posted
Has anyone else experienced this depressing side effect?
According to basic tests, my thyroid tests okay. However, since I started with Lyme symptoms and even after treatment, my weight has gone crazy.
If I eat a normal amount of calories for my age/activity level, I gain weight rapidly. If I eat less, I gain weight but more slowly.
Either way, the scale keeps going up and my clothes are uncomfortably tight. Short of sweatpants 24/7, what can I do???
Posts: 33 | From RI | Registered: Apr 2008
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posted
I am struggling with this also. My thyroid tests come back normal, but there are some peculiarities in my WBC that makes my LLMD think the parathyroid may be involved. Whether or not this causes weight gain, I don't know.
It is so depressing. If I don't put in about an hour of exercise a day, I immediately gain weight. When I tell friends this, they look at me like I'm nuts!
Last weekend I was "caregiver" for my mom and didn't exercise at all - I gained 3 lbs. and I was definitely watching what I ate.
Of course, my PCP says it's my age. AGH! I hate that statement!
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Yes, yes, yes. First lost about 30 pounds in about 6 weeks - really freakish. THEN, after starting treatment, gained like 40. All of this with no habit changes, except, when I lost all of that weight, I wasn't even exercising!
I just went to a really great endocrinologist & had a battery of test, and - of course - everything is normal, normal, normal! Except it's not. Far from it. So, I'm just hoping this will straighten out over time & with healing. But it stinks. And, when I started investigating this 'symptom', my PCP told me to hit Weight Watchers. I loved that. OMG.
If I find out more/things change, I'll pass it along. But count me in your boat. Hope we don't Sink it!!!!!!
otm
Posts: 314 | From east coast | Registered: Oct 2007
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posted
Since last summer when the Lyme symptoms started abating, I've gained 15 pounds and a few inches around my middle. The tailor is happy!
I used to associate weight gain as a sign that my body was preparing for a Lyme bout, gaining weight to use while i was sick. But don't think that is the case this time.
My diet has not changed that much.
And I workout almost every other day!
Posts: 277 | From NY | Registered: Jun 2005
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posted
I gained weight, a good 10lbs, once I started on Doxy last fall.
Doxy did make me hungry but I felt like the weight gain was still extreme for what I was eating. And I've continued to play tennis several times a week.
The weight gain for me was around my middle, butt, and legs. While I usually gain there, this was extreme.
So I would say the Lyme did something weird to my metabolism. Like you, my thyroid checks out just fine.
I've been able to lose some of the weight, am now on amoxicillin because I was sunburning on doxy so appetite is not so extreme. Won't come off my legs though. Trying to exercise at least 4 times a week.
I usually can lose a few pounds easily, but not this time.
I believe I read in Dr. B's paper that Lyme affects how you metabolize sugar and how your body handles insulin, hence weight changes are very common.
So you get to feel really crappy from the Lyme, and have your clothes feel tight, too. Lovely, isn't it?
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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posted
when i got sick i gained 30. then went on pain meds and lost 30. then last year changed my meds and gained 30 back.
i had a huge cyst over a centimeter in my thyroid. now a multinodular goiter and enlarged thyroid. the meds dont make you lose anyway. cyst was biopsied and not cancer.
i think am at my setpoint, not gaining, but 30 pounds overweight. tried dieting.
yeast-free diet for a month, lost nothing.
weight watchers for a couple weeks, started feeling weak and dizzy. if i eat whatever i want i dont gain. so i might as well eat what i want.
Posts: 615 | From maryland | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Many here (or how have been here, gotten better and are out living life) have found weight gain that was not deserved to correct itself when the infection(s) subsided. Inflammation, too, can be confused with adipose tissue. Inflammation, too, will subside as the infection(s) are controlled.
There is hope. The book below is just one source for learning more about some connections to all this. (Thanks to MacKintosh from the Cpn site for this link. I ordered it and will come back to let you know what I think.)
There are other researchers looking at bacteria, viruses and even gut flora as being connected to weight gain / obesity - and as we learn more about inflammation, that will help us better understand - and treat - swelling of various types.
And, just in case my fat cells are listening, I try to have kind thoughts.
