Lyme disease

[MEmama]

Yesterday morning DS had a sore knee and arm/wrist. As the day progressed the arm felt better but the knee got much worse. He was barely able to sleep last night, and by this morning he wasn't able to walk at all. The knee is hot and very swollen. Luckily, our doctor has weekend hours and we were able to get him in. She immediately suspected Lyme and sent him to the hospital for labs. We should hear confirmation tomorrow, but she seemed quite certain. He's on Motrin for now to stay comfortable, and we are also icing it and using Arnica gel.

 

Does anyone have experience with Lyme, especially in kids? I understand the symptoms and recovery can be quite different than in adults. He's worried about missing ski season and I'm trying not to worry about long term effects.

[Nemom]

Chronic and congential lyme at my house.

 

Why does the MD suspect lyme--recent tick exposure or bullseye rash?

[MEmama]

Chronic and congential lyme at my house.

 

Why does the MD suspect lyme--recent tick exposure or bullseye rash?

No, neither. She told us that in kids it very often shows up as joint pain, most commonly in the knee. Combined with the intense heat and swelling and the fact that he hadn't done anything unusual recently to injure it, it sent off warning signals. The possibility certainly was a shock to us, especially with how active he is (no prior pain) and the factthat there's a foot of snow on the ground. I guess it can linger quite awhile before showing up. Lyme is very common here, although I do know several people who have had a difficult time getting their doctor to agree to testing.

 

What is the difference between the two types your family has had?

[Nemom]

Chronic-wasn't dx'd until years after the tick bite (with rash)

congenital-passed it on to my kids during pregnancy

 

Kudos to your Dr for even having it on their radar. If the test comes back positive, I would look into finding an LLMD which means Lyme Literate MD. Most MDs will treat with 14 days of abx which may/may not be enough.

 

Here is a link to a very well respected children's LLMD: https://sites.google.com/site/drjoneskids/home

 

A lot of the info will pertain to chronic and/or congenital lyme so try not to let it scare you. If caught early and properly treated the chances for full recovery are very good.

[kewb]

My dh has chronic neuro lyme. Definitely find a lyme literate doctor.

[Corraleno]

No, neither. She told us that in kids it very often shows up as joint pain, most commonly in the knee. Combined with the intense heat and swelling and the fact that he hadn't done anything unusual recently to injure it, it sent off warning signals. The possibility certainly was a shock to us, especially with how active he is (no prior pain) and the factthat there's a foot of snow on the ground. I guess it can linger quite awhile before showing up. Lyme is very common here, although I do know several people who have had a difficult time getting their doctor to agree to testing.

 

Those were the exact symptoms that my son had — joint pain and an extremely swollen knee, with no history of injury. We never saw a tick, he never had a rash, and the other symptoms (spaciness, anxiety, unusual fatigue, sleeping 12 hours a day), had been chalked up to puberty. Unfortunately, Lyme is not endemic in the southwest and it was not on anyone's radar so it took a LONG time to get a correct diagnosis. He had had it for about 2 years before we finally got a correct diagnosis and he started doxycycline. He was on doxy for 18 months, and his knee is fine now, but there is really no way to tell if he's "cured" or not. He is supposed to have annual echocardiograms to make sure his heart isn't affected.

 

One thing to be aware of is that there are two different forms of the Western Blot test; one tests for recent infection (IgM) and one tests for longer-term infection (IgG). The standard procedure is to do the ELISA test first, and then if that is positive, they will do the WB. Even after we finally found a specialist who thought to order a Lyme test, he ordered the wrong one (IgM), and when that came back negative, he "guaranteed" (his word) that DS did not have Lyme. I had to find another doctor willing to order the IgG test — which came back overwhelmingly positive. So if you get a positive ELISA but a negative WB, be sure to ask the doc to run the other WB to be sure. If I had listened to the doc who "guaranteed" that DS didn't have Lyme, instead of listening to my gut, I shudder to think where he'd be now.  :sad:

 

 

[Farrar]

Ds had a case of Lyme that was caught and treated immediately. It was the most classic initial presentation you can have. Out in the woods. Two days later, feeling achy and feverish and sudden presentation of the bull's eye rash followed by some minor vomiting. They didn't even do the blood check at the ER. They called in a bunch of nurses and interns and said, see, look, this is Lyme. Then they gave him the antibiotics. He took them, got better in a few days. Seems to have had no lingering effects.

 

It's so endemic around here that I know tons of people who have had Lyme or have chronic Lyme. Most kids I know have gotten better over time - sometimes after years of off and on issues, followed by diagnosis, followed by months of antibiotics, followed by parents who say, wow, what a huge change. Several adults I know have struggled to really get better.

[MEmama]

Thanks for all the info and for sharing your experiences. DS was awake at 4:30 this morning, ready to research long term effects. For now I'm trying not to panic and I'm feeling fully appreciative we have proactive and aggressive doctors. He still can't walk at all, so it's going to be a long day...:(

[Lizzie in Ma]

The other thing you need to understand is that the tests are highly flawed and that if the result isn't CDC postive, the lab will flag it negative.  You want to SEE the test and look for any bands on the western blot that may have showed up.  Even a single Lyme specific band can mean he has Lyme.

