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arthritis, joint issues in yourself question


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I know I have seen many parents of children with pandas/pans mention their own joint issues. I am going to a new rheumatologist next week. In the past I was diagnosed by 1 rheumatologist as having osteoarthritis. It was many years ago and prior to all this pandas stuff with my ds. Another dr recently mentioned that they thought that diagnosis didn't seem right for me based on the age of onset and a few other things (I was 18 when it first started...severe in my fingers and then I had long periods, years of remissions with it seemingly randomly coming back. It's back again. My knees are a problem for me as well).

 

Is there any information regarding my son and pandas that I should be discussing with the rheumatologist? Specific things I should ask him to check? What questions or info could I give him that doesn't make me seem crazy but that might help him diagnose me accurately? I had lots of bloodwork done several years ago to check for lyme, lupus, and whatever other stuff the dr. put on it. Should I be asking for strep titers to be checked? I don't want to sound crazy or to be asking for things that are not connected and wouldnt' be helpful. I don't really understand all the science behind this stuff at all so I'm not sure what information would be relevant.

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Lyme would be an obvious one and you'd want to not just rely on a standard western blot. But you've been around long enough to hear that whole discussion so I'll assume you have the info you need/want in that regard.

 

I sometimes have joint trouble (hip and knees) that go away when I remember to take a 2mg copper supplement. I take a zinc supplement for pyroluria and so need to be more mindful of my copper than I am. I'm a bad patient. For ha ha's you can google a little on copper and joint pain then maybe ask him to check your copper and zinc levels to make sure the levels are both good and the ratio between zinc and copper is right.

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I would ask for mycoP testing. IgM and igG. I have rheumatoid arthritis and found a new doc who discovered I have chronic mycoP infection. As we treat, my IgM is going up at each blood draw. He surmises we are drawing out the mycoP and my body is finally learning to recognize it. My IgG remains high and does not go down which is part of the chronic mycoP dx. I've had RA for 15 yrs without joint damage and without ever having taken any of the big gun RA meds. I am on long term minocycline and azithromycin and it is holding my RA at bay. I started the abx 1.5 yrs ago. Prior I took plaquenil which has damaged my eyesight.

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I would google Rheumatoid and Infectious arthritis. I know I had a minor bout with Rheumatoid Arthritis as both thumb joints at the wrist were very sore--------to the point of not being able to move thumbs-----it was something I had never experienced. I could tell my immune system was fighting something. I know if it is extreme, the hands and fingers can become disfigured due to the chronic inflammation with in the joint. My pandas dd teacher had this around the same time as everyone else that I know was experiencing "weird" stuff.

 

As for the science, the way I understand it is that your body is having an immune response to bacteria or virus and it ends up attacking ones self or certain tissues with in the body.-----IE heart valves, joints or in Pandas the Basal Ganglia.

 

I think strep titers would help in knowing for sure what kinda immune responses you are having. As for preventative maintenance, I take zinc and vit c for immune support during illness. I also take curcumin/tumeric twice daily supplement. I found after starting it, the inflammation subsided. DAN doc put our kids on Enhansa for Pandas. I also take a good multi vitamin and other supps for various thing.

 

After seeing how the DAN protocol for my kids helped them, I have started diligently also. Just not the high cost stuff they are taking.

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I'm starting to feel really sad thinking that I might be the cause of these issues for my son.

 

Nicklemama, what kind of dr. did the myco testing for you? Your primary or a rheumatologist? I was the kid who had a cough my whole childhood.. constantly being told it was bronchial asthma.. My younger son's pulmonologist said chances are if I was a kid now like that I'd have been diagnosed asthmatic and given controller inhalers for it.. but goodness... what if it was more than that.. I think back to so many little things.. My knee issues started as a kid.. was always told growing pains.. they used to literally lock where I couldn't open them. Would a good rheumatologist know why I was asking to be tested for myco? Is it a common thing for a rheumatologist? I am just hoping I don't sound like I'm crazy on a wild good hunt just because I just don't think at the age of 18 for me that it was the start of just arthritis without something causing it. At the time I had just had the hep b shot for college and I see lots of online things about hep b vaccine causing it too... I doubt it was the cause of this for me but I have to wonder if there was something and then it triggered it. I'm probably really far fetched and it's hard to try to remember back 20 years to the details of it starting....

