posted
Hi. I'm a daily reader of the board, but an infrequent poster-- I feel a little shy about it. But I am in desperate need of your thoughts.
My SO is going through treatment for chronic Lyme (probably first infected 15 years ago; more recent bite in 10/04). After the usual odyssey through umpteen-plus ducks, he finally started treatment in 1/06 (unless you count the 4 weeks of Doxy that he convinced a non-LL dermatologist to prescribe in fall '05). He has been on Tetra, and Biaxin/ Ceftin combo, each for about 8 weeks. Tetra was awful, but probably really reduced the germ load. Ceftin/Biaxin was great, but he started plateauing toward the end. He's been on Flagyl for about 3 weeks, and 500 - 750 mg per day.
He started out w/Dr. P in CT, and now has started seeing Dr. C in MO. Dr. C prescribed the Flagyl. Babs treatment will be next; he tested negative for Babs (though not through Igenex), but it stands to reason to treat.
What's most debilitating right now is a bumpy rash that feels like insects are biting him. This came on with a vengeance after his more recent tick bite (10/05). It got better with the Biaxin/Ceftin (as did his cognitive symptoms, and more), but has really flared with the Flagyl. Of course, this may be ``good news'' (herx), but it's totally disrupted his concentration, his daily routine, and his sleep. He's really suffering, physically and emotionally. I know that Flagyl can contribute to depression, and have told him that.
He is trying to be careful (sorta) with the Flagyl dosing, he drinks lots (including lemon water, and Tincup's tea recipe), he does epsom salt baths for detoxing; he takes pro-biotics and Nystatin, and is modifying his diet to guard against yeast. For the record, every aspect of his treatment reflects what we have learned through the collective wisdom and kindness of everyone on Lymenet. For that, I'm grateful beyond words.
With the input of Lymenetters, I've thought of Morgellons, but he doesn't have open lesions or fibers. The 2 LLMDs have considered the skin stuff a Lyme symptom (Dr. C says Bb loves the skin). I know there have been threads on this ``bee sting'' and ``crawling'' sensation before, so forgive me for starting a new one.
My questions: For those of you who have experienced the ``stingers,'' is there a med or med combo that has really worked? Have any of you with this symptom been on Flagyl, and if so, what was the effect? Should he cut back even further below 500 mg? Other things he should be trying to detox? I've suggested foot pads, but he's skeptical, though still open.
It's just so hard to know whether to hang in there, on the chance that this is the herx that will make him turn a corner, or to bail and try something else. Dr. C says to give each med at least 6 weeks--but that seems like an eternity right now.
So sorry for the length of this post. Many thanks in advance for any thoughts you can share. Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
Bon, Yes, I've found other threads on the stinging / crawly feelings. I've also read what jwf has written about herbal treatments for Morgellons (although I don't want to believe that's what we're dealing with), and what groovy2 has said about the positive effect of Babs treatment, which will be the next protocol. I'm also going to finally order the Buhner book.
I know there's no "one size fits all" prescription. Guess I was just hoping to hear other ideas about what made this better. It's just so painful to stand on the sidelines and not know how to help.
Thanks for your good wishes. They are much appreciated.
Marnie, I followed your link, and have read just a little so far on propolis. Were you thinking of oral administration, or a salve? Has anyone else here used any propolis products?
I will read more about this. Thank you; I've never heard of it before, but it does bear more looking into.
Anyone else?
Many thanks once more, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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