lymeoutlyndsey

My journey through Lyme Disease- Healing my body and mind.

Dr. Smith Update and Silly Feet

on November 2, 2013

It’s been 6 weeks since my treatment in Idaho with Dr. Tony Smith and I know many of you have been asking how I am doing, so I thought I would give you an update. Before I go on, there are two important things that you should know about my treatment with Dr. Smith and why it has not gone the way that things usually go.

First: I am still on intense antibiotic therapy. Before going to see Dr. Smith, I had been on antibiotic therapy for nearly a year and a half. During that time, I made huge gains in recovery and I was not willing to risk losing that by going off of antibiotics. Dr. Smith has told me that I am his first patient to refuse to go off of antibiotic therapy following his treatment. He doesn’t know what to expect or how that will effect the outcome of his treatment. Antibiotic therapy is not effective for some people, but it has been hugely effective for me, so I plan to remain on antibiotics until my symptoms are gone. For folks who can’t tolerate antibiotic therapy, Dr. Smith’s treatment is ideal and if you go see him, I would love to know how things go for you.

Second: I have a co-infection called Protomyxzoa Rheumatica (herein referred to as PR). PR is a newly discovered protozoal infection (similar to Malaria) that complicates my treatment. To read more about PR, go here. Dr. Smith has recently started studying how he can treat PR during the Lyme treatments and he attempted to treat me while I was there. However, I got an email from him a couple of weeks ago saying that the method he was using to treat PR was not correct, but that he has it figured out now and wants me to come back for free treatment as soon as possible. He doesn’t think my treatment outcome will be ideal until I can come back and have PR treated correctly. I really appreciate the personal email that I received from Dr. Smith, but what I appreciate more is that he is willing to openly admit that he was wrong and offer to try again for FREE. How many practitioners have you heard admit to being wrong and willing to try again? I really respect that about Dr. Smith. He believes in what he does and he truly wants to see folks get well. Thanks Dr. Smith! I am going to try to make it back to his office for a quick visit in December.

So, considering both of those things, I don’t think it’s fair for me to report on the success of his treatments without receiving full and proper treatment. I will report back about 6 weeks after my final appointment in December. Until then, my journey with antibiotic therapy continues!

Moving on now, let’s talk about feet! I have struggled quite a bit with my feet recently. Currently, my toes look like this:

toes

Before I started antibiotic therapy, I had two toes on my left foot that would occasionally swell, burn, and get little red dots on them. I found no doctor that could explain this mystery other than diagnosing me with Raynaud’s. My feet go from being hot, red, and swollen to being freezing cold and turning purple. Sometimes they are hot AND purple. The little red dots become sore and eventually “bleed” into each other and become red blobs. My feet hurt to stand on in the morning, they swell with activity or heat, and sometimes I have sharp nerve stings in my toes. My doctor thinks that my feet issues are related to my co-infection, Bartonella. Lately, my feet have gotten much worse. Instead of the problem being two toes on my left foot, it’s now all toes on both feet. Considering this, I called my doctor. She is certain that it is Bartonella and put me on yet another gnarly antibiotic. This time, Bactrim. I am currently on Plaquenil, Minocycline, and Bactrim. Ugh. My boor body.

I have a couple of my own theories about my feet. My first theory has to do with the above-mentioned Protomyxzoa Rheumatica (PR). According to Dr. Fry, the doctor currrently performing the research on PR, the organism infects blood and behaves much like malaria. I have significant amounts of biofilm in my blood from this organism. I think it has decided that my feet are great places to live for some reason and it is damaging the blood vessels in my feet, leading to burst blood vessels in my toes (the little red dots) that then bleed into red blobs. That’s the first theory.