We lost two years that we could have been treating due to not knowing this.  This website I am linking you to is specifically for the Igenex lab tests but it lists all the bands so you can check it against his results.

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/61532-breakdown-of-igenix-test-bands

 

Knees blowing up like that were and are our youngests primary symptom.

[Nemom]

The other thing you need to understand is that the tests are highly flawed and that if the result isn't CDC postive, the lab will flag it negative. You want to SEE the test and look for any bands on the western blot that may have showed up. Even a single Lyme specific band can mean he has Lyme.

We lost two years that we could have been treating due to not knowing this. This website I am linking you to is specifically for the Igenex lab tests but it lists all the bands so you can check it against his results.

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/61532-breakdown-of-igenix-test-bands

 

Knees blowing up like that were and are our youngests primary symptom.

Completely agree with this. We had our testing done through Igenex. You have to be very proactive with Lyme and do not expect the Drs to be so on your behalf.

[MEmama]

The other thing you need to understand is that the tests are highly flawed and that if the result isn't CDC postive, the lab will flag it negative. You want to SEE the test and look for any bands on the western blot that may have showed up. Even a single Lyme specific band can mean he has Lyme.

We lost two years that we could have been treating due to not knowing this. This website I am linking you to is specifically for the Igenex lab tests but it lists all the bands so you can check it against his results.

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/61532-breakdown-of-igenix-test-bands

 

Knees blowing up like that were and are our youngests primary symptom.

Thanks for the link. I don't see the Wetern Blot test on his lab orders, unless it goes by a different name? The 4 tests he had yesterday were CBC w/ Manual Diff; ESR, blood; CRP, high sensitivity, serum; and Lyme Antibody Screen, EIA/Elisa, serum.

[MEmama]

Completely agree with this. We had our testing done through Igenex. You have to be very proactive with Lyme and do not expect the Drs to be so on your behalf.

Good to know. Thank you.

[Nemom]

Thanks for the link. I don't see the Wetern Blot test on his lab orders, unless it goes by a different name? The 4 tests he had yesterday were CBC w/ Manual Diff; ESR, blood; CRP, high sensitivity, serum; and Lyme Antibody Screen, EIA/Elisa, serum.

I have never heard of the Lyme Antibody Screen. ELISA is for lyme for highly inaccurate.

[Shelly in IL]

Is there anything else we should do for our son? He showed me a tick in his shoulder - def deer tick. Bullseye, but probably only had the tick for max 24 hours. He was already achey and heavy limbed. Started 4 weeks supply of doxycycline and has since finished it. He seems prone to other sicknesses, but we are pushing probiotics etc. he had the Lymes test after he started doxy,mane it came back negative. However, he had classic symptoms and was sluggish and sleepy if we delayed the antibiotic by only a couple hours. Doctor feels positive he had it. Is there anything else we should do at this point?

[Nemom]

Is there anything else we should do for our son? He showed me a tick in his shoulder - def deer tick. Bullseye, but probably only had the tick for max 24 hours. He was already achey and heavy limbed. Started 4 weeks supply of doxycycline and has since finished it. He seems prone to other sicknesses, but we are pushing probiotics etc. he had the Lymes test after he started doxy,mane it came back negative. However, he had classic symptoms and was sluggish and sleepy if we delayed the antibiotic by only a couple hours. Doctor feels positive he had it. Is there anything else we should do at this point?

How long ago did he finish the Doxy? Is he still symptomatic?

[Shelly in IL]

He's been off for approx 2 weeks. He doesn't seem symptomatic as he's not complaining about heavy limbs and hasn't been feverish or belly achey. However, he's been pretty susceptible to illness, but I'm partly blaming that on his immune system being destroyed from all the mess.

[Spryte]

He's been off for approx 2 weeks. He doesn't seem symptomatic as he's not complaining about heavy limbs and hasn't been feverish or belly achey. However, he's been pretty susceptible to illness, but I'm partly blaming that on his immune system being destroyed from all the mess.

 

So no other symptoms, after treatment?  ...If you're worried, it could be that he needs to treat a bit longer, or that he has a co-infection (very common).  Do you have a Lyme Literate Doctor?

 

OP, definitely follow Lizzie's advice about checking the results of your kiddo's test manually.  Even one Lyme specific band on the WB is significant, though for CDC reporting purposes they require more (note that that is for reporting to the CDC and not meant to be diagnostic).  Some people never have any bands show up, though, testing is not reliable.  So even if it's completely negative - it doesn't rule out Lyme.  (Speaking from experience here, I had a negative WB - and most definitely had Lyme, it was diagnosed by PCR.)

 

I would try to find a LLMD in your area, and go ahead and get on the (sometimes very long) waiting list for an appointment.  You will want him evaluated for co-infections.

 

You said he's not walking today?  Sometimes a warm epsom bath can help.  Stay very hydrated, drink lots of water, there's a tendency to dehydration for many who start treatment, and that makes the achiness and overall misery much worse.

 

Also, have you read about herxing yet?  [shudder] ...In a nutshell, with Lyme, one feels worse before feeling better.  Essentially as the spirochete is killed off by the antibiotics, it releases toxins that trigger more flu-like feelings and other symptoms.  This is generally (but not always) worse on the 3rd and 28th days.  But some lucky people can herx heavily throughout treatment... Not fun.  Herx is short for Jarrisch-Herxheimer Reaction, if you want to google it.

