fightingmom

I've been on Diflucan for a week and noticed mine is started to clear up --- maybe there is a yeast component.

Great. Now it will be even harder to get.

OHHHH. I just to to the trailer. Very powerful. Looks like they are still raising funds to produce the movie. They have a goal of $200k and only have $26k+ pledged thus far.

Kathryn Joosten was a psych nurse before becoming an actress...I knew I liked her!

As you know, I am new to finally having diagnoses in this journey. However, I have lived through much of what you have written about for years and I truly empathize with you. I think heading back down the Lyme trail is probably wise -- though, I'm sure it leaves you uneasy and exhausted. If you have already worked with that combination of meds before, and you have them, I don't see any reason not to start that up again. Hopefully it will bring you relief and you will start to see improvement. Hang in there.

So, I actually searched for this thread after just reading through Barrascano's tips for Managing Lyme Disease and thought you might be interested to know that he has used/recommends amantadine in combo with azithromycin in treating lyme. I thought that was interesting, since many of our PANDAS kids have been prescribed zith as well. I'm going to ask our LLMD and Dr. B. in CT about the possibility of trying amantadine. I have always been suspicious of dopamine levels being too low for DS and wonder if this may help while we clear out the infections and build up his immune system.

Oh no. What were you testing for?

She was treated for pandas with zithromax for 2 years and has been in lyme treatment for 1.5 years (zithromax, flagyl, amoxicillin and now doing homeopathic treatment). She's had her PVC vor 4 or 5 years. It is not pounding for her but she says she can feel it. The main reason for seeing a cardiologist is to be sure there is not some other issue going on that would require treatment (I don't know what those are though.....) I have felt pause in the rythm before, too - just not the hard pounding it was the other night. I just don't know if I have it in me to head down the trail of another specialist. This is friggin exhausting. My gut tells me this is all lyme/mycoP related for me. I'm going to lay low and see what happens. If it gets worse, then maybe...

I do ask for this every time and I never get the copy! I also call for results and am told I can not have them.

Smarty, your mailbox is full. We saw Dr. B in Maryland in his private practice. He was recommended to me from members here when I could not find anyone closer within a shorter time period. Trip was over 15 hours round trip with traffic, I rented a car to avoid putting all the miles on mine and we spent close to $150 on gas. Not sure how long we'll be able to hack these trips, but at this point...he's all we have!

YES, my husband explains a constant pain in the back of his eye, accompanied by some stabbing pains that come shooting in out of no where. I don't like to mess around with eye stuff, you never know would could lead to permanent damage. I'm way more concerned with his eye at this point, than my heart. Interesting that the heart issues are seemingly a common product with lyme and co. and you also have mycoP and had eye issues. We have an appt. with the opthamologist at 11am now. I'm trying to figure out if I send husband down the lyme road right now and spend even more money we can't afford on testing and more doctors, or just treat the eye and mycoP and see how it goes. I'm starting to truly question the idea of possible sexual transmission of all this stuff.

That was scary. I have never had anything like that before. I get dizzy a lot and feel faint but this was such a hard pounding beat and then that pause was startling too. How long has your DD been in treatment? They told me to get to a cardiologist and have an echo done, but unless I find a cardiologist that is lyme friendly, I am not going to bother. He mentioned babesia briefly, I have some night sweating, but not all the time. We are going to keep an eye on symptoms. He gave me some chart to fill out and we will discuss again at next appt. I will PM you the LLMD.