My second theory is one that may be hard to grasp for some, but it makes the most sense to me. My second theory is that the damaged vasculature in my feet is from damage to my sympathetic nervous system. Your sympathetic nervous system can cause random vasoconstriction and vasodilation that would explain the sudden and random temperature and color changes and burst blood vessels in my feet. It feels like a response of my nervous system to me. Also, something else interesting is that when I have a particularly intense session with my somatic psychotherapist, my foot or feet will swell, get hot, turn red, and burn. Sure, it could be that the emotional stress of those sessions aggravate infection in my feet. But, my point is, whatever is going on in my body, is sometimes (maybe always?) directly effected by my thoughts and emotions, subconscious or not. This is a difficult concept for some, but my experience with chronic illnesses has shown me that there for sure is a connection. It doesn’t mean that working through your “issues” will cure your body of infection without antibiotics, but we can no longer deny that there is a link, even if it is subtle at times.

Has anyone else had experience with feet that look or behave like mine?


41 responses to “Dr. Smith Update and Silly Feet

  1. Tammy says:

    Love you lots! I learn from your journey.

  2. jeanvieve7 says:

    Wow, you are going through overwhelming circumstances. I hope you get some more answers and real progress soon

    • lilneeds says:

      Thanks! It sounds bad, but I’m not doing all that bad, really. I am still active and smiling (for the most part). It’s definitely frustrating and I still have pretty bad days, but overall, I’m doing pretty good. I’m thankful for the health I DO have. 🙂

  3. dawnhosking says:

    Good to have an update, wishing you well and hope you are feeling OK xx

    • lilneeds says:

      Thanks Dawn! Today was a good day! Feet are getting better after starting Bactrim. I spent some time on the beach today walking barefoot and it was wonderful. 🙂

  4. Kiki says:

    Hi Lyndsey, I hadn’t realized that you posted an update regarding your treatment with Smith. I hadn’t checked my e-mail in a week or so. Thank you for the update and I’m sorry your having a difficult time. As far as your feet goes with the CNS (central nervous system) I believe that lyme and the co-infections effect the CNS. Both sympathetic nervous system and parasympathetic nervous system. I believe it’s effected mine a great deal. It makes sense to me that stress, thoughts and emotions effect the CNS. For several reasons I believe this. One of them is because our CNS is the center of our whole body. CNS is vital to our health. So that makes sense to me. I am so glad you are going to see Smith again. I’ve only seen him briefly and chatted with him briefly….I like what I’ve seen and heard. His approach, how he handles his practice, his patients and the fact that he e-mailed you to explain he’s got it figured out. I hope you feel better soon. I have had my feet hurt but I don’t think to the extent you have right now. I hope you have relief soon!

    • lilneeds says:

      Thanks Kiki! My doctor put me on a new antibiotic (Bactrim) and the issue in my feet cleared right up. So, no more swollen, sore, and spotted feet for now. What a crazy bug!

      • Kiki says:

        Lyndsay, Oh good! I bet that was a big relief. I’m glad the Bactrim works. I like Bactrim for my Bladder infections. Works pretty good for me most of the time. Glad you are feeling better!

  5. Lori says:

    So sorry you are having the problems with your feet! But I’m glad you are finding some relief.

    I look forward to your future posts about Dr. Smith and how you’re doing as I first saw him in Dec. and am headed back for a check-up in March.

    • lilneeds says:

      I am excited to see how I do after my final treatment with Dr. Smith as well. I will probably go see him again for my parasite treatment in a couple of weeks. Then, a few months after that, I should have a real opinion on his treatment. So far, so good even without the additional treatment that he recommended (for free).

  6. Heather says:

    I get the freezing cold purple to burning hot red thing. The first time my toes did the burning hot red stinging thing I thought it was even a chemical burn, wasnt sure what to think of it. Ever since what I think happened is I just have poor circulation and ended up with frost bite at one point and it left me with weird blotches that look somewhat scar like on the tops of my toes. And maybe once you get frost bite there is damage and you are more susceptible? Idk. But my toes are freezing as I type this lol

    • lilneeds says:

      Blech! Sorry you’re in the strange feet club, Heather. Luckily, my feet have nearly stopped doing this. I started putting CellFood cream on my feet twice a day and they stopped. Unless I am herxing really bad, it comes back a bit, but for the most part, it’s gone. Hooray!!!

