Weight gain or weight loss with Lyme?

The so called Lyme specialist I saw told me that it is impossible that I have Lyme given that I gained so much weight since I became ill. But I knew then that he was doing the typical (Canadian) cover-up.

Still, I want to ask an open question, I invite everyone reading this post to tell me whether you lost, gained, or had no weight change at all with Lyme.

I went from a normal weight to a weight that I am uncomfortable with disclosing.

I gained weight and lost muscle, went from 175 to an uncomfortable 220.

Weight loss, 15 pounds. I have to eat a lot or I will drop very quickly

Yeah…

"I went from a normal weight to a weight that I am uncomfortable with disclosing."

talk about an incredibly sensitive subject that reduces me to tears at the drop of a hat. Weight loss is horrible, makes you feel and look sicker and can be scary.

But weight gain is almost a crime in this culture. I gained 40 lbs nearly overnight despite a ridiculously restrictive diet due to GI problems, and subsisting on vegetables and chicken, 3 f'g times a day. Not only do I get to deal with the all consuming and overwhelming reality of dealing with lyme and co, AND GI distress, AND neuropsycho/cognitive problems that have ruined every relationship I had and have left me entirely alone, have destroyed a very promising career, and have left me completely destitute… but I also get to be fat. I don't recognize myself. It makes me angry, withdrawn, frustrated BEYOND description. I ride my bike incessantly and I cannot tell you how many people drive by and yell "fat b**ch" out the window… taunting and humiliating me. I used to be a size 2/4. I can't even afford to go buy new clothes.

When you are fat, society blames you. You are gluttonous, nasty, piggy, selfish, lazy, and pathetic. When you are fat and your doctor blames you, you blame yourself and plunge deeper into depression. My cardiologist basically told me I was making up my heart sx and I was creating much bigger problems, because I was fat and lazy.

Sorry for the rant…. but people have NO IDEA what it's like to be fat all of a sudden.

Oh, and Jude, that MD should lose his license.

p

Post Edited (Pirouette) : 6/5/2015 7:50:07 PM (GMT-6)

Pirouette said...
When you are fat, society blames you. You are gluttonous, nasty, piggy, selfish, lazy, and pathetic. When you are fat and your doctor blames you, you blame yourself and plunge deeper into depression. My cardiologist basically told me I was making up my heart sx and I was creating much bigger problems, because I was fat and lazy.

Sorry for the rant…. but people have NO IDEA what it's like to be fat all of a sudden.

Oh, and Jude, that MD should lose his license.

p

Thanks for sharing the pain, which I certainly can relate to, Pirouette.

The last time I saw my own physician, she muttered under her breath as I left, it was something like "go eat a big plate of (whatever it was that she said)." I don't remember the precise words, but it was something very cruel, much like that.

There's no point in coming back with a retort, I have been there and done that. If I do verbally put them in place, in the past I've been refused future appointments based upon that fact. There's no winning.

They (doctors) want me to live silently with Lyme so the health care system doesn't have to pay for my treatment, then they laugh at me on top of it... but I know I'm going to win out in the end... you just wait and see!

PS - Thanks to all who took the time to respond so far to my question. I see that many gain, many lose.


Yes, the specialist I saw certainly was wrong in saying that Lyme sufferers never gain weight. I must say that I was quite insulted with his statement, that it was not possibly Lyme that I have... obviously first because it is patently untrue, which I was already pretty certain of at that time... but also because it implied that he with his superior intelligence, could perceive that little old me was mentally challenged enough to fall for his BS, hook, line, and sinker.

I've had both..... When I got this disease, I weighed a respectable 176, over the next year to eighteen months I ballooned to over 240... I loved to exercise, having completed several triathlons and marathons, but the disease took its toll and I could not stop the weight gain, until I started treatment, which was about six months ago... In six months I've dropped over forty pounds and I have started to exercising again.. Swimming is still difficult since my Lyme is centered in my chest and ribs...

I hope to return to the 170's and steady exercise... So I do feel your pain, but there is hope.

Well Pirouette, you hit the nail on the head, that comment may sound harsh, but it's also true. And if doctors are so willing to sell their soul to the government that they can turn a blind eye to those in need, then they deserve to be told such blatant truths.

It's becoming quite clear that weight comes, or goes, or comes and goes, and there's just no telling how it's going to be. Man, that doctor had some brass saying what he said to me...

No, no health insurance at all.

And no, I haven't done an ILADS search; I'll see what comes up that way, thanks.

Thanks, Girlie, I will.

Girlie said...
If you find a LLND in Manitoba - that would be great...but aren't covered by Provincial health care...so you would be paying out of pocket.

I don't know if it's possible for you to afford one appointment...to maybe get evaluated and started on an herbal treatment...and then continue treating on your own after?

(That is - if we can find you a LLND near you, so you don't have to travel far)

Oh, I wasn't paying attention to that, no, I can't afford anything paid out of pocket. Thanks for pointing that out. I have ordered what I need to start a herbal treatment, I simply must skip the initial testing. I had a heck of a set of bulls-eye rashes when it began, they were huge, there were three of them.

SLML, yes, every doctor I have seen, including the first one I ever saw was made aware that I had these rashes. They say that you can't get Lyme in Manitoba, which is a known fallacy. The physicians here are being made to lie, obviously in effort to save the health care system money. Yes, it is negligent for them not to treat me; and understand that the 'they' that knew about the rashes, includes the fellow said to be one of Manitoba's authorities on Lyme.

But what they should have given me (ten years ago and today, that I have never had--abx), has no bearing on the fact that I can no longer fight to get them, as I have been blackballed in our medical community in attempting to do so for as long as I did. If I were to end up on my deathbed today, I have little doubt that local doctors would stand there laughing.

From what I understand, many Canadians with Lyme have faced such gross negligence in their treatment. I have been told that the bulls-eye rash is no proof of anything... I know the truth, that the ones that do treat Lyme, in most cases take this and related symptoms as the measure of whether to proceed with treatment or not.

I lost my career over these idiots...
I must add, that the fury with which I've suffered; they treat me as if I am so stupid they can tell me anything... and yet I haven't been able to fight on past them, yet anyway. I think the day is coming. I had an experience yesterday, I think I should start a new post to tell about it when I have the time. It was very spiritual of an incident.

Jude,

Well I really feel for you. Those doctors are extremely negligent in their treatment of you. Treating Lyme is difficult enough in the US - it requires usually going to out-of-network doctors too. But to not treat a bulls-eye rash is absolutely archaic. How absolutely ridiculous! I am so sorry!

But good for you! The herbals will definitely help. An encouraging book to read is called Out of the Woods by Katina Makris. She is leading a vibrant, healthy life and she treated with herbs and homeopathy for 5 years to pull her out of an illness that had devestated her career, her marriage and her home. She has a website/blog - you could ask her for any tips too