My family update

[PacificMama]

Hi All,

 

All the puzzle pieces are starting to fit together. Here is an update about my family – I hope that it may help some people here find their own answers. (and sorry… it turned out much long than it should be!)

 

The journey began when my oldest daughter became incredibly ill at 2.5 years. It took me nearly another year of countless trips to specialists, medical tests, research and on and on (you all know the same path yourselves!). I pleaded for the docs to consider lyme because we had the exposure. When the tests finally came back, she was positive beyond a doubt with 7 bands positive on western blot and positive by pcr. Suspected/likely bartonella too. Getting a doctor to treat her beyond 30 days of abx was not going to happen locally, and so off we went to the best llmd pediatrician. My daughter was in a bad way at this time, and her treatment to recovery was a rocky road at times. But always there was progression, and finally we reached the land of “symptom free”. That took about 2 years (with lots of progress early on, and a slow climb after that). But we likely stopped the abx too soon, and did not adequately treat the cyst form. She relapsed into neuro symptoms after 5yo immunizations (what you all know as PANDAS type symptoms). Back to llmd, back on abx (including a cyst buster!). She is symptom free and doing fantastic today.

 

The update is that our family has been blindsided by lyme yet again. The short version is that my younger daughter has had terrible gastro-intestinal issues since about 1yo (she is now 5). She has always had mood liability issues. Bladder issues. She went through what I would call a 6 month-long semi-autistic state following 1yo immunizations (which she seemed to eventually pull out of). She was diagnosed with multiple food and environmental allergies, and that is what we always thought we were dealing with. She has seen a ton of specialists too! But in the past 6 months her symptoms started to include migratory joint pain, tooth/jaw pain (a big lyme symptom btw), headache, sleep issues, nightmares, coginitive dysfunction and staring-type absence seizures. She had a thorough neuro work up (ct scan, 2 eeg’s, other tests). At this time I of course had her tested for lyme, and was devastated when she came back unquestionably positive. Devastated because I had missed it for so long, but happy that we finally had a diagnosis we could treat and RECOVER from.

 

Well, you know what’s coming next. I of course am advised by doctor to test myself. And am further devastated to have my own lyme test come back indicative of lyme. Not positive, but positive or indeterminate on the important bands. The doctor wants me to begin treatment. I am unsure at this time what I will do. I am what you might call vaguely symptomatic, with most of my symptoms something you might attribute to getting older or being a tired parent (fatigue, joint fatigue, worsening eyesight, etc). However, I have mild vertigo. I have autoimmune thryroid disease (hashimoto’s). Everything I’ve ever had in recent years I’ve attributed to my thyroid disease. But perhaps the thyroid disease should be attributed to the lyme. In any event, I’m quite functioning at this point, get everything done I need to, walk several miles a day, etc. My fear is that some future event or illness will cause the symptoms to cascade down upon me, so I do want to treat before that happens.

 

Did I contract lyme when pregnant with my younger daughter, on the camping trip where we believed my older daughter had her tick bite? Or did I have it all along, even before I gave birth to my older daughter? Did I pass it on to both of them, and then later immune-triggering events (like immunizations, other illnesses, subsequent bite) set off their unfolding of symptoms? Like so many of you, I will never have an answer. I never considered the congenital possibility because I myself was not terribly symptomatic. But I have since learned that this is often the case (that the mother does not have to be particularly symptomatic). In any event, I am beyond heartbroken that my younger daughter has gone untreated so long.

 

I of course have spent many hours on this board, much of it asking people to consider the possibility that their child may have one of these infections. Especially in families like mine and so many of yours, where there is more than one family member with health issues. I did receive my ILADS DVD and watched Dr. Corson’s presentation again with my husband. I wish I could send a copy to everyone who’d like to see it. Because her whole presentation wasn’t so much a lyme 101. It was really a discussion focusing on infectious possibilities for neuro-pysch and cognitive dysfunction in children – something that affects everyone here. So there’s another plug for people to spend the $20 and watch the presentation.

 

Sometimes the topics I have posted on take an unfortunate turn down the road of distraction. I am sincerely sorry that this happens. Beyond that, I probably can’t convey in words what I’d like to say from my heart. This board should certainly be a positive place where people get information and support from one another.

 

I do not know if this has been helpful for anyone -- maybe I just needed to write it all down for myself. Still processing, you know. I wish every family here all the best, and if I’m not around posting, I’m still happy to help via PM if I can ever do anything for anybody.

