Lyme & Autoimmune Disease

[Jayjenk07]

I will try and spare you the long story. Just trying to see if anyone else has anything that has helped them or any words of encouragement. I’m 27 years old and have had a whirlwind of health issues. Started from getting a bunch of swollen lymph nodes removed and biopsied, to being bed ridden anytime i wasn’t at work, forgetting simple words not being able to put sentences together. Tried to convince myself everything was in my mind for years after simple tests at the doctor didn’t give much of an answer. Eventually got to the point I could barely walk and was in an insane amount of pain. I had lost a ridiculous amount of weight without trying. My supervisor finally pulled me aside and told me “something is wrong. Please go home, find a doctor to figure out what is wrong with you. You can’t keep pretending you’re ok.” Eventually once I wasn’t even able to make it to my car anymore, I listened. I Was diagnosed with several auto immune diseases as well as found out I had Lyme disease. I had a picc line in and got treatment. Now that the picc is out and that part of treatment is done, I still feel half alive/in pain. And almost useless.

My question is, has anyone had anything similar and found anything that has worked for them? I want to get back to riding but it feels like such a struggle to even make it out to my trainer by the end of the day I have been scared to even schedule anything. Has anyone found a lot of healing in just forcing yourself to go and ride? I’m hoping that if i push myself to go that maybe it will help wake my brain up a bit and help me out. Anyone have any suggestions or anything that has helped them healthwise? I’m starting to feel desperate.

[Libby2563]

Ugh, so sorry to hear about your struggles. I would not force myself to ride unless it made me feel better emotionally or the movement helped me physically. If you are still feeling that awful, I think you need more treatment and more time rather than “forcing” yourself to do anything.

If you really want some horse time, can you just go groom or maybe take a calm horse for no-pressure trail rides, with a friend along for safety?

I also have Lyme disease and though my symptoms were never as bad as yours, I understand the frustration of not knowing what is going on. Most doctors do not have a good understanding of it. Are you seeing really good doctors who specialize in Lyme and your autoimmune diseases? After two years of being on antibiotics almost non-stop and not really progressing, I went to the Jemsek clinic (www.jemsekspecialty.com) and I am doing much, much better now and only on antibiotics 3 days a month. It is in DC but they do have patients who come from all over the world and you can do some appointments by phone. Or maybe they could work with your local doctors.

[Barn_Mom]

I am so very sorry for what you are going through! Big, soft, gentle hugs to you! Be patient with yourself and push yourself when you can. You might realize that you can do more than you think you can! I totally understand!

Maybe mention what you are dealing with and your hesitation to schedule anything to your trainer? Maybe you could set up an open schedule to just go out and groom? Once you can get into a rhythm with that, you might feel better about scheduling. Or maybe you could sort of loosely plan on lessons and confirm the day of based on how you are feeling?

Autoimmune issues totally blow chunks!

Without knowing what your other auto-immune diagnoses are, I would say to pursue treatment for all of them…which you are probably doing already. I have RA and have had it since just before my 21st birthday - longer than you are old! (That’s kind of a weird revelation!) Even though my RA is under control, thanks to biologics, my energy levels are always low. It’s been explained as my immune system is still running in high gear in the background. I have found that when I push myself to at least show up and go through the motions, so to speak, I can do more than I thought I could. And a change of scenery can be so energizing! I remember my former wackadoo sister in law once said something (smart) about energy begetting energy…it’s true, the challenge is that you have to pace yourself, while trying to figure out your limits. Easier said than done, but you will figure it out!

I rode a bit as a kid and then essentially raised my daughter at the same barn from my childhood. So, I lived vicariously through my daughter and longed for the day when I thought that I could get on a horse without having to take the next day off from life. I probably could have much sooner than I did, but my daughter finally called my bluff 3 years ago. It’s so empowering to do something I was so afraid that I couldn’t do! Oddly enough, it doesn’t much bother my joints! My muscles are another story! And while riding does make me tired, it’s usually a good tired.

Best of luck to you, and please keep us posted on your progress! It’ll take some time, and it might be a struggle, but you’ve got this!