 

Here, I am the Lymie.  Went undiagnosed for years and years, was misdiagnosed with everything under the sun, then finally found an LLMD who saved my life - literally.  5 years of antibiotics to treat 13 major, chronic infections.  It was a nightmare.  But I'm much, much better now, 10 years later.  :)

 

If you're in research mode, I found lymenet.com to be helpful, years ago.  

 

Keep us posted!

[J-rap]

We suspected that one of my daughters had chronic Lyme Disease last summer, given her symptoms that had been going on for months and even years.  However, after undergoing all of the tests at Mayo Clinic, it was ruled it out.

 

Then out of the blue my other daughter actually DID get it!  She only had the symptoms for one week, and they were very typical.  Her elbow blew up, not her knee, and you could see the bullseye rash.  She could barely move her arm;  it was extremely sore.  The first doctor misdiagnosed it, but we encouraged her to go back a couple days later and she did and this time it was so obvious, everyone was scratching their heads as to why the first doc missed it. 

 

After two weeks on antibiotics, she was pretty much symptom free, and remains so.

 

(She was working at a national park during the summer and doing a lot of hiking when it happened.)

 

Best of luck to your son! 

[Corraleno]

Thanks for the link. I don't see the Wetern Blot test on his lab orders, unless it goes by a different name? The 4 tests he had yesterday were CBC w/ Manual Diff; ESR, blood; CRP, high sensitivity, serum; and Lyme Antibody Screen, EIA/Elisa, serum.

 

They generally don't do the Western Blot unless the ELISA is positive. ELISA is cheaper but supposedly has lots of false positives, so the WB (which is more accurate) is then done after the ELISA to confirm whether the result is a true positive or a false positive. 

 

This is where things can go wrong — if the doctor just orders the ELISA without specifying which WB test to do if the ELISA is positive, the "default" is usually the IgM. But if the infection has been ongoing for some time, the IgM can come back negative — and the report will list it as a negative, even if there are some positives, because you need a certain # of positives (5 or 6?) in order for the CDC to consider it a true positive (which is very controversial). That's why it's really really important that if you get a positive ELISA and a negative WB (especially the IgM), you need to ask for the IgG test as well.

 

I often wonder how much of the ELISA's reputation for "false positives" is really due to genuine positives that were missed because of the wrong Western Blot. A lot of people would just take the doctor's word for it, and then their chart shows that Lyme has already been "ruled out" so it becomes even less likely that the person will ever be properly diagnosed and treated.   :sad:

[Farrar]

He's been off for approx 2 weeks. He doesn't seem symptomatic as he's not complaining about heavy limbs and hasn't been feverish or belly achey. However, he's been pretty susceptible to illness, but I'm partly blaming that on his immune system being destroyed from all the mess.

Shelly, I wouldn't worry. I mean, keep an eye out if he develops symptoms in the future, but I know a bunch of kids like my ds who have had Lyme and gotten initial treatment then been completely fine. Getting antibiotics right away is considered very effective.

[MEmama]

Is there anything else we should do for our son? He showed me a tick in his shoulder - def deer tick. Bullseye, but probably only had the tick for max 24 hours. He was already achey and heavy limbed. Started 4 weeks supply of doxycycline and has since finished it. He seems prone to other sicknesses, but we are pushing probiotics etc. he had the Lymes test after he started doxy,mane it came back negative. However, he had classic symptoms and was sluggish and sleepy if we delayed the antibiotic by only a couple hours. Doctor feels positive he had it. Is there anything else we should do at this point?

I hope you get it figured out and he feels better soon! This is such a mysterious disease. :(

[MEmama]

They generally don't do the Western Blot unless the ELISA is positive. ELISA is cheaper but supposedly has lots of false positives, so the WB (which is more accurate) is then done after the ELISA to confirm whether the result is a true positive or a false positive.

 

This is where things can go wrong — if the doctor just orders the ELISA without specifying which WB test to do if the ELISA is positive, the "default" is usually the IgM. But if the infection has been ongoing for some time, the IgM can come back negative — and the report will list it as a negative, even if there are some positives, because you need a certain # of positives (5 or 6?) in order for the CDC to consider it a true positive (which is very controversial). That's why it's really really important that if you get a positive ELISA and a negative WB (especially the IgM), you need to ask for the IgG test as well.

 

I often wonder how much of the ELISA's reputation for "false positives" is really due to genuine positives that were missed because of the wrong Western Blot. A lot of people would just take the doctor's word for it, and then their chart shows that Lyme has already been "ruled out" so it becomes even less likely that the person will ever be properly diagnosed and treated. :sad:

Thank you. This is very helpful!

[MEmama]

So no other symptoms, after treatment? ...If you're worried, it could be that he needs to treat a bit longer, or that he has a co-infection (very common). Do you have a Lyme Literate Doctor?

 

OP, definitely follow Lizzie's advice about checking the results of your kiddo's test manually. Even one Lyme specific band on the WB is significant, though for CDC reporting purposes they require more (note that that is for reporting to the CDC and not meant to be diagnostic). Some people never have any bands show up, though, testing is not reliable. So even if it's completely negative - it doesn't rule out Lyme. (Speaking from experience here, I had a negative WB - and most definitely had Lyme, it was diagnosed by PCR.)

