arthritis and strep?

[ajcire]

Ok... I honestly had never heard any of this before and now I'm finding it really curious... I do not have a history of arthritis in my family background.... I had knee problems since I was 10... it was always written off by doctors as growing pains. I got some relief from a chiropractor but missed many days of school simply because my knee would lock up on me.....I still have knee problems... at one point a physical therapist gave me some exercises to do to help....

 

But when I was 20 I had severe issues with my hands. My fingers were swollen so bad and my joints hurt so much I couldn't use them. I was away at college and we thought maybe it was the extreme cold weather from where I was but I was there for 4 years and I only had this issue my third year there.... I was tested for reynauds (ack spelling), lyme, other stuff and I believe it something came back positive towards an arthritis but I wish I could remember exactly because it's been so long they don't have my records and my mother can't exactly remember.... they had put me on a few things for it including glucosimine something or other... I finally stopped having problems (although I would say not directly correlated to anything they gave me for it) and the problems acted up again about 6 years later... I was put on celebrex (I know, bad stuff) but for a very short while because I stopped as soon as we thought about trying to conceive... I guess at some point it just stopped again.... Now almost 10 years later I am having the same exact problem and have an appt with a rheumatoid dr. next week....

 

I do not have a history of strep that I am aware of....I had strep 2 times both within the last few years (thanks to my kids). Of course I had mono and never knew it.. it was just a mild sore throat/fever for me that we found out was mono incidently in bloodwork when I was having dizzy spells....

 

Should I be mentioning my son's pandas to this dr. or will I appear crazy? Is this sounding more like coincidence than anything that I have joint issues?

[tired mom]

Ok... I honestly had never heard any of this before and now I'm finding it really curious... I do not have a history of arthritis in my family background.... I had knee problems since I was 10... it was always written off by doctors as growing pains. I got some relief from a chiropractor but missed many days of school simply because my knee would lock up on me.....I still have knee problems... at one point a physical therapist gave me some exercises to do to help....

 

But when I was 20 I had severe issues with my hands. My fingers were swollen so bad and my joints hurt so much I couldn't use them. I was away at college and we thought maybe it was the extreme cold weather from where I was but I was there for 4 years and I only had this issue my third year there.... I was tested for reynauds (ack spelling), lyme, other stuff and I believe it something came back positive towards an arthritis but I wish I could remember exactly because it's been so long they don't have my records and my mother can't exactly remember.... they had put me on a few things for it including glucosimine something or other... I finally stopped having problems (although I would say not directly correlated to anything they gave me for it) and the problems acted up again about 6 years later... I was put on celebrex (I know, bad stuff) but for a very short while because I stopped as soon as we thought about trying to conceive... I guess at some point it just stopped again.... Now almost 10 years later I am having the same exact problem and have an appt with a rheumatoid dr. next week....

 

I do not have a history of strep that I am aware of....I had strep 2 times both within the last few years (thanks to my kids). Of course I had mono and never knew it.. it was just a mild sore throat/fever for me that we found out was mono incidently in bloodwork when I was having dizzy spells....

 

Should I be mentioning my son's pandas to this dr. or will I appear crazy? Is this sounding more like coincidence than anything that I have joint issues?

I think you should mention it. I have a niece who at four years old could not walk for a couple days and had terrible joint pain. I know my brother took her to Childrens Hospital in Philadelphia and they said it was some type of rheumatoid arthritis associated with an untreated strep infection. She has been fine now.

[thereishope]

Reactive arthritis can be caused by strep. I believe if the arthritis is caused by strep, over time it will ease up on its own and you may notice a pattern. If was anything like RA, it would just worsen and even slowly distort your hand at times.

[ajcire]

The other thing I now remember thinking was if my knee issues were separate which they certainly could have been.... was that I had gotten the hepatitis b shot in order to go to college... I am now remembering that my hand issues started my first year of college but mild.. they were not like they were my 3rd year in where I couldn't use a pair of scissors... and I remember my mom had seen something on tv about the hep b shot and arthritis... The doctor I asked didn't think there was anything to what I was suggesting.... who knows.. could have been coincidental timing.