-----------------------------------------------
www.amazon.com (or ask your local independent book store)
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005
by Russell Farris (Author), Per Marin (Author)
8 customer reviews and you can look inside the book - at link
about $13.00 -
Editorial Reviews
Potbelly syndrome (PBS) is a metabolic disorder that affects about one-third of the adults in industrialized countries. Its most important symptoms are abdominal obesity, high blood pressure, and type 2 diabetes.
Contrary to popular belief,these conditions are caused by chronic infections, not by bad habits. PBS is initiated by a small, long-term excess of the stress hormone cortisol.
The extra cortisol stimulates our appetite and slows down our metabolism. It makes fat accumulate in places where it isn't wanted or needed. Most of the fat settles around our waists, but some of it settles in our liver and muscles.
Liver and muscle cells aren't supposed to store fat, and the fat prevents them from working correctly.
As a result, we feel tired and hungry much of the time. As our potbellies grow and our PBS gets worse, our blood pressure, cholesterol, insulin, and blood sugar levels rise.
Most of the excess cortisol is produced in response to mild, chronic infections. Some of the germs that cause PBS also produce sores in our arteries. When these sores are large enough, they can block artieris and cause heart attacks.
"The Potbelly Syndrome" explains how to diagnose and treat some of the germs that cause PBS and heart disease. If you've done everything you were supposed to do and still gained weight, became diabetic, or had a heart attack,or if you are a medical professional who suspects that there are serieous gaps in the current understanding of obesity, disbetes, and heart disease, "The Potbelly Syndrome" will provide you with the answers you need to bring about better health.
About the Authors
Russell Farris is a retired artificial-intelligence researcher who spent most of his life solving problems for the U.S.
Navy. After suffering a heart attack in 1998, he began to apply his problem-solving skills to the study of heart disease and related illnesses.
Per Marin, M.D., Ph.,is a distinguished scientist, physician, and clinical teacher from Sweden. He has been writing about obesity since 1985, and many of his eighty-two publications deal with the effects of cortisol on weight and health.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I gained 70 lbs the first year I was sick. I had finally cut my calories down to 600 a day and I still continued to gain weight. It was fluid. Has nothing to do with the amount of food you are eating, at least for me.
There are several things that are potential problems for lyme patients that cause weight gain.
Allergies to food and other substances can cause inflammation and fluid retention.
Inflammation can often cause problems with insulin so be on the look out for blood sugar problems. Blood sugar problems can cause fluid retention or weight gain from fat.
Leptin and MSH can be out of whack due to the toxins created by lyme and are likely to be a problem if you are the genetic type that cannot get rid of borrelia toxins. You can use cholestyramine or something along those lines to get rid of these type of toxins. Dr. S. who has pioneered the neurotoxin protocol has a book on diet and treatment for these problems.
Medications can cause weight gain. Lack of exercise or greatly reduced activity with no reduction in calories could also be part of the problem.
I personally believe that metabolism is greatly reduced for some lyme patients.
As some have mentioned, thyroid can be a problem.
There are probably other reasons too but those are some reasons anyway.
I read that lots of FMS and CFIDS patients have fluid problems and weight problems. Not a surprise since many probably have lyme or an infection at the root of their problem. I've read from reputable sources that 80% of lyme patients are overweight.
I'm going to see a specialist in Nevada in a few weeks who has supposedly helped other people with fluid problems like mine. If I find out anything useful, I'll post it.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I'm not alone - hooray! Though I am sorry to hear many of you are in the same sinking boat along with me.
The swelling is insane, I agree. I've started to dread taking my meds or injesting anything beacuse I link these acts with my body exploding.
My issues are also in the legs, butt, and belly. I went from the girl with the flattest backside you've ever seen...to the start of a ghetto booty.
A healthy diet, regular exercise, lots of sleep, all the right supplements - what's a Lyme patient to do?
I'm going to start weeding out my cute jeans pretty soon. Out of sight, out of mind...
Posts: 33 | From RI | Registered: Apr 2008
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I had the same problem--lost weight fine, then regained it, and can't lose it. I did diet, exercise, etc., etc., etc. Nothing worked. Then, one diet I was told was 100% effective, after all the steps I'd taken, including parasite cleanse, and my weight refused to come down--said--oops! If you're metabolism is low because your thyroid isn't working, this diet won't work for you--check out the Wilson Thyroid Syndrome. Ugh.