  7. Aviva says:

    How are you feeling now? Interested in seeing Dr. Smith. Would love an update!

    • lilneeds says:

      Hi Aviva-
      I am feeling pretty good now. Still having some struggles, but definitely making progress. I am seeing Dr. Smith again April 21st. After my next treatment with him, I will post an update with a more firm opinion on what I think of his treatment. For now, though, I think everybody should give it a shot before you start antibiotic therapy. The cost and the risk are so minimal to see Dr. Smith that it is worth it. Also, I have sent several folks there now who are doing really well after his treatment. You should go! Let me know what you decide and keep me updated on your progress! If you follow my blog, I will definitely be posting a Dr. Smith update next month. Wishing you the best! ❤

      • Aviva says:

        Thank you so much for your response! I think I will definitely go! I will definitely keep up to date with your blog!

  8. Anne says:

    Can you give an update on the results from your last treatment with Dr. Smith (April 21st) and elaborate on how your friends got better from his treatments. My family may be taking a vacation in Coeur d’Alene this summer and I am thinking of seeing him for treatment. I, too, am taking antibiotics for Lyme and don’t intend to go off the if I do see him. I am just wondering if you notice any benefit from the treatment for you…

    Thanks so much!

    • lilneeds says:

      Hi Anne-
      It’s really difficult for me to tell what has helped me, since I am doing so many things at once. But, I have noticed that about two months after treatment with Dr. Smith, I seem to turn a corner in a positive direction. After the first time I saw him, my brain fog cleared nearly completely and never came back on such an intense level. Also, I have noticed that after seeing Dr. Smith, it is MUCH more difficult for me to tolerate my antibiotic therapy. I become too toxic. Those things seem to indicate that what he does has an effect. If you’re already going to be there, I would definitely go see him! Does that help? Best of luck to you!

  9. My son John just saw Dr Smith this past week and he is improving with leaps and bounds. He was diagnosed with schizophrenia a little over a year ago but come to find out he has chronic lyme disease. Long story short, we found out about Dr Smith, raised money to go, went and got treatment, got better! John is still on the meds for mental disorder but slowly coming off them so progress will take some time. After 2 days of the treatments by Dr Smith he was “feeling better in his head” and his joints were feeling much better. Unbelievable! Im so excited and fascinated by the magnetic therapy Dr Smith has introduced to us lymers. I know it works for a fact and I recommend it to anyone with lyme. No anti-biotics, no long term nasty drugs that don’t help, and no more pain. I am a testimony that Dr Smiths treatment works. As a personal note to lymeoutlyndsey: thank you for your help! I cant thank you enough!

    • lilneeds says:

      I am SO happy that you are seeing some progress! There are many people asking about Dr. Smith and if his treatment is effective, so thank you for sharing your story! I hope you continue to see improvement as the months go by.

  10. Claudine says:

    Hi. I just came across this thread. I’ve been diagnosed with Chronic fatigue syndrome and erythromelalgia ( red hot burning feet) the feet are getting worse. I get a chemical type burning feel. I suspect I may have bartonella but I’ve read that Bart mostly bleats up in it’s own. I’ve been ill for three years. I can’t work. I’m interested in this antibiotic you’ve taken and the cell food cream. I take cell good drops but never tried he creams.

    Are your feet completely healed?
    My feet flare when stressed, when I get hot or exercise. Did yours do this?

    I live in the UK so I don’t know who Dr Smith is. Is he based in the US?

