Home Forums General Discussion Red hot kneecaps without pain… anyone have this?

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  • #455879
    Zach
    Participant

    I’ve been on a hunt to find ANYONE with the symptoms that I’ve been seeing. ANYONE. Some people have said I have RA. Some have said lyme disease. Some have said erythromelalgia. So have said it’s nothing at all. I have considered taking ABX for this if it could help, hence why I’m on this site.

    About six months ago, my knees started getting red and hot late in the day. No pain. And this is only on the tops of the knees. So I have full range of motion. It seems like it’s connected to stress or irritability or nausea when it happens. My mood is usually rock solid and I can tell it’s changing beyond my will, and sure enough my knees start getting red and hot on the top.

    Both knees. Sometimes one more than the other. If I take a shower, they will be red and a little hot, and it’ll go away. Running does the same.

    I did every possible test for RA, including anti-CCP, RF, ANA, SA, etc, all negative. I generally feel good.

    I went to an LLMD who did a new iSpot test (not FDA approved or really universally respected) which is considered “sensitive” and I got a positive. They trust it, I don’t really. Regardless, antibiotics are sounding more and more like a universal solution.

    My hands and feet have gotten hot when taking acyclovir and they went away after a bit of prednisone. But it was sort of similar to my knees.

    Anyone have any tips? 🙂

    #455887
    jasregadoo
    Moderator

    Hi Zach,

    I haven’t got any tips and I haven’t experienced what you’re describing, but I wanted to comment at least so you would know someone saw your post and that it has been read. I am a fellow patient, not a doctor by any means. If I had gotten the positive test that you have gotten, I think I would try antibiotics. The risk isn’t high for side-effects, and it seems like a good idea to treat it if you can, as early as you can.

    I will say that for perhaps 2 or 3 years prior to my diagnosis of RA, my hands would get hot and swollen when I went for a walk. I would have to take my rings off because my fingers were so swollen. Another symptom that I had was that I would get tingling in my hand while sleeping on my side, but it was the hand on top, not the one I was laying on. I don’t know if that is useful to you at all, but I believe it was related to whatever else has gone on to cause this, and as I said, it was for a couple of years prior to all of the other symptoms that hit me so suddenly almost 2 years ago. Since I’ve been on antibiotics, I don’t have these symptoms anymore, though my knuckles are swollen enough that I cannot wear my rings anyway. I have been on antibiotics for about 16 months, and I am SO MUCH better, but the swelling in those joints hasn’t decided to leave me yet. I had one day when I was on prednisone when I could wear my rings for a couple of hours before they puffed up again, but it was only 1 day, and I’m off of prednisone at this point.

    Good luck, and maybe someone else will chime in.

    #455909
    lyndsaylee
    Participant

    It sounds similar to something I experienced only for me it was on my elbows. Flaming red, hot and tender. The inflammation would come and go. It was especially bad if the fabric of my clothing was rough or if I leaned on my elbows for an extended time. Eventually psoriatic plaques developed on one of the elbows. Previous to this I only had psoriasis on my scalp.

    #455911
    Calida
    Participant

    Hi Zack,

    I was diagnosed with erythromelalgia before I was diagnosed with Lyme but I had knee symptoms similar to yours before that. Do you ever feel minor swelling behind the knees as if there’s a bit of fluid?

    My hands used to melt ice packs so quickly, I needed a new one every 15 minutes because the heat was so intense.

    I’m not familiar with iSpot testing, I tested positive for Lyme through Igenex. Did anyone test you for Lyme through the commercial labs via Western Blot?

    Kelly

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #455916
    Calida
    Participant

    Zach, I was researching antibodies when I came across the following page. I thought the excerpt below may illustrate the process behind your knee inflammation.

    https://www2.estrellamountain.edu/faculty/farabee/biobk/BioBookIMMUN.html

    “When microorganisms penetrate skin or epithelium lining respiratory, digestive, or urinary tracts, inflammation results. Damaged cells release chemical signals such as histamine that increase capillary blood flow into the affected area (causing the areas to become heated and reddened). The heat makes the environment unfavorable for microbes, promotes healing, raises mobility of white blood cells, and increases the metabolic rate of nearby cells. Capillaries pass fluid into interstitial areas, causing the infected/injured area to swell. Clotting factors trigger formation of many small blood clots. Finally, monocytes (a type of white blood cell) clean up dead microbes, cells, and debris.

