I have been on orals for about a year now with a lot of improvement. But, my CNS issues are slowly coming back. I was supposed to be nearing the end of treatment and pulsing flagyl but could not handle that. It made me have insomnia, vibrations and burning like no other. I have using GSE for a few days now and those symptoms are so intense. I don't know if it's a herx (I only had 4 drops 2x day) or if I'm just getting worse.
I am mentally stuck in a place where I will never be calm or sleep again. I have so much anxiety about it all I shake in bed at night. Not sure if that's lyme related or just me. I highly sensitive to medication so I am losing hope.
On top of that I never had a positive igenex ...just IND specific bands. It's hard to find support (besides llmd) with that. Thanks for letting me ramble....just had to get it off my chest.
Posted by faithful777 (Member # 22872) on :
IND bands are still considered positive.
If you feel your improvement is slipping, perhaps you can speak to your LLMD and change up some of your abx. Sometimes that is all you need.
Posted by Robin123 (Member # 9197) on :
Ditto to what faithful said. Sounds to me like you haven't found treatment yet that you can tolerate.
Posted by Nancy L (Member # 42733) on :
I take 4 tabs of GSE from Nutramedix daily, and it is supposed to pop the Bb cysts.
If you are hertzing from that, sounds like you still have cysts.
Tindamax(newer form or brand of tinidazole) is supposed to kill the blebs, cysts, cross the blood-brain barrier, and kill intracellular Bb forms (Bb within body host cells, without harming the host cells) per the following German study (scan down to chronic lyme treatment):
Have you been taking any tindamax or artemisinin, which is also supposed to kill the blebs? (artemisinin has some cautions about dosage and long-term use)
Maybe you could print it out (pdf) and give the page with that info to your doc, or save on your computer and type that entry for him, copy the link, and print that. If you feel you need to make some change, and this interests you.
I would also be sure to take probiotics while on medications, and chlorella for detox.
One test you can take that might be helpful to convince docs is the HNK1(CD57)from Labcorp only.
It tells the level of one particular killer cell that is depressed in lyme patients who have had lyme about a year or more.
Lyme is the ONLY infection known that depresses this particular immune cell, unless your whole immune system is depressed.
Doctors use this test to see if their regimen of medications has eradicated Bb. One doc does not consider the Bb infection cleared until that marker goes up to 120 or higher, but the range for "normal" posted on LabCorp is 60-360.
Hope things change for the better.
Posted by Judie (Member # 38323) on :
"I am mentally stuck in a place where I will never be calm or sleep again. I have so much anxiety about it all I shake in bed at night. Not "
Gosh, that happened to me on rifampin.
Orals weren't enough for me, I just started on IM bicillin LA and it's been a game changer.
Have you tested for viruses? I have 13 co-infections. There are links on this thread I made:
My body sees it as a toxin. I feel like death when I take even one dose.
For me, GSE is poison.
Tinidazole is a miracle. For neuro lyme, it has really helped me, as has IV roceph.
There is hope.
I have tried so so many oral abx combos before finding the right combo for me.
Have you treated for bartonella?
What you're describing sounds a lot like my bartonella symptoms when they were at their worse. Posted by Lymetoo (Member # 743) on :
Also consider adrenal dysfunction. The shaking makes me think of that!
Make sure you are taking plenty of magnesium, especially at night. Being low in magnesium will make a person even more likely to be negatively affected by the flagyl.
Posted by droid1226 (Member # 34930) on :
Bartonella causing depleted adrenals it sounds like to me. You'll get there. But I'd try to slowly ramp up to treat bart.
Posted by rkbb2004 (Member # 40070) on :
Greta- how much did you take of GSE to make you feel that bad? One drop or one capsule? Flagyl made me feel manic..as that was 1/4pill.
I have treated bart with rifampin for 6 months.
Lyme too - if I had adrenal issues wouldn't I be tired during the day? I have too much energy around the clock!
Posted by GretaM (Member # 40917) on :
Rkbb- It was originally 6 drops I started on which floored me. I started at 1 drop and tried to move beyond it but never could.
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