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Update & distressed about weight from bartonella

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morningstars
Regular Member
Joined : Apr 2021
Posts : 80
Posted 10/8/2022 7:03 PM (GMT -8)
Hi everyone, it's been probably a few months since I've posted anything and thought I'd just share where I'm at, plus ask for people's experience in regard to weight gain from these infections. I am just so deeply sad that my body does not reflect how I feel or how well I take care of it and need some hope. But I'll get to that later.

Recently I finally started antibiotic treatment targeting bart, since my mast cell activation was doing way better (thanks to cromolyn). I did a blood test through armin and dnaconnexions even though I don't really like dnaconnexions because they don't do internal validation studies, but it's the one my doctor uses and I figured I'd just go with it. Armin came back indeterminate for burgorferi, dna came back with indeterminate for burgdorferi, bartonella bacilliformis (seems unlikely) and positive for borrelia reccurentis. I'm skeptical of these results, however I do think I have some sort of bartonella. I did our regular provincial bartonella test and it came back as reactive but indicating possible past infection (I've never been treated for acute CSD so that's suspicious to me). I did mold testing with a couple levels slightly elevated but nothing my doctor was overly concerned about (treated anyway), I also recently did metals testing and everything looked great. I've never had EBV and didn't react to that test. My doctor has been really impressed so far with all my blood results in general. On paper it seems like I should not have too many hurdles to figure out.

To sum up, treatment has been good. Since gut symptoms have been some of my first symptoms (chronic constipation/bloating) I was a bit concerned about abx, but it's been fine. I had a small herx about 4 days after starting abx (classic low grade fever, chills, etc), and 4 days after upping the abx for the second time. I added in ADP oregano this Thursday and almost immediately had sharp, shooting pains in the soles of my feet for an extended period of time, which is actually the first time that's happened. I get pain in the mornings briefly and can't stand on my feet for very long, but it's usually more of an ache than this type of pain. Very interesting. I also had quite a bit of rage the second day on that. So, all that to say I think I'm targeting the right thing.

However, one puzzle piece that is causing me so much distress is the extra weight I have. I remember when I got sick around 8 years old (a year after we adopted two kittens), I suddenly gained weight and couldn't lose, I developed what I know now is MCAS so I also react to cardio, heck I even react if my yoga is too quick nowadays, I can't breathe; I also developed OCD, separation anxiety, typical PANS symptoms. But it's been a constant battle with my weight since then, and I am telling you my body does not work like other bodies in regard to calories in and out. Just before I had my worsening of health about 3 years ago, I was so frustrated by my inability to lose weight despite restricting food to the point of disordered eating at times, and eating primarily veggies for a long time too (think kale salad for two meals a day), that I began to exercise like crazy even though it made my throat constrict. I got up to running 5k every other day and biking about an hour a day. I gained weight despite restricting food. And then the left side of my body went numb, muscles started twitching, developed sibo, everything went downhill from there. That's the shortened version but basically I'm traumatized from exercising because I feel it stressed my body to the point of the infections taking over and MCAS worsening, and at this point I just don't think it will help.

My TSH has often sat around 2.5, which I know some people still consider a bit high, but it's not unreasonably high. My doctor wants to put me on dessicated thyroid but I just don't know if that's really the issue. I tested again this week and it was actually down to about 2 for the first time ever, so that's alright.

Everywhere I've read says when you treat the right infection your weight should balance out whether you've gained or lost. I know I'm only about six weeks in, but I haven't started rifampin yet and I've heard that can make you gain, and I'm just terrified of gaining. I feel so out of control of my body and when I see pictures of myself I just want to die. Just feeling really low about this and hoped to hear from people who've experienced similar. It just feels like there's a puzzle piece that I'm missing that will allow my body to let go of this weight because it feels like there's a road block stopping up traffic and if I could just figure out how to clear it, things would flow and I might heal easier. I am detoxing but probably could increase that. I haven't herxed too bad so I've definitely been a bit lax with it...but I don't think that's what's preventing the weight loss.
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WalkingbyFaith
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Joined : Aug 2017
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Posted 10/8/2022 8:52 PM (GMT -8)
Leptin resistence is one possibility regarding the weight gain. Shoemaker talks about leptin resistence occurring with CIRS.
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morningstars
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Joined : Apr 2021
Posts : 80
Posted 10/9/2022 2:04 PM (GMT -8)
I have considered that, but I seem to be doing all the things that you're supposed to do to heal that and it's never changed. I also don't overeat.

