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Posted 3/19/2014 2:19 AM (GMT 0)

Hi everyone,

Sorry it's been so long since I've been on here - I've actually been feeling quite a bit better lately. I mean, I tend to do stuff during the week, rest in the early afternoons and sleep on the weekends. But I still have weekday mornings, late afternoons and evenings, which is way more than I've ever had before! I was diagnosed with Celiac and since going gluten-free, I've been able to get a part-time babysitting job and start to study one unit at university. Yay! I'm still not very well, but there is definite improvement.

I've finally gotten in to see a good doctor. I had to be on the waiting list for 9 months before I could see him, because many people in my state who have a fibromyalgia diagnosis want to see him. Anyway, it was this new doctor who tested me for and diagnosed me with Celiac. He also suspects Lyme disease and three of its coinfections (especially Bartonella, of which I have the rash as well as the symptoms - I never paid much attention to the rash as it comes and goes, doesn't look alarming and doesn't itch/hurt). His theory is that I got Lyme disease (three years ago tomorrow), which triggered the onset of Celiac. (Although it's possible that the stressful events around that time were the trigger for Celiac.)

 

Anyway, the problem is that the government refuses to recognise that we have Lyme disease here in Australia. So I can't get government funding to be tested for Lyme. Instead, I have to pay $1100 for the first test, and if that doesn't show up positive via at least two testing methods, then I can pay $1200 for another test. I've already decided it's worth paying, as soon as I get my next scholarship payment (which was granted for healthcare costs anyway).

1) I know it's in Australia because a friend who lives near me got Lyme's without ever having been out of Australia. It took her 7 years to get a diagnosis.

2) If it is Lyme's, then it can be treated (differently to how you treat fibromyalgia) and I could get better! 

3) Lyme's can cause more damage as the disease progresses, and I want to prevent any more health problems developing.

One annoying thing is that fibromyalgia and chronic fatigue syndrome can develop from Celiac and Lyme - so even if I follow a completely gluten-free diet and totally get rid of any infections, I may still be left with FMS/CFS - although not as bad! But I'm hopeful that I will recover completely :)

Anyway, I thought my story might help all of you to check that your doctor has actually ruled out Lyme and Celiac before diagnosing you with FMS... because I hadn't been tested for either until I was sick for over 2.5 years! I was just told that I had fibromyalgia, chronic fatigue syndrome, IBS, depression and anxiety. One doctor even suspected that I was anorexic until they sent me to a psychologist who determined that my food avoidance was not because of a fear of getting fat but because everything I ate seemed to hurt me!

Anyway, it was such a pain finding a doctor who was willing to really listen to me and help me properly. By the way, the doctor I'm seeing has been trained as both a medical doctor and a naturopathic doctor - so he determines which parts of natural medicine are helpful and which parts aren't, and only prescribes medications when he has to. It's awesome!

Posted 3/19/2014 2:24 AM (GMT 0)
I don't know if I was tested for Lyme or not, but I plan to ask my new rhuematologist about it. i have been bitten by ticks. We live in a tick and Lyme area and I grew up n the country. We loved camping as a family and I was bitten several times before I was 18. Thanks for posting.
Posted 3/20/2014 8:02 PM (GMT 0)
oh wow Jasmine - i thought I hadnt seen you in a while!

Does this mean you still have CFS also - or do you think the lyme was what was causing all of this?

Thats so great you are doing better - i can't believe all the things we could possibly have and never really know..I got tested for celiac also and was clear - but my sis has it...

Are you still doing the smoothies etc?

Im pretty much the same and still can't work out whats going on!
Posted 3/20/2014 8:09 PM (GMT 0)
This is fantastic news. Your other doctor should have tested you for Lyme. That's one of the illnesses they need to rule out before a diagnosis of fibro is given. (See What Else Could It Be in Fibro 101). We had a member a few years back who was misdiagnosed with fibro. When she started getting worse and knowing fibro isn't a progressive illness, she got a second opinion and discovered she had Lyme. She lives in Canada. She is doing a lot better now.

I'm glad you didn't give up and were persistent.

Sherrine
Posted 3/21/2014 7:51 PM (GMT 0)
Weirdeux, please do get tested for Lyme and any of its coinfections that you have symptoms of! Make sure you get tested by a reliable lab - Infectolab or Igenex.

Hi Wackers, once I've been treated for Lyme and it is gone completely, then I'll wait a few months for the fatigue from being sick to wear off, and then I'll see if I still meet the criteria for CFS and/or FMS (at the moment I still do). The Lyme and/or Celiac may have triggered long lasting CFS that may not go away with treating the initial cause - but I certainly hope that isn't the case!

