momaine
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Posts posted by momaine
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Thanks for asking about me LLM. I am doing pretty good. I wish I could say I've kicked Lyme's butt but I'm still struggling with Bartonella. My only symptoms that are left are joint pain (didn't even have it when I started this journey, well not much anyway) and some fatigue. (when I don't take my cholestyramine) Most of the time I feel blessed to have gotten as well as I have and I seem to be cancer free the last year and a half or so and that is a blessing.
Dd is doing ok. She is one of the kids who can't get ivig anymore and that has set her back. (though part of that may actually be symptoms from yeast) She wishes she were much better. She is frustrated. But she is still able to work full time. She tries hard to be independent despite all her struggles. It could be worse. I wish I could find out if she will be able to get ivig again. Not getting any answers there. I've been meaning to ask if anyone has seen a Dr. John Walter from Mass General?
I got the Solgar's and she will start it tomorrow. Do you think it would be ok to give dd Culturelle why I wait the 4-7 days? I have some of that on hand. It has worked fine for me. I give dd Glutathione but not Glutamine. Whole different thing, I would suppose?
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Thank you all so much. It is so much information. I don't even know where to start. I am going to try the CP-1 and the Solgar Molyndenum first. How many of each can I give her per day?
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Haven't been on the forum in a while but glad to know you ladies are still here helping.
Dd has positive igG, IgM, and IgA for Candida despite daily 10 billion saccharomyces Bouliardii, 200mg of Diflucan daily, and 500,000Units of Nystatin twice daily.
I've just figured out that birth control can contribute to yeast (so we will stop that). But I also read that taking Diflucan/Nystatin undoes the good of the Sacc Boul.
I've also just figured out that yeast can cause all the symptoms she has had lately that are worse than normal. (she has lyme) Her fatigue has been much worse, lethargy, weakness, dizziness, sensory disturbances, muscle pain, respiratory distress, etc.
So, I've finally talked her into trying really hard to cut out white flour and sugar at least while we figure this out.
This is my thought process....increase the Sacch Boul. to four times a day. I've been buying Jarrow's formula with MOS. 5 billion. is this an okay probiotic? And stop the Diflucan and Nystatin???? Stop all white flour and sugar and see where it gets us? Clearly the Nystatin and Diflucan aren't doing there job well enough. (She's tried Lamisil to but kept getting vaginal yeast while on that, right now the Diflucan keeps her from getting vaginal yeast)
What would you do? I could see a Naturopath but we are so out of money and I've been laid off and if you guys can tell me the same thing he would, it would be wonderful.
Can you help?
And just to clarify, I was giving the Sacch Boul two hours after Diflucan and Nystatin.
would you continue it? I hate not knowing.
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cholestyramine was a life saver for me during herxes. It really made a difference. I took two doses per day on the really bad days. On the days I didn't take it I would sleep at least 3 hours in the afternoon and wake feeling just as tired. On the days I took it, I didn't even need a nap.
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Just curious for other's experience. We're considering.
no, but I do take MSM orally and have for years for back pain. It's great stuff.
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Anyone called Dr. Jones' recently. The number says its out of service. Hoping that is a temporary glitch.
nevermind, it is working now. I can't figure out how to delete this.
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Anyone called Dr. Jones' recently. The number says its out of service. Hoping that is a temporary glitch.
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I still found it helpful, even when I took fluconazole and nystatin. The same argument could be made to not bother with probiotics when someone is taking abx, since the abx is going to kill the probiotics, just wait until the abx is done and then do it. People have died in hospitals based on hospital MD's using that logic. It's kind of a defeatest/perfectionist attitude that could leave one functioning incredibly poorly (or worse) in the meantime. I think these things are important to take during these times.
Michael,
I hadn't thought of it that way, but you are absolutely right. Thank you!
Angela
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momaine- Dr. J has dd continuing Florastor while on Nystatin. I separate them. My daughter is only taking one dose of Nystatin right now (increased nausea/headaches when I add in the 2nd dose) so its been easy to do that. She takes the Florastor in the am and Nystatin at dinnertime.