[Megs_Mom]

We are on the same search. I am reading "Back Road" and HArry Scammel's book "New Arthritis Breakthrough" (written in late 90's, so not so "new"). They do discuss strep, but more so mycoplasma and other infectious agents. It is very interesting, and as complex/controversial as PANDAS. Have also been lurking on www.backroad.org.

 

What really got me interested is that Meg has a mini-flare at the end of January (enough to stress me out, not enough to stop her from doing anything), which is now 2 ear infections dignosed about 2 weeks after the start) which don't seem to be resolving on abx. My dh got a major flare up of RA (this time in his neck) a few days before my daughter's flare of PANDAS. His comes & goes - but when it comes, it is very bad. They cannot find anything really wrong with him - this time we did x-rays & an MRI - no signs of physical damage in joints. So our MD is willing to do some basic testing for us - I asked for strep (all titers, etc) and lyme - but really, we live in NC, and we'll see what tests they have run when they come back. There are no lyme literate docs in NC - but I keep hearing that we have lyme tics down here - and he is from CT, so that is possible as well. I was not with him for the exam (I sent emails to the doc ahead of time) so I have no clue what tests were run - they promised a conf call with me once the results are in.

 

I am leaning towards begging for abx, but am trying to understand which one. I keep reading about very low levels of Minocycline, 100 mg on M/W/F. In the meantime, his RA is starting to fade again, so he is less concerned than I am. I am the researcher in the family - you know the story. So I am trying to read & ask questions without being too nutty, but I am concerned.

 

Maybe all coincidence.

[ajcire]

Meg, that is definitely the hard part for me..... I have researched so much on the pandas and my dh is not very into this at all... but I did get him on board enough to support my taking my ds to a dr. who doesn't take insurance (not an easy sell to my dh) to talk about the pandas concerns....

 

A kind poster just shared lyme info with me and I am a bit freaked out when I read about it.. and I am baffled why there wouldn't be doctors who could help with this everywhere... I feel like if I go this route I will be going through the exact same thing I just did with pandas... listening to doctors tell me I'm crazy again. I am going to talk to my doctor as well as the rheumatoid doctor regarding this to at least see if they will think I am crazy... I am starting to think in my case there might be more likely a lyme connection than strep with this.. Of course I suppose I could just have arthritis and I'm looking too much into this... But I just went down a lyme checklist and well... I'm concerned.

 

 

 

We are on the same search. I am reading "Back Road" and HArry Scammel's book "New Arthritis Breakthrough" (written in late 90's, so not so "new"). They do discuss strep, but more so mycoplasma and other infectious agents. It is very interesting, and as complex/controversial as PANDAS. Have also been lurking on www.backroad.org.

 

What really got me interested is that Meg has a mini-flare at the end of January (enough to stress me out, not enough to stop her from doing anything), which is now 2 ear infections dignosed about 2 weeks after the start) which don't seem to be resolving on abx. My dh got a major flare up of RA (this time in his neck) a few days before my daughter's flare of PANDAS. His comes & goes - but when it comes, it is very bad. They cannot find anything really wrong with him - this time we did x-rays & an MRI - no signs of physical damage in joints. So our MD is willing to do some basic testing for us - I asked for strep (all titers, etc) and lyme - but really, we live in NC, and we'll see what tests they have run when they come back. There are no lyme literate docs in NC - but I keep hearing that we have lyme tics down here - and he is from CT, so that is possible as well. I was not with him for the exam (I sent emails to the doc ahead of time) so I have no clue what tests were run - they promised a conf call with me once the results are in.

 

I am leaning towards begging for abx, but am trying to understand which one. I keep reading about very low levels of Minocycline, 100 mg on M/W/F. In the meantime, his RA is starting to fade again, so he is less concerned than I am. I am the researcher in the family - you know the story. So I am trying to read & ask questions without being too nutty, but I am concerned.

 

Maybe all coincidence.

[lyme_mom]

Meg, that is definitely the hard part for me..... I have researched so much on the pandas and my dh is not very into this at all... but I did get him on board enough to support my taking my ds to a dr. who doesn't take insurance (not an easy sell to my dh) to talk about the pandas concerns....

