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Has anyone lost the weight they GAINED from Lyme?

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Posted 11/1/2018 1:09 AM (GMT 0)
NO I am not looking to hear stories of how you lost weight from Lyme...I want to hear if you had GAINED weight from Lyme and what helped you lose it.

Currently I am eating about 1100 calories a day and slowly steadily gaining weight. This is really rough on me because I have a history of an eating disorder, and when I first got diagnosed I put on 45 lbs. I lost *most* of it but now it is just inching back up again. This is my worst nightmare. I'm eating as much as I did when I had an eating disorder and now I'm gaining weight.

I am on Armour thyroid and take T3 three times a day so there is nothing else to be done regarding my thyroid (I have low levels without it, yes I have hypothyroidism and know all about testing). I have high estrogen, low testosterone, low progesterone, and low cortisol too. So my hormones are all screwed up. I don't know if my liver is involved with this too.

I thought I had SIBO but I've finished the course of antibiotics for that and nothing has changed. I don't believe Candida is a problem because I have no coating and no insane carb cravings. All I crave is food period, because I hardly eat. I take betaine HCl and pepsin to digest food because I seem to have low stomach acid. The only thing I can think of is parasites and I am waiting to start a med called Alinia for that which is basically my last hope. I'm quite sure I don't have mold toxicity, I tested for it a while back and nothing has changed in my environment to cause it.
Posted 11/1/2018 1:12 AM (GMT 0)
It won't let me edit my post so I will add. My diet is VERY healthy obviously, but I have food intolerances making it hard to digest a lot of food. So I eat pretty much no carbs, mostly fish with coconut oil as that is all I can digest. Can't digest vegetables nor meat. I drink plenty of water too, 6 bottles a day. I cannot exercise much because of pain but that is no excuse to be gaining on this amount of food and exercise never helped me lose any weight anyway.
Posted 11/1/2018 2:11 AM (GMT 0)
Just posting to point out how to edit your post. Click on the little arrow - top of your post - right hand side. (Says options) you’ll see edit.
Posted 11/1/2018 2:41 AM (GMT 0)
I know how to edit but the screen froze every time I tried to do it.
Posted 11/1/2018 3:24 AM (GMT 0)
I initially lost weight because I pretty much couldn't eat anything due to stomach issues and then issues related to facial paralysis, but then once I started recovering on abx I started eating more normally and then gained back all that I'd lost and then some. I'm still about 8 lbs above my old normal weight, but I'm exercising a ton now, so I hope eventually that will take care of the rest. I could do better with my diet and that would help too, but I have a stressful job, so I'm eating good meals and a lot to try and make myself happysmile
Posted 11/1/2018 5:09 AM (GMT 0)
Yes, the little I gained, I now lost from eating low inflammatory foods tested with my blood.

I only gained a little, but it was from not exercising / being a lot less active due to lyme body pain.

Now, post lyme, I am more active which increased strength and lowered body fat to a very good level for my age. Last two months I have been eating a "low cytokine" natural foods diet tested and tailored for my body. To my surprise I lost 10 pounds, which was not even my point of doing this. I wanted to lower my body inflammation as much as possible and make my gut the best its ever been to support my immune system.

This Mediator Response Test showed my highest inflammatory foods creating cytokine release were: yeast, cane sugar, cinnamon, turkey, gluten and ANYTHING from corn. Eliminating 100% of those (not 95, but 100) for 1.5 months has made my gut health the best ever, body fat is only 10% from 15% before (in my 50's) and I unintentionally lost 10 lbs from 178 to 168.

My conclusion: even with an athletic lifestyle, food that is shown to be inflammatory to you can also create weight gain. Drop the inflammatory foods and see weight loss., weather you wanted it or not.
Posted 11/1/2018 5:51 AM (GMT 0)
jb1994
Man you must be in a lot of pain and frustrated. I hear ya

The only thing I can think of is that YES the Alinia is really going to help you

this is why, I think you have a parasite
Whatever you eat, your body digests into your blood. Then the parasite feeds on that. Your body knows there is an infection, but can't see it. So it makes a immune response to what you just ate. You eat a choclate chip cookie, the parasite starts munching on it, your body only sees the cookie and responds to that. Now you can't eat cookies, on to the next food etc. Until you eat something the parasite doesn't like, which I guess is fish.

Now the fat part, I think, is your body's response to toxins. Fat is suppose to be a filter for toxins. Your body is going "hey, there's a lot of toxins in here, let's go into emergency mode and make more fat to clear out the toxins"

The above is just a huge wild guess

I think Alinia, which is really easy on the stomach would give your body the extra kick/push to kill whatever is doing this. I wish I could give you some to try (because it has no side effects). I bought mine from alldaychemist.

