I have lyme and have gained 20 lbs. that won't budge. I am so frustrated, Looking for answers too.
Yes, with lyme you can either lose weight or gain. I did both. But, of course the weight gain is what stayed with me. When I was able to start walking and changed my diet, I did lose some of it. But, not all of it. Don't give up though.
I use to work for the fresh water wild life conservation in the state of Fla and Began to get very ill in 2004 and progressively got worse. I have been repeatedly bitten.
And it has been a horrid experience, and allot of physicians are either just plain illiterate, or only go by the 3/5/10 band show cut off, or Titters test. This test has been a waist of my money. I even asked for the IGG series and got no where.
You would not believe the things I have been told by physicians.
Even holding the darn ticks, from off my body, in vials, in my hand.
I was unaware of the dangers of these ticks until 06 and 07 and have been bitten repeatedly every seasonal hunting period since 2003.
I have been to numerous physicians who iggy me or tell me lymes is rare and I am only positive for one band. Need at the least 3.
IgG showed Borrellia 41. Wow must be one heck of a spirochete because I am extremely ill and no one seems to know anything about it. It is to my understanding that thousands of people are suffering at this same fate lymes band cut offs.
If titters shows neg...they stop at any other testing. I have been told that is all that CDC requires them to do.
I went from 140 lbs to 200 lbs. And that is with watching everything I put in my mouth. I use to walk 6 mile a week until my feet, knees, hips became so painful I could not do it any more. My muscles get very painful too. My energy Level has diminished also. When I do have a good few days where I feel ok, that is when I catch up on chores etc...
Due to my age I have been told was going through menopause, had arthritis, over eating, lack of exercise or in my head. If you ask for something for the severe pain you get that funny look from some of the Doc's. It has been one big circle of running to and fro with out any medical help at all.I have resorted to hunting the web and speaking with other people with lymes, for alternative medicines and healing helps.
The email below was sent to me after my inquiry of physician information. I need to find one.
For IgG testing of Lyme disease, 5 of 10 specific bands need to be
positive for the test to be considered positive. The 41kDa protein alone
(or any band alone) is not evidence of past or present Borrelia
infection. In fact, a good portion of the healthy US population has
reactivity to band 41.
Lyme disease is not endemic in the southern United States, as you may be
aware. There is however a similar illness, called Southern tick
associated Rash Illness (STARI) which is characterized by a rash similar
to that of Lyme disease, but occurs after the bite of an different tick,
the lone star tick, and is not caused by Borrelia burgdorferi.
We always recommend that you seek care from physicians associated with
academic institutions. Please continue to work with your health care
provider to determine the cause and appropriate treatment for your
Please see our website for additional information on testing for Lyme
Centers for Disease Control and Prevention
Division of Vector-Borne Infectious Diseases
Bacterial Diseases Branch
Fort Collins, Colorado
Yes, I have flutuating weight loss and weight gain. It is so much harder for me to lose weight now. My LLMD reviewed my last thyroid results and said it was slow. So far I've seen there is a correlation to low thyroid and Lymes
when I first started getting symptoms - over 3 yrs.ago - [I had never heard of lyme then] - I asked my doc. if it could be due to 'menopause' and was told 'no - you are too young' - [I was 45 yrs.] - having visited doc. on numerous occasions since - I have been told it is probably due to 'menopause - hormone levels' !!!
I have since found an LLMD. [lyme literate doctor] - thankfully.
weight gain/loss can be part of lyme - obviously we can't do the excersise etc; that we once did - but I think the bacteria affects our metabolism - well it affects just about everything doesn't it.
Welcome. Weight gain or loss is on the symptoms list for lyme. Lyme affects the hormone levels and decreases our exercise tolerance. I haven't gained any weight but I am very cautious about what I eat as I can't exercise like Iused to.
Hi I have bean to many doctors but I found out 10 years ago that I have Lyme I had antiboditcs two rounds of IV antidotics for six  weeks each two times a day. Know every year two  times a year I get a red,itchy,hurting, burning light sencetive eye. It could be in the right or left or right . It comes each and every year at the same time as I was put in the hospital the first time PLEASE HELP
Welcome to MedHelp -- sorry you are have problems.
Have you seen an ophthalmologist (an *MD* who specializes in eyes)? I would do so, and tell the doc your Lyme history and treatment, just as you do above in your post. Many docs do not understand Lyme and once you've had some antibiotics, they assume any problems you have going forward cannot be Lyme-related.