 

Sincerely,

Mary

 

p.s. I’ve asked Chemar to add a couple of posts to be pinned to the top here. Please include others that you feel are especially helpful.

[MichaelTampa]

Sure hope you both get the treatment you need.

 

The lyme symptoms really can grow slowly worse and sneak up on you. This is what happened to me, either since birth or childhood, and it did not reach a real crisis stage until age 39, brought on by quite an unrelated event that I would have been much better prepared for without the lyme. I think a lot of little/alternative things you can do for your health can help, but the downside is they end up masking real problems and delay treatment and what we all hope would be true health.

 

Wishing you the best!

[KeithandElizabeth]

Hi Mary:

 

I completely understand your heartbreak about your younger daughter having lyme disease! I am so very sorry! I am always wondering how long my kids have had lyme disease and was it congenital? Again, we will never know and that is so frustrating!

 

And I am so very happy that your older daughter is doing so well! That is wonderful news!

 

Thank you for your update and for being such a strong advocate in terms of checking for an infectious disease and especially the tick borne diseases as a possible culprit to the "PANDAS" symptoms. Your posts and lymemom's posts have been invaluable to our family.

 

My thoughts are with you on your journey of healing your younger daughter and yourself!

 

Elizabeth

[philamom]

Mary-

Thank you for sharing your family's personal journey with us! It's a tough decision on whether to start treatment while vaguely symptomatic or wait until your have no choice but to treat. Like you said, there is the fear of some later illness to cause major symptoms. I agree you are making the right decision. Hopefully, you will have fast healing! And like Elizabeth said, your post have been invaluable to our family as well! Thanks again!!

 

When you say your daughter "had lots of progress early on and then a slow climb after"-- can you elaborate on that? I'm suprised at the results I'm already seeing with my dd's treatment plan. I'm also worried when it will be time to switch up the abxs.

 

My prayers are with you and both daughters- Melinda

Edited November 5, 2010 by philamom

[PacificMama]

Thanks for the supportive words.

 

Michael: Yes, disease can be ever-morphing. And certainly the fear is that it unravels. I think I was thrown off in part because the experience of lyme for my two daughters is so different. Another piece of the puzzle.

 

Elizabeth: Thank you. It has been so wonderful to continue to hear about the progress in your family! And in the end we just have to take satisfaction in the healing, even if we are left to wonder about the start point.

 

Melinda: thank you too. I'm glad to hear about your daughter's progress. I hoped it would not be a downer for people to hear that it took my daughter 2 years until symptom free. First, she was very little and very sick for a long time before beginning treatment. She truly was a case where the lyme seemed to infiltrate her on a multi-systemic level. She had great progress right out of the gate -- night sweats gone; ocd behaviors gone; facial palsy gone; immediate improvement in other joint pain complaints. The other symptoms herxed and cycled, with a couple of change-ups in abx when relapse happened. (one of the most frustrating things is trying to differentiate a cyclical flare from a true relapse that needs addressing. Your doctor will help! Detox will alleviate a flare, and you'll know it was a flare).

However, when I look back and read my daily journal, I honestly think that it took this long in part because for over a year all I did was give the abx, along with a mediocre probiotic. I just didn't know what you all already know: quality probiotic; quality supplements and detox are key! Once I started doing these in earnest, she seriously took off and was symptom free within months (magnesium and probiotic making the most difference). The mistake I made was stopping abx too soon, and also her doctor believed at the time that she was too young for a cyst buster (which I believe the thinking has changed on this). So cyst form became active again after immunizations.

 

Hope this helps!

[philamom]

Mary-

Can you recommend a Magnesium supplement for my dd(9)?

Do you want to add a post "books recommended" in the pinned section.

Melinda

[cobbiemommy]

I just wanted to thank you for your wonderful story. My DS, Ryan would still be in a horrible place if it weren't for the moms on here that kept insisting that if PANDAS treatment didn't work, check for Lyme. Thank you for being so open about the ups and downs of treatment and that PANDAS is not the only possibility.

 

Cobbie

[sf_mom]

Mary,

 

I read your post earlier today and it took my breath away, my stomached rolled over and just couldn't muster up a response. Maybe its because Lyme Mom and your posts saved my entire family from this awful disease and our stories are so similar.