[Marshfield]

I’m in one of the hotbed areas for Lyme. Chaga tea is reported by many to help

[tbchick84]

Have you tried Monolaurin? I recently had a Lyme flareup from a long standing chronic condition that never bothered me much other than being tired a lot. This particular flareup had me hurting all over, limbs numb and tingling and brain fog like nothing I’d ever experienced. Doctors were useless. Since the CDC does not recognized chronic Lyme as a condition, they are not allowed to treat it. I did a little self research and stumbled upon the Monolaurin. I took it for a few weeks and things started to normalize. I still have a little brain fog, but all the other symptoms were gone in a month.

As for the rest of your issues, have you tried juicing? I’m talking stuffing kale, carrots, beets, celery, cucumbers, etc into a juicer and drinking them, not fruit smoothies or otherwise bottled stuff. Drinking veggies in their pure form gives your body tremendous power to heal itself. Nothing has made me feel better. If you need more convincing and have Netflix, watch the documentary “Fat, Sick and Nearly Dead” as well as the part 2 episode. While it does not pertain to your exact illness, it has many good insights along the way for why juicing is so good for you.

[Jayjenk07]

@Libby2563

Ugh, so sorry to hear about your struggles. I would not force myself to ride unless it made me feel better emotionally or the movement helped me physically. If you are still feeling that awful, I think you need more treatment and more time rather than “forcing” yourself to do anything.

If you really want some horse time, can you just go groom or maybe take a calm horse for no-pressure trail rides, with a friend along for safety?

I also have Lyme disease and though my symptoms were never as bad as yours, I understand the frustration of not knowing what is going on. Most doctors do not have a good understanding of it. Are you seeing really good doctors who specialize in Lyme and your autoimmune diseases? After two years of being on antibiotics almost non-stop and not really progressing, I went to the Jemsek clinic (www.jemsekspecialty.com) and I am doing much, much better now and only on antibiotics 3 days a month. It is in DC but they do have patients who come from all over the world and you can do some appointments by phone. Or maybe they could work with your local doctors.

I miss riding, it made me extremely happy. So I think I will definitely do that take it step by step to try and get my feet wet to get back into it. I’m so sorry to hear you have this illness as well. 3 days a month is AMAZING, i’m extremely happy for you. That definitely gives me hope. Did it take a long time to get to where you are at? I have heard of jemsek clinic many times, and have heard good things. I had hoped that I could find a really good doctor here in florida. Which I have been going to one who specializes and I had heard many good things about. But i’m getting very discouraged because my fiance and I have spent an insane amount of money for very little progress at this clinic. I’m going to see about calling jemsek today and see what options they have. But thank you for reaching out, it definitelly gives me hope.

-Barn Mom, I really needed to hear that. Over a year ago I wasn’t doing that great and my physical therapist told me not to do anything very physical. But I was going crazy sitting inside my house and eventually I forced myself into a gym just to walk the first day. Music really helped. And I got much better then I had in awhile just doing things like that. And had more energy and was in a much more positive place. And eventually was doing a lot of cardio and weight lifting. Somehow along the way I completely forgot about that until your comments. Even change of atmosphere helped. This time around I just felt like I got kicked to the ground and have barely gotten out of the house. I do believe change of scenery is good and “energy begetting energy.” I’m just going to have to get out there and play it by ear, I tihnk my mind sometimes plays it a bit too safe on what i think i can do. So it’ll be trial & error. RA was one of the autoimmune diseases that I had been diagnosed with (unknown if it;s really RA or Lyme Arthritis). I had been wanting to ask someone else with it if riding really bothered their joints with that disease? It’s nice to hear that other people have been able to push through the fear of the next day and find out that actually getting back out there helped.

-tbchick84, I had never even heard of monolaurin. Those are some of the exact same symptoms I have dealt with. A lot of what I looked up about monolaurin sounds amazing. Is there a specific kind thats good to get?? I actually got a juicer a few years ago and did juice and it did make me feel quite a bit better. Somewhere along the way I got caught up in life and juicing slowly trickled out of my daily routine. And then doctors claimed juicing wasn’t all that great, but honestly all the “detoxes” or “diets” they put me on to detox my system has just made me feel miserable. So I think it is worth a shot again.