Lyme, however, doesn't necessarily follow the rules of medicine, and Lyme may have persisted and need more treatment. Everyone is different, it seems, and part of the confusion among the docs is that it takes a good Lyme doc to know what to test for *in addition to* Lyme, because about half the time, the 'Lyme' ticks carry additional infections that do NOT show up on the usual Lyme tests and are not cured by the meds that work against Lyme. Even the 6 weeks of IV antibiotics may not have been long enough treatment against Lyme, depending on how long you had been infected. Six weeks is more than many docs will prescribe, but other docs will treat for *months*, not weeks. That's what my doc did.
Bacteria (including Lyme bacteria) are most susceptible to antibiotics when the cell wall of the bacteria is splitting to reproduce and make more bacteria. That works for all bacteria, but not all docs know or believe that Lyme has a very slow reproductive cycle, so there are fewer breaks in the cell wall over a period of time (compared to other bacteria) for the antibiotics to get through to kill the Lyme bacteria. (Sorry if this is hard to follow; I've had a looong day and am tired.) Bottom line: Lyme treatment needs to be longer than for other bacterial infection, measured in months instead of weeks.
Also if (along with Lyme) you had one or more co-infections, those infections may not be killed by the antibiotics used against Lyme.
So in your situation, I would find a different Lyme doc for a second opinion, and take copies of your previous tests with you so the new doc can read through and figure out if something needs to be done for a fresh look. This doesn't mean your current doc is wrong or bad, but Lyme is a tricky witch and sometimes it takes a new set of eyes to see what's up.
That's what I would do. Let us know if we can help, and do let us know what you do and what happens, okay? Best wishes ... and good for you for not giving up!
green bar on the page when you first log in, saying "post a question"
oops -- I meant to add another line, but forgot -- the last, fragmented line of my message above is what I was going to base my final comment on, so here is what I meant to edit it to say:
Your post above is at the bottom of a long and years-old string of messages, so your post may not get many readers. To get the best chance for others to comment too, start a new thread, copying your post and pasting it into a *new* comment of your own.
How to do that?
See the green box that says 'Post A Comment'? Click on that, and a new thread of your very own will open up. Then put a title for your post ("Do I need a second opinion?" would be fine) and then copy and paste the text of your message I have just responded to. Then you'll get more readers and comments.
I just re-read what I wrote, and wow I was tired indeed. Trying again:
The reason to see an ophthalmologist is that their specialty area takes Lyme quite seriously, in my experience and from what I read. Other eye docs are not so tuned in, generally. I had gotten so accustomed to explaining Lyme to docs and apologizing for having it (since a lot of docs don't much believe Lyme is serious) that when I went into the eye doc for a regular exam, I started apologizing all over again, since I was by then accustomed to docs not caring anything about Lyme.
But! ophthalmologists really really do understand, as a group. It was quite refreshing.
Our daughter had Lyme Disease when she was 5, she is now 10 and has gained weight since diagnosed with the disease. She is at the 95th percentile, 106 lbs on the weight chart & at the 50th percentile, 54 inches on the height chart. She eats healthy foods most of the time but the weight still comes on. We had her thyroid tested and that came back within acceptable ranges last year. We are going to tested her again shortly. Have you or anyone come across a physician and/or documentation that correlates Lyme Disease with weight gain?
I'm just dropping in and apologize in advance that I haven't read the full thread, but my advice is that you need to treat the Lyme first and worry about the weight later. Do try to get full thyroid panel testing done, which I bet Jackie already addressed above!
It is anecdotal, but from what I've read from others and experienced myself, Lyme can really mess up your hormonal balance, and without that balance weight management is incredibly difficult. I honestly took the best care of myself while the most sick, in terms of eating a very clean/fresh diet and exercising daily (despite the symptom load I had), yet I could not lose weight and felt like I gained by just looking at food!
I've had weight problems all my life and am still obese, but now that I am recovered from Lyme I can really appreciate how truly hard it was to manage weight while sick. So long as you are doing your best in terms of eating well, treating the Lyme, and staying POSITIVE, then you are winning.
Many Lymie's become hypothyroid that can cause weight gain. Once on medication my 30lbs gain came off. It's good to check.
I haven't done any extensive reading on this issue, so don't have much hard knowledge to contribute, but I think it's fairly well accepted that Lyme messes with the endocrine system ... and that's much of what controls weight. Bada-bing, bada-boom.
I'd focus on getting rid of the infection and then when that's taken care of, see how the endocrine system sorts itself out. Kind of like pregnancy: nothing wrong with gaining some weight then, and Mother Nature has her reasons for doing so ... then when the baby is born and nursed, the weight often goes away. Parallel process in Lyme, perhaps, but for different and unrelated reasons.
I'd get healthy first, and get skinny later just as a matter of the body righting itself again.