Moms who have it too!

[cobbiemommy]

Tuesday, we saw our LLMD and he brought up the idea of congenital Lyme. Ds, 12, has Bart, Babs, and Lyme. DD, 15, has Bart for sure. He asked me about possible congenital Lyme. My only symptoms would be knee pain (right knee intermittent since childhood), depression, hypothyroidism (runs in family), horrible allergies (also runs in family), and weight gain (60 pounds unrelated to eating). I have GI issues, but have just tried to live with them. I used to get migraines, but have not had one in over a year.

 

LLMD treats for allergies, and treats hypothyroidism with Armour. If I start doctoring with him, I could do away with two docs that I use now and our insurance is so bad that the cost would not be much more, even if the Lyme/Bart/Babs does not apply to me. The only catch is that he is a three and a half hour drive away from home.

 

What was the deciding point for getting tested? Treated?

 

Cobbie

[SSS]

My dd6, tested positive first. I was coming from a NO WAY Lyme mindset.

 

When I read all the symptoms, I had just about everything (memory loss, chronic insomnia, chronic fatigue I used to push through with coffee and cigarettes

anxiety, things dropping from my hands- no bad knees or joint pain- although I have nerve damage)

 

Anyway, I had secretly wondered whether I would be dx'd with alzheimers or MS when I got older-

I blamed everything on my stressful life, age, etc.

 

At our first LLMD appt. for dd, he asked if my daughter had ever really 'regressed'

wax and wane in severity, yes! But.... no real regression. She came out the gate very different than my other 2 children.

Anyway, I mentioned I had some symptoms, and the Dr. looked up,

bore his eyes into mine, and said:

Let me guess: This, this, this, and this.

He had me down pat.

 

Did the full panel Igenex at his office.

Came back sky high positive Bartonella, the WB lit up on all the Lyme only bands-

went on to do the Lyme PCR blood test, which found Lyme in my blood,

positive.

 

Looking back, it is all there- I can see it in my past-

I'll be honest, treatment is not fun, I struggle.

But, I want to be around, whole, sound mind, for my kids when they get older.

[Suzan]

At first I thought lyme only fit dd10 and I was slow to come to that thought. She had lots of pain for starters that didn't fit into the pandas diagnosis and would go for periods of time where she could not walk. While I was getting her tested and learning more about lyme, I started to realize my symptoms fit lyme too.

 

Hashimoto's thyroiditis

Weight gain

Fatigue

Joint pain

...to name a few.

 

Then I woke up one day with a paralyzed arm and horrible pain and I was diagnosed with Parsonage Turner Syndrome. I later found out that can be a sign of lyme like Bells Palsy. I started getting muscle twitches and memory loss after that and started getting lost all the time.

 

So I tested me and dd9 too and we all came up with lyme. It became apparent to me that I had had it for years and passed it along to the kids. I wish I would have known before I completely fell apart but such is life I guess right?

 

Susan

[momaine]

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.

[cobbiemommy]

Thank you all for your heartfelt replies. I aprreciate your honesty and sharing your stories. I am always amazed at how honest and generous this group is with one another. I will set up the appointment for after Christmas.

 

Thanks again.

 

Cobbie

[smartyjones]

about 9 mths after ds was diagnosed with pandas, i found a bloated tic on me. dr put me on 2 weeks doxy. i felt very sick on it, but nothing else.

 

a year or so later, i went to ds's dr (integrative MD) just b/c i just didn't feel well. how could i feel this bad in early-40s. a few years earlier, blood tests showed thyroid issues, never really felt better w/med, but blood work looked great. at the time i was diagnosed with that -- i had severe tiredness -- like i'd lay down on the floor to play cars or read with my kids and fall asleep. i also had at various times -- tingling arms and legs when sitting or having my limbs on something -- like armrest; return of migraines that i'd had as a teen; weight gain, bizarre foot issues (at one time i thought gout); irritability, bizarre chest tightening and rapid heart feeling; difficulty short term memory. i'm sure there's others -- generally thinking aging was hitting me hard.