You can do a check on your thyroid/metabolism with a thermometer--if your temp. is sub-normal in the middle of the day, it's a sub-clinical thyroid problem, according to Wilson--see The Wilson Temperature (or Thyroid) Syndrome on the net.
However, I did his handling for two years before I was diagnosed with Lyme, and my temperature never stabilized at (or near!) normal.
My personal belief is that Lyme and Company interfere with the thyroid and other glands, and that no treatment of them will be stably effective until the Lyme and Company are treated successfully.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi everyone. Lyme can affect thyroid, adrenal, and hormone function.
Regarding thyroid testing, many doctors rely solely on TSH results. For years, I knew I had a thyroid problem. Doctor after doctor kept telling me my results were in the normal range.
Finally, a doctor ran the thyroid antibody tests. I believe the normal range was 0-35 and mine was over 1000! This indicates Hashimoto's Thyroiditis, a type of auto-immune thyroid disorder. Some people who have this have other results in the normal range, but treatment is still warranted.
It is important to have the Free T3, Free T4, and thyroid antibodies tested in addtion to the normal panel. They are not usually done but are necessary for a comprehensive view. Normal results are not always normal for everyone.
Lyme can affect adrenal function also. And if the adrenals and the thyroid are not working properly, the thyroid will not function well until the adrenal issues are corrected.
Other hormones such as testosterone, progesterone, estrogen, estradiol, and DHEA should be tested also. From what I understand, saliva testing is more reliable than blood testing. One lab that does this testing is ZRT Lab.
Finding a doctor who is knowledgable about all of this can be as challenging as finding a knowledgeable Lyme doctor. I recommend calling compounding pharmacies in your area to see if they could recommend someone. Doctors who do this type of testing often use compounding pharmacies.
I also tried to have adrenal testing done for a long time, and no doctor would do it. It was finally done, and it showed I have severe adrenal fatigue and all of my hormone levels are low. Because of this, my thyroid meds are not working effectively.
I recommend that anyone who has or may have tick-borne illnesses have this testing done as soon as possible. It will save precious time if your levels are off.
Posts: 4681 | Registered: Oct 2000
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posted
FYI - Dr. S's protocol (cholestyramine) greatly increased my Leptin resistance problem.
In certain people, the cholestyramine moves toxins on a cellular level but then they are not eliminated from the body (in my case) and have resulted in increased inflammation = increased leptin resistance = 20 pounds that has not come off in 2 years no matter what I have tried.
Dr.S has not publically admitted this can happen - he really should
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
FYI - Dr. S's protocol (cholestyramine) greatly increased my Leptin resistance problem. DID YOU NOT TAKE ACTOS TO DOWN REGULATE THE CYTOKIN AND INFLAMMATORY RESPONSE???????
In certain people, the cholestyramine moves toxins on a cellular level but then they are not eliminated from the body (resulted in increased inflammation - AGAIN WERE YOU NOT GIVEN ACTOS TO DOWN REGULATE THIS INFLAMMATION
I WAS PUT ON CSM WITH ACTOS AND HIGH DOSAGE SENNA AND MAGNESIUM TO ENSURE THE CSM/TOXINS WERE REMOVED FROM THE BODY AND THEN HAD TO STOP FOR 1 WEEK HAVE COLONICS AND THEN RESTART - THE INFLAMMATION WOULD HAPPEN AS IT MAKES THE TOXINS SHIFT OUT OF THEIR BEDS BUT YOU MUST USE OTHER DETOX PROTOCOLS WITH IT
Posts: 1172 | From UK | Registered: Jan 2007
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Shosty
Unregistered
posted
Our daughter gained 40pounds eating 1000 calories/day. She also is variable in her size, because some of the problem is fluid retention, and porousness in capillary walls. Check online, for topics such as "fluid retention syndrome."
Things that have helped:
treatment for low thyroid, with both T4 and small amount of T3
bioidentical progesterone cream, anywhere from 10-50 mg/day
treatment of yeast, which causes leaky gut and swollen stomach, as well as allergies
treatment of food allergies, caused by leaky gut and migration of food molecules into the bloodstream..cutting out dairy and wheat was the single biggest thing
believe it or not, depression and anxiety attacks and other emotional states can greatly affect this syndrome...our daughter gets bigger at stores while she tries on clothes. Sounds crazy, but we have had the school nurse document this from her own observations.