Do you know if this naturally corrects itself as you treat, if it's being caused by inflammation/TBD?
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saraeli
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Posts : 3229
Posted 10/9/2022 7:08 PM (GMT -8)
I'm sorry you're dealing with this, but glad you are seeing improvement in other areas!

I developed stubborn weight gain while on an SSRI that did not budge for years after discontinuing the med, including over a year of disordered eating and exercise behavior, and a year of gastroparesis making my food intake disturbingly minimal. The extra weight flew off in one month when I treated gut dysbiosis. I had no gut symptoms (other than the gastroparesis) but my LLMD found the dysbiosis with a stool test, and insisted I take an herbal dysbiosis treatment (berberine, artemisinin, olive leaf, wormwood, and black walnut). This may not be the key for you, but I thought I'd mention it, just in case. Good luck!
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morningstars
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Joined : Apr 2021
Posts : 80
Posted 10/11/2022 7:43 PM (GMT -8)
Thanks Saraeli smile I have wondered about the SSRI's they put me on when I was like 8 or 9 (because of the bart/PANS psych symptoms). It all coincided and I don't recall if the weight gain was before or after, but especially with a developing body I've wondered if that influenced things.

Glad to hear you had success with treating dysbiosis. I've been on allicin, oregano, berberine, black walnut, and motility agents in the past for fairly long periods to try and treat sibo but was fairly unsuccessful, probably because of the other infections still being rampant. I have read that bart particularly can slow/stop motility so it's not surprising that with poor motility (even with meds), dysbiosis would be difficult to treat/maintain remission. But it's always worth keeping that stuff in especially while on abx - I'm just hoping once the bacterial load comes down that my gut will start functioning again...and at that point I'll be able to work on gut health and actually get somewhere!
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Garzie
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Joined : May 2017
Posts : 3992
Posted 10/12/2022 5:38 AM (GMT -8)
its not the answer for everyone - but both my partner and i had many gut issues from lyme and bart - and the key for both of us to get those to a manageable level was to switch to a ketogenic diet

especially if the SSRI's have triggered a dysbiosis that drives or predisposes towards weight gain - then this is one option to help reset the gut to a healthier balance - essentially you switch from eating mainly carbs for fuel ( which is also what your gut bacterial like to eat most to tends to feed both SIBO and Dysbiosis) to eating fats for fuel - which feeds the gut bacteria far far less - resulting in more manageable gut symptoms and better gut function.

Gastroparesis is driven by gut nerve damage - which is driven by immune imbalance - which is driven by dysregulated inflammation - which is typically driven my leaky gut etc - so even if you do not have many overt gut symptoms - this approach may well help.

its nearly zero cost - can be self administered - is non-toxic - and has minimal side effects
well worth a try for a month or so

my systemic symptoms as well as my gut symptoms improved when i made this step
in fact my road to recovery only really started after making this change
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MedicalNerd
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Joined : Jun 2019
Posts : 1441
Posted 10/12/2022 6:43 PM (GMT -8)

morningstars said...
Hi everyone, it's been probably a few months since I've posted anything and thought I'd just share where I'm at, plus ask for people's experience in regard to weight gain from these infections. I am just so deeply sad that my body does not reflect how I feel or how well I take care of it and need some hope. But I'll get to that later.