Wow, need to vent, but also want to pick your brains. I'm longwinded, I know...I'll try to summarize. Thursday, drove about 6-7 hours round trip from Rhode Island to see Dr. B. in CT for the 3 of us. My son and I had allergy testing, food this time, now we have confirmed no allergies all around. Husband has extremely high MycoP titers IgM of 2,699 on a range of > 950 being positive and IgG of > 5.0 on range of > 1.10 positive. I also have same number for IgG, but no IgM present. They initially were not going to treat me for mycoP but after seeing my husbands test results now they believe it to be a major trigger for my son and they are also treating my husband and I -- kept my son on the Zithromax (along with Augmentin for now - rechecked strep titers waiting for results) and put my husband and I on Levaquin. Okay, fine...we drive home, get back around 8:30pm. Our first appt. with LLMD in Maryland is at Noon the next day, Friday. So, we plan on getting some rest, but around 10pm or so I am on the couch, calm, kicked back with my laptop and my heart starts pounding - feels like it's going to come out of my chest. Seems to be following this weird pattern of BOOM, BOOM, BOOM....pause...continued pause....BOOM, BOOM. I text my aunt who has had a-fib since she was in her 30's - she freaks and tells me to call 911. I wasn't going to do that, but I did go to ER. Well, my EKG was abnormal, was showing paired sets of PVC's (preventricular contractions) which just means that my ventricles were beating early. I was also having a lot of them, the machine kept beeping "PVCs/min HIGH" and it was freaking me out, but all I could think about was getting to our first appt. with the Lyme doctor!!! So, after monitoring me for almost 5 hours, they said all my labs were normal and they had no idea why it was happening except the Lyme could be causing it. Though in the same breath, the ER doc told me that usually when they see lyme causing heart problems the patients are "much sicker" than I am. I could have punched her, but... We leave the hospital at 4am - run home, pick up my son and start heading to Maryland. Make it on time to the appt. with the LLMD. Spend 3 hours with him going over all tests, surgery reports, pics of rashes, history for myself and son and he dx me with Lyme (we knew that one), bartonella (rash and symptoms) and clinical dx my son with Lyme and possibly bartonella -- but doing a few more tests to see if they lean in that direction as well. I think it's pretty much a given with my son's history and the fact that I'm positive I have been sick for longer than my son was alive, so I'm sure it's congenital. He also has history of engorged tick on his head! Anyway, we head back home. Make it home at like 11:30pm on Friday night. Saturday morning I have to be at a 5 hour CPR course for school at 8am. Spent the entire day doing chest compressions and seriously thought they'd wind up doing CPR on me at some point in the day. I was exhausted, and my heart was pounding! But, I made it through. I get home and my husband calls from work and tells me his eye is bothering him. Really hurts and he can't see well, sensitive to light. WTF. He calls me again halfway through his drive home saying he's not sure if he's going to make it. The sun is killing him -- I tell him to pull over, he says he thinks he'll make it...he does. Comes home and his eye is completely blood shot and he's holding his hand over it at all times. I try to get him to go to doctor, but in typical man fashion he says "he'll be fine". Fast forward to Sunday morning and he wakes up, can't open his eye at all, hurts too much and now it even hurts to open his good eye. Actually, when he opens his good eye it causes pain in his bad eye. All light hurts him and the pain is coming from deep in his eye, or in the "back" of his eye. We go to hospital yesterday. They say he has uveitis/iritis. Doc asks about rheumatoid arthritis in family, autoimmune disease and I have a lightbulb moment and decide to tell him about mycoP titers. His eyes light up and he says "REALLY". He goes and does some research, puts a call in to on call opthamologist and tells us that they believe it could most definitely be caused by the mycoP. So, I come home and look this up and it can also be caused by Lyme -- well that's no surprising, the 2 often ride together...but then I wonder...does hubby have Lyme, too? Already was suspect of the mycoP -- but that can come alone...but now... Oh crap. Just crap, crap, crap. thoughts??

Very interesting.

Happy Mother's Day to all of you. You are all truly an inspiration! Thank you all for sharing your wisdom and experiences so freely.

Yes. Rages are also associated with Bartonella. Thank you!!! I was diagnosed with Bartonella at our visit on Friday -- he was suggesting it based on symptoms for both my son and I, but I showed him these dark stretch marks on my thighs and he said it was the Bartonella rash. Great...add another to the load! Actually, I feel like I'm hot on the trail at this point - my pity party is long over - and I'm ready to get my son and I well, for once!

