posted
Wondering if my daughter may have had Lyme for the last 5 years instead of "colitis".
I've read that Lyme can "settle" in the gut and give GI colitis symptoms.
I happened to get her a CD-57 and it is 20
Wondering also if Crohn's/Colitis patients ALSO CAN HAVE A LOW CD-57 NK?
Trying to put her puzzle together!
-LAXlover
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i suspect both my sisters have Bb and have only been dx with colitis...they reject lyme dx so wont even be tested or they agree with doc when elisa is neg...they have many othe bb sx...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Check out the symptom list for parasites at Humaworm. It can be a co-infection of Lyme and is often overlooked. Most docs, even LLMDs are not aware of this. Many digestive symptoms are caused by parasites. Do a search on here for parasites as well.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I was diagnosed with Crohns Disease 17 years ago, white matter brain lesions 5 years ago, Hashimoto's thyroid 2 or 3 years ago, primary sclerosing cholangitis (liver failure) 3 years ago. Lyme this past July.
Started taking LDN, treated the Lyme starting this past summer. Lost 35 pounds, more energy, no Crohns/liver/thyroid issues. I am convinced that my Crohns (and the rest of my "diseases") are at least partially if not completely related to my Lyme.
Good thing I didn't listen to the expert GI doc in Boston. If I had, I would have someone else's liver instead of my own. Idiot. As for your daughter, you have to keep liver issues in mind when it comes to IBD. They often walk hand in hand.
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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CountryMouse -- what an amazing story...remarkable you are!!
Were you taking meds for the crohns during those 17 years? what kind?
How are you now fighting the Lyme?
We have given my daughter LDN but each time she ends up with cellulitis, or it just happens to coinside..... why I don't know.
Took daughter to LLMD and we are re-running a lot of tests, including co-infection IGeneX. Her ped ordered the new test from "advanced lab" in PA and we'll do that one too.....costing me a fortune!!!
-LAX
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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posted
Excellent that you are getting the additional testing for your daughter. Really great to be able to get the whole picture. I know it is expensive. I am collecting all my bills in preparation for tax returns lol!
I was on many drugs for Crohns. Started with straight prednisone when first diagnosed. Tried asacol and similar drugs but was allergic/intolerant. Imuran for two years until I ended up with severe asthma as a result so I quit that. Flagyl, cipro both worked for awhile but eventually stopped working. Entocort (topical steroid) for almost 8 years.
The two drugs that helped me the most were Xifaxan (an antibiotic used off-label for CD) and LDN. Once I stopped all meds and went on LDN, I never looked back.
Since mid summer I have been taking doxycycline for the Lyme and the LB Core Protocol tablets, although I have been off everything (except LDN)for several weeks in preparation for laser procedures to correct skin discoloration that happened when my liver was failing (ended up with red blotches all over my body). Now that the procedure is done and I am healing from that, I will restart the LB Core Protocol until my next appt in 3 weeks.
As for a correlation with your daughter and cellulitis, you could try either compounding the LDN with another filler or try the liquid dilution method if you are already compounding. Maybe she is having a reaction to something else in the tablets. I do the liquid so it absorbs more easily by my poor scarred up gut. If she is able to hang in there with it, I started seeing results in my CD in 3 weeks with LDN and complete remission in 6 weeks. It's been since April and I am still in remission. Keep in mind that there are a lot of formulations on Naltrexone depending on which generic you get, so you may need to try a couple to get the right one. You're right, it might just be coincidence too.
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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posted
Hello....I was diagnosed with crohn's 23 years ago. I have weird neuro problems and arthritis most of these years. I was on biological medications and steroids. This negatively affected my lyme. I get so upset to think if I was juat given abx at my illness' onset. I know I just need to move on and concentrate on getting well.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Gatorade I know how you feel. I knew I had Lyme but had so many negative tests, and they kept telling me the arthritis was from the CD. So they give us STEROIDS, rolling out the red carpet for the spirochetes to dance down...right into our major organs. Grr!
Our immune systems were smarter than all the docs we saw put together. They knew what was up. Now you are right, we need to focus on supporting our immune systems so they can finally do their job. Getting mad doesn't help that. I have to remind myself of that A LOT so you aren't alone
LAX, is your daughter a teen or younger? How long has she had colitis? I wonder if cellulitis is a Lyme symptom?
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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posted
Oh LAX I also went gluten/wheat/soy/peanut free a couple of months ago and feel much better. I had been allergy tested and found out what I had to avoid). Eggs I am supposed to eliminate but I have not removed them yet. Also dropped more weight when I changed my diet, presumed to be inflammatory water weight from eating food allergens.
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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posted
I believe gluten really affects me. It is funny how all the gi drs I went to recommended saltines, bread, etc.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
My dd, age 13 now, (sick since age 8) has been on SCD and gluten free since 8/07 and I began SCD 7/30 of this year. I feel SO much better NOT eating gluten, sugar, and all the other bad carbs that the gut has trouble digesting!!!!! and I've lost about 13 lbs which is nice for me.
Yes, gatorgirl, it IS very FUNNY that GIs recommend all that gluten......job security IMO!!!!!!hahaha
glm1111, I checked out the HUMAWORM site and it makes me want to give it a try, maybe during an antibiotic break in the future....how did it work for you? I DO believe we ALL have these critters.
I would be hesitant about doing the protocol on my daughter though.
Countrymouse, I am also with you and gatorade girl about being upset that my daughter was put on high doses of prednisone in the beginning and never even had her TRY some antibiotics 5 years ago :-( but, yes, we do need to try to pick up the pieces, educate ourselves, and move forward.
I did find info about Lyme rashes being misdiagnosed as cellulitis....
Has anyone with CD/UC done the CD57 test?
I was researching and believe the CD-57 CAN be lowered by CD/UC, but not Celiac. Please don't anyone quote me on that, but I was reading a thesis online which came to this conclusion.
I just hope all the bloodwork that we recently did for my dd will shed light on whether she has Lyme or not....I hate the waiting and all the debate of below-par testing. I believe this week we will do the new test that came out this month through Advanced Lab. Dr. B was involved with this so I hope it's a good one. When I called the lab they said it can dedect old infection. Let's hope!!
-LAXlover
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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could be several things: parasites, from allergic reaction, eosinophilic gastroenteritis according to what I see on line....and some other "scary" stuff
She's on sulfasalazine 1/4 pill and flagyl and vomited tonight
posted
Second round of results came by phone tonight at 8:00 P.M.
Retested LabCorp WB -- positive
......after 5 years of colitis
......and many Lyme tests.
-LAXsniffle
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yeah. I got diagnosed with Crohn's-Colitis in 1988 (bleeding fistula, severe diarrhea, etc.). Turns out what was really going on was an amebic infection in my gut (2% of cases present with fistula where I had mine), plus a bunch of other stuff, caused by Lyme - but I didn't know anything about Lyme in those days. Wasn't diagnosed with Lyme until 2007...
Flagyl can be hard to handle. I started with 1/4 tablet and was herxing like crazy from it. So the vomiting could be a herx. Lyme is downright mean.
Glad you finally got a positive test, though.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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