 

- Children became incredibly ill: CHECK

 

- Blindsided by Lyme - all three kids: CHECK

 

- Mother's test results indicative of Lyme: CHECK (although we did further confirmatory testing)

 

- Mother only slightly symptomatic: CHECK

 

- Attributed most of my symptoms to getting older: CHECK

 

- Topics I have posted on take an unfortunate turn down the road of distraction: CHECK

 

My heart breaks for the unsuspecting parents that have no idea the destruction Lyme Disease can cause on a small child's immune system. I feel extremely fortunate to have discovered this so early for my children. Its been crazy in our household with one child's symptom's now mostly physical complaints, one raging from the herx, one fairly stable and me having my moments of being unable to function. ITS OUR NEW NORMAL... and our family life is about getting everyone well. BUT, amazingly enough I do see hints of a healthier family that gives me the confidence to keep going (plus, I realize we have no other choice). Party when everyone is well.

 

Corsa, Romy, Bena, Wendy and Chris will be forever grateful to you.... I look forward to hearing more of your families success with treatment.

 

-Wendy

Edited November 5, 2010 by SF Mom

[PacificMama]

Mary-

Can you recommend a Magnesium supplement for my dd(9)?

Do you want to add a post "books recommended" in the pinned section.

Melinda

 

The mag supplement that we always have used is Natural Vitality Kids Calm. However, it's recently been discontinued. We switched a bit ago to using Natural Vitality Calm Magnesium with Calcium. It's a powder mix, and I adjust dosage accordingly. The Kid's Calm recommendations were for 120mg mag for ages 4 to 8, and 240mg for ages 9 to 13. So you could use those recs when mixing the adult powder. Start with 1/2 rec dosage, and work up.

http://www.iherb.com/Peter-Gillham-s-Natural-Vitality-Natural-Calm-Plus-Calcium-16-oz-454-g/7863?at=0

 

We also now use their new Kids Calm Multi; it's a liquid multi vit/min mix that needs to be refrigerated. It's awesome! And does contain extra mag/cal too. My husband and I use the adult multi version and love it as well.

http://www.iherb.com/Peter-Gillham-s-Natural-Vitality-Kids-Natural-Calm-Multi-Organic-Orange-Splash-Flavor-30-fl-oz-887-ml/22855?at=0

 

Lyme eats magnesium. It's really key to supplement with this... magnesium regulates so many functions in the body. Try to take away from abx. A dose before bed helps with sleeping.

 

**Yes, link to recommended books is a good idea. I will post something above, and then notify everyone to post their books.

[PacificMama]

Cobbie: thank you for the nice words. I look forward to hearing how things continue to progress for your son.

 

Wendy: !!! Check, check, check please. Yes, the new normal. Hang in there. You are in the worst part right now, and it does not get worse. It just gets better, and occassionally maddening and frustrating. But I hope you feel like I do, also excited at the possibility that not only are my kids not going to be chronically ill for the rest of their lives. But that I am going to feel better myself. Because I had honestly thought that this was aging, and this is just how things were going to be. As far as my youngest daughter, I sincerely thought she had inherited immune dysfunction from me, and that she would be battling allergies and gut issues forever. So the idea that it is infectious disease for her also, that she can recover from, is wonderful. So yes, there will be a party.

 

Finally, I will tell you all a story. Back several years ago when my oldest daughter was critically ill with lyme, I made contact with the state lyme support person. Her own daughter had been critically ill several years before that, and they were told the girl had less than a year to live. They actually sold their house and moved to a location that the daughter wanted to spend time in as a "last wish" sort of thing. The doctors refused to treat for lyme, and said it was a X degenerative disease. Due to the kindness and intervention from others, the woman and daughter eventually found their to the good pediatric lyme doctor. Fast forward to today, the girl is healthy and all grown up, married and just had a child of her own a few months ago.

So back a few years ago when I made contact with her searching for help, she gave me her appointment slot for the good pediatric lyme doctor set for the following week. Instead of a 4 month wait for my critically ill daughter, I was able to take her immediately and begin treatment that changed her life.

 

I will never forget the kindness of this woman -- she had never even met me, just spoke to me on the phone. I always keep that experience at the forefront of my mind -- pay it forward as they say. And I know that is the intention of so many people on this board as well.

 

Mary

[momofgirls]

Mary,

I am so sad to hear you and your younger daughter are both beginning this journey BUT you are now armed with the knowledge to get her the help she needs quickly. She will get better and so will you. Getting one child well and then beginning with another is so hard but the good news is that you are better prepared this time around. This is certainly not the journey we all chose for our children but we've no choice and you can count on us all here for support. Your posts on this forum turned pages in many of our lives and I am forever grateful. Good luck to you and your little one. I know she will be fine.