[Libby2563]

@Jayjenk07

I miss riding, it made me extremely happy. So I think I will definitely do that take it step by step to try and get my feet wet to get back into it. I’m so sorry to hear you have this illness as well. 3 days a month is AMAZING, i’m extremely happy for you. That definitely gives me hope. Did it take a long time to get to where you are at? I have heard of jemsek clinic many times, and have heard good things. I had hoped that I could find a really good doctor here in florida. Which I have been going to one who specializes and I had heard many good things about. But i’m getting very discouraged because my fiance and I have spent an insane amount of money for very little progress at this clinic. I’m going to see about calling jemsek today and see what options they have. But thank you for reaching out, it definitelly gives me hope.

I feel your pain! The flare-up that caused me to figure out my diagnosis happened about this time of year back in 2014 so it’s been 4 years now. I couldn’t ride for a month and missed 10 days of work in 3 weeks, that’s how crappy I felt. I too spent a lot of money at that first clinic for no real results. I was a patient for 2 years and still had to take antibiotics every day. They sold me expensive supplements and herbals that I doubt did much of anything (thank goodness for my tax-deferred Health Savings Account, that helped a little!). When the doctor started suggesting homeopathics, it helped push me to reconsider Jemsek even though this place was more affordable and much more convenient (no offense to anyone who believes in homeopathy, the science just does not make sense to me, and the lack of progress overall was plenty of reason in itself anyway).

I’m so glad I switched to Jemsek! My appointments have been pretty spread out, which helps with finances. I think I have had 5 appointments over almost 2 years. You do bloodwork at a local lab in between appointments and they check that to make sure you’re handling the antibiotics well. Since I’m doing well now the interval last time was 6 months and next time I believe it will be a year. I am spending less money on my medications and appointments every year, yay!

As far as downsides, you don’t see Dr. Jemsek himself every time but supposedly he guides the protocol. Also it can be hard to get ahold of a live person there is you do need something like a prescription refill or have a question. There’s a phone tree you have to go through for literally everything, or you can use the online patient portal. Also since you’re long-distance, check your insurance coverage for phone appointments! I did do one phone appointment and afterwards discovered that my health insurance will not reimburse for phone appointments with PA’s, so that ended up not being worth the time savings.

The Jemsek Clinic also treated my niece who had neurological Lyme as a middle schooler and is doing great now. She had previously seen a well-regarded infectious disease specialist who did not help her much either.

Good luck! I don’t mean this to sound like an advertisement for Jemsek but they have helped me where others failed. I really hope you can find a solution for you!!

[jasola89]

Lyme disease is horrible. I knew someone who took months to recover from it. Hope your recovery is smoother

[hfa86]

I have a somewhat similiar history but undiagnosed for some time coupled with an autoimmune disorder that causes connective tissue issues and neuromuscular challenges. I know the evidence out there is not the greatest and being a researcher myself, I was quite skeptical, but after many internal related issues I began working with an MD that combines both western and eastern medicine approaches. The biggest change for me has been diet with removal of grains, dairy, soy (and of course no other processed foods). The primary reason was to impact internal needs, however, my entire body from a physical standpoint is feeling better that it has in years, I am no longer in pain, and I feel that my cognitive capacities have improved with reduction of “brain fog.” Of course I am incorporating a variety of other approaches and medications but the change in the past few months is well worth it.

[Libby2563]

@hfa86

The biggest change for me has been diet with removal of grains, dairy, soy (and of course no other processed foods). The primary reason was to impact internal needs, however, my entire body from a physical standpoint is feeling better that it has in years, I am no longer in pain, and I feel that my cognitive capacities have improved with reduction of “brain fog.”

I forgot to mention, one of the first things Jemsek recommended was to eliminate gluten and cut down on sugar. I literally almost cried. But I stopped eating gluten and within 3 days the low-level back stiffness that I thought was just me, because it had been there for so long, was gone. I also was getting back sore for a couple days after jumping lessons (hadn’t jumped in a few years at the time so I assumed it was just muscular) and that stopped overnight as well. It was crazy. After about a year of not eating gluten except for the occasional cheat, I was able to eat it again without as much trouble. My understanding is that it can accentuate inflammation. The fact that I can eat it again confirms to me that my treatment is working.