 

I would try to find a LLMD in your area, and go ahead and get on the (sometimes very long) waiting list for an appointment. You will want him evaluated for co-infections.

 

You said he's not walking today? Sometimes a warm epsom bath can help. Stay very hydrated, drink lots of water, there's a tendency to dehydration for many who start treatment, and that makes the achiness and overall misery much worse.

 

Also, have you read about herxing yet? [shudder] ...In a nutshell, with Lyme, one feels worse before feeling better. Essentially as the spirochete is killed off by the antibiotics, it releases toxins that trigger more flu-like feelings and other symptoms. This is generally (but not always) worse on the 3rd and 28th days. But some lucky people can herx heavily throughout treatment... Not fun. Herx is short for Jarrisch-Herxheimer Reaction, if you want to google it.

 

Here, I am the Lymie. Went undiagnosed for years and years, was misdiagnosed with everything under the sun, then finally found an LLMD who saved my life - literally. 5 years of antibiotics to treat 13 major, chronic infections. It was a nightmare. But I'm much, much better now, 10 years later. :)

 

If you're in research mode, I found lymenet.com to be helpful, years ago.

 

Keep us posted!

An Epsom bath is a good idea if I can get him upstairs. Weirdly, he's been super thirsty all weekend, but I can't imagine it's related? He is running a very slight fever so that might be why. I'll be doubly sure he's getting enough once he gets on antibiotics.

 

Herxing--ugh! Good to know about it in advance!

 

I'm glad you are finally better, but what an awful ordeal you've been through! :(

[Lizzie in Ma]

Thanks for the link. I don't see the Wetern Blot test on his lab orders, unless it goes by a different name? The 4 tests he had yesterday were CBC w/ Manual Diff; ESR, blood; CRP, high sensitivity, serum; and Lyme Antibody Screen, EIA/Elisa, serum.

 

Looks like they are looking for inlammatory markers and an elisa, notoriously inaccurate, catches Lyme less than 40% of the time. You need to ask for a western blot, IgG and IgM.

[Lizzie in Ma]

Is there anything else we should do for our son? He showed me a tick in his shoulder - def deer tick. Bullseye, but probably only had the tick for max 24 hours. He was already achey and heavy limbed. Started 4 weeks supply of doxycycline and has since finished it. He seems prone to other sicknesses, but we are pushing probiotics etc. he had the Lymes test after he started doxy,mane it came back negative. However, he had classic symptoms and was sluggish and sleepy if we delayed the antibiotic by only a couple hours. Doctor feels positive he had it. Is there anything else we should do at this point?

 

There is no safe amount of time for an embedded tick, period.

Lyme antibodies, which is what the tests look for, won't even show up for 4-6 weeks.

After 4 weeks of doxy with those symptoms, I might be thinking common co-infections, like Babesia. 

If your doctor is willing to work with you, you should get Why Can't I Get Better and have him use Dr. Horowitz's treatment plans in the appendix.

Also probiotics, vitamin D, Magnesium both of which Lyme tends to leech from the body.  Vitamin C (we use Emergen-C daily)

Detoxing by drinking lemon water and taking epsom salt baths are really important too.

I'm really sorry, but YOU are going to have to become the expert here, unless you get him to an LLMD, you can try here http://ilads.org/ilads_media/physician-referral/

I urge you to be proactive to an insane extent.

[Catwoman]

The main thing right now isn't testing -- it's getting him on doxycycline IMMEDIATELY, and for a full month. Don't wait for labwork results, as every day without medicine is another day for the Lyme to settle into his body. If he starts the doxy right away, he will be fine in a very short time, but if you wait until his symptoms progress, it can be a long battle to get rid of it.

 

Also, if he just contracted Lyme, none of the tests may be accurate right now anyway, and by the time you have him re-tested in several weeks, you may have passed that window of time where it's easy to treat and get rid of it.

[Lizzie in Ma]

We suspected that one of my daughters had chronic Lyme Disease last summer, given her symptoms that had been going on for months and even years.  However, after undergoing all of the tests at Mayo Clinic, it was ruled it out.

 

Then out of the blue my other daughter actually DID get it!  She only had the symptoms for one week, and they were very typical.  Her elbow blew up, not her knee, and you could see the bullseye rash.  She could barely move her arm;  it was extremely sore.  The first doctor misdiagnosed it, but we encouraged her to go back a couple days later and she did and this time it was so obvious, everyone was scratching their heads as to why the first doc missed it. 

 

After two weeks on antibiotics, she was pretty much symptom free, and remains so.

 

(She was working at a national park during the summer and doing a lot of hiking when it happened.)

 

Best of luck to your son! 

Mayo is notorious for not believing in chronic Lyme, most of the big hospitals follow the CDC/ISDA bandwagon.

I am thrilled your daughter is well, but I would be highly on the alert for any symptoms, two weeks isn't enough.

It's possible that on that short of a course, it simply threw the spirochetes into cyst form and it is hiding and dormant.  I really really don't want to be a Debbie Downer, but, like Spryte, I do know the enemy, and it is a treacherous bitch.

