Topic: Confused - just want to punch a hole in the wall
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I am not thinking clearly and need your advice.
I have had a lot pain in the last few weeks, worse than in a long time. I have even wondered if I was bitten again.
Oddly, when I first got sick it was April 2 years ago, then last April I felt horrible (so glad I keep a detailed diary), so LLMD ran Igenex test last April and I remember being discouraged because I had been in treatment then 10 months and tests were worse then when I started! I remember a girl telling me congratulations, treatment is working, your antibodies are really showing now, that means the immune system is coming back. My LLMd wondered if I had been bitten again.
Now here it is again, my 3rd April and it has been a horrible month.
I have never been able to handle the large doses many can, my pain is much too severe, herxing doesn't stop, I have to stop the abx if I want the herx to stop.
I am on 1000mg of Biaxin per day and doing very low dose Bicillin 600,000mu's per week because I tried Bicllin at "normal" doses in the fall and herxed so hard I think I seriously injured myself internally.
So, I am not sure I am hurting more because of herx or my abx are too low (disease pain).
Not to mention new symptoms last couple of days that are scary to me, I have not had.
I feel mentally disconnected. When I talk to people it feels weird, I wonder if I am responding correctly and mentally discouraged and moody, crying, angry, etc.
Just so sick of this I want punch a hole in the wall.
I am word searching, stuttering. I was trying to cleaning house and wondered did I clean this or that...this IS NOT ME..ever.
This is not my normal "Lyme life" it pretty much is all PAIN. This makes me wonder if I am herxing or on too low of dose, is that even possible, too low of dose and feel new symptoms and increased pain?
See my mind is mixed up, I am confused...oh and having early awakenings last few days, and instant morning anxiety and SO MUCH NAUSEA - constantly nauseated. I hate that waking up with instant anxiety and edgy feeling. I don't get that either and then nauseated to the point of throwing up but I don't.
What do you think - herx, or possibly disease pain needing higher dose?
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
How much detoxing are you doing?
Lymph drainage therapy helped me the most with herx pain, although I felt exhausted the next day from clearing out the toxins. After that I felt much better. I tried to go once a month, although I think once a week would have been better.
What therapies are you doing that are supposed to cross the blood brain barrier? Personally, I liked penicillin injections and Venex ointment for this.
I found that my neuro symptoms were the worst when I had the most inflammation. It helped during such herxes to increase my Cortisol slightly, and/or to take ibuprophen. Then I could think much better.
Have you had your hormone levels checked? If you not on Cortef, you might want to consider getting a saliva test to see if you need some.
I think my natural hormone supplements were a great contributor to me getting well. I don't know if I could have managed without it.
Hang in there!
-------------------- 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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posted
hi again. achhhhhhhh what NASTY BEASTS WE HAVE. This BYTES!!!!!!!!!!!!!!
my busbdnd and I can only tolerate low doses for long periods of time......and that ain't no picnic. Too many ants getting stuck in the honey.
We seem to get worse every spring, just as you were describing. My eyes are bad again...and i'm more disconnected and anxious.
Have times in the day I rant and rave about how hopeless it is........ Ach. WILL THERE EVER BE ANSWERS YES THERE WILL!!!!!!!!!!!!!!!!!!!! GOOD LUCK AND HEALING WISHES WE WILL SURVIVE.
[ 12. May 2008, 01:15 AM: Message edited by: lymewarrior03 ]
Posts: 661 | From NY | Registered: May 2003
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Thank you for prayers and words of encouragement, somehow helps just to know you understand. I am at this now 2 years and it really is getting tiresome.
I do have a good pain management MD (thank God!) but as we know very little helps, especially if it is a herx. I wish I could at least feel positive, wish there was a positive thinking pill! I can deal with this so much better when my thinking is clear and hopeful. I try and it is like my brain won't cooperate.
I have my husband and son both w/LD in the house ..it is ugly and at times it just seems IMPOSSIBLE we could all have this. 10 years ago, I would have never dreamed I'd be living in this hell, let alone ALL 3 of us. My sister has 3 in her household w/Ld...but doesn't seem to be as severe as we have it. But 6 total in this family...isn't that crazy?
The ignorance of California Md's believing this is a East Coast disease is such a joke. We have 3 LLMD's that I am aware of here, all bursting at the seams with patients.
I do have co's. Some dealt with one has not Ehrilichia, I have a bad time on the Tetra's and don't know how I am ever going to get rid of it.
For now...I go on in disbelief of this never ending nightmare.
Thanks for support it helps just hearing your stories.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hi Lymebytes, was wondering how/where you were! This whole thing just seriously sucks sometimes, doesn't it?
I just wanted to tell you that some of the symptoms you describe (waking up edgy, anxious) are spot-on bartonella/BLO for me. I know your doc in SF treats this w/Biaxin combo for a year and calls it done, but is there any way you would consider retreating bart/BLO w/Dr S.H.? The stuff you are describing he could really get a handle on. I have improved enormously under his care (knock on wood).
Posts: 3528 | From US | Registered: Apr 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
lymewarrior,
Has your husband ruled out rheumatoid arthritis?
Migratory joint pain is typical RA symptom. Keeping in mind, RA is nothing. It is not a bacteria nor a virus, it is just the name of a disorder wherein the body attacks itself, cause unknown. Lyme is one known cause of RA. So is mycoplasmas and in fact, minocin is the antibiotic of choice for RA as it supposedly attacks mycoplasmas.
If he has not had this ruled out, have him check out www.roadback.org. It is a website that believes in and has 50 yrs research proving infectious causes to RA. Including lyme.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
CD57 - Hi - Yeah, I question the Bart thing. He relies on Igenex test 100% ....he tests about every 90 days, my titers seemed to fall during treatment, spiked a year ago and then fell again until titers were normal.He felt we were done with Bart treatment. Well, I know the symptoms and since then have wondered too. Now I had an entire Igenex test run a couple days ago, (I called him -even though I am done seeing him after next appt in 10 days) told him of my agony and ordered the test since he relies so much on them. I also wanted to see if I am turning up pos for Babs, which he swears I don't have, I don't know if I believe that either. The worst thing about him, he just has no understanding of my pain, I cannot follow these high dose radical protocols he sets up for me, I wish I could...but the pain is much too severe..he just doesn't care about that at all.
My plan fell through to go to Dr. S.H. only because another LLMD in Santa Rosa I started treatment with (and much closer to me) treats gently (I need that w/my pain issues) and I figured it seems to be a crap shoot with all LLMD's, no one has the definite answer, but at least this LLMD does NOT rely on the tests - he is clinical, by symptoms all the way. So I am going back to him for awhile.
We'll see...I have Dr. H in the back of my mind all the time..he is just so far. The car ride kills me to SF I can't imagine another 30 minute to RWC.
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