Recently I finally started antibiotic treatment targeting bart, since my mast cell activation was doing way better (thanks to cromolyn). I did a blood test through armin and dnaconnexions even though I don't really like dnaconnexions because they don't do internal validation studies, but it's the one my doctor uses and I figured I'd just go with it. Armin came back indeterminate for burgorferi, dna came back with indeterminate for burgdorferi, bartonella bacilliformis (seems unlikely) and positive for borrelia reccurentis. I'm skeptical of these results, however I do think I have some sort of bartonella. I did our regular provincial bartonella test and it came back as reactive but indicating possible past infection (I've never been treated for acute CSD so that's suspicious to me). I did mold testing with a couple levels slightly elevated but nothing my doctor was overly concerned about (treated anyway), I also recently did metals testing and everything looked great. I've never had EBV and didn't react to that test. My doctor has been really impressed so far with all my blood results in general. On paper it seems like I should not have too many hurdles to figure out.

To sum up, treatment has been good. Since gut symptoms have been some of my first symptoms (chronic constipation/bloating) I was a bit concerned about abx, but it's been fine. I had a small herx about 4 days after starting abx (classic low grade fever, chills, etc), and 4 days after upping the abx for the second time. I added in ADP oregano this Thursday and almost immediately had sharp, shooting pains in the soles of my feet for an extended period of time, which is actually the first time that's happened. I get pain in the mornings briefly and can't stand on my feet for very long, but it's usually more of an ache than this type of pain. Very interesting. I also had quite a bit of rage the second day on that. So, all that to say I think I'm targeting the right thing.

However, one puzzle piece that is causing me so much distress is the extra weight I have. I remember when I got sick around 8 years old (a year after we adopted two kittens), I suddenly gained weight and couldn't lose, I developed what I know now is MCAS so I also react to cardio, heck I even react if my yoga is too quick nowadays, I can't breathe; I also developed OCD, separation anxiety, typical PANS symptoms. But it's been a constant battle with my weight since then, and I am telling you my body does not work like other bodies in regard to calories in and out. Just before I had my worsening of health about 3 years ago, I was so frustrated by my inability to lose weight despite restricting food to the point of disordered eating at times, and eating primarily veggies for a long time too (think kale salad for two meals a day), that I began to exercise like crazy even though it made my throat constrict. I got up to running 5k every other day and biking about an hour a day. I gained weight despite restricting food. And then the left side of my body went numb, muscles started twitching, developed sibo, everything went downhill from there. That's the shortened version but basically I'm traumatized from exercising because I feel it stressed my body to the point of the infections taking over and MCAS worsening, and at this point I just don't think it will help.

My TSH has often sat around 2.5, which I know some people still consider a bit high, but it's not unreasonably high. My doctor wants to put me on dessicated thyroid but I just don't know if that's really the issue. I tested again this week and it was actually down to about 2 for the first time ever, so that's alright.

Everywhere I've read says when you treat the right infection your weight should balance out whether you've gained or lost. I know I'm only about six weeks in, but I haven't started rifampin yet and I've heard that can make you gain, and I'm just terrified of gaining. I feel so out of control of my body and when I see pictures of myself I just want to die. Just feeling really low about this and hoped to hear from people who've experienced similar. It just feels like there's a puzzle piece that I'm missing that will allow my body to let go of this weight because it feels like there's a road block stopping up traffic and if I could just figure out how to clear it, things would flow and I might heal easier. I am detoxing but probably could increase that. I haven't herxed too bad so I've definitely been a bit lax with it...but I don't think that's what's preventing the weight loss.

