- This topic has 19 replies, 8 voices, and was last updated 13 years, 11 months ago by
.
-
Posts
-
Hubby finally went to LLMD. He has been holding off for 4 yrs while we focused the dollars on me. I am finally well enough to step aside for him and he is so sick it could not have waited much longer.
Dr sees lots of yeast and definitely lyme. MRI ordered for possible lesions on brain. Yipes!
Here is my question:
She wants him to start Omnicef and Nystatin immediately. Problem is we leave in 2 weeks for a 2 week cruise. We are afraid the meds are going to make him to sick to travel and we sure don't want to start then stop the med. We are debating waiting until after the trip to begin treatment which our doctor isn't so happy about. She says the longer he waits, the longer he will be on IV antibiotics. We can't cancel or reschedule a cruise and this is expensive and once in a lifetime.
What experiences have you guys had on these two drugs?
Hi Susan–
I've never taken only Omnicef–it has always been in combination with other antibiotics. I have always reacted to any and all antibiotics whether pharmaceutical, botanical, homeopathic, herbs, etc. I would not rock the boat; if he is well enough to travel, wait until afterwards to start the regiment.
I waited a month at Christmas before starting the antibiotics again. So glad I did!! Started the antibiotics on Jan 4 and stopped on Mar 31–had a really tough time, but tried to tough it out–honestly, I'm still trying to recover. I actually think I have developed some type of myositis–will be seeing the doctor at the beginning of June–I may need a wheelchair for this appointment :doh:.
Best wishes to your husband–
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
My daughter took Omnicef before she was dx'd, I think for an ear infection. She was already sick, though – it was when they were telling me nothing was wrong, but I was already telling them her ankles didn't look right.
She didn't have any problems while she was on it; I don't even remember it bothering her stomach. But right after she stopped it, she got a crazy rash. They said they would think it was from the med, except it started once she was off it, plus it wasn't all over.
It started small on her thighs, but eventually covered both arms and legs and some of her trunk. When I put her in the tub, she looked like she had big polka dots all over, like a child in sitcom would be made up.
Another mystery we will never solve. It has never happened again.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
[user=18]Suzanne[/user] wrote:
It started small on her thighs, but eventually covered both arms and legs and some of her trunk. When I put her in the tub, she looked like she had big polka dots all over, like a child in sitcom would be made up.
Another mystery we will never solve. It has never happened again.
Suzanne, when you mentioned the rash being more prominent when you put her in the tub, I thought of Fifth's disease (Parvovirus B19), which produces a lacey, reticular eythematus rash on the skin. I had it in my 30s (it caused horrible swelling and arthritis for several months) and the rash (which also came with a slapped cheek, lupus-like butterfly rash across my cheeks) was always more visible after a bath or shower. Heat seems to bring out the Fifth's rash and it's one of the ways it's diagnosed.
Is it possible it was something like this and unrelated to the Omnicef?
Trudi, so sorry you're facing this possible extra now, myositis. My heart really goes out to you.
Susan, I've never been on Omnicef, so have no input other than that the other way to look at this is that he could try it prior to leaving on your trip for a few days and see how he goes. You don't mention what his Lyme symptoms are, but herxing manifests differently for non-rheumatics and he may not have quite the same reaction as someone with RA. Sure do understand your concern as well as your doc's sense of urgency, though, and not an easy decision to weigh.
Peace, Maz
Trudi,
are you that weak that you may need a wheelchair? Sorry to hear that. I hope you will feel better soon. It's like three steps forward and two back.
I am doing okay but I ordered a test kit from IGenex (got it today) because of the bug bite I had in March and the spots that are itching and when healing leaving a brown mark. So next week when I see Dr.K. I am asking her to do the test. I am taking my medication to make sure I stay okay. I think they changed the Biaxin because now when I take it (new prescription) I have a hard time sleeping even with the LDN:headbang:.
Stay well,
Eva:?
Eva Holloway
Since the doctor believes the lyme is in the brain and she warned him he is going to go through a rough time (just not sure she meant on Omnicef as she will be adding stuff once the bloodwork comes back), I am anticipating extreme exhaustion, dizzyness, etc. We are thinking of waiting but the dr didn't like that.
Maz, wouldn't starting an antibiotic and stopping build up a resistence in the bugs?
Trudi, I didn't know you had a new issue. So sorry!!
On lymenet, I searched out experiences and read where some people felt better, some felt nothing and some couldn't stay awake more than 3 hrs at a time. Since John's main symptom is CFS, I worry about the can't get out of bed or stay awake symptom. Also he has a weak stomach and apparently stomach upset is a side effect.
Really thinking about waiting. Might start the Nystatin though. I'm thinking he can stop that if too much herx….right?