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Good timing! I am about to contact my dr because of the same kind of issues. 3 years ago (oct) following an infection (congestion sore throat etc) I started with finger joint followed by wrist, elbow and finally knee and ankle pain. 'cos of RA in the family I was referred to a rheum. They did rheumatoid factors CRP and ESR.. all came back normal and I was sent home with a "come back if it hasn't gone in 3 months".

 

It did go but has reappeared to a lesser extent (hands mostly) each year at about same time. This year it came back as dd flared in Nov. It hadn't completely resolved when ds swabbed +ve for strep. At same time the thumb and finger MCP joints got worse.

 

My questions will be - can we test for RA again, could it be post infectious arthritis (reactive I think it's called) and (don't laugh) but could it be mild ARF (also in family) is that something that can present mildly like this?

 

let us know how you get on......

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Not to overdo the Lyme point but knee issues starting as a kid sounds like Lyme should be evaluated, a rheumatologist may or may not use the right test (the one I took DD to was horrid) . Dd (lyme, pandas, myco etc) has been helped by these supps in regards to joint pain: enhansa, quercetin, fish oil and vitamin c. It is not an overnight cure but it really does help. Dr B also told me myco can cause joint pain. Dd had some improvement in her joint pain on abx but it came back. The supplements seem to really work well although it takes a couple of months and patience :) good luck

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I have a question for all who posted.

I am assuming you saw the video on Dr oz reguarding the 3yr old child with joint pian.

i thought i saw the link posted on ACN and some other info.

the child was put on gf/cf/nighshade free diet..and in 6 weeks was better but took the full six weeks.

 

My ds has had joint pain when on specific abx ie.augxr.

when given an anit fungal at same time the joint pain does not come on.

ergo..fungus in the joints?

leak/ier gut allowing food particles to create other bacteria in the joints?

 

Are all of you suggesting...that ra symptoms are all(most) from viral/infection/lymes? not saying you are wrong.

or do any of you think you have leaky gut and that is the problem for jiont issues?

or do you think if you clear the infection, you will NOT have to be concerned about food issues?

 

if you have not seen the 3yr old twin(the other twin is fine..here comes epigentics or other into play)with painful ar i will look for it and post.

 

I would really like to hear your thoughts

 

Sorry ..it was down below

http://www.latitudes.org/forums/index.php?showtopic=19752

Edited by Fixit
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Another possible cause of joint pain is mold illness. Not sure if you've looked into this, but here are a list of possible symptoms from Dr. Shoemaker's website:

♦Fatigue ♦Weakness ♦Aches ♦Muscle Cramps ♦Unusual Pain ♦Ice Pick Pain ♦Headache ♦Light Sensitivity ♦Red Eyes ♦Blurred Vision ♦Tearing ♦Sinus Problems ♦Cough ♦Shortness of Breath ♦Abdominal Pain ♦Diarrhea ♦Joint Pain ♦Morning Stiffness ♦Memory Issues ♦Focus/Concentration Issues ♦Word Recollection Issues ♦Decreased Learning of New Knowledge ♦Confusion ♦Disorientation ♦Skin Sensitivity ♦Mood Swings ♦Appetite Swings ♦Sweats (especially night sweats) ♦Temperature Regulation or Dysregulation Problems ♦Excessive Thirst ♦Increased Urination ♦Static Shocks ♦Numbness ♦Tingling ♦Vertigo ♦Metallic Taste ♦Tremors

 

I would guess if this is a/the cause for you, you would have more than just the joint pain, but not sure, everyone's different.

 

Here is a link to the blood tests that can be done to identify this: http://www.survivingmold.com/diagnosis/lab-tests. They are not "mainstream" per se (although my insurance covered them), so I'm not sure whether this would be a comfortable discussion to have with the rheumatologist. I think most western/mainstream docs don't know about mold toxicity.

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Strep can also cause a version of arthritis called polyarthritis. The treatments are usually steroids, IVIg, or antibiotics or antivirals depending on the root cause.