Kim

[matis_mom]

Thanks for that post! I am in a similar place here, with a second child and third child who I very much suspect have Lyme, and almost sure I have it myself too.

Interestingly enough I also have thyroid problems, which coincidentally started after I had a few days of what felt very much like a really bad flu, incredibly tired, could not function, etc, and I also had a very strong, out of the blue jaw pain. After that I've had depression, fatigue, tingling feelings, joint pain (comes and goes), a couple of instances where I felt suddenly very tipsy (I guess that's vertigo?), etc. Plus, I kept getting strep (not good for a PANDAS mom!). I did not put it all together until I started looking into Lyme for my PANDAS ds.

So your post is helpful to me in that I will pursue treatment even though I am not "that bad." I still have not gotten a positive test, but hopefully soon (I'm seeing an LLMD on Monday).

Thanks for posting, and I hope every member of your family recovers fully.

And don't blame yourself. Who knows, maybe if you had had her tested back then it would have been negative and then you would have closed that door. Maybe being so young she would not have tolerated the antibiotics well. Everything happens for a reason. God is taking care of you, don't worry.

 

Isabel

[Iowadawn]

There are so many people & posts in this thread to ditto with THANKS!! What a journey it has been. Without this forum I do not know where we would be. We are in the midst of Bb,babesia, & bartonella tx for our PANDAS ds11. I am positive & I just sent off for 3 more IGeneX kits for the rest of the family. I highly suspect our dd16 to be positive. I actually bet our whole fam-damnily is positive--NEVER would have found this in our son w/o you mom's. The cyst buster gets added to Evan's mix in a couple weeks. DITTOS Galore! Dawn

[sptcmom]

Mary, your views and wisdom has helped me tme and again. DS and I would be in a horrible place if it weren't for moms like you on these forums. I feel sad about your ordeal and will keep you in my prayers.

We recently joined the congenital Lyme team. DS has congenital Bartonella and I have congenital Bartonella. Its going to be a long journey.

Best wishes and warm regards

Jodie

[lyme_mom]

Hi All,

 

All the puzzle pieces are starting to fit together. Here is an update about my family – I hope that it may help some people here find their own answers. (and sorry… it turned out much long than it should be!)

 

The journey began when my oldest daughter became incredibly ill at 2.5 years. It took me nearly another year of countless trips to specialists, medical tests, research and on and on (you all know the same path yourselves!). I pleaded for the docs to consider lyme because we had the exposure. When the tests finally came back, she was positive beyond a doubt with 7 bands positive on western blot and positive by pcr. Suspected/likely bartonella too. Getting a doctor to treat her beyond 30 days of abx was not going to happen locally, and so off we went to the best llmd pediatrician. My daughter was in a bad way at this time, and her treatment to recovery was a rocky road at times. But always there was progression, and finally we reached the land of “symptom free”. That took about 2 years (with lots of progress early on, and a slow climb after that). But we likely stopped the abx too soon, and did not adequately treat the cyst form. She relapsed into neuro symptoms after 5yo immunizations (what you all know as PANDAS type symptoms). Back to llmd, back on abx (including a cyst buster!). She is symptom free and doing fantastic today.

 

The update is that our family has been blindsided by lyme yet again. The short version is that my younger daughter has had terrible gastro-intestinal issues since about 1yo (she is now 5). She has always had mood liability issues. Bladder issues. She went through what I would call a 6 month-long semi-autistic state following 1yo immunizations (which she seemed to eventually pull out of). She was diagnosed with multiple food and environmental allergies, and that is what we always thought we were dealing with. She has seen a ton of specialists too! But in the past 6 months her symptoms started to include migratory joint pain, tooth/jaw pain (a big lyme symptom btw), headache, sleep issues, nightmares, coginitive dysfunction and staring-type absence seizures. She had a thorough neuro work up (ct scan, 2 eeg’s, other tests). At this time I of course had her tested for lyme, and was devastated when she came back unquestionably positive. Devastated because I had missed it for so long, but happy that we finally had a diagnosis we could treat and RECOVER from.