 

A kind poster just shared lyme info with me and I am a bit freaked out when I read about it.. and I am baffled why there wouldn't be doctors who could help with this everywhere... I feel like if I go this route I will be going through the exact same thing I just did with pandas... listening to doctors tell me I'm crazy again. I am going to talk to my doctor as well as the rheumatoid doctor regarding this to at least see if they will think I am crazy... I am starting to think in my case there might be more likely a lyme connection than strep with this.. Of course I suppose I could just have arthritis and I'm looking too much into this... But I just went down a lyme checklist and well... I'm concerned.

 

 

 

We are on the same search. I am reading "Back Road" and HArry Scammel's book "New Arthritis Breakthrough" (written in late 90's, so not so "new"). They do discuss strep, but more so mycoplasma and other infectious agents. It is very interesting, and as complex/controversial as PANDAS. Have also been lurking on www.backroad.org.

 

What really got me interested is that Meg has a mini-flare at the end of January (enough to stress me out, not enough to stop her from doing anything), which is now 2 ear infections dignosed about 2 weeks after the start) which don't seem to be resolving on abx. My dh got a major flare up of RA (this time in his neck) a few days before my daughter's flare of PANDAS. His comes & goes - but when it comes, it is very bad. They cannot find anything really wrong with him - this time we did x-rays & an MRI - no signs of physical damage in joints. So our MD is willing to do some basic testing for us - I asked for strep (all titers, etc) and lyme - but really, we live in NC, and we'll see what tests they have run when they come back. There are no lyme literate docs in NC - but I keep hearing that we have lyme tics down here - and he is from CT, so that is possible as well. I was not with him for the exam (I sent emails to the doc ahead of time) so I have no clue what tests were run - they promised a conf call with me once the results are in.

 

I am leaning towards begging for abx, but am trying to understand which one. I keep reading about very low levels of Minocycline, 100 mg on M/W/F. In the meantime, his RA is starting to fade again, so he is less concerned than I am. I am the researcher in the family - you know the story. So I am trying to read & ask questions without being too nutty, but I am concerned.

 

Maybe all coincidence.

It is very common for whole families to be sick with lyme but for each person to have different symptoms. They believe that husbands and wives can give it to each other and that lyme can be passed from mother to child in utero. This is well documented in the medical literature. I suggest lyme testing for the whole family and not the screening test. Igenex is best (test 188 and 189), Labcorp western blot is the best of the ones covered by insurance. There was a great lyme doctor in NC but he was run out of the state by the NC medical board. They didn't like that he treated people for lyme who didn't always have a positive test. They are clueless down there about this growing epidemic. He now practices in Washington, D.C. There is a virologist in NC who is Ilads-trained and I have spoken with her myself. She seems pretty good. I can send you her name when I find it. Her office is near Camp LeJeune. Check out the lyme symptom checklist on the ilads.org website. Its under "Treatment" and the document was written by Joseph Burrascano, MD. Read Cure Unknown and you will "get" lyme. Pamela Weintraub should get a Pullitzer for this book. It reads like a spy novel and chronicles the stories of many families where everyone was sick with lyme. Lyme is a spirochete like syphilis and can affect every bodily function, including and especially the brain. Bartonella is a lyme related illness that can cause ocd but testing is very unreliable. If any of you have sore soles of the feet or leg cramps you should suspect Bartonella or Babesia. Nightsweats is another symptom that suggests lyme. The list is very long, however, and you should review it and see if you have any of the symptoms. Again, read the book and watch Under Our Skin the documentary. You will really understand what I am talking about after that.

lyme mom

[Megs_Mom]

Lymemom - I was just reading about that doctor in NC, as he was only 5 miles from our town. That is a pretty frightening story. I just read the entire case summary against him - and kept trying to figure out the harm done. Made me realize that our MD may have real issues even talking to us about this. I'm going to watch the video as well - I am really not sure that my dh is Lyme - or strep - or mycoplasma - but given our family history, it certainly feels like something that we should check out. I am from the Camp Lejeune area - can you send me that doc name? I was also reading about the high rate of Lyme at Camp Lejeune - I understand there was a study done there that should have been done in 2009, but I can't find it yet. If anyone has it, can you send to me? Thanks!