 

My son has had horrible ankle pain and joint pain in his fingers and wrists. He is being treated for Lyme and Bartonella and preventative treatment for strep. He has achieved total remission of his pain symptoms while on a steroid taper, so I believe there are treatments out there that will bring relief. It is just a matter of finding the right one for your child.

 

Do not blame yourself, if you could have done something differently I am sure you would have done that. You are seeking the best care for your child now and that is what is important.

 

Cobbie

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You'll be lucky if you can get a rheumatologist to get onboard. I ditched my rheumatologist. I am seeing a DO. I got his name from the Road Back website that is info/support for those with RA (and quite a few lyme patients too) who want to use the AP for rheumatoid arthritis rather than heavy duty meds. AP is the antibiotic protocol developed by Dr Brown in the 40's. You can also google the MIRA study. Its a double blind study of using minocycline for RA. I'm doing really well on it.

 

www.roadback.org

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Fixit I have not seen the video, however I have read other moms post that GF/CF helped with joint pain.

In DD's case, the joint pain was single sided, eg left hip, right knee and transient so it was a pretty big flag that it was caused by Lyme. Also motrin did not help at all and it was excruciating pain, she actually cried one night begging me "mommy it hurts so much, please help me" . Our LLMD preses her joints at every visit and I remember one visit where every spot was tender. It also came on with the initial Lyme presentation, she never complained of pain before that. ABX did cause a herx with her, every time we switched she would develop severe pain. Interstingly she also had terrible pain after a day in the ocean, I think it just drained so much crap out of her that she herxed.

It would make sense to me that Gluten sensitivity could cause inflammation and therefore pain, but I would suspect that would be bilateral and more achy. I am sure that all these other things can cause it too (Lyme is notorious for causing leaky gut)

DD has elevated ASO and Myco too, but the single sided transient presentation, timing and herxing gives me a fair degree of confidence that it is from Lyme. We do not do gluten free, mainly because its just feels overwhelming for me, but I do think that would be optimal.

My opinion, is that you have to address all of the infections to get fully well, mind, body and soul too.

I also think, after doing so much research and reading so many accounts, that there are tens of thousands of undiagnosed Lyme cases, expecially those with arthritic symptoms, chronic fatigue and fibromyalgia - Lyme is so tricky to diagnose, and combined with what seems to be some type of coverup, and so few doctors capable of assesing it properly, that it really goes undectected making people really sick. Knee pain is one of the most common Lyme symptoms (esp single sided) so when I hear someone with knee pain my first thought is Lyme. There are of course probably hundreds of other causes, but if someone does not get well despite treatment Lyme definitely bears consideration.

 

I have a question for all who posted.

I am assuming you saw the video on Dr oz reguarding the 3yr old child with joint pian.

i thought i saw the link posted on ACN and some other info.

the child was put on gf/cf/nighshade free diet..and in 6 weeks was better but took the full six weeks.

 

My ds has had joint pain when on specific abx ie.augxr.

when given an anit fungal at same time the joint pain does not come on.

ergo..fungus in the joints?

leak/ier gut allowing food particles to create other bacteria in the joints?

 

Are all of you suggesting...that ra symptoms are all(most) from viral/infection/lymes? not saying you are wrong.

or do any of you think you have leaky gut and that is the problem for jiont issues?

or do you think if you clear the infection, you will NOT have to be concerned about food issues?

 

if you have not seen the 3yr old twin(the other twin is fine..here comes epigentics or other into play)with painful ar i will look for it and post.

 

I would really like to hear your thoughts

 

Sorry ..it was down below

http://www.latitudes.org/forums/index.php?showtopic=19752

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Thanks everyone. Certainly a lot to take in. Wile I do live in a high deer infested area I don't suspect it's Lyme for me but of course I know Lyme is tricky and it could be it. My knew issues started as a kid, both knees...they would literally lock sometimes. I was given knee exercises by a physical therapist that did help. I had long periods of remission from pain at different times. Same with my hands, I would go long periods of time with no issues.

 

I never saw that video and never thought it was leaky gut or food issues of any sort simply because it wouldn't have occurred to me. If it was that wouldn't it be a more consistent problem? If my diet didnt change why would I go years with being fine, have problems, then have years of being fine again?