Just keep an eye on her and act quickly if you need to.

 

[Lizzie in Ma]

They generally don't do the Western Blot unless the ELISA is positive. ELISA is cheaper but supposedly has lots of false positives, so the WB (which is more accurate) is then done after the ELISA to confirm whether the result is a true positive or a false positive. 

 

This is where things can go wrong — if the doctor just orders the ELISA without specifying which WB test to do if the ELISA is positive, the "default" is usually the IgM. But if the infection has been ongoing for some time, the IgM can come back negative — and the report will list it as a negative, even if there are some positives, because you need a certain # of positives (5 or 6?) in order for the CDC to consider it a true positive (which is very controversial). That's why it's really really important that if you get a positive ELISA and a negative WB (especially the IgM), you need to ask for the IgG test as well.

 

I often wonder how much of the ELISA's reputation for "false positives" is really due to genuine positives that were missed because of the wrong Western Blot. A lot of people would just take the doctor's word for it, and then their chart shows that Lyme has already been "ruled out" so it becomes even less likely that the person will ever be properly diagnosed and treated.   :sad:

I don't belive in false postives for Lyme.  And you are right about the western blot.  And like so many we did take the doctors word for it and lost years and spent untold amounts of money on specialists, who all agreed that something was very wrong, but couldn't help us with what it was.  They sure knew what it wasn't, but they had no idea what was wrong.  If I had only known to LOOK at her western blot, if my doctor had only understood the problems with the test itself, we wouldn't be where we are now.

Our story is like so many, even here on the boards, and it is just so wrong. 

 

[Spryte]

Mayo is notorious for not believing in chronic Lyme, most of the big hospitals follow the CDC/ISDA bandwagon.

I am thrilled your daughter is well, but I would be highly on the alert for any symptoms, two weeks isn't enough.

It's possible that on that short of a course, it simply threw the spirochetes into cyst form and it is hiding and dormant.  I really really don't want to be a Debbie Downer, but, like Spryte, I do know the enemy, and it is a treacherous bitch.

Just keep an eye on her and act quickly if you need to.

 

Lizzie, I am so glad you posted this.  I tried to write the same thing over and over, and finally just deleted.  I didn't want to sound like the Crazy Tick Lady.  :)

 

Mayo has a reputation for not catching Lyme Disease.  There is even a slogan, in the Lyme support world, "Hold the Mayo."  There are a lot of reasons for this, and many are unfortunately political.  Lyme, especially chronic, is not an easy diagnosis - and it's often missed.  There's no way to definitively rule it out (the tests are simply not reliable enough).  I personally have 2 family friends whose Lyme cases were completely missed by Mayo.  That caused them both years of extra suffering, sadly.

 

It is entirely possible that your daughter has Lyme, that the spirochetes are in cyst form and thus dormant.  No symptoms.  Please do be vigilant, as Lizzie said.   :grouphug:

[Catwoman]

Mayo is notorious for not believing in chronic Lyme, most of the big hospitals follow the CDC/ISDA bandwagon.

I am thrilled your daughter is well, but I would be highly on the alert for any symptoms, two weeks isn't enough.

It's possible that on that short of a course, it simply threw the spirochetes into cyst form and it is hiding and dormant. I really really don't want to be a Debbie Downer, but, like Spryte, I do know the enemy, and it is a treacherous bitch.

Just keep an eye on her and act quickly if you need to.

Lizzie, I am so glad you posted this. I tried to write the same thing over and over, and finally just deleted. I didn't want to sound like the Crazy Tick Lady. :)

 

Mayo has a reputation for not catching Lyme Disease. There is even a slogan, in the Lyme support world, "Hold the Mayo." There are a lot of reasons for this, and many are unfortunately political. Lyme, especially chronic, is not an easy diagnosis - and it's often missed. There's no way to definitively rule it out (the tests are simply not reliable enough). I personally have 2 family friends whose Lyme cases were completely missed by Mayo. That caused them both years of extra suffering, sadly.

 

It is entirely possible that your daughter has Lyme, that the spirochetes are in cyst form and thus dormant. No symptoms. Please do be vigilant, as Lizzie said. :grouphug:

I have heard the same thing about Mayo. The Mayo Clinic is wonderful for many ailments, but apparently Lyme Disease isn't one of them.

[Nemom]

Agreeing with the statement that Mayo is not the place for Lyme. You really need to find a lyme literate doctor who specializes in treating lyme and the co-infections.

[J-rap]

Mayo is notorious for not believing in chronic Lyme, most of the big hospitals follow the CDC/ISDA bandwagon.

I am thrilled your daughter is well, but I would be highly on the alert for any symptoms, two weeks isn't enough.

It's possible that on that short of a course, it simply threw the spirochetes into cyst form and it is hiding and dormant.  I really really don't want to be a Debbie Downer, but, like Spryte, I do know the enemy, and it is a treacherous bitch.

Just keep an eye on her and act quickly if you need to.

 

Oh wow, this is new to me!  I do have the results of the Mayo tests for my first daughter.  They were either "negative" or "no bands detected." Are you saying that even with these results, we should be pursuing chronic Lyme?

