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Posted 9/29/2015 6:34 AM (GMT -5)
It's been awhile so wanted to check in, so many thing going on in my life right now.

My mom was found recently to have breast cancer, I am just beside myself and trying not to stress myself out too much, we all know what that can do to our bodies. I am really ready for a break from the bad news department....

I also went to UTSW, they are tring rounds of IVIG on me next week. I had another abnormal EMG but this time she said they saw healing in my muscles and nerves, not everywhere but it's there. It has to be from my treatments with my llmd. They also are not dismissing my Lyme diagnois and think this may also be CIPD or MMN and nothing is specific to ALS as they told me before and two other practices. I will take that and know that the IVIG will also help Lyme.

I hope this finds everyone fighting and getting well, hugs xoxo
Posted 9/29/2015 7:36 AM (GMT -5)
Always nice to hear from you, Kim!

And, so sorry to hear about your mom's diagnosis! (((hugs))) Even though treatment is promising, it's still nothing anyone of us wishes for a loved one or themselves. You both will be in my thoughts and prayers.

Your own news is quite promising and I hope things go well with the IVIG. Step by step we climb the mountain.

Keep on fighting the good fight!
Posted 9/29/2015 8:52 AM (GMT -5)
Hi Kim, It is nice to hear your update.

I am sorry to hear about your Mom. My Mom was diagnosed about a year ago with ovarian cancer. It was really hard for us. She went thru her treatment and is now in remission. I pray that will happen for your Mom also. It is/was so hard to watch my Mom go thru this. I have always loved my Mom, but now I love her more or maybe it is just easier to show her now. It has really brought us closer (and we were close to begin with).

Good luck to you and your family. (((hugs)))

It sounds like you have some good news for your diagnosis.
Posted 9/29/2015 9:37 AM (GMT -5)
Good luck to you and mom! Hope you both do well, hugs!

You will need to be really strong to be there for her and help yourself too....
Posted 9/29/2015 5:46 PM (GMT -5)
Hi SailorKim, It's so ironic that you may have CPID or MMN. I don't know if you remember my posts to you a while ago but I was telling you how my companion was diagnosed with ALS but in the end he went to Syracuse University and was told it was MMN and just recently it was reclassified as CDIP. He did the loading dose of IVIG and was allergic to it. He also is being tested for Lyme as I think that may also be part of his problem.

Good luck to you w/treatment. I went to 2 very prominent Lyme drs and after 21 months I can say I am feeling much less Lyme sick......

I am sorry about your mom. Mine is a very youthful 88 and has kidney cancer. She is scheduled for surgery next week....

Post Edited (mtlassor) : 9/29/2015 4:49:13 PM (GMT-6)

Posted 9/29/2015 10:33 PM (GMT -5)
Mtlassor...this has been a horrible ride, a year almost of being told you have the most horrible and dreaded disease. I almost gave up and succumbed but it just didn't make sense. I know I have lyme without a doubt but to have cipd or mmn too, what are the chances? My husband says it's all lyme but I want to have the IVIG to see if it helps.

What kind of symptoms is your partner having ( if you don't that I ask)

I am so very sorry about your mom, will pray for her. Hugs

Thank you to everyone else who replied, I know I always have a safe place and kind friends to turn to.
Posted 9/30/2015 7:11 AM (GMT -5)
Ya know, I didn't even know what CIPD or MMN were until I did some Googling. As I read the symptoms for each issue, it seemed like I was reading about some of the Lyme symptoms I've had....emphasis on "had".

CIPD and MMN seem to describe a constellation of symptoms and it doesn't seem that there's a known cause.

I'm inclined to think that Lyme patients who were/are diagnosed with either/both CIPD and/or MMN stand a good chance of saying goodbye to those diagnosis(es) with effective Lyme treatment.

It "just" takes time....a LOT of time.
Posted 9/30/2015 10:08 PM (GMT -5)
Thanks SailorKim, I was so tired last night I just realized I typed CDIP instead of CIPD! That's my Lyme kicking in...still confused and see things backwards....I'm so glad you didn't give up or give in. My boyfriends brother died of ALS after an 8yr courageous battle. So when he was diagnosed we were so devastated. It didn't make sense and he went to a neurologist who confirmed he did not have ALS. A few years later he ended up at Syracuse U with a diagnosis of MMN. It was changed to CIDP because of the migratory muscle pain and other factors and I also think that he has Lyme and has had it for several years. I have my own theory that somehow the Lyme brought this about. If I wasn't so tired and fogged I would elaborate. I read for hours but my retention is awful these days. We bought the book-why I can't get better and it makes so much sense.

I am hoping that if he has Lyme he will also start an abx protocol and see some improvement. He went 17yrs of being wrongly diagnosed with muscle pain and muscle wasting, extreme fatigue, confusion, etc.

Good luck with the IVIG. A friend of mine actually had it in the Bahamas and that along with antibiotics helped him greatly. He woke up one day and was paralyzed. He had been bitten 16 months earlier in Sweden and had the bullseye and had a photo on his phone. They gave him the IVIG because they thought he has MS. No one in the Bahamas knew about Lyme!
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