    The inflammatory response is often strong enough to stop the spread of disease-causing agents such as viruses, bacteria, and fungi. The response begins with the release of chemical signals and ends with cleanup by monocytes. If this is not enough to stop the invaders, the complement system and immune response act.”

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #456296
    Zach
    Participant

    Oh wow, I forgot I made this post and did one of my desperate searches for “red hot knees” and found it, intrigued. Nope, just me. 😛 BUT, great information. To answer some questions:

    Yes, I did the Western Blot for lyme. I am negative even by LLMD standards, only band 41 was positive, which is also positive in 50% of normal non-lyme patients. I had somewhat low CD57, somewhat high TGF-beta-1, and somewhat high c4a, but after more research, those can be affected by mold, HHV6, and EBV, all of which came back very positive. The iSpot test that gave me a positive for lyme is known to give positives to nearly everyone, and the Utah doctor I went to admitted that 90%W of people that come in get a positive (yes, they are seeing a lyme doctor, but still, that’s very high, especially for Utah). So I’m frankly doubtful that I have lyme, I have no other symptoms besides my evening red, warm knees.

    It still happens nightly, but during the morning/days I’m absolutely fine. After showers now, I’m fine. Working out can trigger it, so I take it easy. Heat triggers it as well, but more prevalently at night, during day I can be in 100 degree weather. And no, I don’t think I have had much swelling… just red heat on the top of the knees.

    I used to be a heavy cyclist before this started happening (like 2 hours a day sometimes) and I never worked out my leg muscles. So I thought it was tendonitis at first. I’m 29, but that was the simplest explanation. And 6 months later, I’m down the rabbit hole of possibilities.

    SHOULD I try antibiotics for something like this? I feel great otherwise. If I put aloe vera on my knees when it happens, it goes away for the night. ALOE VERA. So it’s very controllable. I’m sort of scared that antibiotics will damage my gut flora. But I’m also on the line about trying it. Because I agree, it seems like it is something bacterial/viral.

    #456297
    Zach
    Participant

    Also, I have been trying to treat the heat in my knees. Perhaps I should let it happen, based off that excerpt? I have been going off fears that the inflammation (if that’s what it is) will cause issues. Buhner (in Healing Lyme) also suggests that cytokine cascades are triggered by lyme bacteria and they thrive in it. I decided not to let it happen if it is indeed Lyme. So I’m not sure what to do. :/

    #456298
    Calida
    Participant

    …..those can be affected by mold, HHV6, and EBV, all of which came back very positive…. I have no other symptoms besides my evening red, warm knees….
    SHOULD I try antibiotics for something like this? I feel great otherwise. If I put aloe vera on my knees when it happens, it goes away for the night. ALOE VERA. So it’s very controllable. I’m sort of scared that antibiotics will damage my gut flora. But I’m also on the line about trying it. Because I agree, it seems like it is something bacterial/viral.

    Hi Zach,

    So sorry to hear you’re still dealing with the inflammation. As a fellow patient with similar symptoms, I have some thoughts:

    AP is used to treat rheumatic disease and, at this time, you don’t have that diagnosis. A more complex version of AP is used to treat Lyme and those tests were negative. Have you been tested for Lyme coinfections? A good LLMD will run the full panel, checking for infectious pathogens that can be transmitted by ticks, mosquitoes, fleas, etc.

    Your reaction to acyclovir, inflammation of hands and feet, might indicate this antiviral is hitting its target which would make sense as you have tested positive for EBV and HHV6. Erythromelalgia symptoms are spontaneous, not triggered by a drug.

    As anyone with autoimmune flares can tell you, inflammation can trigger physical symptoms such as nausea as well as emotional symptoms like anxiety and stress so you were wise to make that connection.