 

Also to be clear, these were two different daughters.  The one who was actually diagnosed with Lyme seemed to get over it quickly.  (We caught it within a week of being bit, we believe.)  The other one with the chronic illness (who was tested at Mayo) still has her weird chronic symptoms.

 

So with the one who we know had it and seems free of symptoms, you are suggesting that down the road if she starts to develop unexplained symptoms, it could be the Lyme disease?

 

[Spryte]

Oh wow, this is new to me!  I do have the results of the Mayo tests for my first daughter.  They were either "negative" or "no bands detected." Are you saying that even with these results, we should be pursuing chronic Lyme?

 

Also to be clear, these were two different daughters.  The one who was actually diagnosed with Lyme seemed to get over it quickly.  (We caught it within a week of being bit, we believe.)  The other one with the chronic illness (who was tested at Mayo) still has her weird chronic symptoms.

 

So with the one who we know had it and seems free of symptoms, you are suggesting that down the road if she starts to develop unexplained symptoms, it could be the Lyme disease?

 

 

Personally, I'm most concerned about your daughter with the chronic symptoms.  If I were in your shoes, I'd pursue that with a LLMD.  And be absolutely certain to check for co-infections of Lyme.

 

The other daughter - if you caught it quickly, and she had at least 30 days of treatment, and she's symptom free now, then hopefully she's in the clear.  If you treated less than 30 days (that is the minimum, because of the life cycle of the spirochete), then I'd watch for returning symptoms very carefully.  Even if you treated for 30 days, still watch for returning symptoms.

 

It's very important to adequately treat Lyme.  That means to use a high enough dose to kill the spirochete not just prevent it from replicating (bactericidal vs bacteristatic), and for its entire life cycle.  Anything less can result in a recurrence down the road.  

[Nemom]

Personally, I'm most concerned about your daughter with the chronic symptoms. If I were in your shoes, I'd pursue that with a LLMD. And be absolutely certain to check for co-infections of Lyme.

 

The other daughter - if you caught it quickly, and she had at least 30 days of treatment, and she's symptom free now, then hopefully she's in the clear. If you treated less than 30 days (that is the minimum, because of the life cycle of the spirochete), then I'd watch for returning symptoms very carefully. Even if you treated for 30 days, still watch for returning symptoms.

 

It's very important to adequately treat Lyme. That means to use a high enough dose to kill the spirochete not just prevent it from replicating (bactericidal vs bacteristatic), and for its entire life cycle. Anything less can result in a recurrence down the road.

I agree that you should look into finding a LLMD for the untreated daughter. I was dx'd almost 20 years after the tick bite which presented with the classic rash but "lyme is not in our state" response from MDs. I passed it on to my kids one of which has had a very difficult time and will have life long health issues. Trust me-you do not want your Grandkids to have congenital lyme.

[Lizzie in Ma]

Oh wow, this is new to me!  I do have the results of the Mayo tests for my first daughter.  They were either "negative" or "no bands detected." Are you saying that even with these results, we should be pursuing chronic Lyme?

 

Also to be clear, these were two different daughters.  The one who was actually diagnosed with Lyme seemed to get over it quickly.  (We caught it within a week of being bit, we believe.)  The other one with the chronic illness (who was tested at Mayo) still has her weird chronic symptoms.

 

So with the one who we know had it and seems free of symptoms, you are suggesting that down the road if she starts to develop unexplained symptoms, it could be the Lyme disease?

 

 

Short answer, yes.

 

[FaithManor]

The main thing right now isn't testing -- it's getting him on doxycycline IMMEDIATELY, and for a full month. Don't wait for labwork results, as every day without medicine is another day for the Lyme to settle into his body. If he starts the doxy right away, he will be fine in a very short time, but if you wait until his symptoms progress, it can be a long battle to get rid of it.

 

Also, if he just contracted Lyme, none of the tests may be accurate right now anyway, and by the time you have him re-tested in several weeks, you may have passed that window of time where it's easy to treat and get rid of it.

 

This! Dh found the tick on the back of his neck. It had probably been there for more than 30 hours though we can't be certain. He went to the doctor before he was symptomatic, and took the squashed tick with him. Dh did develop a small, typical bulls eye rash, however, it's a misnomer that every Lyme's disease patient will get that. Some never present with that particular symptom.

 

He was prescribed a full month of doxy...extra rest, keep hydrated, do not take any dairy products with it, two hours before, or after so given that he took it three times a day, he just simply went without dairy - if memory serves, calcium taken with it can inhibit proper absorption - etc.

 

He never developed any other symptom except that rash which abated within a week on the doxy. We followed the protocols to the letter.

 

Demand the doxy, don't wait on the tests. The disease gets too much of a head start while waiting for it to trip positive on the current, standard tests doctors order.

[MariannNOVA]

Just stopping by and this captured my attention. The people here have provided excellent advice........excellent, excellent advice! Find an LLMD. Demand doxy for 30 days immediately, and then do 30 more. Heed the no dairy around dosing time for the doxy.

 

Also, good quality probiotics taken a few hours after the doxy. Eat a clean diet..........if you can eliminate dairy altogether, it will help. I think that with dd who is now 15 years old, we did dairy free, gluten free, sugar free (VERY IMPORTANT) for months. It really helped.

