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Worst weekend EVER - Lyme/MycoP = 2 ER visits!


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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??

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Wow, HUGS! What a time you've had...

 

Regarding the PVC's, my dd has them too. I assume they are lyme related and waiting for them to go away with treatment. So far no luck but I'll keep hoping. She was monitored by a heart specialist for a few years but they don't see her anymore since it's "just" a PVC.

 

Susan

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just read over quickly and don't have much time --- did you discuss babesia with LLMD?

unbelievable -- but i feel a little foggy on my TBI and symptoms -- a year ago, i felt it was forever ingrained in my brain.

 

 

i'm curious who you are seeing in MD -- can you PM me the LLMD name? thanks

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Wow, HUGS! What a time you've had...

 

Regarding the PVC's, my dd has them too. I assume they are lyme related and waiting for them to go away with treatment. So far no luck but I'll keep hoping. She was monitored by a heart specialist for a few years but they don't see her anymore since it's "just" a PVC.

 

Susan

 

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.

 

just read over quickly and don't have much time --- did you discuss babesia with LLMD?

unbelievable -- but i feel a little foggy on my TBI and symptoms -- a year ago, i felt it was forever ingrained in my brain.

 

 

i'm curious who you are seeing in MD -- can you PM me the LLMD name? thanks

 

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.

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Sounds like a rough weekend!

 

My DD has had them too. Went to top cardiologist at CHB and everything was fine ("normal" arrhythmia, he said). Now as I look back I think it was tied to Lyme/Bartonella. I have had some serious eye problems over the years -- stabbing pains, detached retinas, as well as lots of tearing and thinning. I believe possibly tied to Lyme/Bartonella (Retina specialist says no). We both also had MycoP.

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I had a lot of night sweating with Bartonella.

 

Wow, HUGS! What a time you've had...

 

Regarding the PVC's, my dd has them too. I assume they are lyme related and waiting for them to go away with treatment. So far no luck but I'll keep hoping. She was monitored by a heart specialist for a few years but they don't see her anymore since it's "just" a PVC.

 

Susan

 

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.

 

just read over quickly and don't have much time --- did you discuss babesia with LLMD?

unbelievable -- but i feel a little foggy on my TBI and symptoms -- a year ago, i felt it was forever ingrained in my brain.

 

 

i'm curious who you are seeing in MD -- can you PM me the LLMD name? thanks

 

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.

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Sounds like a rough weekend!

 

My DD has had them too. Went to top cardiologist at CHB and everything was fine ("normal" arrhythmia, he said). Now as I look back I think it was tied to Lyme/Bartonella. I have had some serious eye problems over the years -- stabbing pains, detached retinas, as well as lots of tearing and thinning. I believe possibly tied to Lyme/Bartonella (Retina specialist says no). We both also had MycoP.

 

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.

Edited by fightingmom
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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!

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Oy!

 

I just sent you a PM, before I read this.

 

Yes, Lyme and Co. can be the cause of the heart pounding, if it is it will resolve with treatment. Did the LLMD mention supplementing with magnesium and or CoQ 10? They may help.

 

After reading about your husband and Myco.Pn..I really need to get my spouse's titers- he's had walking pneumonia in the past, and DD still has positive Myco. Pn IgM and IgG despite being on abx...it makes me wonder if she is constantly being re-exposed. <sigh>

 

You are on the right track, things WILL be better some day!

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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.

 

 

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.....)

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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.

 

 

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...

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Wow, I am so sorry.

Just from my perspective, yes, it all sounds like Lyme and co-infections to me.

Here is me being motherly, and my own experience:

You guys need to take it easy.

Now that you have had your initial appointments in person, can you now do phone appointments, and get anymore lab testing done locally, your doctor's mailing them to you?

And they can phone in your prescriptions to your local pharmacy.

Are you almost done with school?

I have really simplified my life- I know not everyone can do this, but then again, it becomes necessary. I take care of my 3 kids, and the house (sometimes calling in the housekeeper) and keep my marriage well. And that is it! My kids are not in a bunch of activities. We are ill, she and I, this is life right now. And it still is good (besides the Lyme, ha ha)

Money is tight, but we work it out.

 

Not to sound dramatic, but our old LLMD was a 3 hour drive each way- both dd and I - so you are talking intensely for an hour straight, taking notes, labs- then a 3 hour drive home.

It would utterly exhaust me. I wasn't allowed phone appointments, not really- it was hard.

I got very lucky (CA) and was able to find a new LLMD much closer, who is a better fit.

But try to see if you can do phone appointments now-

Write down things-

I have separate notebooks for dd and I- fresh page every day, I write down what time and which vitamins, supplements are given-

I keep my meds on a top cabinet, hers in a lower cabinet-

Please, please, take care of yourself, rest!

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Sounds like a rough weekend!