[user=27]Maz[/user] wrote:
Suzanne, when you mentioned the rash being more prominent when you put her in the tub, I thought of Fifth's disease (Parvovirus B19), which produces a lacey, reticular eythematus rash on the skin. I had it in my 30s (it caused horrible swelling and arthritis for several months) and the rash (which also came with a slapped cheek, lupus-like butterfly rash across my cheeks) was always more visible after a bath or shower. Heat seems to bring out the Fifth's rash and it's one of the ways it's diagnosed.
Is it possible it was something like this and unrelated to the Omnicef?
It wasn't Fifth's (but I do think she had that later – slapped cheeks). The dr. we saw for it was ancient, um very experienced, and he didn't know what it was.
This was big polka dots. She looked comical, it did not look real.
Our ped just told me the other day that if one of my kids had it, “you know it is going to be something you have never seen before”. Sigh. Sad but true. When an 80 yr. old pediatrician says, “Do you mind if I get another dr. to look at this?”, you know you are screwed.
Yes, it could be unrelated to the Omnicef – I hadn't changed the diapers I was using for her, but found a card in the pack that said they had changed something about the brand I was using. Since it started on her thighs, that made sense, but then it covered her arms later and was outside the diaper area, nowhere inside.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Suzanne,
Pampers just had a recall of their diapers. Some new chemical they were using caused severe diaper rash. Man, I didn't even know they used chemicals in the diapers. Poor babies. Their skin is absorbing these chemicals and who knows what the chemicals are doing to their fragile organs.
Susan
[user=86]Susan Lyme/RA[/user] wrote:
Since the doctor believes the lyme is in the brain and she warned him he is going to go through a rough time (just not sure she meant on Omnicef as she will be adding stuff once the bloodwork comes back), I am anticipating extreme exhaustion, dizzyness, etc. We are thinking of waiting but the dr didn't like that.
Maz, wouldn't starting an antibiotic and stopping build up a resistence in the bugs?
Really thinking about waiting. Might start the Nystatin though. I'm thinking he can stop that if too much herx….right?
While your doc's concern about waiting with neuroborreliosis is understandable, can't blame you for waiting to start the Omnicef, just to avoid the possibility of a big herx while away on your dream vacation either.
As for resistant bugs, you wouldn't think so the way IDs use short courses of abx for Lyme and coinfections and do repeats when symptoms come flooding back. Also, some LLMDs will do long, two weeks pulses…they do this intentionally to elicit a herx (commonly starting within 10 days for borreliosis) and then take a week's break, then hit 'em up again with another 2 weeks, ad infinitum, and sometimes with rotations of different abx on successive blasts. This is done to trick the bugs out of cystic forms. I think you said you were going off in two weeks, so this would give time for a 2-week blast, but if he does have a big H then he'd probably be recuperating the better part of the vacation. :doh:
I think the bigger problem with Lyme & Co is playing with the doses and adjusting up and down, which is sort of counter to the way Brown would do it…but more LLMDs are starting to put quality of life over big herxing. If he doesn't herx, then he may just get better and better, but as you say…you're not going to know that until he gets going, so you just have to go with your guts on this and do what feels right to you guys. You have such a good intuitive feel for this stuff, Susan, I'm sure you'll navigate this all the best way possible. 😉
Your idea to start the Nystatin, first, sounds good…to hit up the candida and clear some of that away in the meantime. Besides, introducing one thing at a time isn't a bad idea…then you know what is causing what. He may even get some fatigue from the candida die-off, but, intermittant pulsing of Nystatin is done by lots of AP and LLMDs if it gets too unbearable. It's more of a gut wash-through than a systemic anti-fungal, like Diflucan, which when used for Lyme is usually a twice-daily daily regimen (as per Shardt). The latter is what I'm doing now with Diflucan in two week pulses and two weeks off in repeat cycles.
Hope you manage to figure it all out okay – sure you will! Where are you going for your cruise, Susan? Sounds idyllic!! Take lots of pics to share, so we can dream. We going down to Hatteras Island the first week of Aug…can't come soon enough!
Peace, Maz
[user=18]Suzanne[/user] wrote:
It wasn't Fifth's (but I do think she had that later – slapped cheeks). The dr. we saw for it was ancient, um very experienced, and he didn't know what it was.
This was big polka dots. She looked comical, it did not look real.
Yes, it could be unrelated to the Omnicef – I hadn't changed the diapers I was using for her, but found a card in the pack that said they had changed something about the brand I was using. Since it started on her thighs, that made sense, but then it covered her arms later and was outside the diaper area, nowhere inside.