Julia, That's pretty impressive -- glad your husbands cholesterol is down!

Celexa sent my son over the edge. BAD. I'm surprised to see Dr. T. make a generalization like that about specific SSRI's or meds. I think it is highly individual and everyone's experience will be different.

This is very much how my son gets. We have been on augmentin and Zithromax. We didn't really see results until we started the Zithromax and I had also added a few supplements at that time. Though we saw an immediate improvement and I am inclined to think the zith has been the most helpful. We have since learned our whole family is plagued with very high mycoP titers/infection. Also, our dog just tested positive for strep and is being treated. Just a few things for you to consider besides strep in your son.

I can't even find a doc in RI that will entertain the idea of PANDAS --- so being in the next state over I think this is a giant step for our kids -- very excited about this!

WOW! I need to have that test done for my son. Your result is double the high end of normal range. That's a lot of inflammation, no?

Wow. I'm so sorry this is turning out to be such a tedious and expensive process. I hope in the end it provides much relief!!

Interesting that we talked about cycling. Four weeks to the day today, my son had another rage. I know this because it started the day before we had our appt. in CT last month at Dr. B and I had even posted about how I didn't think I'd even be able to get him in the car to get there. Things have been pretty smooth sailing for the last 4 weeks with the addition of Zith to the Augmentin. I saw that blip around 2-2 1/2 weeks, but it was mild in comparison. This morning he was rather argumentative and screamed at me on the way to school to the point I had even pulled over and told him to get out and walk (we live on the same street as school but I drop him on my way to get coffee in the morning). He came home today looking for a fight and parked himself outside my office door to scream and yell and call me swear words again, then he pounded on my door again. I haven't seen this for a month (though this was much more mild, as it didn't last nearly as long). Still... WTF? Could Lyme or coinfections possibly cause him to have rages/anger outbursts in cycles? P.S. I swear this kid is determined to keep me from passing my finals. He's always right on schedule with our exams!

Just wanted to say thank you to each of you for your well thought and extremely helpful posts. If you think of more tips or tricks please continue to post them. I will step up on detoxing and start really upping probiotics for myself and my son as well. I have charcoal, but will buy the clay and aloe juice later today. MTHFR has been on my short list -- going to discuss this with LLMD and ask to order tests for both of us. I definitely see methylation pathway as being greatly important. I have seen improvements since adding zinc -- along with zithromax for my son. He's currently on zith and augmentin. Though, my hunch is that the augmentin is not doing much. His cycles seem to hit more at about the 2 1/2 week mark. Just past 2 weeks and I notice a bump in the road with him. He also gets worse around day 4 of new abx but then levels out again. I'm a little worried about the multiple rounds of steroids I have been on over the years, particularly in the recent months. I keep reading and hearing bad things about permanent damage resulting from steroids. At least my son was only on them once for 5 days. I am taking microbiology over the summer. It's the last class I need to apply to nursing school and it's the one I am most intrigued and excited about. I am even buying a bio microscope to have at home. I have started slipping in school the last few weeks. Dumb mistakes, misreading, notes are jumbled and don't make sense, missing words, forgetting, etc. --- I'm pissed. I have waited years to go back to school, when it would be a good time/age for my son, etc. and I had a 3.91 gpa -- and haven't had one B so far. I think I am going to just miss an A- in my human physiology class (final is tomorrow) and it really bothers me. My husband tells me I am being to hard on myself, but I'm upset because I know I am capable of so much more and I feel like I'm being robbed! I'm gonna have my pity party for another day or two, and then I'm pulling out my stubborn gene and start getting to work on this monster. Maybe this will turn out to be a blessing in disguise. Either way, we are going to beat it --- or I'll at least die trying.

They decided not to actually. We did the lyme test but it was negative. They are thinking it may all be infection related and not kidney failure of any sort. Will go back in 10 days to recheck urine and decide where to go from there. He's already much better. Not peeing in the house anymore at all. Not drinking excessively either.