    Thanks. 🙂

    • lilneeds says:

      Hi! My feet are nearly completely healed. They do flare if I switch antibiotics and have new die-off. I haven’t gotten the red dots or severe burning sensation in over 6 months. Cell food cream is made by the same company as cell food drops. Try ordering online. Dr. Smith is based in the US in Idaho. You can see his website here: http://www.lymestop.com. My feet did flare when I was stressed or exercised. They still do slightly, but NOTHING like they used to. I will still have some occasional swelling and occasional very mild burning, though my improvement has been tremendous! You are one of the first people who has described such similar symptoms in your feet. I hope you find something that works for you!

      • Claudine says:

        Thanks for your reply. I’ve been on doxycycline but that doesn’t seem to do anything to help my feet. Did you find that bactrim was the only one to help? I still don’t understand why Lyme would cause red burning feet. It’s very painful sometimes. Elevating my feet does help but the do flare if I do any kind of exercise or if I get hot. I just don’t see many people suffering from this symptom who have Lyme so I’m struggling to find a connection unless the Lyme has triggered something else?

        I really wish Dr Smith was in the UK. I’ll have to find someone who offers treatment like him.

        I might try cellfood cream. I’ll try anything to get my feet back to normal!

      • lilneeds says:

        I also did frequent epsom salt soaks for my feet. Honestly, I have no idea what caused the craziness in my feet. My doctor seemed to think it was protomyxzoa rheumatica and not the Lyme bacteria (read above). When my feet were at their worst, they would also flare with a lot of food, like red meat and pork. I have a feeling I will never know why I had/have this symptom. You are the very first person that I have talked to that has described something similar. I wish we had answers! I have no idea what ended up helping my feet, because I have been on lots of different antibiotics. Over time through treatment, they just got better. Look for a practitioner that does magnetic therapy in your area. That is what Dr. Smith does. Wishing you the best!

  11. S.A.C. says:

    Hi. Stumbled upon this post and wanted to let you know that what you have on your toes are called chilblains. They’re damaged blood vessels caused by exposure to cold. I get them, and like you I have Raynaud’s. (I do not have Lyme disease or any other health condition.) I started to get chilblains when I got a dog and suddenly was outside playing and walking in the snow more than in previous years. They come on in early winter, annoy me for a few months, then disappear when the weather warms up in the spring. As far as I know they’re only troublesome if the skin breaks and they become infected, but this has not happened to me. Mine look like yours; minor and irritating.

    Hope this eases some of your worry.

    • lilneeds says:

      Thank you! I have suspected that the red dots are burst blood vessels. However, I get these year round. Not just in the cold months. Are there people you know that it happens to no matter what the temperature? Also, it is accompanied by swelling, burning, and stinging. Do you have those symptoms, too?

  12. […] pain with numbness and tingling. However, something than remains is occasional flaring in my feet (described here), ringing in my ears, and exhaustion from activity. Now, when I say exhaustion from activity, I […]

  13. for the past 8 or 9 months I have little red dots on the second toe of both feet. After a certain amount of time they burst open and bleed but every time I mention them to my dr. they aren’t there. Now they are back on my left foot I have taken pictures of it to show my dr. It hurts to walk on my feet with them.

  14. msdee633 says:

    Don’t have Lyme disease or the other one u mentioned. But I now have docomented pictures to show my dr. Maybe we can figure this out

    • lilneeds says:

      Thank you for sharing! I think you’re probably right. It has mostly resolved but still flares now and then, unfortunately. I likely need more antibiotic therapy, but can’t afford it at this point. Hoping herbs will do the trick.

  15. Robin St. Pierre says:

    Hello i am robin i am currently have the same problem with my feet did your doctor ever confirm its diagnosis? My doctor told me im dehydrated. Im upset with it cuz i get home to soak my feet and i noticed the red dots. Now, ive had hand foot mouth thice last yr. It feels much like that. I look forward to hearing from u thank you.
    Robin St. Pierre

  16. Marla says:

    I have had this happen to my toes too. Those little dots hurt like beck, mostly at the tops of the toes

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