 

dr believes me to have had lyme, babesia, bartonella and some other infectious issues. 4 mths into bart treatment, bartonella rash came out on my upper thigh. i think i had the infections prior to the tic bite -- possibly even congenital from my mom. kind of bizarre that the doxy didn't really do anything -- perhaps it did but not really noticeable. or perhpas it stopped another infection.

 

good luck. keep us posted.

[sf_mom]

I was told Fibro or early onset of RA. The symptoms were there, they were bothersome... especially the afternoon fatigue that was becoming daily 'need to nap' issue, nightly insomnia from 3:00 to 5:00, hip and knee pain, occasional urinary issues. The pain was intolerable when sick with other stuff. I appear to be in good health but I also found myself unable to keep up with my peers in yoga class that used to be no problem. I had also applied for a life insurance policy and the only thing that was abnormal was excess white/red blood cells in my urine which can point to chronic infection or cancer. I decided to test myself because we didn't have concrete answers for our younger twins. Dr. K felt possible PANDAS/ASD traits for younger son. Once I got results, I knew we were dealing with congenital Lyme and thankfully our younger DS tested positive for Babesia/Bartonella/IND for Lyme as well. Left untreated I feel this could have been so much worse for me and our entire family.

 

Treating myself has not been easy... I have had my good and bad periods and have been recently dealing C-dif on top of everything else. BUT, when my days are good I know I can live a normal life again. On those good days, I feel better than I have in years. I primarily treated myself because I wanted to experience what my children are/were going through. I no longer suffer from insomnia or much pain.... remaining symptoms are headaches and afternoon fatigue that has returned recently with cyst busting (daily tindamax), biofilm treatment, babesia treatment. My thyroid was also impacted but things seem to be normalizing there too. Like Momaine treating myself was the best thing I could have done.

 

I also feel like I am much more compassionate towards the littlest complaint my children have with treatment. Just last night my younger DD who is 4 pointed to her eye/head and said it had been hurting her a lot lately. We are also treating her for Babesia and I know its a symptom..... She was all out of sorts emotionally when she came home from school yesterday. Her complaint was a good reminder for me give some advil. She just wasn't feeling well and suffering from a bad headache that came across as mood liability or defiant behavior when she came home from school.

[momcap]

The deciding point for me getting tested, was trying to figure out what was wrong with DS. I tested myself before PANDAS DS. He had unexplained chronic pain that went beyond PANDAS (IMO), and I believe his PANDAS started at age 3, but something was definitely wrong from birth. So the more I read about lyme the more I realized it fit the picture, and I had so many of the symptoms too. I had dragged DS to so many docs and had so many tests done at that point, that I decided to test myself first. I was hoping to rule out lyme and not have to test him at all, but I KNEW it would come back positive. And it did - CDC positive even.

 

I recall having terrible foot pains as a child, but not much else. When I was a teenager I had severe disabling back pain with no obvious cause - elevated markers for JRA, but not high enough to diagnose, migraine aura without pain, Raynaud's syndrome (really bad circulation in my fingers and toes), and severe depression. When I was 18 I broke my foot and had Reflex Sympathetic Dsytrophy as a result - my immune system attacked my broken foot. In University I had a chronic cough off and on for years! When I was pregnant with PANDAS DS my brain went haywire - couldn't remember how to drive, where I was going, how to lock the door, how to use a bank machine. It was terrifying. So when I add it all together it sounds so much like lyme. But I never thought of myself as sick. I was always athletic, energetic, no severe joint pains or obvious lyme symptoms. No tick bite.

 

The funny thing is that I don't have any of those symptoms now. I guess my CDC positive lyme test indicates that I have a strong immune response. So I've opted not to be treated. At least not yet. My entire family is positive on western blots - DH, and all DSs. They are all experiencing a lot of symptoms and all being treated. I'm taking care of everyone else, and praying that I'm not being blind, stubborn, or stupid. I really think I'm okay.