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The Lyme Disease Thread


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#31 Cruiser Bob

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Posted 12 July 2007 - 03:54 PM

Hi Bob- Welcome! I had "tennis elbow" (uhm? I don't play tennis) so badly i couldn't use JUST my right hand to hold anything even remotely heavy (like a skillet). It started in january and strangely enough....first thing to just COMPLETELY disappear since I started the abx.

Good luck with the testing!

Andrea- You can hang around but NO LYME FOR YOU! :P


I'm surviving right now with the TENS machine, Requip, Halcion & Ambien. Just waiting about a week for GI & MRI results, then I'll move on to the next step, whatever that might be. At least the scopes showed that my insides "look" good for 45. My buddy of 20+ years and I were talking the other day - we figured I'm at about 70% (maybe) of what the "normal" me functions like. It just plain old sucks no matter how you slice it, except I eat like a pig and stay skinny :). Bob
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#32 CarlaB

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Posted 12 July 2007 - 04:01 PM

I know what you're saying ... my teenage daughter and hubby have to be crazy with me eating all the time (with no appetite, it's just because I need to take meds and they force feed me), while they both have to watch their weight.

I think it's good that you are on the ball enough that you've "only" gotten down to 70% ... I know it seems low ... that's about where I am, and it's frustrating. Once you figure out what it is, I bet you'll rebound fast.

I'm 44 ... it would be easy to blame 70% on age ... but I KNOW better.

What's a TENS machine?
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#33 Cruiser Bob

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Posted 12 July 2007 - 04:25 PM

I just figured out the Avatar stuff too - that's me.

TENS = Transcutaneous Electrical Nerve Stimulator, or electric current to mask the pain sensors. It's a $39 machine, but the pads are expensive. For now, I can actually sit at the computer and/or drive without too much pain sensation it's only a short term mask and way better than taking more drugs.

Bob
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#34 Guest_micah_*

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Posted 12 July 2007 - 08:14 PM

You are very welcome. Are you diagnosed with celiac or just considering that possibility?


I am just considering the possibility...after 9 years of being very sick and getting absolutely no help from doctors, I'm striking out on my own to find out how to get better. So far I've found quite a bit of improvement from going gluten and egg free for about 3 weeks. Still hoping for more improvement though.

Thanks for the info on this thread Carla.

Micah
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#35 mftnchn

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Posted 12 July 2007 - 08:35 PM

Bob, that's a great pix. Bob and Carla--70% is pretty good, and that's a great shift from 15% Carla. It took me a lot longer those first months of treatment. I think I am 50-70% this past two weeks. Was 30-50% for most of June. ABX are really helping.

Micah, I am glad the diet helps. Have you been strict gluten free?

I am trying to tease out for myself what is celiac and what is lyme related, or something else. Seems like it is a lot of guess and trial and error.

Here's just a couple more thoughts:

I'd be sure you are totally gluten free because some celiacs so super sensitive to the most minute amount even cross contamination and in personal care products. Sometimes more symptoms clear when you are strict enough.

Then there can be other food sensitivities. My allergist said the grains are the most notorious for cross-reacting. So you could try a week or two grain free and see what happens. Dietary trial is far more accurate than blood, stool, skin testing.

The other thing is that a lot of us have candida problems, so cutting sugar and taking probiotics could help.

Keep us posted!
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4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#36 little d

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Posted 12 July 2007 - 11:22 PM

I have sixteen symptoms listed

donna
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Fecal Antigliadin IgA 21 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)
Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

#37 Guest_micah_*

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Posted 13 July 2007 - 12:44 AM

Bob, that's a great pix. Bob and Carla--70% is pretty good, and that's a great shift from 15% Carla. It took me a lot longer those first months of treatment. I think I am 50-70% this past two weeks. Was 30-50% for most of June. ABX are really helping.

Micah, I am glad the diet helps. Have you been strict gluten free?

I am trying to tease out for myself what is celiac and what is lyme related, or something else. Seems like it is a lot of guess and trial and error.

Here's just a couple more thoughts:

I'd be sure you are totally gluten free because some celiacs so super sensitive to the most minute amount even cross contamination and in personal care products. Sometimes more symptoms clear when you are strict enough.

Then there can be other food sensitivities. My allergist said the grains are the most notorious for cross-reacting. So you could try a week or two grain free and see what happens. Dietary trial is far more accurate than blood, stool, skin testing.

The other thing is that a lot of us have candida problems, so cutting sugar and taking probiotics could help.

Keep us posted!


