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A Positive Change? (Erythromelalgia)


So over the past 2 weeks or so, for some reason that we have not figured out, there has been an actual improvement in Tracey's symptoms. She is still in bed most of the day, but she has actually been having fewer flares each day.

So because of this slight improvement, we are trying to figure out what we have done differently over the past few weeks. Looking back we have actually changed a few things and do have a few ideas of what may be helping. Yes it could be complete randomness causing the improvement, but for tracking sake, here is what we have changed and were hoping is actually helping.

Picture By Chiot's Run
1. No Vinegar - this may seem strange but Tracey used to consume a ton of Vinegar, she put it on everything. And after reading the PH Diet, it was one of the things to eliminate. Now while we have not completely enacted the PH diet, we are trying to do at least some of it. So maybe the elimination of Vinegar is helping her bodies over all PH levels which is a reason for the improvement.


2. Giving Up Most Fruit - Again sounds strange, but this is another part of the PH Diet, and it eliminates these natural sugars from her diet, along with the fact that we already eliminated all processed sugars. She does use Stevia in things like homemade lemonade and such and it does not include all fruit. Things like lemons and limes have not been eliminated. 

3. Colloidal Silver - Yes many (including us) are skeptical to say the least about this, but hey desperation makes you try things so we decided to start with a topical spray version and what do you know, we've seen not only improvement in the number of flares but the over all condition of the skin also looks better. The wounds on her feet are actually healing.

Picture By RGerendasy

4. No Goat Dairy - She gave up cow's dairy way back in February and switched to only goat dairy products, well in the last few weeks we eliminated all dairy and have seen the improvements mentioned above.

Picture by Sheep purple

5. Antibiotics - She has been on Antibiotics for Chronic Lyme for months now and we were not sure if they were really doing anything, and then she went off them for a few days and got really bad, so she went back on them, along with all the other switches on this list and whammo, improvement. Are the antibiotics starting to work...is the lyme being beaten back? Or is is something else on the list...

Picture By Zanthia
6. My boss randomly mentioned that maybe it had something to do with some kind of weather change, which made me wonder if atmospheric pressures or something else in the way the weather works could be another reason. It is possible, but since Tracey got this over a year ago the weather has changed so much that who knows.
Picture By bradlauster
7. Oatmeal - This may be the strangest possibility, but right before this change she had a day where her legs were very itchy, so she took the equivalent of a thick oatmeal bath (has been said to help itchiness from things like poison ivy). I am doubting this is the reason but I wanted to make sure I recorded everything that could be helping.

As you can see we changed quite a bit all at once but whatever it is, the last few weeks have seen positive change...I just hope it continues. 

So there you go, a slight improvement in the EM symptoms. What do you think, anyone tried any of these, have they helped you? 

Comments

  1. Hi Matt,

    I also suffer from erythromelagia and I read your description of various treatments for your wife. Below are some things that I have done that have seen positive results - perhaps your wife can benefit:

    One thing that I have noticed which had an immediate positive effect was the reduction of sodium in my diet. I've noticed that my symptoms worsened after a high sodium meal, so simply reversed the concept and saw immediate improvement. Also, there is some current research that ties EM with the sodium channel "nAV 1.7" in a certain pain receptor that may be responsible for the hyper excitability of pain detection in EM sufferers. This may also explain why a low-sodium diet seems to help some people, including me.

    I also do a fair amount of meditation during the day, which can help calm my body down to some degree. I also try to avoid stimulating foods, such as caffeine, high sugars and alcohol. I have also found that aspirin helps - taking a simple chewable "baby" aspirin - 81 mg at a time up to four times per day per my doctor. It seems to also produce a calming effect.

    Weather changes also affect pain levels - unfortunately there is not much you can do about the weather other than move to a place that has milder weather.

    Hope some of this helps your wife.