    Have you been evaluated by an orthopedic doc to check out the mechanics?

    with regard to treating the heat and inflammation, that depends on your level of discomfort. As a mother, I tried to maintain a delicate balance when my children had a fever. I rarely treated a temp less than 104 (unless the child had other symptoms) and they usually recovered in a day or two. Lower temps meant the illness lasted a bit longer. However, you’re correct, sustained, chronic inflammation can cause secondary issues including permanent damage. You’ve been dealing with this inflammation for 7 months so it’s time to find a doc who can diagnose and treat the cause of the inflammation.

    Integrative, functional and naturopathic doctors can look at the big picture and help with the mold problem as well as inflammation. They will diagnose and treat but also help you achieve optimal health so your body can fight the cause of the inflammation. I can see why you’re concerned about a bug like Lyme that can thrive under these conditions since the heat and inflammation have not eradicated the problem. But unless you’re diagnosed with a chronic, systemic infection that responds to antibiotics, AP and Lyme treatments just don’t make sense and will do more harm than good.

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #456299
    Zach
    Participant

    Wow Calida, can you be my doc? 🙂 Very informative and your logical outlook on this is impressive. I have bounced around all kinds of docs, dermatologists have told me it may be a connective tissue disorder and found no trace of autoimmune disease through biopsy, only inflammation markers. An orthopedic doctor did tests/x-ray and said my knees were absolutely healthy 7 months ago. Other standard doctors ran blood tests and found nothing wrong anywhere. Another orthopedic doctor said it seemed like a skin issue. My local LLMD seemed equally untrustworthy on the other end of the spectrum: very quick to tell me I have lyme before testing and gave me lobelia to treat it (no scientific research for this whatsoever). They also told me to do testosterone replacement therapy without telling me I’d have to be on it for life (?) despite my T numbers not being out of the acceptable range. The last thing he did was muscle testing, which was the last straw honestly. My scientific mind could not accept that holding a bottle up to my heart while someone pushes down my arm is a valid test WHATSOEVER.

    So now I’m in the process of waiting for a rheumatologist, MRI scan, and another orthopedic. Just on a hunt for doctors that aren’t stuck to a medical rubric (saying that lyme doesn’t exist in Utah) but also are scientifically sound.

    My gut is to just stay off my knees, relax for a bit, treat them so they don’t get too hot, thus preventing any damage caused by the inflammation but still allowing healing. Prednisone helped, but I’m going to refrain from that. I am currently doing a Buhner protocol with many herb tinctures that I take 3 times a day just in CASE I have lyme, but have not noticed any impact from this (although the herbs have scientific research for overall health). I also take many supplements, D3, lysine, zinc, probiotic, etc.

    I notice the issue is mostly prevalent after my commute home in traffic when I’m standing making dinner (but I stand at work all day). Was this the case for you with your knee issue? Did you also have no pain, and did topical treatments like aloe vera help at all? Is it gone for you now?

    #456300
    Zach
    Participant

    Also, your conclusion about acyclovir hitting its target is VERY interesting and yes, does indicate that this problem may be viral instead of bacterial. Hmm.

    #456310
    Calida
    Participant

    Zach, I had a good chuckle when I read your description of muscle testing, aka kinesiology. I went to a holistic dentist and sat in a chair for 2 hours while he missed everything related to my true diagnosis. He was a good dentist, though, when it came to straight up dentistry but I have about $400 worth of “special” magnets he invented collecting dust somewhere. There might be something to kinesiology but I prefer documentable evidence.

    Everyone here in this forum develops a sizable repository of medical knowledge in their brains, acquired during our search for a diagnosis and treatment that actually works. For most of us, the only way to return to a normal life is to understand basic immune system functions and apply research and logic, which led us to AP. You may not have a rheumatic disease or Lyme but I think you’ll find your answer, just as we did, because your approach is one that leads to success.