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Beware-joint damage does not equal pain. Most people show signs of the same joint wear-and-tear as people with joint pain, yet they have no pain.

 

There was a paper published in 1994 by a doctor (M. Jensen) and her colleagues in the New England Journal of Medicine. They performed MRIs on about 98 people who had no history of back pain. The researchers found normal discs in only 36% of the people. Everyone else had bulges, herniations of various kinds, and so on, and yet no pain. That's the kind of information that doctors in this country totally ignore.

 

Instead, I recommend that you look at your SLEEP. If you have joint pain, cold hands and feet, low blood pressure, fatigue, you might have something called upper-airway resistance syndrome. (http://www.caring.com/articles/uars-may-be-why-you-are-so-tired)

 

We heal our bodies in deep sleep, which you don't get if you have UARS or sleep apnea, or otherwise can't breathe easily. Even if you've been in bed 8 hours/night and think you sleep fine.

Edited by ThinkGutBacteria
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I'm going to give a personal caution in the other direction. It may make me unpopular for the moment, but so be it, I'd hate for anyone to repeat my mistakes.

 

For over 10 years I dismissed most of my joint pain as either the result of years of abuse as a dancer and competitive college cheerleader, or looked for causes "other" than something I didn't want to face or deal with. The pain I was experiencing on a daily basis was all in joints that I had previously injured over the years of dance/cheerleading - so it made sense to some extent. And it always seemed to get worse when I was sick, so infection related also made sense to me.

 

When my hands finally got into the mix, I finally looked for help. But wouldn't accept the initial dx that my primary care (who was also my mother's doc) and my rheumy gave me of ankylosing spondylitis (a genetic disease similar to arthritis but also serverly impacts the hips and spine - eventually causing permanent bone fusion of the spine if untreated).

 

I spent over a year looking for other potential causes and cures (infection, natural remedies, etc...) Finally, a genetic test to confirm the HLA B-27 gene and scans showing I already had irreversible bone fusion in my upper and lower spine convinced me to drop the search and begin treatment for my AS. The reason I always got worse when I was sick is the nature of the disease - the more you are inactive, the more damage is done and pain you experience - when I would be sick and spend days in bed, it always got worse. Even after I "accepted" the dx, I pushed off any real treatment for another 9 months becuase I was still nursing my son and wanted to try other less harsh treatments first. It wasn't until I was shown the difference in my 6 month scans over that time (and saw additional fusion) and I submitted myself to the same indepth research I had spent on PANDAS on AS did I realize that there is no turning back this disease - only slowing it down. Refusing treatment that will help delay it's progress really was not a good idea.

 

In the 4 years since I started treatment, I have significantly halted the progression of the bone fusion. I still have significant joint pain daily, but my yearly scans show very little progression of fusion - for now.

 

My story has 2 cautions - First: If I'd known and understood my family genetic history (mom's side carries the gene - she has uvitis (another rare arthritis caused by the gene) and both my uncle and grandmother had AS, I would've gotten treatment much sooner, and wouldn't have ignored my body's warning signs like I did. (Onset for AS is between 17-35, mine began around 23.) That history can be the key to alot of our medical mysteries - unfortunately for most of us, our parents generation doesn't believe in sharing that information.

 

Second: The time I spent in denial and searching for other causes and treatments has caused irreversible damage to my hips and spine already. The damage to my knees is also severe - 3 different rheumies have all told me that they have rerely - if ever - seen damage that severe in someone my age who hasn't played professional sports of some kind. I'm looking at early hip and knee replacements (possibly even before 50), and eventually, likely a wheelchair. Not how I imagined my retirement.

 

Am I telling anyone NOT to look for alternative causes outside of arthritis for their joint pain - obviously not. AS is NOT traditional arthritis, and had I accepted a dx of RA early on, I would be worse off than I am now. You still have to question and make sure the dx makes sense. But I am saying that there may have to come a time when you have to accpet something you'd rather not.

 

I didn't like the prognosis of AS, and I watched what it did to my uncle - he was a stooped over hunchback from the bone fusion by the time he was in his mid-50's. Sticking my head in the sand for as long as I did wasted away many years of me not feeling my best - and has taken away many more to come as my body will fail more quikcly because of my own stubborness.

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