momaine
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Posts posted by momaine
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Good luck Angela. I know you can heal your cancer. When I read your post i remembered that a woman I met last year told me she was in a breast cancer study about breast cancer and Lyme. She said there was a connection which is not something Lyme patients want to have to wor
That is interesting, because I joined a breast cancer list and told my story and someone responded right off that they knew someone else who was diagnosed with BC when they were mostly healed from Lyme. Does make me wonder. She did say that the person did not regress with their lyme symptoms during cancer treatment but after chemo was over, they had a brief worsening. I'm just hoping that before my chemo starts that I have this lyme bug kicked. Had a foggier day than I have had in a couple weeks yesterday, but that is what lyme does in my life, cycles, and just when I think I'm better, I have a bit of a setback. I know I'll kick its ######, but it can't be soon enough.
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Thanks to everyone for their well wishes. Lyme Mom, you are a wealth of information. You never cease to amaze me. I appreciate all you have written and I'm reading alternative stuff and looking into it, but mostly I'm afraid and knowing that my breast cancer is an aggressive form, am leaning toward traditional therapies. I plan on talking to my LLMD about alternatives too but I'll probably do that in addition to traditional therapies.
So much to learn, so little time. After all the PANDAS/Pitand, and then Lyme stuff, I was ready to not have to learn anything else medical for a good long while. My brain is on over load.
I'm just so glad that the lyme is mostly under control before I begin cancer treatment.
Angela
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Hi,
I don't come on the forum as much as I used to but I wanted to let you know how my dd and I are doing. You guys have been a life line over the last couple of years.
My daughter (Lyme,Bart, PANDAS/PITAND) is plugging along in a positive direction. She is one year out from beginning Lyme/Bart treatment. She still benefits greatly from IVIG and does better initially after treatment then begins to worsen about 5 weeks after treatment. We are always ready for the next one and sometimes wish she had them more frequently. Travel and money would make that extremely difficult though. I feel confident we are moving in the right direction but healing is slower than I would like. She is a busy girl these days, training her young horse, working a job at a pizza store, busy with friends.
My own treatment for Lyme/bart has been very successful. I'd say I'm 95% better. I have no heel pain (occasional two second pain goes through maybe once a month), only have a couple nerve pains when I take my flagyl (up to 3 days now), rarely have muscle pain or joint pain. My brain fog, with the help of Cholestyramine is mostly gone. I'm not sure if I even need it every day anymore but I've been a little afraid to stop thinking this just might be a good cycle. (but I only take it once a day now and not twice)
Now the bad news; I was just diagnosed with breast cancer and I have a long road ahead of me with that. I'm going for a double mastectomy next Friday. FAcing a year of chemo. Time off from work that I couldn't afford before the cancer diagnosis. Feeling like we've already had our share of difficulties and wondering why me? BUT, mostly feel like if I made it through the last few years with my daughter's illnesses that cancer treatment will be a breeze in comparison.
taking one day at a time.
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me three. THe LLMD will know what combination of drugs will most likely get you well. They will try others if the ones you are taking don't work. They will look for and treat co-infections that you may not even know you have.
Best of luck
Angela ~ getting close to 100% well from Lyme and Bartonella.
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I gave it to my dd for a while (pandas/lyme/bart) Didn't notice any difference in her when we stopped it. Sorry I can't be of more help.
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Can you have bartonella without neuropychiatric symptoms??
YES! In fact, I have bartonella with no psychiatric symptoms. My major bart symptom is heel pain. I started treatment for Lyme/Bart last March/April and now my left heel is almost 100% better and my right heel is probably a good 90% better...maybe more.
Now, My dd has Bart with mostly neuropsych issues. Looks totally different.
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115 lbs dd takes 875 Augmentin BID and 500mg of Zith once a day, as well as 50mg Minocycline BID and Tindamax BID twice a week. (being treated for PANDAS, Lyme, Bartonella)
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My dd has been diagnosed with lyme/bartonella and pandas. She has had ten high dose IVIG. Initially, she benefitted greatly from the IVIG....then she seemed to stop benefitting and that is when we discovered the lyme/bart piece. Now, once again, the IVIG's bring her great relief, for a time, then it seems to wear off and she she needs it done again. For her, it has been extremely beneficial.
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Ellen,
I am so sorry to read this. My thoughts and prayers are with your and your family in this most difficult time. Hang in there.
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Hi,
I would agree with everything that LLM and Momwithocdson had to say.
My dd had PANDAS untreated for 3 years before diagnosis. (and a year after that we figured out the lyme piece) She deteriorated slowly in obvious exacerbations over those 3 years until she was completely incapacitated by ocd, so much so, that I thought that if her life did not change for the better, that she would be better off dead. If we had not started antibiotics when we did, I feel that in a few days time I would have had to have her put in a psychiatric facility for debilitating ocd.
