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The Lyme Disease Thread


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#871 purpleflowers

 
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Posted 01 October 2010 - 08:58 AM

I can see why he ordered additional testing as that test is really indeterminate. My daughter had a test like that, so we did a trial run of abx and she responded to it, so that was confirmation of her diagnosis.

But you did have IND on important bands.


so maybe this is why he is trying me on a course of antibiotics?
I got frustrated and said to him...." do I have Lyme or dont I?" because you can tell he wasnt sure for sure. He knows I am fed up and get frustrated easily so he just quietly said " here is a script for some antibiotics, just take them and see me in a month"

its only been 5 days of it and I feel it wiping me out.I hate antibiotics and I am very against them, but I am trusting him and doing what is needed to diagnose me. I didnt tolerate the Doxy at all.Puked it all up in the first dose,so he had to change it.

Did your daughter have a worsening of symptoms at first in the beginning of the antibiotic treatment? then responded positive?

Thank You
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#872 mommyto3

 
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Posted 06 October 2010 - 11:25 AM

Can somebody provide me with the name of a lab who tests (reliably) for Lyme? I've read about a lab in California but I can't find the name. I'm in Canada and I have a lot of the symptoms. I know when I go to my doctor she is going to give me a hard time (she's not very approachable) so I want to research the testing on my own to prepare in case she won't test me for Lyme.

Thanks in advance!
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#873 CarlaB

 
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Posted 06 October 2010 - 03:43 PM

Yes! It is normal to feel worse before you feel better. It's called a herxheimer reaction. That is how we made the confirmation of the diagnosis.

IGeneX is the lab in CA that tests for Lyme.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#874 Lizking531

 
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Posted 08 October 2010 - 05:51 AM

Hi ya'll! I've been lurking around celiac.com for some time now, but just recently stumbled upon this thread. Little did I know about the controversy & difficulty regarding testing for Lyme. It really makes my head spin now.

I spend a lot of time outdoors - backpacking, hiking, hunting, etc, etc. I have had plenty of run-ins with ticks. Probably about 5 years ago now, I was turkey hunting int he spring & rolled up a tick in my sleeve. It bit the top of my forearm multiple times (you could see the marks). Once I felt it, I removed the tick. In about an hour, the bite location was swelled up like half a golf-ball was under my skin - big round lump. By the time I drove home, I felt like I had the flu - super tired, achy, etc. I went to the doc & he gave me some sort of antibiotic to take for a week or so & just told me to keep an eye out for rocky mountain spotted fever. This was probably about a year or so before any of my GI symptoms started. I have been tested by my doctor's office for Lyme, but not sure of what the test was.

I guess I just wondering now if I've been looking the wrong way the whole time. Should I investigate Lyme in my case more? If so, what testing should I look into? and How can I find a good doctor around Louisville, KY?


Here's a link to a thread about my GI symptoms, etc -

http://www.celiac.co...an-apple-a-day/
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#875 CarlaB

 
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Posted 08 October 2010 - 05:59 AM

Yes!! I landed on Celiac.com because my symptoms looked so much like celiac disease!! I had terrible gut symptoms and was severely reactive to gluten. Some people with Lyme have their celiac triggered by the tick bite, so they end up with both.

If you go to "www. Lyme net . org" (take out the spaces) there is a section of that forum where you can ask for a referral.

After treatment my gut is now pretty much healed and I am no longer sensitive to gluten, though I don't eat as much flour as I used to, I mostly stick to sprouted grains now.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#876 CarlaB

 
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Posted 08 October 2010 - 06:05 AM

I just went over and looked at your symptoms .... the salad thing was the same for me. I could eat no raw food, not fruit or veggies. In fact, at my worst, everything went through the blender or I got terrible cramps. I was digesting little. I am getting better with raw foods because I have worked on rebuilding the good bacteria in my gut now that the bad stuff and parasites are gone, but I still get cramps if I eat too much salad .... I stick to side salads, it can't be a meal. Other than that, I'm symptom-free .... I came a long way from being bedridden/housebound.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#877 Lizking531

 
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Posted 08 October 2010 - 07:38 AM

I just went over and looked at your symptoms .... the salad thing was the same for me. I could eat no raw food, not fruit or veggies. In fact, at my worst, everything went through the blender or I got terrible cramps. I was digesting little. I am getting better with raw foods because I have worked on rebuilding the good bacteria in my gut now that the bad stuff and parasites are gone, but I still get cramps if I eat too much salad .... I stick to side salads, it can't be a meal. Other than that, I'm symptom-free .... I came a long way from being bedridden/housebound.



