posted
I've never heard of this but would be interested to hear what others have to say. It sounds intense.
Why is your LLMD using this method to determine your need for IV ABX? Is there another way to determine?
Wishing you good luck with this. Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm also interested in your doctor's logic. If Omnicef causes a brain flare, it means it is getting the bugs in the brain. So it means it is working.
As far as brain flare and Omnicef. I've been taking Omnicef, and my LLMD specifically asked about brain flare. The symptoms she asked were pretty much the cognitive symtpoms. Memory, word searching, etc.
I did have increases in motor tics, but they seem to have subsided now. My LLMD doesn't want me on IV because they are too hard on the organs.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
What? I am about to add Omnicef to my mix (as soon as insurance covers it, they say tomorrow) but LLMD didn't say anything about brain flare or anything like it.
I had been making great progress on Ketek and Mepron and then in the last month slipped a bit. He suggested adding Omnicef for 2 months. Should I be expecting something terrible?
My hand tremors are already worse right now and the semester is just about to start, this is not a good time to ... when is a good time?
Now I am freaking slightly, but then I was freaking before starting treatment and then before starting Mepron and while there have been moments I keep in my mind that I am getting better. In the big picture I am so much better, even with the back steps of this month I am better than where I was.
Uggg... the unknown. Brain flare... I don't like the sound of that.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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I just started omnicef for the first time about 10 days ago. I also restarted biaxin and plaquenil at the same time.
I have pretty bad brain sx and thus far the only form of possible brain flare has been nightmares, active dreaming, slight obsessive compulsive behavior. Those are the negatives.
The positives are that: for many years I was extremely unmotivated and depressed and could barely clean my room or do any more than the utmost of essential workload (I run my own business so that is bad). I filed a deferment on 2005 taxes and hadn't even looked at them (deadline is sept 15th now).
The DAY after I started the combo (last friday), I started my taxes and spent 5 hours that day, and again the next day. I continued this last weekend and finished them, plus cleaned my whole house and my whole office, including going through ALL of my files and decluttering! I am thinking of things I want to do to advance my life and have just signed up for some continuing ed.
This is not a manic type of feeling - more of an extremely productive and not procrastinating type thing. But it verges on OCD. When I put a cup down, it has to be in the exact right spot type of thing. And I am harder than usual on myself with my job and obsess a bit more on the negative, and forget all of the good things that I have done. But then, with my clearer mind, am able to talk myself out of it- until it starts again. So I can turn it around a bit, if you know what I mean.
Thus far, the major herxing has been joint pain to fibro pain, inability to use one hand at a time, and then terrible knee stuff etc. Some slight twitching and then some slight numbing. And the nightmares and periodic feeling of brain fog which isn't horrible. Oh, and the horrible stabbing needles and then random terrible pain in miscellaneous areas. That seems to have subsided - mostly at the beginning.
Overall, I feel 100 times better in only 10 days. But I don't think the plaquenil has started busting cysts yet (I think that takes about 2 weeks), so we will see.
I don't know which specifically are from the omnicef, but I have been on Biaxin and plaquenil in the past without such drastic changes. So I think it is getting in there somewhere. I'd say overall, GO FOR IT! And don't be afraid. it could be worse or different with the doxy and biaxin, as I know that when I was on that combo my brain was a mushy fog. I switched over to biaxin and plaquenil (years ago-not this time) when I had to be able to think straight for my state boards.
Good luck,
Sara
Posts: 588 | From Rhode Island | Registered: Jun 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lucy,
Omnicef crosses the blood-brain barrier. So the brain flare being dicussed is a herx. The herx from Omnicef is often the brain flare symptoms.
Herxes are usually signs you are moving forward. Things get a little worse before they get better. That's all.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I wish I knew the logic behind this "Omnicef Challenge" as well.
My LLMD didn't want to go into details and make me worry too much before my vacation, but, of course, I still cannot stop thinking about it or speculating what it could be like.
She brought up some treatment options for me for after my trip to Japan.
I think she said if I got a bad brain flare from Omnicef, I would need IV ABX; otherwise, she indicated that I had a choice (aggressive, moderate, maintenance, or nothing - not that I don't need any...)
My husband came to that appointment with me, but he coudln't remember as to in what case (bad flare or no flare) I would need IV. Oh, well.
My guess is that only already-existing symptoms/problems (whether something you have ever experienced in your life or something in "hiding" or potential from having Lyme, etc) could come out as Herx.