Every once in a while, during a herx, we see a glimpse of that and I am thrown back to just how horrible it was and it scares me to death. But then things turn around again for the positive.
When dd started lyme treatment, she worsened considerably for 16 weeks before she turned around. One very long herx, unfortunately.
Sometimes things with lyme get worse before the get better. Something to consider. Best of luck.
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Doxy is helping me with flu like symptoms, but the brain fog and confusion is still really bad. Is there some kind of supplement that would help with this? I was thinking something in the "B" family, but would like your opinion. TU
My doctor said anything that absorbs toxins, like activated charcoal or bentonite clay.
Good luck
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My dd and I who see two different LLMD's take our nystatin twice per day.
I believe I have had stomach pain as a herx, but it is hard to tell if it is herx or from the meds. Part of the reason I think it is a herx is that sometimes it hasn't begun until after I take the two days of Flagyl, and then it comes the following day. I've finally found a happy medium, so I don't get sick.
Instead of taking it with my full dose of doxy, I started taking it without the doxy and now have added back in half a dose of doxy on the same days, if I can handle it.
Good luck. Stomach pain is the worst!
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I think we are in the minority, but both Zoloft and Celexa have brought my daughter some relief from her ocd.
Initially, before PANDAS diagnosis dd started zoloft at maybe 40 mg, ended up at 75 for a while, then went to 125 before discontinuing it in a horrible pandas exacerbation. (thought it wasn't working anymore, but it was an exacerbation, had been on it for maybe a year and a half, total)
At that time, we switched her to Celexa and it helped some at 20mg, helped a bit more at 40mg, but made her worse at 60mg. We went back to 40mg. After she was diagnosed with pandas and was doing better, at one point, we reduced successfully to 20mg but when she worsened with later lyme treatment, we upped it to 40 again, then tried 60 with the same bad results. She is back to 40mg and feeling good about it at that level.
It really is something you have to try and see and write down all changes so you can track it. It doesn't make as much sense in a PANDAS kid, but for some reason it helps mine.
Angela
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I'd would say it is very likely lyme related. My 15 yo dd who has Lyme,Bart, and Pandas, slept till 2 o'clock pm on the days I didn't wake her up, regularly for the last couple of year. Only now after almost a year of treatment does she finally sleep less, but still much more than most people. My LLMD said CoQ10 should help but I'm not sure if it did, when I was giving it to her and taking it myself. Anything that helps with detox should also help. (like activated charcoal, etc)
The thing that has helped me personally, is a prescription called Cholestyramine, which also acts as a detox. I too, am wiped out on the day after my two days of Flagyl, even with the Cholestyramine. (acts the same as Tindamax) Fatigue has been worse for me now as a herx than it was before I was diagnosed, though I was quite fatigued then too.
Some days it hits and I can't quite say why, but other times it seems directly related to when I increased meds.
Good luck.
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I didn't think dd was a Lyme case because she responded so well to steroids. I thought she was classic pandas until she stopped benefitting from IVIG and started getting worse. (after doing fantastic after the first 2 or3) Then we reconsidered and the more I read about it, the more I was positive she had Lyme and bart.
I was so busy thinking and worrying about dd that I didn't consider myself until I read about other moms on this forum getting tested and realized that I had multiple symptoms and they just kept getting worse and worse. Getting treated was the best thing I've ever done for mysellf.
It has been a hard road, but I am SO glad to be getting back to myself. I didn't realize just how sick I was until I started feeling better and remembered what it is like to feel good.
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So so so happy to read these posts. I cannot wait until this is all in our past. Dd's pandas began with recurrent sinus infections which have not returned since starting lyme/bart treatment. I have no idea where the pandas ends and the lyme/bart begins but I hope the sinus infections are a thing of the past.
Enjoy your holidays!
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So so so happy to read these posts. I cannot wait until this is all in our past. Dd's pandas began with recurrent sinus infections which have not returned since starting lyme/bart treatment. I have no idea where the pandas ends and the lyme/bart begins but I hope the sinus infections are a thing of the past.
Enjoy your holidays!
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Alright, I am going to add one thing-
I have been faithfully taking the powder 2x a day since Monday-
the nodule that appeared on the side of my neck 4-5 weeks ago, which has been freaking me out a bit,
(had not changed size while present- just poof! Had it one day- here it has stayed)
is now getting noticably smaller- flattening- since Monday, and I've done nothing different but the powder.
could be just a coincidence, but you might mention it to your dr.