Oh yea, I think I remember the Fifth's episode now, poor wee mite…she's been through it, hasn't she? Mind you, you go through it with her, I'm sure. :doh:
Another thing that comes to mind is late-disseminated Lyme rashes? …these could well come out as a result of herxing. In the 2nd video clip from the bottom of the following link, Dr. H shows a slide of late-disseminated rashes on a child's legs:
http://www.ctlymedisease.org/videoclips.htm
Gosh, who knows, eh? When I got Fifth's…my GP up in Canada didn't have a clue and sent me home without a diagnosis or anything to help in spite of the horribly painful, swollen joints…I was going up and down the stairs on my backside. I looked it up on line, called her and she said glibly, “Oh yea, that's what it is.” Nothing you can do…just have to wait it out… :X
Peace, Maz
[user=236]Eva Holloway[/user] wrote:
are you that weak that you may need a wheelchair? Sorry to hear that. I hope you will feel better soon. It's like three steps forward and two back.
Hi Eva, Maz, Susan–
Walking has always been my worst symptom because of swollen, painful ankles and knees; of recent I've had additional pain in my pelvic/groin area and hips. Also, I wake up in the night with my thighs in pain. It takes me a couple of minutes dealing with my legs to walk to the bathroom which is just a few steps away. The thigh and muscle pain is what really has me bothered. I can't straighten out my left leg no matter how many stretching exercises I do–seems like the muscle (or ligament/tendon–something) has shrunk:angry:!!
A week ago I decided to stop everything (except the pain med, Indo) and see how it would go. Started back on the magnesium right away because of cramps. Started back on the digestive enzymes two days ago and they are definitely a big help–won't stop those anymore. My rash is fading a lot–who knows, maybe I am just having a lot of die off and herxing.
Susan, back in the early '90's I had undiagnosed Lyme and it was all in my head (ironic–that's what all the doctors said–this is all in your head). At that time I had a hard time sleeping, but was tired all the time. Dizziness to the point of not being able to walk to the mailbox; panic attacks; trouble with my vision; huge brain fog; I was miserable and would rather have Lyme arthritis, with all its pain, than what I had. No one figured it out, but I was eventually put on Cipro for klebsiella pneumoniae and that put me into remission and Lyme didn't rear its ugly head until 2003 when I was bit again. I didn't have problems with the Cipro–hopefully the meds will work equally as well for your husband. Good luck in your decision.
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
[user=442]Trudi[/user] wrote:
Walking has always been my worst symptom because of swollen, painful ankles and knees; of recent I've had additional pain in my pelvic/groin area and hips.
No one figured it out, but I was eventually put on Cipro for klebsiella pneumoniae and that put me into remission and Lyme didn't rear its ugly head until 2003 when I was bit again.
Trudi, have you ever been tested for the HLA B27 gene for Ankylosing Spondylitis? Don't want to add more grist to your mill while you're suffering, but just wondering. With your hips, knees and ankles giving you most trouble and your history of klebsiella pneumoniae, a potential connection here just struck me.
Peace, Maz
Susan,
I've been on Omnicef since June of last year, in combination with clarithromycin and artemisinin. (used to be on Plaquenil as well but, discontinued that in February of this year) I've never had a problem with Omnicef at all but, I never really had fatigue as a component of my illnesses. The artemisinin killed my appetite for food for about 2 weeks, and I swear it's an appetite suppressant because I just don't have much of an appetite anymore, despite being active.
I can say that I tested the waters and washed off the Lyme meds for about a month to see if they were really working, and boy did I regret that! I learned my lesson about stopping my meds abruptly so, I'll never do that again. My stomach doesn't easily get upset by any of the meds so, I can't comment on stomach upset as a side effect. I do know that when I started up on the fluconazole again 2 months ago, I herxed like crazy for 3 days. My conclusion to that was I must've had asymptommatic systemic yeast. In my opinion, if your husband is sensitive to meds, I would hold off until after you get back from the cruise.
Trudi,
SO sorry you are dealing with something else, and not feeling well. I hope that you are able to figure out what it is, and get on the path to feeling well again. Are you seeing Dr. M for it or someone else?
Maria
Gosh, Susan, you have shouldered enough. We all know with Lyme tx there are lots of choices to be made constantly because of all the variables. If I were in your shoes I'd have him do the research and decide what makes sense to him.
My husband has had a large bulls-eye rash (several years ago) and exposed to the same tick-infested woodland that I am, and I've decided I'm not going to beg and plead and do the mother hen routine because if you're not committed to this complicated treatment it's just not going to work. You have to be invested and willing to do the work. 😕
Sorry to sound so cold-hearted, but just a little annoyed here and this struck a nerve. We were cutting back some branches on the edge of the woods yesterday and I'm in what amounts to a haz-mat suit and he has no hat, no spray, etc. In other words, he's not yet invested.:doh:
Take care…..kim
Trudi,
I'm so sorry you haven't had a breakthrough yet. 🙁 You are a prime example of the damage than can happen when it takes years for a proper Lyme diagnosis.
Hang in there, Trudi, there just has to be something that will work for you and I trust you will not let up in your quest to figure it out. Sounds like you're in the hands of a great doc willing to go the distance too. 😉
Take care…..kim
The topic ‘ Need advice regarding Omnicef’ is closed to new replies.