Hope you are doing better these days!
Hi Philamom,
We are hanging in there. It's definitely a long recovery from Lyme but even on the bad days things are not like they used to be. You do get used to a new normal though and any back sliding seems to be unacceptable to both of us. Lately, dd is struggling with vaginal yeast infections and stomach issues. We're trying Florastor but I wondered if it was a waste while on multiple antifungals. Though Dr. J is the one who suggested it and he knows she's on antifungals. (I always wonder if they over look stuff though.) OK we will go with it. Maybe it will still help even if its at a reduced rate.
How are you guys doing?
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Hello oh wise parents of Lattitudes,
My daughter has been having more frequent stomach aches. She's been on antibiotics for so long, its no wonder. We have had success all along taking Culturelle, but now its not enough. Our dr. suggested taking Saccaromyces Boulardii, but upon googling it, I see that antifungals, such as Lamisil and Diflucan at the least, reduce its efficacy.
Dd strugggles with vaginal yeast infections and going off an oral antifungal is not an option at this point. Is it pointless to take Saccharomyces Boulardii if you are on antifungals? Would it make a difference if she took one in the a.m. and one in the p.m.?
While I am here, what besides a reduced sugar diet can help naturally with yeast infections. She already takes Epicor, which is a supplement that prevents me from getting them to begin with.
Thank you,
Angela
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We were in the exact same boat as you a few months ago. My dd sees the same doctors. Dr. B wants to work toward getting her off unnecesary drugs. (of course I want that too) And Dr. J was feeling that we needed to see a psychiatrist and add in something. I didn't have a psychiatrist for dd and the waiting list is 6 months out in my area. My family doctor was willing to try one of Dr. J's recommendation. (didn't work for my dd) Dd was already on an ssri per our family doctor and seemed like a good fit for her but I didn't know if the other suggestion might help even more. We tried changing to the drug Dr. J suggested with poor results so we went back to the original drug she was on.
What it came down to for me, was trusting my gut. I felt my dd was in a place that we could handle without getting a psychiatrist (who likely won't understand the lyme connection) involved. Also, I don't feel she is ready to be weaned off her ssri, like dr. B would like. So, for now, we are sticking where we are at, following that trial.
This was my internal struggle. Dd was struggling, so tired of ocd, and I felt I could not live with myself if I didn't feel like I had done everything in my power to make her life easier. (esp. should the unthinkable happen) At the same time, she'd been through much worse and seemed to be every so slowly, improving...so I felt like if we could just get through a couple more months of lyme treatment and get her life a little more stable (her best friend moved, etc) that things would smooth out and she would be okay on the medications she was already on.
So, in the end, I did try Dr. J's suggestion which didn't work for my dd. It took another couple weeks on her previous treatment to get back to where she was before we stopped the ssri she was on. (sigh, but you never know till you try) In the end, dd was glad to be back on her old ssri. Things at school smoothed out. Dd made new friends. and just like i had hoped, she turned another corner in her treatment of lyme and really moved forward aftering it seemed like she had been on a plateau for a long time. Thank God!
So, good news on our front....moving in a positive direction still, albeit slowly. Dd moved back into her bedroom 2 nights ago. First time since she started herxing after beginning lyme treatment almost 2 years ago. (she's been on the couch for probably 3 out of the last 4 years) It was just too hard to go upstairs with her ocd. Not saying it is easy for her, but I think she feels she is ready to stay in her own room now. We got her a new bed, cleaned up her mess, and she is happy to be there. I am relieved to see progress. So many things to be thankful for.
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My dd's LLMD cautioned that Rifampin often makes ocd intollerable for kids who have that as a lyme/pandas symptom.
I am also being treated for lyme/bart. I'm presently using the combo of minocycline and rifampin (previously doxy and rifampin) with good results. When I tried to take Augmentin, I had an overnight improvement but found I was allergic and had to discontinue it.
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My dd's herxes lasted months at a time and initially worsened a month into lyme treatment. I feel like the toxins finally built up to a level that her body just couldn't handle at that point. The things we did for detox helped the most. Advil helped too.
