All my lyme symttoms are all CNS neuro...tremors, twitches, myoclonus...the works. I am on IV and responding. The addition of flagyl has kicked in a lot of my original symptoms, but to a lesser degree which I think is encouraging.
Here is my question...obviously I can not stay on IV forever. I have about 8 weeks left of IV, maybe 12. What happens than?
Is Bicillin or orals effective enough for neurolyme? I dont have the fatigue or malaise others have...just CNS.
Your thoughts would be much appreciated.
Thanks Posted by John S (Member # 19756) on :
I stopped 5 months of IV and it all came back. I have been surviving on orals for 11 months.
I think if you are lucky, the orals will work.
The best would be to keep going until all the symptoms were gone for 2 months, in my opinion.
Posted by sixgoofykids (Member # 11141) on :
My CNS symptoms were different than yours. I had a lot of cognitive symptoms that got rather severe. I didn't have any of the tremors.
But, I never was on IV, so if you get the right combo of orals, I think it will be fine. I think it's good that you're on Flagyl with your IV and that you're doing well with it. That should get your load down before you have the make the change.
Bicillin works well for many. I never took it either (well, one shot ... that was it).
Posted by sutherngrl (Member # 16270) on :
I had my share of tremors and twitches and weird neuro stuff, and most of it has cleared and on orals only. Actually most lyme symptoms are neurological. Even fatigue can be a neuro symptom for some. Fatigue is not always the adrenals. It can come from the CNS!
Posted by Lymetoo (Member # 743) on :
Make sure you are taking a cyst buster. Then you will be less likely to "relapse" from going off the Rocephin.
Posted by Keebler (Member # 12673) on :
- FIRST: MAGNESIUM helps tremors, twitches and all sorts of CNS symptoms. What is your current dose? LIVER SUPPORT is also key.
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You'll do best with others' suggestions regarding Rx. I just can't comment on that at all as I've never had availability to a LLMD (other than a couple LLMD consults thousands of miles from home years ago). My Rx treatment was just 2 months for doxycycline. I also deal with 2 genetic kinds of porphyria and my ears cannot tolerate most medicines, anyway, although it would be nice to have a LLMD or LL ND for guidance.
No LLMD allowed in my state but have had the opportunity to consult twice with a LL ND (naturopathic doctor). (I used up on my money years ago on a ND who said he was lyme literate but was not at all.)
So, for various reasons, I've had to approach this differently. I am not at all an example of success, however, I do the best I can with a very few select supplements (as budget will bear) and hope to finally get started on RIFE machine soon (if I could understand the heavy metal supplement choice first - but I can't think well enough to sort through that).
If you will still have a LLMD available to you, you should be in good shape but also do be sure to keep up with liver support, adrenal support, cardiac support and also address the heavy metal component of this.
Topic: To everyone with cardiac symptoms please read !
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In addition to your ILADS-educated LLMD, you might also consult with an ILADS-educated a LL ND (naturopathic doctor) or a LL L.Ac. (acupuncturist). Make sure any such professional is, indeed, ILADS-educated and has much experience with all tick-borne infections.
Again, the very best of luck to you. I will give some thought to the best support for CNS. Gotu Kola and Curcumin comes to mind. OmegaBrite, too.
As you are on IV (rocephin, I assume?), your gallbladder may be stressed a bit, so rather than Curcumin (which is Turmeric extract), you should steer toward the more gentle Turmeric, itself. Easier on the gallbladder than the extract. -
Posted by Keebler (Member # 12673) on :
- Myoclonus was mentioned in your first post above. Myoclonus has been one of the major things I've worked hard to overcome.
I'm not there yet, so I can attest to the fact that support is not enough but goes hand in hand with anti-infective treatment.
It addition to adequate treatment of infection, Magnesium & Gotu Kola are the two best support measures. Low magnesium can CAUSE myoclonus or contribute to its severity in the presence of toxic infections such as lyme and other TBD.
GOTU KOLA LEAF (Centella asiatica,) (By Tillitson, et.al.)
. . . Gotu Kola is bitter and astringent in taste and cooling in action. It is a brain and memory tonic, and an anti-poison, and very useful for wound and skin healing. . . .
. . . The primary effects of gotu kola include both wound healing and improvement of mental clarity and emotional balance. . . .
A double-blind, placebo-controlled study on the effects of Gotu Kola (Centella asiatica) on acoustic startle response in healthy subjects.
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You might want to copy and paste all these replies and links to a file on your computer for easy reference. No way that you could actually read all this now, but these links have served me well and I keep referring back to them on an on-going basis. -
Posted by Keebler (Member # 12673) on :
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
* Magnesium: The Underappreciated Mineral of Life Part II - -----------
All this on magnesium is partly because it has helped me so much. However, be sure to ask your doctor. Most lyme patients are very low in magnesium as the infections seem to do that.
Some are concerned that the magnesium can "feed" infection, however, if the body is severely depleted the body must be replenished as magnesium is a necessary mineral for survival.
Taking magnesium with B-6 helps it get into our cells better. And B-6 is a calming vitamin, too. (Thanks to Marnie for her posts on that).) -
Posted by Keebler (Member # 12673) on :
Wild Condor's Lyme Links -
Posted by sammy (Member # 13952) on :
Your doctor should transition you to an oral or injectable med that is similar to the IV meds that are working.
Posted by Rumigirl (Member # 15091) on :
Stay on the IV as long as you can, as long as it is working for you! And, as above, add a cyst buster, too.
If you can't stay on it for some reason, there are alternatives. But wrangle your way to staying on it, if possible.
Posted by WildCondor (Member # 434) on :
Hey there,
When coming off IV I went on the oral meds at equivalent to IV doses. Instead of IV Zithromax at 1,000 mg I did oral at 1,200 mg. Instead of IV Rocephin @4 grams I did Ceftin at 3,000 mg. Bicillin is a great one to go on as long as you combine it with a cyst buster on pulse like Flagyl. A combination of meds like that should get you well and functioning well without the hassle of IV. You could also move to Rocephin injections back to back days plus Bicillin and then rotate in Flagyl and Ketek, Biaxin or Zithromax...just some ideas.
Make sure to detox and to taker your Florastor!
Posted by kimmie (Member # 25547) on :
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