posted
New here, even though I've referred several friends here. Didn't think I'd need to make use of this board
But alas... here I am.
I'm having difficulty nailing down any information about 'congenital' Lyme, even though I've seen it referenced multiple times in various blogs, etc. I'm also now completely confused as to if I should be looking at Lyme as a diagnosis (apparently, Lyme can be EVERYTHING)!!!
My husband's main symptom is crippling fatigue. He can get excessive amounts of sleep, but it doesn't matter. It's like he's allotted a certain number of waking hours, and it doesn't matter when he starts them, he always gets the same amount. Sleeping 10+ hours a night = him waking up feeling fatigued still. Add in any form of normal activity (i.e. mowing the lawn) and he literally CAN NOT stay awake in the afternoon hours. It is affecting his job performance now.
He does get headaches, but he downplays them. His only other symptoms are apparently GI-related.
Now, the catch is: his mother had this all her life, but she has other symptoms (chronic joint pain, migraines, vision issues, etc) but thinks we're complete whackos for talking about Lyme. His sister also displays symptoms, but worse, including migraines, random light sensitivities, seeming 'allergic reactions' out of nowhere. No doctor has been able to pinpoint anything on any of the 3.
I'm stumped. I guess this is a "should I be looking for a LLMD?" post.
Is there more info I should be looking at? Isn't "chronic fatigue" just Lyme disease anyway?!?
Maybe I'm paranoid about Lyme. I have 2 friends who took 7-10 years to get diagnosed, and another who was never diagnosed but has all the right stars aligned for Lyme.
Posts: 5 | From Illinois | Registered: Jun 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
Sorry about all this. My approach would be that unless my husband's mom and sister had found a solution to what ails them, they don't have too much to offer on the treatments that husband pursues. My dad's family is rife with anxiety issues and one aunt is even dx with Fibro. I spend little time thinking too much about this b/c they aren't pursuing ways to be well, that's no reason I should be resigned to my current health, and, that could be completely unrelated to what is going on with me.
Symptoms of CFS and Lyme overlap, but, at this point, they are not considered to be caused by the same things. My pain doc, who has tons of chronic pain patients, was unwilling to diagnose me with CFS or Fibro...that's how I ended up following up on the Lyme. He works with these conditions all the time and is very particular about the diagnoses he makes. A lot of docs don't and just hand out a label when they have no other explanations.
At this point, even if you find out it's Lyme, you have no way of ever knowing how he got it. I've talked gestational lyme with a couple of docs (LLMD, regular ped) and, at this point, most of the literature points to MAJOR health issues in kids with gestational lyme (b/c it effects organ development, etc.). Could it have more minor effects as a person grows? At this point, no one knows, really. For my kids, they were born and still are, otherwise, healthy. I'm keeping an eye on them through the prism of me having untreated lyme when they were in utero, though.
Just some thoughts.
Be well.
Posts: 252 | From New York | Registered: Apr 2010
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posted
Thanks for all of your help guys... We've been doing quite a bit of reading (our search for answers 'casually' began about two years ago) but I never thought we'd end up at this point.
I'm trying to get through all of the links and stuff for more info, DMC thanks for the link to the booklet!
Posts: 5 | From Illinois | Registered: Jun 2010
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As a different answer than Lyme, you could look into gluten intolerance, if you haven't already.
Before I knew about Lyme, I discovered that I was gluten intolerant. While I ate gluten, I could never get enough sleep. I took an afternoon nap and couldn't wait to go to bed after dinner.
Now, that I eat gluten free, I can stay up as late as I want, get up as early as I want, and not need a nap. I really have to make myself go to bed a lot of the time and I wake up naturally by 6 a lot of the time.
Gluten has been linked to headaches and stomach problems also. Like Lyme, it can explain a lot of things.
It is a much easier answer than Lyme, so you might want to check it out, at least while you wait to see an LLMD.
Posts: 984 | From US | Registered: Dec 2007
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About your husband, I would take him to a sleep specialist (who is a doctor), and ask for the MSLT (Multiple Sleep Latency Test), which checks for Narcolepsy. If he's falling asleep during the day, hopefully the doctor will put 2 and 2 together and order it and you won't even have to ask. Sometimes the only symptom of narcolepsy is daytime sleepiness.
But keep in mind that Lyme can probably cause narcolepsy, or at least cause people to fall asleep during the day from fatigue.
The best thing to do would be get him tested for Lyme through Igenex (the IgM and IgG Western Blots) and go from there, but I just think you should rule out sleep issues too, since fatigue and sleepiness are the main symptoms.
Posts: 89 | From U.S. | Registered: Apr 2010
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posted
ps--Lyme has something like a 25% to 50% percent transfer rate from mother to fetus, when the mother is not treated during pregnancy, estimated by a LLMD (Lyme doc). Can't remember the exact number he said.