Wackers, If your sister has Celiac, I would ask to be tested again, by the best lab in your country for picking up Celiac, and make sure they test you for IgA deficiency. When I was tested for Celiac, it showed up negative ONLY because the doctor didn't realise that I was/am IgA deficient. I am still doing smoothies but I no longer rely on them the way I used to, and I'm not adding all the powders anymore, because I can't afford to. I now only take what my GP and Lyme Literate doctor prescribe.

Hi Sherrine, thanks for being happy for me :) I have been to over a dozen doctors since getting FMS and CFS symptoms, but NONE of them wanted to test me for Lyme when I asked them to. "It doesn't exist in Australia" is the harmful, untrue mantra. My GP believes Lyme is here, but he isn't literate in it, so he is happy that Im seeing the LLMD as well. It's very encouraging to hear that the lady with Lyme is doing much better with treatment!

The doctor thinks it should take 18mths-2yrs for me to recover completely. By the way, it's now exactly 3yrs2days since I first got the flu-like illness from Lyme which triggered all this.
Posted 3/21/2014 8:53 PM (GMT 0)
Wackers - please check if you have had your TtG levels tested or not. This is a 97% accurate blood test for Celiac disease. I would encourage you that, even if all the testing for Celiac shows up negative, a gluten free diet trial may still reveal a gluten sensitivity. Have you been tested for Lyme?
Posted 3/22/2014 3:15 AM (GMT 0)
Hi Jasmine. I was glad to see your name beside a new post. I noticed some of your posts when you were here before, and I think you are a sharp lady.

It's always Great!! to get the correct diagnosis. No use to spinning your wheels over a possibly wrong one. And it's great that you've taken the time & shared your experience. It doesn't happen a lot, but I do see posts like yours at various fibro forums about getting lyme diagnosed. I'm also happy for you that you got a good doctor. Having confidence in the doctor you see is such a good feeling....wish it happened more.

fyi I recently saw a report about more tick bites and lyme cases now being found in San Francisco, CA and surrounding areas. Sorry, I didn't save the link.
Posted 3/22/2014 1:31 PM (GMT 0)
Hi Rockon, I have fought so long to be tested for everything that could possibly explain any of my symptoms. Unfortunately doctors are given a budget to work within and either the bulk billing doctors won't order all the tests, or the private doctor (the Lyme Literate one I'm seeing now) will order the tests, but I have to get further into debt to pay for them. I wouldn't have any debt if not for all my healthcare costs over the last few years. If I'd known this earlier, I may have just started off by seeing the private Lyme Literate doctor. In fact, I'd go so far as to propose that a person can only rule out the differential diagnosis of Lyme if a Lyme Literate doctor was the one who ruled it out definitively. Lyme is a great imitator - look in my signature and you'll see just some of the illnesses that Lyme can imitate.

I couldn't not share my experience. I remember being on the forum every day for a good while last year, desperately searching for some clue as to what I could have that may have been misdiagnosed as FMS/CFS. Any test I could ask my doctors to run that might lead to answers. Any clue as to a cure for FMS and CFS, if indeed I had been accurately diagnosed. It distressed me that sometimes people would just stop posting and never come back - had they died? Had they become so sick they couldn't type at all anymore? Had they gotten better and not bothered to tell us how?

There is good in the fact I was probably misdiagnosed. I will be forever sympathetic to the plight of those with FMS, CFS, IBS, CRPS, and other mysterious syndromes. There's always a reason, the doctors just haven't figured it out properly yet.

Also, I know that people with FMS aren't crazy. I can see that from your posts. Brain fog is understandable when you have a sleep disorder. Migratory pain can be due to a moving infection, and who knows what else. I now have quite a lot of knowledge about the physiological signs of FMS and the many distinct abnormalities in the body systems. I will never believe it to be a psychosomatic illness.

If it's Lyme that I have, then when I get better, I want to do research into fibromyalgia, its causes, treatments, and misdiagnoses.

I wish you all good well being of mind, heart and spirit, even if your bodies are in poor health. I wish you all to find good doctors who diagnose you correctly and treat you effectively with compassion. I wish all of your friends and family would be understanding and believe you are telling the sane truth when you describe your symptoms.
Posted 3/23/2014 6:44 PM (GMT 0)
Hi Jasmine

No havent been tested for Lyme - i think my doc would just look at me stupidly if i ask that...I am on waiting list for a CFS clinic to see a specialist, I might ask here about it - although I have never been bitten by a tic and i dont have any peculiar rashes

I strongly think mine is hormone related / i have adrenal issues...i need to get these under check

im still so fatigued, and my throat aches so bad..i believe like you there is a cause for everything, i need to find out whats causing this - i get a lot of ulcers also...its such a tangled web

I will give gluten free a go i think, my sisters symptoms cleared up when she tried this and she has had it for years, before there was a test, she has only just been tested and was positive

I have the brain fog and believe mine is due to sleep disorder, i am waiting to have sleep study done...