 

My dd who is almost 35 years old is JUST NOW almost recovered from a 12 year bout with chronic Lyme's. She went undiagnosed for years. She is now receiving hydrogen peroxide IVs, and is at the end of her treatment. She is blessedly, glowingly, thankfully healthy for the first time in more than a decade.

 

You must be your own advocate. You must demand things. Most allopathic health care professionals will fight you every inch of the way which is why a LLMD is essential.

 

Buy doxy from mail order pharmacies and keep it on hand. That way if someone presents with symptoms, you can begin treatment right away.

[MEmama]

The labs came back positive, no surprise, and he's on a month of doxy. His knee is getting better--he's at least able to walk again and the swelling is going down. We have a follow up appointment with his regular doctor next week and I'll be sure to talk to him about all the wisdom shared here. We are fortunate to have a fantastic, proactive medical team who seems well versed in Lyme.

 

For now he's drinking lots of keifer and eating yogurt for the probiotics in between pill popping sessions. Thankfully he has a strong immune system and hasn't reacted poorly to antibiotics in the past. He's handling it really well and is hopeful he'll be able to play hockey again this weekend.

 

Thanks to everyone for sharing their experiences! :)

[Nemom]

The labs came back positive, no surprise, and he's on a month of doxy. His knee is getting better--he's at least able to walk again and the swelling is going down. We have a follow up appointment with his regular doctor next week and I'll be sure to talk to him about all the wisdom shared here. We are fortunate to have a fantastic, proactive medical team who seems well versed in Lyme.

 

For now he's drinking lots of keifer and eating yogurt for the probiotics in between pill popping sessions. Thankfully he has a strong immune system and hasn't reacted poorly to antibiotics in the past. He's handling it really well and is hopeful he'll be able to play hockey again this weekend.

 

Thanks to everyone for sharing their experiences! :)

Thank you for posting an update. Sorry to hear that it was positive but grateful that they started him on abx for 30 days. Hopefully, it will be the end of his journey with Lyme.

 

I am sure that you have a great medical team and do not want to question their knowledge. However, there is a real disconnect between the main stream medical community and the experts in Lyme disease. I would definitely recommend not assuming at the end of that 30 days that all is well and you can put this behind you (hopefully, you will be able too). Be aware, make mental notes of the little things if they appear, and don't be afraid to question your Docs if your son has issues down the road. Lyme can be dormant for years and reappear at any time. Also, doxy does not hit the common co-infections that can come with Lyme.

 

Good luck to you and your son. Praying that all is well at the end of that 30 days.

[MEmama]

Thanks. I've made a (long!) list of questions for his appointment next week--everyone here has been so helpful. I did ask the initial doctor about the possibility of lingering symptoms and she gave me the quick answer that he'll continue to be tested and monitored, and that having the initial Lyme diagnosis on his record will help alert them in the future, if necessary. I feel like they see so much of it here, they really do know what to look out for. Of course I agree with always being your own best advocate, though. And with all the support here, I feel much better prepared to ask the right questions and demand the best course of action if needed. :)

[Catwoman]

Just stopping by and this captured my attention. The people here have provided excellent advice........excellent, excellent advice! Find an LLMD. Demand doxy for 30 days immediately, and then do 30 more. Heed the no dairy around dosing time for the doxy.

 

Also, good quality probiotics taken a few hours after the doxy. Eat a clean diet..........if you can eliminate dairy altogether, it will help. I think that with dd who is now 15 years old, we did dairy free, gluten free, sugar free (VERY IMPORTANT) for months. It really helped.

 

My dd who is almost 35 years old is JUST NOW almost recovered from a 12 year bout with chronic Lyme's. She went undiagnosed for years. She is now receiving hydrogen peroxide IVs, and is at the end of her treatment. She is blessedly, glowingly, thankfully healthy for the first time in more than a decade.

 

You must be your own advocate. You must demand things. Most allopathic health care professionals will fight you every inch of the way which is why a LLMD is essential.

 

Buy doxy from mail order pharmacies and keep it on hand. That way if someone presents with symptoms, you can begin treatment right away.

 

I agree with everything you said, Mariann -- but mostly I wanted to say how great it is to see you here again!!! :party:

[Catwoman]

The labs came back positive, no surprise, and he's on a month of doxy. His knee is getting better--he's at least able to walk again and the swelling is going down. We have a follow up appointment with his regular doctor next week and I'll be sure to talk to him about all the wisdom shared here. We are fortunate to have a fantastic, proactive medical team who seems well versed in Lyme.

 

For now he's drinking lots of keifer and eating yogurt for the probiotics in between pill popping sessions. Thankfully he has a strong immune system and hasn't reacted poorly to antibiotics in the past. He's handling it really well and is hopeful he'll be able to play hockey again this weekend.

 

Thanks to everyone for sharing their experiences! :)

 

I hope the doxy works and that your ds will be as good as new in a few short weeks!

 

He is very fortunate to have such a caring and concerned mom.  :)

[Capt_Uhura]

My 14yr old son has been dealing with lyme disease for 3.5years. The CDC is really delaying progress in fighting Lyme disease. 8-(

[Spryte]

My 14yr old son has been dealing with lyme disease for 3.5years. The CDC is really delaying progress in fighting Lyme disease. 8-(

Yes, they are.