 

Well, you know what’s coming next. I of course am advised by doctor to test myself. And am further devastated to have my own lyme test come back indicative of lyme. Not positive, but positive or indeterminate on the important bands. The doctor wants me to begin treatment. I am unsure at this time what I will do. I am what you might call vaguely symptomatic, with most of my symptoms something you might attribute to getting older or being a tired parent (fatigue, joint fatigue, worsening eyesight, etc). However, I have mild vertigo. I have autoimmune thryroid disease (hashimoto’s). Everything I’ve ever had in recent years I’ve attributed to my thyroid disease. But perhaps the thyroid disease should be attributed to the lyme. In any event, I’m quite functioning at this point, get everything done I need to, walk several miles a day, etc. My fear is that some future event or illness will cause the symptoms to cascade down upon me, so I do want to treat before that happens.

 

Did I contract lyme when pregnant with my younger daughter, on the camping trip where we believed my older daughter had her tick bite? Or did I have it all along, even before I gave birth to my older daughter? Did I pass it on to both of them, and then later immune-triggering events (like immunizations, other illnesses, subsequent bite) set off their unfolding of symptoms? Like so many of you, I will never have an answer. I never considered the congenital possibility because I myself was not terribly symptomatic. But I have since learned that this is often the case (that the mother does not have to be particularly symptomatic). In any event, I am beyond heartbroken that my younger daughter has gone untreated so long.

 

I of course have spent many hours on this board, much of it asking people to consider the possibility that their child may have one of these infections. Especially in families like mine and so many of yours, where there is more than one family member with health issues. I did receive my ILADS DVD and watched Dr. Corson’s presentation again with my husband. I wish I could send a copy to everyone who’d like to see it. Because her whole presentation wasn’t so much a lyme 101. It was really a discussion focusing on infectious possibilities for neuro-pysch and cognitive dysfunction in children – something that affects everyone here. So there’s another plug for people to spend the $20 and watch the presentation.

 

Sometimes the topics I have posted on take an unfortunate turn down the road of distraction. I am sincerely sorry that this happens. Beyond that, I probably can’t convey in words what I’d like to say from my heart. This board should certainly be a positive place where people get information and support from one another.

 

I do not know if this has been helpful for anyone -- maybe I just needed to write it all down for myself. Still processing, you know. I wish every family here all the best, and if I’m not around posting, I’m still happy to help via PM if I can ever do anything for anybody.

 

Sincerely,

Mary

 

p.s. I’ve asked Chemar to add a couple of posts to be pinned to the top here. Please include others that you feel are especially helpful.

 

Oh Mary I am so sorry! I didn't have time to post yesterday b/c I was busy with a bunch of appointments but I breathed a heavy sigh when I read your post. I am sure you feel like you just climbed Mt Everest to get your older daughter well and now you have another mountain to climb. This time though it will be a shorter journey b/c you are now an expert. If only we all could have the knowledge we need to cure our kids when they are first diagnosed! It just goes to show you how Lyme is the great imitator and even someone as knowledgeable as you are can miss it! Your posts here are always so well written and informative. I know you have helped so many and I have enjoyed learning from your and others experiences treating lyme disease.

You should know that if you have lyme you have a lot to look forward to after you treat it. Several years before I was diagnosed I also had periodic fatigue that I attributed to being a busy mother of three with too much work to do (driving, cooking, cleaning, etc.) I saw a naturopath and she thought I had a hormonal imbalance and prescribed a remedy. It helped a little but I continued to get really tired once in a while. I figured I was getting old. I no longer ran and figured those jogging days were over (I had been a runner into my thirties but rarely ran anymore). I even got to the point where I didn't like to have a glass of wine b/c it made me feel so awful the next day. I tried not to stay out late either b/c I really needed my sleep badly. My husband always seemed to have so much energy and wanted to do things but I found these activities to be overwhelming at times b/c I just didn't have the same level of energy. You know weekend trips, concerts, etc. I had adjusted my life to my new energy level and slowly I had cut back and hadn't really noticed it. I also gained weight and this was years after my last child was born :-). Once I learned that I had lyme and babesia and I got the proper treatment I felt ten years younger. It took me 9 months once I was on the right treatment. I started running again one day and was surprised that I could run a couple miles with no problem. I wasn't winded or sore or fatigued-I just got on the treadmill and did it. I also dropped about ten or 15 pounds without trying. This is apparently a common benefit of lyme treatment. I think there are a lot of moms out there who are attributing these symptoms to age and who are giving themselves a hard time about weight gain and lack of exercise who are really sick with lyme. I got my life back with my lyme treatment in ways I never could have imagined. This is why I am so enthusiastic about getting others to get checked for lyme. YOu have no idea how good you can feel if you are sick with lyme b/c it sneaks up on you.

Your family is in my thoughts and prayers Mary. Hang in there!