I lost like 50 lbs to these Infections. Being underweight or overweight feels like hell anyway. My 11 yr old however was bit when he was 5 or 6. I know he has Lyme and I'm so positive he has Bart. He has phsyc symptoms now and pandas. Also he blew up and put on an extra 40 lbs all at once. This was like in a matter of weeks to like 4 months. A huge tummy he has . He went from wearing Levi's slim fit and belts to wearing husky sz jeans now. I was like with lol!!?? It's fine because I've heard many times Bart is a weight gaining culprit. I have Lyme Bart and RMSF which can anorexia I found out so it makes sense. It's made me highly self conscious being 5'7 and weighing like 106 pounds. Stress doesn't help me especially mental health issues loaded on. I'm sure you'll be fine once you aort this all out.
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morningstars
Regular Member
Joined : Apr 2021
Posts : 80
Posted 10/12/2022 11:29 PM (GMT -8)
Garzie - yeah I keep hearing about keto or more meat based diets and have been avoiding trying it because I just feel so hopeless with food I don't want to put the effort in anymore. I was gluten, dairy and mostly sugar free for years and lately I've just been sick of it all I've been eating more normally, still avoid these things but not being strict. But I know that something is obviously up in my gut and maybe giving that a go would work. Meat's also just really expensive and annoying to cook - I have mostly cooked vegetarian for myself for the last 10 years. But yeah, it might be worth it to try for a short time. Thanks!

MedicalNerd - I have heard a similar story from other bart/PANS kids, definitely not an anomaly. Yeah I hope that addressing the bugs will help my body go back to homeostasis but sometimes it just feels so hopeless. Thanks for the encouragement smile
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Garzie
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Joined : May 2017
Posts : 3992
Posted 10/13/2022 5:52 AM (GMT -8)

morningstars said...
Garzie - yeah I keep hearing about keto or more meat based diets and have been avoiding trying it because I just feel so hopeless with food I don't want to put the effort in anymore. I was gluten, dairy and mostly sugar free for years and lately I've just been sick of it all I've been eating more normally, still avoid these things but not being strict. But I know that something is obviously up in my gut and maybe giving that a go would work. Meat's also just really expensive and annoying to cook - I have mostly cooked vegetarian for myself for the last 10 years. But yeah, it might be worth it to try for a short time. Thanks!

yep - its the will that is the issue for most people - but its only really hard to make the change for the first few weeks - after that it just becomes the new normal - not super hard at all - and i now enjoy my food as much as ever

i would say thinking of Keto as a meat based diet is a common misconception - eating keto is really about substituting most carbs for fats - so most of your energy then comes from fat - rather than carbs ( most people in the West rely on carbs for energy ) - the meat intake is roughly the same - maybe just a bit higher.

ref costs - my total grocery bill only went up by 10-20% - so not a big issue on cost at all - roughly the same as a single additional dietary supplement - less than any antibiotics. in that context its a cheap treatment.

eating any whole food diet / making everything from scratch is always going to be more work - but thats manageable also - when i was suffering with more fatigue i just had to get organised
- i made batches of a herbs and beef burger / sausage type thing that lasted 2 weeks at a time - froze them in single portions and that was one of my main breakfast items
- i cooked a large joint every 5-7 days - and that took care of most of my other meat intake needs
the rest is much the same as any healthy person eats - steamed veg, salad etc

so it needn't be labour intensive - and the only way to eat with less effort than this is to eat ready made food - which we al know is not going to help you much.

so i would say give it a go - you very little to lose

there is more info on specifics in some of my other posts on keto / diet - or feel free to ask questions

all the best!
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morningstars
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Joined : Apr 2021
Posts : 80
Posted 10/13/2022 11:25 PM (GMT -8)
Yeah it's crazy I went for so long never ever eating out, making all my own healthy organic meals, and I've just burned out and don't give a crap anymore lol. The other issue is that my MCAS is pretty severe as well as my SIBO, so with all the overlapping low fodmap low histamine etc etc foods it's like a very small amount of things I can eat anyway and complicates any diet. So I basically just allow myself to eat what I can tolerate because that feels healthier than not eating, and generally it's healthy stuff but clearly not doing much for me. Yeah I will probably give it a try in the next little while - thanks for the guidance, I'll look into those other posts smile
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MedicalNerd
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Posted 10/18/2022 7:28 AM (GMT -8)

morningstars said...
Yeah it's crazy I went for so long never ever eating out, making all my own healthy organic meals, and I've just burned out and don't give a crap anymore lol. The other issue is that my MCAS is pretty severe as well as my SIBO, so with all the overlapping low fodmap low histamine etc etc foods it's like a very small amount of things I can eat anyway and complicates any diet. So I basically just allow myself to eat what I can tolerate because that feels healthier than not eating, and generally it's healthy stuff but clearly not doing much for me. Yeah I will probably give it a try in the next little while - thanks for the guidance, I'll look into those other posts smile