I had no seizure in my life until I started taking both Doxy and Biaxin, and my LLMD said that these ABX were just unmasking the problem in me.
So, if I had a really bad brain flare from Omnicef, could it be an indication that I would need more aggressive treatment?
That's my guess, and I hate it when doctors keep us guessing.
Most likely I got infected 20 years ago, so I guess my germ load is high, although it's been quite dormant. That's scary, actually.
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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Shizuko- I don't know what to think about the guessing game you are going through. It seems like if you get a brain flare or big herx and things are working, things are working and why add IV? But then I am not a MD. Of course if you start to get better without a huge painful flare that could be good, couldn't it?
I know that a herx indicates die off. But when I first started Ketek I had some symptoms that went away and some that got worse (herx) I don't think the ones that went away were any indication of a problem- neither did my LLMD. We are still going after the buggers as I still have symptoms that increase every 4 weeks (he says indicating active bugs) but symptoms that go away with treatment are good, aren't they?
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
I have been on Omnicef for almost 8 months and have never heard of the challenge. I was on Biaxin, too, but it was too harsh. Omnicef has been the kindest to me and my digestive system vs Ketek and Biaxin.
Not sure what the challenge thing is????
Posts: 331 | From virginia | Registered: Nov 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
My thought when I read this thread was maybe the doc is thinking if there's a high level of brain/neuro stuff going on from the Omnicef it might be faster with an IV.
I have had better or faster results clearing up brain stuff with IV. But that surely doesn't mean it's typical; just what happened to me. IV seemed to lift brain fog faster than orals for me. (but my very first treatment was IV and I was majorly neuro.)
BTW, no medical trainging, blah, blah, blah... just tossing it out there. Good luck either way, I hope it helps.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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My LLMD did say that aggressive treatments such as IV ABX could clear bacteria faster and more thoroughly than less aggressive ones.
I think we can treat aggressively with orals, but they are probably not as efficient as IV ABX (only so much our bodies can absorb the meds from orals, right?)
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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A NP at my LLMD's office explained to me the "logic" behind the Omnicef challenge:
If I experience a bad brain/neuro herxing (flare) from Omnicef, that means Lyme is affecting my brain/neuro at a high degree, which is better treated aggressively by an IV ABX.
She said it would be a "challenge" to my LLMD to determine if I would need an IV.
She also said that many people actually did well with Omnicef.
"Brain flare" includes but not limited to: mood swing, depression, anxiety, sleep disturbance, memory problems, and she said that the family members would definitely notice these.
My LLMD also includes Arachnoiditis (inflammation of the arachnoid layor of the meninges) in "Brain flare," probably because I already have Adhesive Arachnoiditis (clumping of nerve roots caused by inflammation) at L4.
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I had a significant brain flair on omnicef. My headaches increase, burning of the scalp and nervousness all were intensified. After about two months the herx is starting to lessen.. I guess I will need another round of IV for my lymie brain. Stay well everyone!
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I started omnicef about 12 days ago - I am at the tail end of treatment 18 months. I had IV rocephine and zith for about 5 months with other orals. I can't handle the other ABX anymore. Omnicef has been very tolerable for me so far. And I did get what one might call brain flair but is was very low. The omnicef is dong a nice job on clearing up some low level stuff that I still have in the CNS. I can actully say I like the the omnicef. LOL
Posts: 582 | From milwaukee wi | Registered: May 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi Shizuko,
Sounds like you have a "serious" dr there. (lol) She sounds determined to get you well.
Have you started the Omnicef yet?
My son got very cranky and panicky on Omnicef and I remember thinking that his brain was herxing.
posted
I started Omnicef 5 days ago, 300 mg once a day every other day.
So far, I am more irritable than probably most other times (well, that might be a little understatement of how I am reacting to everyone at home.)
If I am by myself, I seem to be okay.
I noticed last night that nothing made me lough all day.
Also, my dreams seem to be confusing - sometimes I can't tell what has happened in reality from what has happened in my dreams (hard to explain.)
And this morning I felt slightly lightheaded, reminding me of the repeated fainting episodes I had back in May.
Well, Omnicef (or adding Omnicef on top of Doxy and Biaxin) hasn't been that gentle to my gut, even though I started taking an extra acidophilus right away.
In 5 days, I need to increase Omnicef to once every day.
I will see my LLMD on 9/22, and I am bringing my husband with me.
We will see how that goes....
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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