They make a version of the Cholestyramine that has artificial sweetener. That is the one I take. You sort of have to pick between which evil is worse in your circumstance. I'm already over weight so I didn't want the extra sugar, but I'm not crazy about artificial sweeteners either. I guess they make a version of it that has neither of those and no artificial flavors, but my dr. said it cost several hundred dollars more. Not sure if insurance would cover the difference. I'm thinking NOT, since she didn't mention it. The artificial sweetened version I take tastes like tang...with grit. ;P I add a couple ounces of water then top it off with orange juice. Goes down pretty well.
My dr. said its great for that foggy brain that I get and fatigue. So far, so good, for me.
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I'm glad it is helping you!
My dd has been on it 2x a day- I give it in the morning before school, an hour after any meds, and before bed, an hour after any meds/supps.
I was told to take it, too, and got lazy about it, I guess because I wasn't sure I have a mold problem (I know it is not just for mold)
Anyway, had been suffering a lot this last month- nodules on my neck, scalp, exhausted, dizzy, etc.
On Monday, our LLMD told me I need to do 2x a day for detox, and perhaps I wouldn't be feeling so lousy :-/
So I am, too.
How old is your dd? Wondering if my dd's llmd might prescribe it for my dd. I also take it 2x a day. (she said 2 or 3, but 2 is hard enough to fit it between drugs, supplements, food, etc. (she said two hours after food and an hour away from meds) hmmm, my dd hates anything yucky tasting or with a weird texture so not sure if I could get her to take it or not but I feel so much better on it.
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Just wanted to mention that my dr. recently prescribed Cholestyramine for my brain fog/fatigue and it has helped a lot. It binds with toxins and helps you detox. It has to be taken away from food and meds, just like other natural binders. After two days on it, my brain fog and fatigue began to lessen significantly. I've been on it for a week now with good results.
Makes me realize I should do more to help my daughter detox.
She is still doing pretty well, but would always like to be doing better.
Bartonella is a real ###### to get rid of. I'll be glad when this is just a bad memory.
Found out that the Celexa is still doing her some good when I forgot to refill the prescription and she missed several days before we noticed.
After restarting it she quickly went back to where she was previously. -
dd had sinus infections that seemed asymptomatic but actually she did have some symptoms, she had head aches and post nasal drainage that she had become so accustomed to that she didn't realize that it wasn't normal.
when she started lyme treatment, the sinus drainage issues seemed to resolve and so far, no more sinus infections.
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Wishing everyone here a Happy Thanksgiving. I haven't been on much lately, but you guys are like family to me and I'll always have a place in my heart for you all.
This year I am thankful that I am able to work tomorrow. It means my daughter and I are both well enough that I am able to leave the house to go to work tomorrow and have faith that she will make it to my mom's for Thanksgiving with her sister with few if any issues.
I am thankful to all of you who held my hand through the worst of my dd's illness. I am hoping and praying that the worst of it is behind us and that we are moving forward from here on out.
Blessings to you all!
Angela
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We're currently talking with two different doctors in Michigan about doing IVIG for our son. One does 1.5g/kg over 2 days and the other does 2.0g/kg over one day.
Is anyone aware of any other doctors doing IVIG using 2.0 g/kg in just one day? And also does anyone know what steroids, etc. have been ordered to prevent the child developing aseptic meningitis? 2.0 g/kg in one day seems fast and we're concerned. Our doctor has assured us that this hospital does IVIG all the time, etc., but I still have many questions that have not been answered to my satisfaction.
Thanks in advance for any insight!
Julie
My dd gets 1.7g/kg dripped slowly over 2 days. (like 6 hours first day and 5 second day) They also pretreat with Motrin, Benedryl, and prednisone. (40mg of prednisone and she weighs 115 lbs) I only do the prednisone on the days she gets ivig but he suggests a few days longer. Dd also has lyme so I use as little as possible to prevent the migraines.
2 g/kg in one day would very possibly cause serious migraines. I would not recommend it no matter how many times the hospital has done it before.
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This isn't really what you asked, (because she's still on antibiotics) but I thought I'd chime in. 16 weeks into Lyme treatment, my dd made significant improvement, enough so that she could function relatively well during the day. (She even got a part time job at 15 this summer) She is now 9 months into treatment, and although she still has a ways to go, she is functional. The worst thing for her is still OCD difficulties at bedtime.
At her worst, she was non-functional.....thought she'd never be a functional member of society.
Weeks 4-16 after beginning lyme treatment were extrememly difficult with constant herxing.
After restarting it she quickly went back to where she was previously.
Update on me and mine
in PANS / PANDAS (Lyme included)
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Thanks for your uplifting post. I don't know what the connection is, but I have to think there could be one. Lyme really messes up your immune system. Who knows, but I've read of several people with both. I just read a little article in Women's health which was about ten strong women who fought breast cancer and one of them mentioned also battling lyme disease. Just makes me wonder.