I can agree on this. I went from organic making my own meals to not giving a crap and ordering food lots now. I had sibo for years undiagnosed and gotten so tired of the low fodmap diet. My 11 yr old weighs about 8 lbs less than me , because these infections really took a toll on our weights. The only thing that did help my sons weight was cutting pasta, bread and sugar out of his diet oh and especially dairy is a huge no for him. He ate Mc Donald's and was in tears holding his belly saying he felt like crap and didn't want to eat take out anymore. Pears, blueberries, and blackberries have the lease sugar so that's what I try to give him. We do brown rice pasta instead of regular pasta which is starchy. We do oatmilk instead of milk and those helped tremendously. I hope you try some of these and feel better. At this point the diet actually stopped working for my son. I really think it's the Bart and lyme taking over. My mom also has lyme and Bart and has complained about the same exact issues. My mom was thinner but now gained about 40 lbs at once and says she barely eats and is having a hard time. She thinks it's the infections . I do believe it can be hormones as well. Have you ever gotten your estrogen checked or thyroid?
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MedicalNerd
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Posted 10/18/2022 7:30 AM (GMT -8)

morningstars said...
Yeah it's crazy I went for so long never ever eating out, making all my own healthy organic meals, and I've just burned out and don't give a crap anymore lol. The other issue is that my MCAS is pretty severe as well as my SIBO, so with all the overlapping low fodmap low histamine etc etc foods it's like a very small amount of things I can eat anyway and complicates any diet. So I basically just allow myself to eat what I can tolerate because that feels healthier than not eating, and generally it's healthy stuff but clearly not doing much for me. Yeah I will probably give it a try in the next little while - thanks for the guidance, I'll look into those other posts smile

I had sibo for years and rifaximin worked somewhat. I hate to say it but you may want to look into doing a parasite cleanse. This is what I'm looking into doing. Seems like my last resort. When my stomach feels bad my brain feels more bad brainfog etc. When I eat healthy it sometimes doesn't help plus probiotics make me bloated and brain foggy sometimes.
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Girlie
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Posted 10/18/2022 12:21 PM (GMT -8)
“ However, one puzzle piece that is causing me so much distress is the extra weight I have.“

It was the opposite for me - I lost a lot of weight when I first got Lyme disease.
I was so skinny and my muscles were flaccid.

Good news is once I successfully treated Lyme and CO’s I gained the weight back.
I also have quite the bicep muscles now!!

Try not to worry about the weight gain - you will likely lose some lbs once you successfully treat the disease and can focus more on exercise
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Canary63
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Posted 10/18/2022 7:38 PM (GMT -8)
I can only empathize with you. I've also gained a decent amount of weight that I cannot shake. I have weight setting around my upper arms and hips that's never been like that.
I eat very clean, lots of vegetables, grass fed meat, lower carb (squash a few times a week, sweet potato a few times). I have a green apple about once a week.

I noticed that higher histamine foods cause me to swell and look 10 lbs heavier overnight. Stopping them had helped a little, at least with the face looking puffy, but I cannot shake this weight.
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morningstars
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Joined : Apr 2021
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Posted 10/19/2022 1:29 PM (GMT -8)
Medical Nerd: "Have you ever gotten your estrogen checked or thyroid?" yup, and all normal. Thyroid has sat around 2.5 and my doctor is putting me on support while I start rifampin so we'll see if that makes any difference. I know there's some controversy about TSH but 2.5 really isn't that high. I've also been gluten and dairy free for many years which worked at first but no longer seems to make a difference. I've also taken stuff for parasites sad

