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Night sweats are also often indicative of liver stress, and also can occur with other illnesses.

 

I do think members need to be careful about attributing a particular symptom as being ONLY related to PANDAS, or LYME or even only infection. Yes, it is helpful to share with one another in case someone may be missing a piece of the puzzle.

 

But, there are frequently symptom overlaps with different illnesses, and that is why clinical analysis and testing is the only accurate way to know for sure.

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Wow, this is a lot to think about. We are in metro Detroit, not the UP. There is another new person here from the UP. We are not in a high lyme area and I have never known my DS6 to have a tick bite. He just tested negative for lyme using Western Blot that Dr T ordered. We have cats. They are indoors only and have never had a tick or flea that I am aware of. However, my DS sat on one of our cats when he was 3 and she bit him. It did not puncture the skin but he had scratches from her two upper canines where he pulled his hand from her mouth quickly.

 

The soles of the feet pain comes and goes. Almost always near bedtime. Started in Jan of this year. I can't remember when the night sweats started. It comes and goes. His head is always drenched like he's just gotten out of the shower. He has always been very active and athletic. Played soccer at three and could run around like crazy, even last fall (09). This spring, he would quickly tire out from running in soccer and would be sweating like crazy, even though the other kids were not. This fall, I could not get him to play.

 

I'm going to mention all this to Dr T.

 

As a side note, Dh's insurance election just happens to be coming up in Nov. We are switching out of our HMO to a standard BCBS policy so I don't have to go begging to the ped for referrals and I can switch dr's if I like. My dh said last night that HMO stands for health maintainence, as in, healthy and staying that way and we are not a family of healthy people anymore so we've got to get out of it.

 

I don't even know where I'd be w/out this forum.

 

Cindy

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The night sweats we are experiencing with Bartonella and Bebasia are drenching. It is like they just got out of shower while sleeping. There is no doubt about what you are seeing. Also, because Bartonella and Babesia are co-infections it is something that is not typically tested for when doing the standard WB unless you specifically asked for a co-infection panel to be run.

 

In our case, its Congenital Lyme (past to child when pregnant) and our son is NOT serologically positive for Lyme Disease but is POSITIVE for Bartonella and Babesia. Hopefully, I'm making sense.

 

-Wendy

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I didn't read all of the posts here. Sorry if I am repeating what someone else has said.

 

I have lots and lots and lots of friends who have kids. All of them, from all over the country, have joked about their kids night sweats. It happens to healthy kids as well. Sometimes kids sweat.

 

Both of my PANDAS boys have had at some point night sweats. It is the least of my worries.

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I had feet pain, sciatica and an eye twitch from Bartonella. I do not have lyme disease.

 

Both my son and I got Bartonella when our dog came home from the groomers with lice and fleas. My son immediately developed purple streaks on his back and I had scratches that looked like I ran through branches (cat scratch). After treating the Bartonella for 4 months with multiple antibiotics, all of these symptoms have gone away.

 

In terms of the night sweats, my son had horrible night sweats. He did end up having Babesia, which is one infection that can cause night sweats. I do think there are other infections that can cause night sweats.

 

So, I would definitely check out lyme and coinfections via IGENEX and/or Specialty Labs.

 

Elizabeth

Edited by KeithandElizabeth
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This is a little off topic but valuable information to the PANDAS/Lyme issues.

 

For those that didn't see it... I highly recommend Dr. Ann Corson's presentations on Pediatric Lyme from the ILADS Conference two weeks ago. She spoke about PANDAS but unfortunately I missed this part of the presentation. Its a fantastic way to educate yourself on Lyme easily without having to read a book. She definitely talks about co-infections, symptoms, primary presentation in children, testing, etc. etc. etc. etc.

 

#28122 CD Plenary Session; Pediatric Lyme - Ann F. Corson, MD

 

http://www.ilads.org/store/store_lyme_video.html

 

-Wendy

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Ah, interesting. Our PANDAS son's night sweats weren't drenching, more like low-grade fever leading to damp sheets, pillow, etc. He did tend to spike fevers intermittently for a long time, before we had a clear diagnosis. And he's extremely sensitive to heat and light. I've been told that this general sensory defensiveness is very common with basal ganglia injury / inflammation: even our OT mentioned this.

 

So I'm not sure of the mechanism. Chronic strep infection? For our son, very possible: our entire family continues to have elevated ASO titers (although falling finally after month of clindamycin). Although our son is still heat-sensitive, the night sweats are no longer a problem now that long-term abx have beaten back the symptoms.

 

It's all confusing, for sure, with lots of symptom overlap!

 

 

The night sweats we are experiencing with Bartonella and Bebasia are drenching. It is like they just got out of shower while sleeping. There is no doubt about what you are seeing. Also, because Bartonella and Babesia are co-infections it is something that is not typically tested for when doing the standard WB unless you specifically asked for a co-infection panel to be run.

 

In our case, its Congenital Lyme (past to child when pregnant) and our son is NOT serologically positive for Lyme Disease but is POSITIVE for Bartonella and Babesia. Hopefully, I'm making sense.

 

-Wendy

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My son had a LONG history of night sweats, and had a LONG history of PANDAS stuff. He is negative for Lyme per Western Blot, but definitely is PANDAS. Other infections that have been confirmed are Mycoplasma pneumoniae several times, and Clostridium difficile, a gut infection.

 

I have read in my medical reference manuals that night sweating is associated with chronic infection!

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Well, this is (I think) a very good debate.

 

I look at PANDAS/PITANDS as being the symptoms and lyme, strep and mycoplasma as being the microbes causing the PANDAS/PITANDS. My son initally only reacted to strep and was clearly PANDAS. Then he reacted to everything and became PITANDS. We found multiple microbes, including strep, mycoplasma, and lyme, as being the cause of his neurological/psychological symptoms.