    I can relate to your knee problems on many levels. Mine developed long before I was diagnosed with an autoimmune disease and there was no pain, just inflammation. More recently, the pain became debilitating but that’s due to protecting my knees and losing muscle strength in my legs. It’s a catch-22 situation. Strong muscles provide great joint support but exercise can increase inflammation. I was thinking the doc may have suggested the T to add muscle strength but I think your gut reaction was sound. Treating an unknown with hormones doesn’t seem like good medicine, especially with your T in range. The cascade effect from increased T can cause problems you don’t need.

    My knee problems have improved significantly since treating the systemic disease but there are days I’m stuck in traffic for 2 hours and cooking dinner is a monumental effort as the pain fogs up my head. There’s a family joke about adding a door to the kitchen and putting up a warning sign that all who enter do so at their own risk because I’m easily distracted on those tough days and burn too many meals. I did it to myself, though, in taking on too much physical activity too soon with a great deal of running and lifting. Getting your life back after facing a death sentence is a heady experience, you want everything you had before and it’s hard to be patient.

    Infectious pathogens are great at finding your weak points. Years of cycling may have led to minor wear and tear on your knees, creating the right environment for the bugs to set up shop. If you do have a viral infection, strengthening your immune system and overall health through diet and lifestyle changes will go a long way towards recovery.

    I’m not familiar with the Buhner protocol but my gut reaction is to refrain from treating something you may or may not have. However, if it’s innocuous and generally good for your health, it’s a personal choice and may be helpful. If you suspect your problem may be related to Lyme or one of its coinfections, you might want to check out the ILADs (International Lyme and Associated Diseases Society) website to locate a more experienced, reputable LLMD in your area for further testing. Hopefully, the rheumatologist will do a thorough evaluation and rule out autoimmune disease. If both Lyme and AI Disease are dead ends, revisiting the viral suspects may help.

    I’ve never used aloe vera for knee inflammation but I will try it next time I push myself too far. Interesting, because it works well as an anti-inflammatory for superficial burns so I’m curious to see if it will help deeper inflammation.

    Best of luck with rheumatology and additional testing. Please let us know if anything turns up.

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #458896
    mscarver
    Participant

    I have been diagnosed with sero neg ra by a rheumy and mayo clinic as well as severe osteoarthritis in all my joints..I have had issues for many years and my joints and spine are really bad..back in Oct of 2016 i for the first time started having my knees turn red and get red hot and swell…
    I had a tick panel run and my igg was positive but not the igm.. was treated for like 10 days with doxy..retested and was all normal
    I just had Bilateral hip Jan 25th 2017 and at the end of feb my knees and started again but this time it starts at the knees and goes down to my feet not only are they red and hot but they swell and sometimes alot!!!!Ortho says it has nothing to do with the surgery..I made them do another tick panel.. it came back with the same results as the on in oct yet they called me and said it had came back fine.. so no treatment.. I had to go see my ortho again he put me on prednisone and it has not taken it away.I have been in this so called flare since Feb 26th ..Ive got to find a doctor to take this seriously.. My foot hurts to walk on it and my one knees is acting up ..I wonder if im not sero neg for lyme ive been tested for stuff since 2002 and they never find anything in my blood work ever. Ive suffered with bad headaches body and joint pain..im only 45 and am looking to hve to have more joints repaired or replaced because what ever i have it is hitting my joints hard….

    #466378
    jkm
    Participant

    Hi Zach,
    I know this thread is a few years old now, but my story and symptoms seem so very similar to yours, and I’m curious if you’ve found any answers since this post? My knees turn red and hot and I can’t figure out why. It’s been happening for 18 months. Heat, for sure is a trigger. And many foods. Though the frequency of flares has decreased since taking out gluten, dairy, & grains, but still occur seemingly randomly. Mostly at night, though they will flare everyday after shower, if I’m in the sun (sometimes), and when I am under stress. I have been able to go a few weeks at a time without any major flare, but they still come and it’s so discouraging.

    I’ve been in treatment with an LLMD for about a year now, after dead-ends with Rheumatologist, MRIs, Ortho, PT, etc.

    Just wanted to check in to see if you had any updates or insight. Hope you have found some answers.
    JK

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