Girlie: exercise was part of what put me into this mess. I was so angry that I couldn't lose weight, I was biking hard for an hour a day, jogging about 5km every other day (despite my then-mild mcas still causing bronchoconstriction with cardio), eating healthy and reasonably, and after a few months (while I still wasn't losing, in fact was gaining) the left side of my body went numb and weak, I started getting all these symptoms of motor neuron disease and they had to rule out MS/ALS. Also got neck pain every time I rode my bike which I've now linked to MCAS loosening my connective tissue (eventually I got excruciating neck pain with even the smallest of things like walking around the block, I was bed bound for two years and as my mast cells have stabilized so has my neck). That's when I found out about bartonella, I think I pushed my body so hard that it allowed bart to take over and my MCAS got out of control. So yeah I definitely could get back into some exercise and hope I can some day, but I'm basically traumatized from it. But thanks for the kind words, I hope that things will start to regulate themselves once the infections are under better control, that's what I keep hearing but it's just so hard to not feel down when you're in the thick of it.

Canary - I'm sorry you are in the same situation. It really sucks, especially because I feel like people judge you and how well you're taking care of yourself when what's on the outside doesn't reflect how you are caring for your body whatsoever. People just don't understand.
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Lymie24
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Posted 10/19/2022 4:27 PM (GMT -8)
Your symptoms sound similar to mine. I had the opposite effect in regards to these diseases. Before I got sick I ate what would be considered a standard american diet and went to the gym often. I lost 20 pounds quickly as I tried to switch my diet to be more chronic illness friendly.

First I would say that restricting what you eat too much and being anxious about food can be counter productive. It sounds like you already understand that. That said, one thing I have noticed in my life is many people underestimate how many calories they are eating and underestimate how much calories they are burning. From my experience this can be a even greater issue when chronically ill as, at times, you might be forced to be more sedentary than you had anticipated while also going to food more often for that sweet dopamine comfort. I say this from personal experience lol.

I hate, hate, hate journaling my food intake day to day and counting calories but in cases like yours it might make sense to do that. Along with recording your daily activity levels this might help you.

If that doesn't help then seeing a doctor about potential metabolism issues might be in order.
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Girlie
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Posted 10/19/2022 6:18 PM (GMT -8)
Sorry to hear that morningstars. That sounds absolutely horrendous - so sorry for all your suffering
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Garzie
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Posted 10/20/2022 4:37 AM (GMT -8)
ref exercise - cardio type exercise is problematic for many with tick borne illnesses - often leading to worsening symptoms

all cardio exercise - especially the more rigorous types - like jogging/running, cycling/spin, cross trainer etc are known to lower immune function for a day or so afterwards - which in itself can be detrimental in lyme etc al

there is also the issue of ischemia reperfusion in chronic disease states that include fibrin build up etc ( lyme, bart, babs etc ) - so often a person can do short bursts of exercise ok - using the reserves present in the tissues - but when they try to do sustained aerobic exercise those reserves are used up and the cells go into deficit - and this can make us worse than we were before, cause PEM like reactions, or just more free radical damage and worsen mitochondrial dysfunction.

however - on the other hand if we do no exercise even though we are ill - we will tend to spiral downwards as all humans need exercise to be healthy - and the muscles need to be move and used to be metabolically active and also hormonally active - which is all v important in chronic disease and recovery

the trick to exercising with chronic illness is in what type and how to go about it
Burrascano - the father of all LLMD's has a very good section on this in his 2008 ILADs guidelines
that's defo worth a read - many LLMD's advise the same even today
https://lymediseaseassociation.org/wp-content/uploads/2009/08/burrguide200810.pdf

using these principles it is possible to move forward, gain strength and fitness - even with lyme
i am now training with weights for 30mins 3x per week and walking 7 days per week - including the occasional hill walk

i wrote the below some time ago - will copy and paste it here in case its of some help
========
Exercise - what worked for me
1. avoid all aerobic exercise beyond brisk walking - sends me straight into PEM ( even if i run for 100yards !) instead focus on strength exercises - they help build the immune system - whereas aerobic causes the immune system to dip for 1-2 days afterwards. Burrascano in his famous guidelines gave the same advice

2. understand the concept of an envelope or window within which you must train - enough to give your muscles a signal to grow but not enough to overstress them or your system. This is the same as for healthy people and athletes etc - its just with PEM the window is much narrower - so you have to be v careful to train only within your window.