Thank you very much. I've been perusing that site. A lot of this makes sense. I can relate to so many of the symptoms on here. Although so many of these symptoms are the same for so many different things, I feel like this may be shedding a bit more light on what I'm going thru. Honestly, I kinda scares me, but I can't really ignore it any longer.
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#878 CarlaB

 
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Posted 12 October 2010 - 04:43 AM

Thank you very much. I've been perusing that site. A lot of this makes sense. I can relate to so many of the symptoms on here. Although so many of these symptoms are the same for so many different things, I feel like this may be shedding a bit more light on what I'm going thru. Honestly, I kinda scares me, but I can't really ignore it any longer.


We talked over there .... I don't use that name here or this name there ... :)

You may want to look into parasites, too. When the body gets weakened, you get opportunistic infections that healthy people can fight off. That is probably why so many systemic diseases have the same/similar symptoms.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#879 Coolclimates

 
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Posted 01 November 2010 - 09:28 AM

My mom and I were wondering if there was a correlation between Celiac and Lyme Disease. I was diagnosed with Lyme Disease in the fall of 2001, right after Sept 11. I had been to a rural part of New Jersey in August and was staying in a nasty bug and animal infested house. As soon as I got back to Nebraska (where I lived at the time), I felt awful. Main symptoms were extreme fatigue, bad headaches, dizziness, body aches and weakness. I remember that it felt like a real effort to walk from one end of the room to another. I was immediately suspect (when I was in New jersey, everyone was talking about Lyme Disease and how prevelant it was there). I got tested and sure enough it was Lyme. The strange thing is, I had no rash and I never knew where I was bitten. I'm guessing I was probably bitten through the hair on my head while I was sleeping in that disgusting house (and this was the house that they put the teachers to stay in! I can't imagine what horrible places the students must have stayed in). I was put on 1 month of strong antibiotics. It took several months for me to feel well again. There were days I felt just fine and others where I felt pretty bad. The annoying thing was that I got very little sympathy from others. Most people said I looked just fine so they didn't get it that I felt horrible. Also, it's not very common in Nebraska and many people were pretty ignorant about it.

In May 2010, I was diagnosed with Celiac disease. I've had similar symptoms as Lyme disease, but not as severe. Mainly just fatigued all the time, insomnia, some headaches and sinus aches. But I wonder if I had Celiac disease already when I got the Lyme disease back in 2001. Or if the Lyme Disease actually triggered the Celiac. I guess I will never know. But it is interesting how a lot of people with Celiac have had Lyme disease as well.
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#880 CarlaB

 
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Posted 16 November 2010 - 10:50 AM

The Lyme can be a trigger for the celiac just like any stressor can.

Mainstream medicine will only treat Lyme for a month, but often it requires longer treatment. Also, it's considered remission when you are feeling better, so if you're feeling bad now, you may need more Lyme treatment. Testing won't show if the disease is active or not, only exposure, so unfortunately, there isn't a blood test that can show you whether your Lyme is active again.

There are herbs you can take if you don't care to go back on antibiotic treatment, which is hard on the gut, especially since you're already fighting celiac.

Interestingly, I was first thought to have celiac disease. Then the testing came out negative, but I had improvement on the gluten-free diet. Then the improvement stopped and I backslid. Eventually I discovered I had Lyme Disease and with treatment the gluten intolerance went away ..... that wouldn't happen with celiac. It's just interesting.

I still cook a lot of gluten-free meals .... after two years of no gluten, it becomes habit and I find I like them better.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#881 scotty

 
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Posted 28 December 2010 - 07:19 PM

after a couple years, i am miserable and cannot figure out what is bothering me. i feel like im worse than before i began treatment. it could be the antibiotic...and dr suggested i could try taking them through a shot once a week (thus to avoid my digestive system, which creates problems with most abx that I have tried).........

i was wondering if this is common: that the ~only~ antibiotic that works actually stops working?

thanks in advance,
Scotty
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*D-Digestive problems throughout youth and young adulthood unattended
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*Winter '06 developed severely swelled legs with rashes, white tongue
*Self-diagnosed; Gluten Free Spring '07
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#882 sceptre

 
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Posted 06 April 2011 - 10:26 PM

Hi,

I'm new to this board and I'm happy to see there so much support and information from it!

I have a question, if anyone would happen to know it.

My sister has had peripheral neuropathy (burning/tingling/vibration in hands/feet and other places) for ~2years, and recently, she did the Igenex test.

Here were the results:
IGM:
31 ++
41 IND
83-93 IND
Rest negative

IGG:
30 +
39 IND
41 ++
Rest negative

CD57 Count: 37

The above doesn't classify as a true positive, but I was wondering if people had some thoughts/insight into the above results?

Thank-you.
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#883 knivhoj

 
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Posted 13 July 2011 - 02:48 AM

This is a very interesting thread. I've been gluten free for almost five years (self diagnosed) and staying off gluten seems to improve my immune system. Two years ago I was tested for lyme disease, and the test was negative, so I was happy (not knowing anything about how difficult it is to test for lyme disease). But my doctor did notice a very low IgM value, and several other tests later still showing IgM deficiency.