Getting off antibiotics may be really important too, I hate to say it.
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
In addition to lyme causing thyroid/pituitary and adrenal problems you can often find that as you kill the lyme with an antibiotic you will produce more neurotoxins, these neurotoxins are known to block receptor sites (especially thyroid receptor sites) and thefore despite making enough thyroid hormone it is not being used - you therefore get weight gain.
Once you eliminate the toxin load you will see a reduction in weight.
Nanotek Chitosan & chitosan is excellent for reducing toxins and is used by many practioners for weight loss alone - so perhaps give that a go.
Also thyroid blood tests are unreliable as it shows the thyroid level in the blood although you really need to see what the body is metabolising - therefore find a lab that reuns a 24 hour thyroid hormone test, you collect it in a container over 24 hours and it measures TSH/T3/T4 - any good endo would be using this.
posted
I don't know if it is PBS, intestinal yeast or hormones causing my weight gain. When I first got sick I was 125 lbs and during the first year I dropped to 115 (I am 5' 6").
After the first year I suddenly gained 35 lbs and I fluctuate between 150-155 lbs. right now. At least I stopped gaining. It's been constant for six months.
I don't know if it is Potbelly Syndrome, yeast or hormones. I have noticed most of the weight is in my belly, I have a systemic yeast infection, and my mentrual cycle is irregular so it could be any or all causing the weight gain.
I eat a low-low-carb diet so it's not because of poor eating habits. I NEVER cheat on my diet. A few times my weight dropped to 148 but it always comes back.
What's strange is that my belly doesn't feel flabby. It's tight like a pregnant belly. Can yeast cause that? I don't think my diet is yeast free.
- Dr. S's protocol did not work for me - it had the opposite effect and as I said he has not publically admitted this. I didn't make this up -my LLMD has seen this happen to many women.
- still 2 or maybe it's even 3 years later we have not been able to reverse the effects of CSM/actos and detox has been a huge part of my treatment protocol.
- I am starting the Nutramedix leptin resistance protocol (still at a very low dose) I am praying that this will help
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I, too, had a very hard time with ACTOS. It made me incredibly dizzy.
posted
My former acupuncturist's sister (a chiro) works with Dr. S and I contacted her (by email) a year and 1/2 ago about my weight gain problem...
She admitted that CSM/Actos could be responsible for what happened to me, told me that it was treatable, and then said "it was beyond the scope of her email to tell me how" That was very helpful....
My acupuncturist was supposed to follow up with her on this but never did.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Shosty
Unregistered
posted
Forest Nymph, Our daughter's belly was swollen for a few years, and rock hard. The MD's all commented on this. Treating yeast very aggressively, and also going off possible food allergens, will make your tummy less swollen and soft again.
Recently, she had yeast again, and her tummy got swollen all over again. She also developed yet another food allergy, so these are def. related to yeast, and probably leaky gut from the yeast.
Fluconazole, and avoiding dairy, wheat, and nuts, made her tummy go back down again and back to normal.
I takes a month to three months, minimum. Even with an endoscopy that showed massive GI yeast, the GI MD still only prescribed fluconazole for 2 weeks, and at a pretty low dose. She ended up on 400mg for months, plus lots of nystatin, and of course acidophilus and yeast diet, thanks to the MD we located.
Get to an integrative medicine doctor or naturopath or some MD who "knows" yeast, who can treat you properly.
Our daughter had to go off antibiotics. Lyme is causing problems again for her, actually, but we have to weight that against the side effects, which is tough. Good luck.
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posted
Over several decades I gained 80 lbs. I assumed it was mostly from having kids/fibro/chronic fatigue/etc. After being tested and treated by Dr. V starting last October I have lost almost 40 lbs. I am on thyroid meds, among many, many others. I'm off all gluten, dairy, sugar, and many other things. I keep wondering if I will gain it all back - I'm not getting rid of my clothes yet!
-------------------- "His faithful love endures forever." Psalm 136 Posts: 189 | From MN | Registered: Dec 2007
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