So I think you are stuck until you can get your hands on Alinia or an antiparasite. I hope that eventually your body will learn not to attack the food and the parasite itself -- perhaps it will find a weakened version of the parasite and adapt. I hope soon after this your food allergies go away.

You can also try NOT eating anything at all -- fasting, for 3 days. This worked for me. You said you were in a lot of pain, and it isn't much more pain not to eat. I would try the Alinia (or other antiparasite medicines) first however it sounds like you need as much energy as you can get.

Again I am just guessing
Posted 11/1/2018 6:03 AM (GMT 0)
Also one more thing

If you do decide to fast for 3 days, it is good for you. Scientist say that it "reboots" the immune system. They say that the body digest the old immune system and re-creates a new one. So if you think it is messed up, this could be a way to reset the immune system. Also it all over the Bible (and fasting for 10 days)

And if you think about it, it should cut off food to the parasite.

It can't be that bad for you either because if you think naturally, humans probably never ate every day. You would hunt, and have unsuccessful days, and could go 3-10 days without food. If you ate something bad with parasite, your immune system would reset during this period. In fact it makes total sense. That and the Bible plus the scientific explaination, can't be that far off as a solution.
Posted 11/1/2018 2:08 PM (GMT 0)
nope. still having a hard time losing it.
I gained so much sad((( it's insane. i keep being told it's inflammation and this is nothing to worry about right now :* but this is SO NOT ME sad(
i used to weigh 125 - now i weigh 175.
Posted 11/1/2018 5:58 PM (GMT 0)
I feel ya! I also gained weight, like 15 pounds. Which doesn’t sound like much but it came on super fast and I’m a really small person so 15 extra pounds on me is enough that none of my clothes fit, including my bras and underwear. It felt like an added insult to everything else.
I’m finally starting to shed some of that weight. I think like it’s been said already, once you start healing it helps. It’s so hard to be patient though! I know you’re already eating well, but sometimes even healthy foods can be adverse for you. I’m doing the AIP diet, (auto immune paleo). If you google it you’ll find tons of articles/blogs on it. I originally started it for my Hashimotos but I found its so anti inflammatory it works really well for Lyme too.
Also, I notice you’re on armour? I know that works well for a lot of people. I tried it a couple of years ago because I heard it was better, but for me, it made me gain so much weight that would not budge! I found a new thyroid dr and he put back on a combo of levothroxine & liothyronine (t3 & t4) and all the weight I had gained just fell off. So that just might be another thing to look at. He told me for some people with autoimmune thyroid disease armour does not work. I forgot all the science he told me about it lol
I’m still not able to exercise anywhere near what I used to, but I do go for a walk nearly everyday, I think that helps a bit.
Posted 11/1/2018 10:21 PM (GMT 0)
@oregonhay, thank you for the encouragement about Alinia, I look forward to trying it. I also ordered it from that website.

As for fasting I definitely cannot do this. As I said I have a history of an eating disorder and fasting is 100% not good for me.
Posted 11/1/2018 10:25 PM (GMT 0)
@RainyCloud that is good to hear, unfortunately I am already gluten free so I don't think that is my issue

@sandyfeet what protocol did you do? I cannot eat a variety because my gut is so bad. I wish I could say it was antibiotics because at least those would've helped with the Lyme/co-infections but sadly it is just a crappy gut I suffer from. So irritating because I avoided antibiotics for so long because I didn't want that to happen. I don't know about mushroom broth, what mushrooms? I assume you make it yourself?

@Squarsh that is good to hear you are also losing weight. As for things that are healthy that are bad for you, well, everything else I cannot tolerate so I would simply have to go without eating if I cut anymore out. I am pretty sure everything I eat is autoimmune and it is definitely paleo/keto. And the Armour is only 1/2 grain so I don't think it's enough to help or harm, I get 30mcg of T3 total per day and that is supposed to help but it seems to go right through me.

Thanks for the replies everyone, if anyone has any more suggestions or treatment protocols that worked I would love to hear them
Posted 11/2/2018 2:10 PM (GMT 0)
Yes, gut health is HUGE.

We always have people (newbies) asking about diet(s) with varied comments from the members here. And then there are those who say diet does nothing for them- they didnt put enough effort into it.

There are so many versions of healthy diets, you need to find what foods agree with you and what doesn't. You're not going to fall over from foods offensive to YOU. Its the accumulation affect that make the difference- like anything, its also time. 95 % of people take their best guess at what foods works for them or are offensive..Why guess?

One way to stop guessing is the Mediator Response Test which II mention this a lot with little to no response.

"Clean eaters" take note- you are probably not eating as clean as you think. You cannot immediately feel inflammation building from cytokine releasing foods. It builds over time.