So even if his mom and sister have Lyme, he might not have gotten it.
But you should still check to be sure. And then I'd also do the sleep study in case you are wrong about the Lyme. Also check things like testosterone levels, look into if that can cause fatigue, because I think it can.
I would look into Lyme but look into other things too.
Posts: 89 | From U.S. | Registered: Apr 2010
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posted
Also, my understanding about congenital Lyme, after listening to talks by LLMDs and talking to my own LLMD, is this:
When a baby is born with Lyme, the baby is normally pretty sick or at least shows the signs in the first 5 years of life. There are clues like learning disabilities, GI issues (which can have many causes however), etc etc...
..So if your husband started showing these symptoms in adulthood and was a perfectly healthy child (no learning disabilities, ADD, autism, developmental problems, other health complaints), it would be more likely in my mind that he was bitten sometime as an adult and did not see the bite, if it is Lyme.
There is definitely Lyme and infected ticks in Illinois. It's right below WI, which is a Lyme nightmare of a state (as bad as the Northeast). There's also Lyme in my home state of Indiana, so I wouldn't doubt exposure for you guys in adulthood. So it's possible if they got sick in adulthood, that no one saw the tick or got the rash. I wouldn't just limit your theory to congenital.
I believe there are many causes of chronic fatigue and Lyme is one of them. It's important to check for Lyme. But not all CFS is Lyme.
Even if the Lyme tests are negative, you should never fully rule it out. Sometimes antibiotics help, and sometimes they might be killing an unknown infection. It's very complicated.
Posts: 89 | From U.S. | Registered: Apr 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
This Sunnydays is pretty on the ball for only having 45 posts!!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
seek, you do know sunny is an old time lymeneter just incognito, right?
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
JKmom, we have looked into that. He has had GI issues on and off, but they seemed to temporarily get better after we got married (I eat a fairly low-carb and low-gluten diet due to my own issues). I have tried very temporary gluten elimination, but I haven't studied the specifics.
Sunny - I have to admit I kind of laughed when narcolepsy was suggested as a 'component' of certain CFS manifestations. I've always thought of stereotypical narc, like the whole walking-down-the-street-and-fall-over visual. But reading about some of the symptoms and then talking to my husband, I was wrong, it's a very real possibility! He definitely has "sleep attacks" and also exhibits "microsleep" - where he'll be at work and then he describes "suddenly waking up" even though he didn't know he was sleeping... the time passed is only a couple of seconds as best he can tell, but he is disoriented (doesn't remember what he was working on) and sometimes even dreams! I just mentioned it to him and he said he has even experienced sleep paralysis as a child... and remembers waking up scared to death because it was like an out of body experience (he couldn't move). I never knew about this until we started talking about narc as a ddx today. Thank you so much for the suggestion. I found a Narcolepsy Network site and maybe can get some further direction there, but I would still like to pursue Lyme testing as well.
Posts: 5 | From Illinois | Registered: Jun 2010
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posted
I respectfully disagree with sunnydays. I believe I have congenital bartonella. My illness was not obvious. My children, who have congenital lyme and congenital bartonella and babs, have identical western blot bands and are 8 years apart.
Kids that are not vaccinated, I think do much better. My older son had no obvious health issues, but issues that were silent but irritating. Lots of cavities, sensory issues, GI trouble, swollen lymph notes, but nothing that anyone paid a whole lot of attention to.
My younger son, nearly died at the age of two from "suspected bartonella". So, he did present it earlier than 5, but my older son did not. Before and after that, he had some anger issues and sensory processing. Nothing very noticeable.
So, as much as LLMD's know, there haven't been enough cases of congenital lyme & co studied to issue a blanket statement that all lyme kids are really sick from birth. Some kids are super lucky and super strong. Our middle son didn't survive gestation. You just can't predict who is congenital and who isn't, but really. . .it doesn't matter. Tick sick people are tick sick people and tick sick kids.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
When I was reading your post, I thought CFS, definitely symptoms of Chronic Fatigue Syndrome. The unrelenting fatigue, unrefreshed sleep and the headaches especially.
That said, is it CFS, or is Lyme causing CFS? Most LLMD's do not understand the CFS/viral component. Most CFS doctors don't know lyme.
An infectious disease doctor that specializes in CFS/lyme presented at a lyme conference recently, and was very impressive. He is located in Kansas City Mo. (PM me if you want his name)
Posts: 964 | From san diego | Registered: Oct 2009
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posted
I did not mean to infer that all cases of congenital Lyme (not bartonella...I was speaking of Lyme only) behave the same.
I just said that normally there are signs sooner than adulthood. The child is either a sick child, OR (not and, or) there are at least some signs. Like GI symptoms, mood issues, ADHD, etc.
I wasn't saying it would be obvious.
I am sure there are exceptions.
Posts: 89 | From U.S. | Registered: Apr 2010
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