.
I have to start everything so low and slow.
Dr. M in Seattle has an article that says too much Quinolic Acid causes the brain the feel like it's swelling and burning, and it's caused by inflammation when the spirochete gets in the brain.
Sooooo, my next plan of attack is Selenium and Resveratrol. And talking to my LLMD at my next visit about being tested for KPU.
I'm getting aggressive with this in 2011. I've suffered long enough and it's do or die time.
Posts: 1142 | From South | Registered: Dec 2010
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posted
I, too, never really had/have much joint pain or fatigue. My problems were/are almost all neuro. I started with a very abrupt and sudden presentation of seizures, heart arrhythmias, spiking high and low blood pressure, constant drugged/drunk feeling, brain shocks/zaps when trying to fall asleep...total autonomic nervous system dysfunction...not fun!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I often didn't have pain (ie I had long months with no pain but many other Lyme symptoms). It comes and goes in phases for me and the first few years of my chronic illness there was much less pain than other problems.
-------------------- Symptom Free!!! Thank you all!!!!
posted
I had sudden onset of nearly unbearable pain before dx. but it numbed out within hours. Been that way since.
Still left with tingling and numb spots but no pain.
Besides that I had aches and severe stiffness but nothing .that could be called pain.
I get weird head feeling and borderline dizzy. Among other things but the cold makes it worse...so has the jostling in a small car.
Earlier on I could not drive at all...sick dizzy in minutes. Which I have been driving temporarily since mine long wheelbase van would not pass inspection.
tolerable but will be glad when it goes...
oh and cold does it to0. I wear long wool underwear six months out of year but this year I can tell even with layers that the cold is affecting me.
Muscles set to trembling pretty violently during a recent outing.
seems to make me also drop and spill things more too...
spilling bottle of abx all across floor. grrrrrr
fatigue improved but sometimes anziety/depression tries to creep in and really did a number on my functioning last year
but now I zap it at first hint with aurum metallicum homeopathy.
when that gets to me I feel similar...that if that were not there life is manageable...still have symptoms but that sort of suffering makes the rest worse.
Vent away...
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Pain comes much later for some who are afflicted neurologically. I was also in this category.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
did this happen even though you were being treated or was this before you were dxed?
i often thought to myself "man i wish i had the joint pain instead of feeling like such crap all the time and all these neuro problems" now after hearing about how horrible it is for people with joint problems i have changed my mind. sounds terrible being in such constant pain.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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posted
Hambone, thanks so much for the information about the Quinolic Acid. I have, thankfully, had no pain with Lyme (though I had knee pain about 25 years ago, which had been gone for year and it has returned on abx -- one of the things that made me convinced this was Lyme). But much more I have a feeling in my brain that can only be compared to doing a headstand for several hours. Like my brain is swollen so there is huge pressure in my head. Not so much a headach, just pressure. That is helpful to know about the reason and possible treatments -- my LLMD did not describe that to me.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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posted
I'm in the same boat as Metallic Blue and TerryK, my neuro symptoms began early on and the joint/muscle/bone pain didn't start until years later. The rest of my army of symptoms come and go as they please
Posts: 8 | From Tx | Registered: Jul 2010
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