 

My DD has had them too. Went to top cardiologist at CHB and everything was fine ("normal" arrhythmia, he said). Now as I look back I think it was tied to Lyme/Bartonella. I have had some serious eye problems over the years -- stabbing pains, detached retinas, as well as lots of tearing and thinning. I believe possibly tied to Lyme/Bartonella (Retina specialist says no). We both also had MycoP.

 

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.

Just saw your post on eye pain. I had that too and it was scary. That is when I went to the immunologist and had the Western Blot done and discovered that I am +. I have taken about 2 months of Doxy and my eye symptoms are better. I went to a Dr for my eyes and he didn't "get" the Lyme thing at all. It was almost like seeing a Dr who does not believe in Pandas. It was pretty upsetting.

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  • 3 weeks later...

Wow, I am so sorry.

Just from my perspective, yes, it all sounds like Lyme and co-infections to me.

Here is me being motherly, and my own experience:

You guys need to take it easy.

Now that you have had your initial appointments in person, can you now do phone appointments, and get anymore lab testing done locally, your doctor's mailing them to you?

And they can phone in your prescriptions to your local pharmacy.

Are you almost done with school?

I have really simplified my life- I know not everyone can do this, but then again, it becomes necessary. I take care of my 3 kids, and the house (sometimes calling in the housekeeper) and keep my marriage well. And that is it! My kids are not in a bunch of activities. We are ill, she and I, this is life right now. And it still is good (besides the Lyme, ha ha)

Money is tight, but we work it out.

 

Not to sound dramatic, but our old LLMD was a 3 hour drive each way- both dd and I - so you are talking intensely for an hour straight, taking notes, labs- then a 3 hour drive home.

It would utterly exhaust me. I wasn't allowed phone appointments, not really- it was hard.

I got very lucky (CA) and was able to find a new LLMD much closer, who is a better fit.

But try to see if you can do phone appointments now-

Write down things-

I have separate notebooks for dd and I- fresh page every day, I write down what time and which vitamins, supplements are given-

I keep my meds on a top cabinet, hers in a lower cabinet-

Please, please, take care of yourself, rest!

 

Hi there. Sorry I had not responded to this, I did read it a few weeks ago and meant to come back to reply, but I have been so tired lately, I just didn't. No excuses. I'm sorry for not replying when you took the time to respond, though. Thank you.

 

Yes, our next appt is via phone and we have had meds called into the pharmacy already. So, that is nice. At least we won't have to travel for another month or two to MD again at least. Have another appt. with Dr. B. in CT for PANDAS stuff in a few weeks, but that seems like nothing compared to that Maryland trip. I am finishing up my last pre-req to apply to nursing school, but application period is in August for Spring semester. So, in about 4 weeks when I finish up microbiology I will be on a break from school until January 2013. Hopefully by then, I will have made some progress. I've worked so hard not to pursue this, and I've waited so long to go back to school, I'm not giving it up.

 

I like your notebook idea and separate cabinets for meds. I need to get more organized in that regard. My son has been having issues with meds, too. Throwing up at school and his esophagus is bothering him so swallowing is an issue now. More labs from him came back abnormal. WBC's all out of whack.

 

His CD57 also came back as a 20 -- same as mine, which is weird to me. Waiting on his Igenex results.

 

I am getting swollen and painful veins now. In my arm and my foot I literally have round lumps over my veins and it's extremely painful. Of course, I am blown off about it. Was told perhaps I have a tendon injury in my foot. Idiots.

 

My husband is next in line to be tested for Lyme. Trying to give it a month or so, this is getting so damned expensive.

 

Sounds like a rough weekend!

 

My DD has had them too. Went to top cardiologist at CHB and everything was fine ("normal" arrhythmia, he said). Now as I look back I think it was tied to Lyme/Bartonella. I have had some serious eye problems over the years -- stabbing pains, detached retinas, as well as lots of tearing and thinning. I believe possibly tied to Lyme/Bartonella (Retina specialist says no). We both also had MycoP.

 

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.

Just saw your post on eye pain. I had that too and it was scary. That is when I went to the immunologist and had the Western Blot done and discovered that I am +. I have taken about 2 months of Doxy and my eye symptoms are better. I went to a Dr for my eyes and he didn't "get" the Lyme thing at all. It was almost like seeing a Dr who does not believe in Pandas. It was pretty upsetting.

 

I can imagine that would be extremely upsetting. How are your eyes doing now? My husband is doing better, still on Levaquin for MycoP though, and I wonder if that was helping more than the drops. I strongly suspect it's the mycoP or possibly Lyme (he hasn't been tested yet) causing his eye issues.

 

This crap is so freaking exhausting. I was always that one of my friends and family that touted about organics and BPA's in plastics and recycling, etc. -- I even am careful not to over-vaccinate my pets and feed them grain free, organic or raw foods. It just makes me so mad. I feel like I "do all the right things" and still my family gets sick...but the people down the street eating fast food all day are fine, ya know? That was my little "it's not fair" cry - I'm over it for now, but deep down, it does really get to me.

Edited by fightingmom
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