    Don

    ReplyDelete
  2. Hi Don,

    Thanks for the comment. Any way you can tell me where that research into low sodium is? My wife actually has very low sodium thanks to one of the pills that she is on and has been instructed to eat it, but believe me if that would help we will try it.

    Regarding what you said about diet, she is currently on basically a Vegan diet that is no sugar (processed or fake, stevia is OK), drinks no alcohol
    or caffeine and we also have noticed that it helps at least somewhat (when she does cheat on this diet it is very noticeable).

    She tried baby aspirine early on with no noticeable change, however, her DR is considering a higher dose to try again soon.

    We have wondered about weather and it makes sense that it would affect it. Have you noticed what weather seems to make it better or worse?

    Feel free to email me at matt@project-matt.com if you want to discuss further, I am always looking for as many people as possible to collaborate ideas to help out my wife and others suffering with this.

    Thanks for the input!
    Matt

    ReplyDelete
  3. Hi Matt,

    I read Tracy's blog (just found it a month ago) and then found yours, while trying to find blogs about people trying to deal with chronic and sometimes debilitating illnesses. But I had no idea Tracy had Lyme disease! The entire reason I was searching is that I have chronic Lyme disease. I would hope (although I have no idea) that treating the Lyme disease would help, as my lyme disease caused a lot of neurological problems, including burning in my extremities (not like Tracy's, but still..). Keep on fighting!

    ReplyDelete
  4. Yes, we think that one of the possible causes is lyme, however, with Chronic Lyme, you're never really sure. She has been being treated for a while now and it does not appear to be making much difference, so...it may not be, but it still may be...which as you can probably tell is one of the things that makes this condition very frustrating. Thanks for the comment and we plan to keep fighting!

    ReplyDelete
  5. Matt, I was just diagnosed as recently as last week..... the past year has been hell. I first noticed this prob when I was a teenager but it went away & has chosen now to come back. I'm just about to graduate nursing school and am soooo afraid I won't be able to work because I can't even put shoes on! I was treated w/ antibiotics 3 times in the past year as every doctor thought it was a bacterial infection. It cleared up with the antibiotics but would come right back again. I am now trying a vegan diet and a supplement called bromelain which is supposed to help w/ inflammation ( I will let you know how it works)..... so far the only thing that helps me is 400- 800mgs of ibuprofen a day just to take the edge off the pain but no doc has supported me on that. Has your wife tried antifungals w/ any success? I'm willing to do anything to have my life back...... thanks for all your info!

    ReplyDelete
    Replies
    1. Sorry about the delay in my response, I am in the process of moving so I have not had as much time on the blog! She has not tried antifungals and I am not sure if that would do anything, though at this point anything is worth a shot, though I would warn that some things can make it worse so be careful!

      Please let me know how the Bromelain works! My wife went Vegan for a while and it did seem to help the flaring at least somewhat but did not take it away sadly and she started lacking in some other nutrients because of it. We are looking into starting another more intense juice diet after we move and I will keep you posted!

      Delete
  6. Hi matt, when I suffered bouts of bladder infections I was on continous courses of antibiotics, this led to feeling better in my hands and feet, so I was led to believe my symptoms were interrelated. unfortunately once my bladder condition improved the flares continued. I am currently trying Chinese acupuncture as I wake every morning with swollen fingers, feet and face. all my bloods come back negative for autoimmune, but wonder if I have sjogrens as well as em. I am not convinced acupuncture is working yet, but will start the herbs shortly to see if it improves symptoms.

    ReplyDelete
  7. My wife tried acupuncture a few years back for something else and it actually made her worse in that area. Keep us posted on how the herbs work. Thanks!

    ReplyDelete
  8. Hey.... What's the latest update? I have EM and it's slowly getting worse. I'm wondering if it's Lyme disease or co infections. Have you looked into treating co infections of Lyme?

    ReplyDelete
  9. What antibiotics was everyone on? Fluoroquinoline antibiotics such as Cipro and Levaquin can cause EM.

    ReplyDelete

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