3. stick to fairly low reps - again avoiding the aerobic - generally less than around 20 or 25 is fine - I would say start with whatever weight you can comfortably do 20 reps with - or just bodyweight eg squats or press-ups - as your tendons etc will not be strong if you have been ill for years and you do not want to damage anything - using lighter weights and not straining will help build up strength without damaging yourself.

4. Do not train consecutive days - allow body time to recover. Especially important with Lyme even without PEM. Aim to build up to training 3 times a week - 45mins to 1hrs - all over workouts - but may need to start at 1x per week if your recovery is slow to begin with.

5. focus on doing more reps than last week and doing the entire workout in shorter time (more intensity = better for muscle stimulation) - add more sets as you feel able till you get to 1hrs or your desired workout.

6. Pick a time of day when you feel at your best to do it -it will not feel nice to begin with – so you will need your best bit of the day to help tackle it

7. make sure diet and sleep are conducive to recovery and therefore making progress–

a. general food quality,
b. sufficient high quality protein - approx. 2g per kg of body weight.

BTW, i could not train as my fatigue was too severe and PEM also, until i changed to eating a Keto wholefoods diet - my energy took a useful step up within a week or so of doing that.
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morningstars
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Posts : 80
Posted 10/20/2022 10:48 PM (GMT -8)
Thanks Garzie for that comprehensive reply, really appreciate it. Did you hear that cardio lowers immune function from Dr. Burrascano? Just curious if I could read more about that elsewhere. Really intrigued to hear that because I have suspected this whole time that the level at which I was pushing my body with cardio exercise was the reason that I got so sick. I had been having smaller levels of symptoms (especially neurological symptoms like muscle weakness/dropping things, slurring, rage), which all coincided with increased exercise, and then I really started pushing myself and one day I came home from a run, sat down, and the left side of my body went weak/tingly/numb. Haven't been right since. So it's really affirming to hear that I'm not totally off base with my suspicion.

My MCAS also flares with anything remotely aerobic. At my worst I couldn't even walk around the block without a flare. I do yin yoga just about every day which is more for the nervous system than anything, but does encourage energy/qi/blood flow, but even yoga which is more quick paced can sometimes make my MCAS angry. I should get some weights as that might actually be okay.
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morningstars
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Joined : Apr 2021
Posts : 80
Posted 10/20/2022 10:54 PM (GMT -8)
Actually, was just reading through that paper you sent by Dr. Burrascano and found this also:

"Activation of the inflammatory cascade has been implicated in blockade of cellular hormone receptors. One example of this is insulin resistance; clinical hypothyroidism can result from receptor blockade and thus hypothyroidism can exist despite normal serum hormone levels. These may partly account for the dyslipidemia and weight gain that is noted in 80% of chronic Lyme patients. In addition to measuring free T3 and T4 levels, check basal A.M. body temperatures."

Like I said above my TSH and T3/T4 levels have all tested pretty normally, potentially a slightly higher end of normal TSH but maybe this is what's going on. My morning temperature sits at around 97.2 most often, sometimes down to 96.9 (apparently for hypo if you're under 97.8 by mouth for about 10 consecutive days this can indicate hypo). It'll be interesting to see if I can lose weight with the thyroid meds my doctor has prescribed.

Post Edited (morningstars) : 10/20/2022 11:58:59 PM (GMT-7)

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Garzie
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Joined : May 2017
Posts : 3992
Posted 10/21/2022 5:33 AM (GMT -8)

morningstars said...
Thanks Garzie for that comprehensive reply, really appreciate it. Did you hear that cardio lowers immune function from Dr. Burrascano?