It only makes sense to be accurate vs guessing with foods. Many offensive foods make a chemistry/inflammatory change to your body, its not real obvious to you which is why guessing is partially a waste of time when it comes to food / latest fad diet.

This whole food thing is way more clear to me now.
Posted 11/2/2018 7:10 PM (GMT 0)
Yes. I gained a ton of weight when Lyme started, and was barely losing it even when I was able to start exercising. Something happened within the last month or two that all of a sudden I started losing weight. Even on weeks where I'm eating more, and don't have time to exercise, I'm still losing weight.


I feel like some imbalance in my body may have been restored. I'm not sure exactly what caused it but here are a few potential things:

1) I had adrenal issues where I haven't produced enough cortisol and I used hydrocortizone + drenathropin to improve that.
2) I made progress at killing active Lyme and my LLMD wants me to focus on killing lyme in cyst form, been switching between alinia & tindamax for that.
3) Found out I have 30x the cutoff for lead exposure. Had my first EDTA treatment for that and I feel like I lost a few pounds in one week after that.
4) I had super low testosterone levels and I have been supplementing with DHEA which may have brought those levels up a bit.

I also do a ton of other things but those are the main things I could think of that might have correlated with normalization of weight.
Posted 11/4/2018 2:41 AM (GMT 0)
@lymelearner I also don't make enough cortisol, I used ashwagandha but I don't know how much it helped. I still get jittery around mid afternoon. I'm going on Alinia though so that's good it helps you. I don't know about Tindamax. I just started EDTA tonight, I think it only has enough servings for 3 weeks though, I don't know how I'll react but that's a lot for just a week, to lose, I would love to lose that amount period. And I also have low T, I take bladderwrack which is supposed to increase it but no luck so far, I will ask about DHEA.
Posted 11/4/2018 2:45 AM (GMT 0)
@ sandyfeet
I have tried Buhner but to no avail, I think herbs just aren't strong enough for me anymore. Well I can't do GAPS because histamine issues though it seems like that helps everyone else. I don't know how I do with gluten, if it is a low key inflammation thing I'm not sure if it's affecting me but I rarely have it, and if I do it's no more than half a serving if that. I can drink broth from veggies yes, it's just the fiber that I can't have. Sauerkraut no because it has bacteria that ferment in it and the SIBO et al does not like it, not sure if kefir would be similar but probably. Am not sure about the AIP but right now my diet is pretty darn limited so I don't think I could cut anything else out. Thanks for the detailed response.
Posted 11/4/2018 4:16 AM (GMT 0)

sandyfeet said...

Lately there's a lot of controversy around probiotics....

sandyfeet - could you explain - what’s the controversy ? I don’t think I’ve heard about this...
Posted 11/4/2018 4:53 PM (GMT 0)
I think there is a ton of info /studies showing that probiotics do help.

The SB is different - I don’t think it’s even in the probiotic class?
It’s a yeast.

*** I caution anyone - especially those taking abx - to not stop taking your probiotics ****
Posted 11/5/2018 12:04 AM (GMT 0)
[ "The SB is different - I don’t think it’s even in the probiotic class?
It’s a yeast." ]

Florastor is the US brand of a popular SB yeast "probiotic" per thier website.

https://florastor.com/about/

I had a reaction to it, now I know why per my cytokine reaction test from yeast.

lv3 or vsl3............. I dont remember, but its one of the best bacterial probiotics. that stuff made me feel better. Even though I'm on a gut health kick for two years, I stopped any probiotics. Note: no abx for a long time too.

Post Edited (astroman) : 11/5/2018 7:44:58 AM (GMT-7)

Posted 11/5/2018 2:33 AM (GMT 0)
I have S.boulardii in the fridge but was afraid to take it because of the SIBO. I don't know if it's expired, it says it's shelf stable but I somehow doubt bacteria survive on the shelf
Posted 11/5/2018 7:16 AM (GMT 0)

jb1994 said...
I have S.boulardii in the fridge but was afraid to take it because of the SIBO. I don't know if it's expired, it says it's shelf stable but I somehow doubt bacteria survive on the shelf

Mine isn't in the fridge.

My probiotics are though.
Posted 11/5/2018 9:15 PM (GMT 0)
Maybe I will ask about taking it again then.
Posted 11/5/2018 9:42 PM (GMT 0)

sandyfeet said...
JB, I didn't mean to sow doubt in your mind when you already have so much to deal with.

Until I had lyme I almost never took any sort of medication or supplement, I'd even wait out a migraine. And I'm very much an overanalyzer, part of that is due to self treating. My apologies.

Same here. Wasn’t on any medications - bottle of aspirin or Tylenol would expire .

... And look at me now !!! smile
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