 

I do not think of lyme as being a separate disease, but one of the potential microbes that cause PANDAS/PITANDS (I know that I am repeating myself). Our LLMD has tested several PANDAS kids now and he has found that many only have mycoplasma and strep as their issue or mycoplasma and staph as their issue. So, I do not think this is all lyme or all strep or all mycoplasma, but it is important to find what microbes are your child's issue so that you can properly deal with it. I think that one of the reasons why it is important to test for lyme via IGENEX is because lyme is trickier to treat than the other microbes. Mycoplasma and strep may be easily treated with one antibiotic or PEX or IVIG, but lyme often comes back to rear its ugly head if not dealt with properly.

 

Elizabeth

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yes I agree Elizabeth! Its all the same disease to me. Our kids present with tics/ocd and are infected with something! I really never understood why we needed a seperate lyme forum because we all freely talk about strep, viruses, vaccines, mycoplasma etc.. here on the pandas board but when one mentions lyme its like " oh you must go over to the lyme board to talk about that". We keep talking about lyme because diagnosis and treatment is tricky and very different. If a parent misses an infection like lyme or babesia a little zyth and ivig will not recover the child. We hear foot pain and think lyme. Perhaps we are skewed, traumatized by the lyme experience but tough to hold our tongues when we think what we have learned could help another child. I don't know why some are so offended. I have a lot of gratitude to some of the moms on this board who educated me on lyme disease and feel I have a better understanding of this illness and how to get my daughter well. Prior to Igenex testing, my daughter's western blot via Quest was negative. Igenex test revealed very lyme specific bands positive. Our lyme doctor also explained that the super high C3D (immune complexes) as seen in my daughter, are very common with lyme and sometimes prevent positive sereology. I now understand what was preventing my daughter from full recovery. Good luck to all and go rule out lyme.

Edited by momofgirls
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YES, they are DRENCHING night sweats.... with the Babesia and Bartonella.

 

Also agree many symptoms do overlap and PANDAS treatment was successful for our son like yours. For that I will be forever, grateful to Dr. K for giving us our son back in 2010. AND, I have no idea if things would have eventually changed for our older PANDAS son and eventually failing and requiring another hdIVIG treatment. Remember, we too always did the higher dose antibiotics because he was more responsive. Perhaps, we were effectively treating his Lyme, strep and whatever else he is co-infected with.

 

However, when looking at our entire family I am so grateful we pressed on because our other children had some serious infections and now we have the proof. I couldn't believe the one we didn't test for Lyme is the one that actually makes antibodies for Bartonella and Babesia! He was the least symptomatic at the time. Dr. K was unwilling to treat our twins for PANDAS because they lacked sudden on-set at 2 1/2 years of age. AND, I respect his cautious nature when it comes to hdIVIG.

 

Anyway, our situation doesn't apply to all but it might apply to some... so I post on.

 

-Wendy

Edited by SF Mom
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Looking into Babesia, Bartonella and Lyme seems like a good idea considering the night sweats and painful feet. Sounds like you are already exploring PANDAS, so that's good.

 

I also wanted to mention heavy metal toxicity as a possible factor in the night sweats. I had mercury poisoning (diagnosed 7 years ago) and had lots of night sweats leading up to the diagnosis and during the treatment period. This is probably tied in to liver stress, which Chemar mentioned. Also, my son has been diagnosed with Bartonella and we are looking into Lyme for both of us, so this is a possible factor too.

 

I think many kids with PANDAS/Lyme/other chronic infections might also have heavy metal issues and this should be looked into, as it would be hard to resolve either without bringing down the toxic load. A good DAN (Defeat Autism Now) doctor can look into the heavy metals for you.

 

It's important to remember that none of these things are exclusive. Many of our kids probably have multiple infections and health issues, so all roads need to be explored.

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I agree with mama2alex and our llmd tests for heavy metals. We are taking pectasol to detox heavy metals. My kids hair test showed high levels of arsenic which was shocking. They had silver fillings soni expected

Erfurt not arsenic! I learned that restaurant grade chicken is likely to blame because they feed the chickens arsenic to get them to market faster. Like so many kids chicken tenders is a favorite food.

Interesting that sfmom's son who was not the most sick one in the family was the only one making antibodies to Lyme (with a positive test). My middle son was the least sick and he had a more positive test than my daughter who was the second sickest (my oldest was really really sick with Lyme). Anyway this just shows how problematic the antibody testing is. My middle son had more antibodies and his body was able to handle Lyme better. Those who are sickest with Lyme sometimes do not make antibodies or make fewer antibodies to Lyme leading to false negative test results and delayed treatment for those who need it the most.

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I agree with mama2alex and our llmd tests for heavy metals. We are taking pectasol to detox heavy metals. My kids hair test showed high levels of arsenic which was shocking. They had silver fillings soni expected

Erfurt not arsenic! I learned that restaurant grade chicken is likely to blame because they feed the chickens arsenic to get them to market faster. Like so many kids chicken tenders is a favorite food.

Interesting that sfmom's son who was not the most sick one in the family was the only one making antibodies to Lyme (with a positive test). My middle son was the least sick and he had a more positive test than my daughter who was the second sickest (my oldest was really really sick with Lyme). Anyway this just shows how problematic the antibody testing is. My middle son had more antibodies and his body was able to handle Lyme better. Those who are sickest with Lyme sometimes do not make antibodies or make fewer antibodies to Lyme leading to false negative test results and delayed treatment for those who need it the most.

Sorry for the typo... ". They had silver fillings soni expected

Erfurt not arsenic!" Translation: ...so I expected mercury but not arsenic." It is very hard to edit a post on an iphone.

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