Burrascano talks about it - but its actually a very well known phenomenon - but a lot depends on how its done and also the state of health of the individual doing it - and as in much writing in science- a lot of this nuance or context is lost in many articles - where they conclude it does or it doesn't or it does only if you run a half marathon

the effect is generally temporary in healthy people - assuming the allow enough time for recovery in between sessions
so again context is important

so for example a fit and well person not suffering from chronic illness - may well be able to run 5 miles twice a week without altering their net or average immune function dramatically - even though it may dip for 24hrs afterward

but a chronically ill person who pushes themselves to run even 1-2 miles twice a week may well suffer a net suppression of immune function - as they are not able to recover properly.

as described above - the envelope for a chronically ill person to train in is much narrower than a healthy person
so individual context is everything

if you google "does exercise suppress immune function" and read the journal papers rather than the journalism on the subject - you should be able to discern the picture - with the above contextual provisos

also it important to appreciate that there are many concurrent mechanism in play when we exercise - not only the direct immune function - but for example also the free radical / inflammation mechanism

using muscles that are chronically ill - and suffering poor perfusion of oxygen, and nutrients - to their aerobic limit quickly depletes their reserves, and damages them with free radicals
this free radical damage then adds to the inflammatory condition they are already suffering from

strength based training done carefully by even chronically ill people - can have very little additional oxidative stress - and can bolster immune function rather than degrade it. this is what Burrascano prescribed to all his patients and believed they simply would not get well without it. i think he is probably right in the majority of cases.

ref thyroid - chronic inflammation in the body interferes with thyroid hormone conversion and activity
if your doctor has tested for thyroid antibodies and you do not have any - then this is the likely cause of a high TSH reading
adding T4 medication often does not help much in this case
T3 often does - as it is the main active form and requires no further conversion

its worthwhile getting both T4 an T3 in the upper half of normal range with Lyme et al - as thyroid function also impacts immune function - and we need every little bit we can get if we are to overcome the disease
might be worth discussing with your Doctor
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morningstars
Regular Member
Joined : Apr 2021
Posts : 80
Posted 10/22/2022 1:34 AM (GMT -8)
Yeah I definitely think it's more complex than just lowered immune function for me, ever since I was a kid (and I think this is when I was first infected) I felt this loss of power and strength in my muscles. They've been ****ed up for years, which is why I was pushing myself so hard because I kept blaming myself for just not trying hard enough. Jogging 5km 3-4 times a week and biking an hour 5 days a week was definitely overdoing it though regardless, I didn't allow myself basically any recovery time. I'll definitely have to go get some weights, sounds like.

Yeah my doctor has prescribed thyroid support. I just felt a bit unsure because my levels are all pretty normal, but that's why reading about what Dr. B describes with low body temp intrigued me. I also have all the other symptoms of hypothyroid but like, who can parse that out from lyme and bart lol. So yeah we'll see how it goes with giving the support a try. I think it's t3.
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Garzie
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Posted 10/22/2022 4:44 AM (GMT -8)
i would say give it a try

BTW - you do not need equipment to get started - i did not use weights for the first several months. and even now only use a set of dumbbells for 1 or 2 exercises

i started with just body weight squats and press-ups - then later added some simple strength exercises using one muscle group against another - like a standing press above your head (where you press up with your triceps and shoulders and pull down with your back and biceps at the same time) - or bicep curls ( pull with bicep and resist with triceps at the same time)

these are great as they are v easy to do - use opposing muscle groups at the same time - require no equipment - and you can do them as hard or as easy as you want depending on your level of fitness/strength

try picking just three exercises to begin with - things like squats that use large muscle groups are best - and start with just 1 set of each - every other day
add only a few reps or 1 new exercise max each session
they idea is to build up v gradually and work out where your envelope of training is - and VERY gradually work on extending it in a beneficial way - rather than go hell for leather from the off - over do it - feel worse - and give up.
it doesn't matter how little you start with - by gradually increasing in small increments each time you will soon see progress

good luck
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Girlie
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Joined : May 2014
Posts : 47449
Posted 10/22/2022 11:17 AM (GMT -8)
If you don’t have the weights - you can start with cans of food.
Another idea is the bands.
My physio suggested them.
Tie them onto a door knob
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