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It is definitely tough and the one thing that has gone by the wayside for me (besides cooking and cleaning) is getting on the forum. I miss it though. Thankfully, we are in a place now that I don't feel like I have to read it all the time.
One thing I wanted to mention after reading your post is that my llmd is great about adding meds in slowly and backing off if I can't handle the herxing. She realizes I have a lot on my plate and that I have to be able to function to some degree. There are alternative drugs if some are not working or causing too big of a herx.
Since my cancer diagnosis and subsequent chemo treatments, I've had to take more days off from antibiotics but I'm managing to take enough to keep my lyme symptoms at bay, which is really the most important thing right now. I still struggle with herxing and have to back off the drugs when it gets to be too much. My doc lets me make those decisions and I'm doing okay.
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Just wondering...if you do can you pm me. Thanks.
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We suspect Aidan has congenital Lyme. I tested IGenex positive on both IGM and IGG about a year ago but have chosen not to treat. It is hard to determine if I actually have symptoms worth treating and we are so consumed with the cost and effort to treat Aidan who who has huge issues that cost doesn't seem worth it for the rest of us.
But, a symptom I have worried about is that my hands get tingly when I sleep. It is not consistent. Lately it has been happening a lot and there was a more than a year ago when it happened a lot but every once in a while in between. I think it is normal for it to happen every once in a while - like if you sleep on hand funny but not every night. I also think that this was activated somewhat by stress.
Early this morning (before wake up time) my other son (11) also came into our room and said that his hand got tingly and was numb. He said that he slept on it funny. He got in bed with me and snuggled up and when he went back to sleep I noticed that he had little muscle twitches (wouldn't notice if i wasn't snuggled up with him) throughout his body that kept going on for a while. Noticed Aidan was doing this one night when he came in the early morning hours to sleep with me. I was wondering if this was normal for kids to have these little twitches while they sleep and if so if it was normal for it to go on for some time.
One of my dd's lyme symptoms was twitching while she slept. She has been on treatment for one year and that is one of the symptoms that has resolved. I never saw my other daughter twitch like that. I don't think its normal.
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I feel great except - have night and morning - hand and joint pain. In the Lyme testing I have only IgG P41 Ab.
Can anyone explain this to me and let me know the best way to proceed. Which Dr etc ? Thanks
Hand and joint pain were one of my symptoms. I had others too though but I didn't even realize they were lyme symptoms until after much reading. I'd definitely consult with an LLMD if you think you may have lyme.
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I know he recommends Dr. Bransfield, but he is in northern NJ (I think) so I don't think that's whom you're referring too. Sorry.
How are you holding up? Hoping you are doing well!
Yeah, I think that was the guy he recommended. It's 7.5 hours from home. Sigh...I just wish it were easier to get help. I guess I'll call Monday afternoon and see what I can learn from them and see if the doctor might be willing to talk with our family doctor.
I'm so frustrated. Maybe its just those few days post ivig where things are really hard and she'll feel better in a few days, but that remains to be seen. She had such a bad night last night. I hate to see her struggling so much. Wishing she wasn't alive anymore.
It is years of built up frustration of dealiang with ocd every day. Things are so much better than they ever were but its been such a slow improvement. And I'm dealing with my own health issues and trying to make some money to pay off all these medical bills. I just wish I KNEW WHEN she would feel better.
Going to do some extra detox and make an apt. with our family doc and see what she says.
The days, weeks right after IVIG can be the worst - hang in there. That's when we have our (wish I wasn't alive) moments.
Philamom,
Thanks for asking about me. I am doing very well, actually. I wish I were done with this whole lyme thing, but when I go off antibiotics, I get significant joint pain on day 3. Other than that, and the occasional herx day, I feel better than I've felt in years, despite the cancer. I look at the clock some days and realize its 4 or 5 o'clock and I'm amazed that I still have energy. It's been so long that I've been fatigued that I forgot what it feels like to feel good. I have hope that one day I can get off all the antibiotics. It's been one year since I started them. I am sick of taking pills. So far, the two rounds of chemo I have had so far have not been too bad. Not half as bad as herx days.