As I understand it, an IgM deficiency can be an indication of an autoimmune disease, so I suggested to my doctor, that he did a celiac test. A couple of months ago I prepared for the test doing a four weeks gluten challenge. My ttg blood test was negative, but my symptoms suggested a non celiac gluten sensitivity. Good to know, and easy for me to return to my gluten free diet. But my symptoms would not go away again, and they got worse after a tick bite. I did not get the bullseye rash, but symptoms were felt while the tick was sucking blood from my leg. I have almost always lived in a high risk area, and have had hundreds of tick bites before this one. The ELISA test for lyme disease is now positive.

The interesting thought is, did I get lyme disease because gluten had weakened my immune system, or am I gluten intolerant because I have lyme disease? I am currently doing a three weeks doxycycline treatment, and if it helps, I am willing to try to eat gluten again.
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#884 CarlaB

 
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Posted 26 July 2011 - 05:01 PM

Hi,

I'm new to this board and I'm happy to see there so much support and information from it!

I have a question, if anyone would happen to know it.

My sister has had peripheral neuropathy (burning/tingling/vibration in hands/feet and other places) for ~2years, and recently, she did the Igenex test.

Here were the results:
IGM:
31 ++
41 IND
83-93 IND
Rest negative

IGG:
30 +
39 IND
41 ++
Rest negative

CD57 Count: 37

The above doesn't classify as a true positive, but I was wondering if people had some thoughts/insight into the above results?

Thank-you.


With symptoms I would bet a lyme doctor would give a diagnosis based on this test. It's a clinical diagnosis. Bands 30 and 31 can actually be retested to clarify whether it's positive from Lyme or from cross-reactivity.


This is a very interesting thread. I've been gluten free for almost five years (self diagnosed) and staying off gluten seems to improve my immune system. Two years ago I was tested for lyme disease, and the test was negative, so I was happy (not knowing anything about how difficult it is to test for lyme disease). But my doctor did notice a very low IgM value, and several other tests later still showing IgM deficiency.

As I understand it, an IgM deficiency can be an indication of an autoimmune disease, so I suggested to my doctor, that he did a celiac test. A couple of months ago I prepared for the test doing a four weeks gluten challenge. My ttg blood test was negative, but my symptoms suggested a non celiac gluten sensitivity. Good to know, and easy for me to return to my gluten free diet. But my symptoms would not go away again, and they got worse after a tick bite. I did not get the bullseye rash, but symptoms were felt while the tick was sucking blood from my leg. I have almost always lived in a high risk area, and have had hundreds of tick bites before this one. The ELISA test for lyme disease is now positive.

The interesting thought is, did I get lyme disease because gluten had weakened my immune system, or am I gluten intolerant because I have lyme disease? I am currently doing a three weeks doxycycline treatment, and if it helps, I am willing to try to eat gluten again.


I would bet gluten sentivity as a result of Lyme. Once I treated Lyme, my gluten sensitivity went away.





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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#885 cait

 
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Posted 11 September 2011 - 07:37 AM

June/July 2001, during a time when I was working in the woods and doing a lot of biking on various trails, I developed a bullseye rash, then fever. Since I had minimal health insurance then, I went to a college health clinic and was told it was not lyme. They gave me a course of ammoxicillin for whatever the infection was. I took a dose and quickly spiked a much higher fever and stronger symptoms (herx, anyone?). They changed my antibiotic to augmentin, I improved enough, continued to wonder if it had been Lyme, but couldn't do anything about it, so hoped for the best.

After a few years of going to doctors for ongoing fatigue and other vague symptoms (and being told "as you get older sometimes you have less energy." At the age of 24.) someone finally tested me for Lyme, and it was positive. I ended up with a LLMD, and went through years of treatment without major improvement. I finally decided that I probably just had residual damage from the Lyme, and that I just had to deal with it. Last spring, after a year of increasing GI trouble and ridiculous pain and fatigue, I eliminated gluten. My dad has celiac, so it seemed like a logical thing to try even though my blood tests were negative. It was the first thing in 10 years that really made a difference (other than IV rocephin, which my insurance stopped covering, leading to a return of symptoms). I figured maybe a good bit of the stuff I'd attributed to Lyme was actually gluten related.

I'm still up and down a lot, especially with the return to the school year. I've been wondering if there are other intolerances going on, and now that I've read bits of this thread, I wonder if Lyme is still a player. How does one even begin to sort all of this out?
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Dad has Celiac
Neg Celiac tests, positive gene test
Life vastly improved off gluten
Dunno what that makes me, but I'm not going back.
Now corn, soy, and dairy free




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