 

I liked your post out of sympathy for your son, not that I like that he has Lyme.  Just making sure you know.  

 

To the OP, one small comment more:  in the weeks/months/years that follow your son's Lyme treatment, please don't ever accept the words "Post Lyme Syndrome" ... continued or recurring symptoms mean the infection has been inadequately treated.  LD is trickier to treat than most docs think, and there is an art to it.  I know you said he has a great med team, but ... many of us did, and yet here we are, posting in every Lyme thread, trying to make sure no one goes through what we did/our families did.  

 

I hope the doxy does wonders for him, and that he has a speedy recovery with no symptoms ever again!

[Capt_Uhura]

That's where we are "post lyme disease" along w/ anxiety, and somatoform disorder. 8-(

[Nemom]

[quote name="Spryte" post="6057804" timestamp="14177117

 

To the OP, one small comment more: in the weeks/months/years that follow your son's Lyme treatment, please don't ever accept the words "Post Lyme Syndrome" ... continued or recurring symptoms mean the infection has been inadequately treated. LD is trickier to treat than most docs think, and there is an art to it. I know you said he has a great med team, but ... many of us did, and yet here we are, posting in every Lyme thread, trying to make sure no one goes through what we did/our families did.

 

 

Perfectly said.

 

Sadly, everyone around us tends to think we are a bit crazy because we "see" Lyme disease everywhere. But it comes from BTDT experience and many, many, many visits with Docs who just plain got it wrong. Healing comes with proper treatment of the lyme and not just putting a bandaid on the symptoms which is what most MDs are doing these days.

[MEmama]

Yes, they are.

 

I liked your post out of sympathy for your son, not that I like that he has Lyme. Just making sure you know.

 

To the OP, one small comment more: in the weeks/months/years that follow your son's Lyme treatment, please don't ever accept the words "Post Lyme Syndrome" ... continued or recurring symptoms mean the infection has been inadequately treated. LD is trickier to treat than most docs think, and there is an art to it. I know you said he has a great med team, but ... many of us did, and yet here we are, posting in every Lyme thread, trying to make sure no one goes through what we did/our families did.

 

I hope the doxy does wonders for him, and that he has a speedy recovery with no symptoms ever again!

I'm glad you are putting this my radar. It's disturbing that Lyme is becoming so common, and yet doctors are so reluctant to treat it properly. I know so many people who have fought for years to just get diagnosed--like many of you. It's awful that something so potentially serious is being brushed aside by the general medical community. From what I hear from friends who are doctors, it's really like they are learning about it as they go along. They didn't study it at all in med school, not so very long ago. As a result, it isn't surprising that so many cases, long term effects, and secondary infections are missed or misdiagnosed, though I'd think there would be a panic in the medical community to figure it out instead of closing their eyes to it like so many are doing.

[Princess Ariel]

nm

[Nemom]

Can I jump in here with questions?

 

I have my test results in front of me with one positive band showing. Not sure which test this was, says Antibodies (IGG,IGM), Immunoblot and Lyme Disease AB (IGG), Blot. I was told last summer that it was a false positive. However, now with more symptoms presenting since that time including a swollen painful knee they are treating me with a month of doxy. I was intitally treated with two weeks of doxy 5 years ago after having what I thought was a tick bite (very reluctantly treated by that doctor who tried to tell me it was something else).

 

This is all new to me. I do feel a bit better after being on the doxy for almost 2 weeks, knee a little less swollen. But I need to figure out what to do next. I keep having episodes of feeling like I am getting the flu, tired, achy, low grade fever. All of my other testing comes back normal.

Thanks!

PA

If you contracted Lyme 5 years ago and are just now being treated with Doxy-30 days will not be enough. Sorry. That fact that you are feeling better is just an indication that you are indeed treating Lyme. You may experience some herxing in the next two weeks (explained by a previous poster) which would further indicate that Lyme is present.

 

A common problem among those with LD is that we develop an intolerance to gluten, dairy and sugar. Removing these from your diet should help alleviate some of the symptoms. I personally noticed a HUGE difference in my fatigue and overall health with the removal of gluten. My son had a similar experience. Dairy and sugar have been tougher to stick too. But I do know that dairy causes a lot of GI symptoms and feelings of needle pricks all over the body.

 

I would recommend looking at the afore mentioned websites and finding an LLMD in your area. Good Luck.

 

ETA: Finding a doctor to sign for Igenex testing would be a great start. My local Doc agreed to do this for us and then we found an LLMD.

[Corraleno]

 I have my test results in front of me with one positive band showing. Not sure which test this was, says Antibodies (IGG,IGM), Immunoblot and Lyme Disease AB (IGG), Blot.  I was told last summer that it was a false positive.  However, now with more  symptoms presenting since that time  including a swollen painful knee they are treating me with a month of doxy. I was intitally treated with two weeks of doxy 5 years ago after having what I thought was a tick  bite (very reluctantly treated by that doctor who tried to tell me it was something else).

 

One month of doxy will not be remotely enough. My son had Lyme for 2 years before he was diagnosed, and he was on doxy for 18 months. And honestly I would have kept him on it longer, or alternated doxy and zithro, if we'd had access to an LLMD. I was lucky that our ped was willing to go along with keeping him on it for 18 months.