And you are right about the post ivig days...they can be the worst, though not this bad in some time. Hoping this time of angst passes soon. Dd seems to be doing fine and then when she isn't doing well she tells me she ALWAYS feels this horrible inside but usually can mask it better. And I know every day is hard. It shouldn't be hard to get dressed...to do normal things that people do every day. It sucks. But more often than not, she seems like she's doing pretty well. Trying her best to enjoy life and doing the best she can. But it scares the ###### of of me when she says she has no reason to live...even if it is said in frustration. If we could just have friends over 24/7 then life would be much better for her.
Thanks for being here when I need you. Much appreciated.
Hugs.
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I know he recommends Dr. Bransfield, but he is in northern NJ (I think) so I don't think that's whom you're referring too. Sorry.
How are you holding up? Hoping you are doing well!
Yeah, I think that was the guy he recommended. It's 7.5 hours from home. Sigh...I just wish it were easier to get help. I guess I'll call Monday afternoon and see what I can learn from them and see if the doctor might be willing to talk with our family doctor.
I'm so frustrated. Maybe its just those few days post ivig where things are really hard and she'll feel better in a few days, but that remains to be seen. She had such a bad night last night. I hate to see her struggling so much. Wishing she wasn't alive anymore.
It is years of built up frustration of dealiang with ocd every day. Things are so much better than they ever were but its been such a slow improvement. And I'm dealing with my own health issues and trying to make some money to pay off all these medical bills. I just wish I KNEW WHEN she would feel better.
Going to do some extra detox and make an apt. with our family doc and see what she says.
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We have a good psychologist but I was looking for a psychiatrist to prescribe meds. feeling frustrated.....
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My daughter is being treated for Lyme and PANDAS. We're a year into Lyme treatment and 2 years into PANDAS treatment. Things have improved tremendously but she is SICK AND TIRED of having OCD, even on a reduced level. She is on Celexa per our family doctor and I've never taken her to a psychiatrist mostly based on my own fear of dealing with unbelieving "experts."
Dr. J gave me the name of someone in CT but I can't remember it off the top of my head (anyone know who he recommends so I don't have to call) and its a LONG drive. I'm hoping to find someone closer to home (Maine) who understands lyme and pandas and knows how to treat a child with elevated antineuronal antibodies. MA is significantly closer.
Dr. J also said that kids with elevated antineuronal antibodies sometimes do well with the drug Cymbalta. Has anyone heard of that before? It typically isn't a first line treatment for ocd.
I will drive to CT if neccesary and would like names and a bit of information on anyone you have found useful and understanding of these illnesses. Thank you.
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My daughter is being treated for Lyme and PANDAS. We're a year into Lyme treatment and 2 years into PANDAS treatment. Things have improved tremendously but she is SICK AND TIRED of having OCD, even on a reduced level. She is on Celexa per our family doctor and I've never taken her to a psychiatrist mostly based on my own fear of dealing with unbelieving "experts."
Dr. J gave me the name of someone in CT but I can't remember it off the top of my head (anyone know who he recommends so I don't have to call) and its a LONG drive. I'm hoping to find someone closer to home (Maine) who understands lyme and pandas and knows how to treat a child with elevated antineuronal antibodies. MA is significantly closer.
Dr. J also said that kids with elevated antineuronal antibodies sometimes do well with the drug Cymbalta. Has anyone heard of that before? It typically isn't a first line treatment for ocd.
I will drive to CT if neccesary and would like names and a bit of information on anyone you have found useful and understanding of these illnesses. Thank you.
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both dd and I tested negative for bart but had symptoms and our separate docs clinically diagnosed us with it, and both of us are responding positively to bart treatment.
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Much thanks to everyone for their caring comments. I appreciate it. Surgery tomorrow. I am in good hands, but its hard not to worry. Will let you know I'm ok at some point when I get back online.
Yeast help please
in PANS / PANDAS (Lyme included)
Posted
Thanks again LLM. I've printed out your posts so I can refer back to them. Will look into getting some Glutamine too. I don't know how you keep all this stuff straight. I appreciate your help more than you know.