Just about to try juicing also to see if good nutirents and cleaner living help

Owww man, its so good to have you back..please be a fibro / cfs researcher and find out whats causing all our problems!
Posted 3/23/2014 9:42 PM (GMT 0)
Hi Wackers,

How did your symptoms start? Sorry, I can't remember... Did it feel like the flu? I never thought I was bitten by a tick - the tic that transits Lyme is so tiny and has a painless bite, most people don't notice when they're bitten by one. Also, there can be a delayed reaction (e.g. Days, weeks, months, even years) between when you get a tick bite and when Lyme symptoms start to manifest. Some people don't get any rashes at all... Constant sore throat can be part of Lyme. *I'm not saying that you have Lyme, but I am saying that it should be tested for because it is a possibility.

Your mouth sores could definitely be part of Celiac. By the way, 10% of people with Lyme also have Celiac which was triggered by Lyme. If you do have Celiac, then that would be causing problems with digesting and assimilating nutrients, so it is even more important to take high doses of nutrients. Keep doing smoothies if you're still doing them! Use varieties of different vegetables and fruits in the smoothies, and don't forget the magnesium and ezyprotein powders. If the doctors have done every test for Celiac and it still showed up negative, then I guess the only way left to find out is by the diet trial. It may change your life! Do it! Do your research properly as to everything that contains gluten - it's not just wheat, rye and barley you need to be careful of.

Good you're going to have a sleep study; shame you're still waiting! I encourage you to get a hair analysis test. I had one, and it revealed high levels of mercury, aluminium and a few other things. It also revealed a few mineral deficiencies and a copper overload. This enabled the pharmacist to make up a custom supplement for me that replenishes the supply of the minerals I'm deficient in, and I'm now taking Chelatox to help flush out the toxic metals.

Post Edited (Jasmine Grace) : 3/23/2014 3:46:35 PM (GMT-6)

Posted 3/30/2014 11:17 PM (GMT 0)
Hey Jasmine,
I'm so glad you got tested and diagnosed! I pray that your Lyme's was caught early enough and that the treatments will be successful for you. I have a good friend who has chronic Lyme's that she's been suffering with for many years but only recently got diagnosed. She's being treated now and will hopefully get better, but the Lyme's specialists tell her its unlikely to be completely cured since she's had it for so long and so much damage has been done.

I've also been tested - the standard Western Blot Test was negative, but that's not a conclusive test. They hand out disclosure forms here every time they do that test saying even if the test comes back negative, it's not a guarantee you don't have Lyme's. Comforting huh? ;-)

Anyway, I'm working with a naturopathic doctor now who did some more in depth testing looking at all the possible co-infections and the bands within Lymes that aren't normally tested. I came back positive for 4 or 5 of those (I think there are 12 total). So now they are treating me for Lymes. We're starting with herbal anti-fungals and anti-virals. I've got 6 more weeks of those (18 pills a day! ack!) to see if that works before we try more aggressive prescriptions and tactics.

The doctor did say I definitely still have Fibro, but hopefully if we can get the Lyme's cleared up, maybe I'll start having some luck getting the Fibro manageable. I started having symptoms 1.5 years ago (just after returning from a 2 month trip to Australia!) and nothing we've tried has gotten it under any sort of control.

Anyway, Good luck with your Lymes treatments, Jasmine!

Have a blessed day
Mari
Posted 3/31/2014 12:05 AM (GMT 0)
Hi Philippians,

It's great that you're finally getting some answers too! I really hope that the natural treatments fix it for you :)

I want to go as natural as possible with my Lyme treatments, although I will probably use a combination of natural and conventional medicine to get better.

So you might have gotten Lyme in Australia, the country where "Lyme doesn't exist here" even though you mostly live in a country where Lyme is recognised as being?

Lovely to hear from you Mari :) you have a beautiful name
Posted 3/31/2014 5:17 PM (GMT 0)
I am in this situation now as well. I have been bitten by ticks (albeit a decade ago) and my pain specialist is recommending I get Lyme disease tests.

I am in such an insane amount of pain with so much inflammation, in addition to a herniated disc. It is such a disturbing thought that maybe Lyme has been flowing throughout my system for a decade+

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