As far as I know I'm being strict, except for I didn't replace all of my pans, just cleaned them real well. I'm not Dr. Pepper-free ;) , which is my weakness - I'm sure all the stuff in that can't be very good, but it's my favorite thing - lots of sugar though. My only grains are rice and corn. Perhaps I need to cut out those? Probiotics are in yogurt right? Is that enough? At least now I know for sure that gluten is part of the answer for me because I can't believe how the brain fog has lifted and these other weird symptoms of tingling and tremors seem somewhat better - for the first time in 9 years I have a little control yay! I still can't stand or walk very well, but hopeful. I've always been the smallest one in my family and never gain weight. Thanks for the suggestions - do you think I need to replace my pans? - they are steel except for my one teflon-type coated one.

Lyme has been one other thing I have suspected - my doc put me on 6 weeks of doxycycline once for pansinusitis and towards the end I started to feel some improvement in some of my ongoing symptoms and the weakness, but he wouldn't continue past 6 weeks and I quickly got worse again when I stopped the antibiotics.

Micah
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#38 dlp252

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Posted 13 July 2007 - 06:20 AM

Yeah, I can't do any grains, not even rice or corn. :( Sugar is bad too...feeds all sorts of stuff. :P
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#39 CarlaB

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Posted 13 July 2007 - 07:33 AM

I have sixteen symptoms listed

donna


This is not directed to Donna in particular, but I wanted to mention, there is a LOT of overlap of Lyme and celiac symptoms. In fact, candida and heavy metal toxicity, too. So, if you have some of the symptoms, it's a possibility to explore, but it's not a diagnosis. I don't think anyone is taking it as one, but I wanted to point out there are other health problems with similar symptoms.


I'm not Dr. Pepper-free ;) , which is my weakness

Candida has a lot of similar symptoms ... plus, sugar feeds Lyme. Artificial sweetners are very bad ... I'd try to find something else to drink. ;) :D What about Propel to help you transition. It only has 2 grams of sugar per serving but still is quite sweet. It's not ideal, but it's a heck of a lot better than Dr. Pepper.

Lyme has been one other thing I have suspected - my doc put me on 6 weeks of doxycycline once for pansinusitis and towards the end I started to feel some improvement in some of my ongoing symptoms and the weakness, but he wouldn't continue past 6 weeks and I quickly got worse again when I stopped the antibiotics.

I would definately suspect Lyme because of this.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#40 CarlaB

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Posted 13 July 2007 - 07:38 AM

Bob and Carla--70% is pretty good, and that's a great shift from 15% Carla. It took me a lot longer those first months of treatment. I think I am 50-70% this past two weeks. Was


Yes, I'm really happy about the 70%. I'm herxing right now and am about 50%, so that's a HUGE improvement! I'm glad you are improving, too.

I am thinking that because I had my amalgams out 16 years ago and chelated, that I don't have as many complicating factors to getting better. I have a little heavy metal toxicity and we are chelating right now.

I also was aware of proper detoxification for the past 16 years, which I think helps because my body is capable of getting rid of the bad stuff. I've been using my far-infrared sauna since before I was diagnoses, as well.

It's funny, much of my day is focused on healing -- exercise, sauna, coffee enemas, etc. Plus, the regimen of supplements, meds, probiotics, chelators, etc. I also try to go on long walks after dinner.

It's not just getting rid of bugs, it's getting healthy.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#41 Guest_micah_*

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Posted 13 July 2007 - 05:45 PM

You said somewhere that lyme is a "clinical diagnosis." I'm wondering, what is it in the blood test that suggests lyme? Is it not just a positive or negative test? Is it possible to have a negative test and the doctor still diagnose lyme?

Micah
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#42 AndreaB

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Posted 13 July 2007 - 05:49 PM

Micah,

I don't have lyme but from what I understand is you can have negative WB's and still have lyme and have it diagnosed as a clinical diagnosis.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#43 CarlaB

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Posted 13 July 2007 - 07:01 PM

You said somewhere that lyme is a "clinical diagnosis." I'm wondering, what is it in the blood test that suggests lyme? Is it not just a positive or negative test? Is it possible to have a negative test and the doctor still diagnose lyme?

Micah

The blood test is a Western Blot. If you have one done, it needs to be done by IGeneX.

There are several bands they check ... both IgG and IgM. The tests require interpretation because some bands are Lyme specific and some are not.

Some people who are very sick with Lyme will have negative tests because their immune system is too tied up to have antibodies show up on the test.

Many (probably most) doctors don't really know how to read the Western Blot, so it's important to take it to an LLMD.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#44 Guest_micah_*

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Posted 13 July 2007 - 08:20 PM

Okay, thanks....now this may sound dumb, but who interprets the WB - my doctor or IGENX?

Micah
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#45 mftnchn

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Posted 14 July 2007 - 01:13 AM

As I understand it, the reason lyme is a clinical diagnosis is that the blood tests are still not totally reliable. So you need an LLMD and he looks at your history, symptoms, testing, and response to treatment to confirm the diagnosis.
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4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels


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