Lyme Disease and Crohns or Lyme Disease and not Crohns

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hspenser
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Date Joined Dec 2005
Total Posts : 544
   Posted 3/10/2009 8:45 AM (GMT -7)   
has anyone else looked into ro considered the idea that their non-responsive to treatment Crohns may actually be a symptom of Lyme Disease.
 
I have been reading up on this disease and the indicators and connection of long term Lyme Disease and crohns disease is amazing.
 
I know that at one point years ago I was tested for Lyme...it came back negative.  Now I learn that as much as 35% or higher of the tests for Lyme test false negative.  It may be the fastest world wide growing disease we face today.  In the US they feel that the the unreproted and discovered cases of Lyme disease may be almost 10 times higher than the number reported.
 
Many of the symptoms of Lyme disease are the same as Crohns and crohns is listed as an overlapping disease or one of the top misdiagnoses of Lyme...along with several other diseases and illnesses, such as MS, Parkinson's, Lupus, ALS, Gout, Hep, Rheum. arthritis....and a few others.
 
Many of the symptoms are issues that we have either experienced ourselves or read about as unexplained side illnesses that folks on this board have suffered with.
 
Just throwing this out there to if anyone else has ever tried to connect these dots?
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 3/10/2009 9:20 AM (GMT -7)   
What does your pathologist say?
I just do not know, I know there are alot of overlapping symptoms.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 3/10/2009 9:57 AM (GMT -7)   
Actually ...i am going to my gastro in two weeks and will discuss it with him then...then maybe discuss it with my primary so that I can get a referral to a pathologist.  
 
one of the associated symptoms to Lyme is bells Palsy....I had BP just prior to the time that my gastro issues started.....the associated list goes on and on...arthritis, coming and going of severe night chills w/o the associated fevers, joint pain, ...the list goes on and on
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 3/10/2009 11:07 AM (GMT -7)   
yeah Good question, spenser ! This is certainly something that I have thought about, repeatedly. I consider myself to be in a high risk category for Lyme's Disease; many known bites over a period of many years from a wide variety of locations, some of which are known to have endemic Lyme's, with ticks often only discovered after a long period of feeding and the wrong removal procedures used.
The reason that I am not so worried that I may have Lyme's Disease is subtle but distinct. To begin with I was very concerned as I began to learn more about Lyme's Disease; the risk is evidently higher than I had been trained to recognise, as is the level of hazard. But on balance, I just felt, "No, this is not what I have." When I thought about why, it was fairly obvious to me; on the Lyme's Disease forum there is a much wider range of neurological disorders/symptoms prevalent amongst complainants than here on the CD forum; these are much more acute in presentation and severity, and tend to have much worse outcomes than those reported here. It seems to me that on the Lyme's Disease forum, typically the patient will spend a long time ill, and will have many or a few severe neurological symptoms, and that things in the absence of an LLMD will often deteriorate quite steadily, with the occasional sudden flareup of worsening symptoms due to a trigger. Stomach problems seem to be quite severe, but more often a side dish rather than the main menu, if you see what I mean.
If you look at the percentage of CD sufferers with severe neurological problems, then look at the percentage on the LD forum, perhaps that will give you a better idea of what I am trying to say.
I am very much aware that this view may simply be an artefact of the fact that I am "happy" with my diagnosis of Crohn's Disease, and do not want to have to worry about having Lyme's ! It is evident to me that there is an overt element of "I don't want to think about this" in my attitude. And I am certainly convinced that there is certainly scope for people to be infected with Lyme's, and it to be considered a gut disorder, as a result of the diagnostic mess that is the field of gastroenterology as practised by many doctors at present. Lyme's is always there as a possibility in the back of my mind when reading new Crohnie's posts. (And far closer to the front of my mind, I can tell you, when I am visiting the Chronic Fatigue forum. There are a few people there that I have read their initial post and immediatedly thought, "Lyme's ? !" yeah)
The thing that I always try to keep foremost in my mind is that however nebulous the symptoms' pattern of presentation may be in a disease - there still always tends to be a character in an illness. It may be fickle in what shows up, it may be fickle in who gets what when, but there is still always a "core activity" if you like that seems to be distinguishable for a given bacterium or illness/syndrome. Diagnosis is not just about symptoms, but when and how severely they occur over time. Otheriwse, we could read a medical dictionary and die of despair...!
wink Just my tuppence worth, not really what I'd call a deeply researched/reasoned argument.

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 3/10/2009 11:46 AM (GMT -7)   

I hear you snohare....you bring up some good and valid points.  It seems that this person who did the most recent church shooting...Illinois i think...may have just recently been dx'd with Lyme Disease.

But...before you we rely too much on the folks who are dx'd w/ LD as the example of what to expect...we need to take note of the belief by the experts that at least 35% of the time folks are tested for the disease they test negative...usually if you test positive you will always do so...but if you test megative and still have it...you also will usually always test negative.  On top of that the ratio of unreported cases versus reported/verified cases seems to about 10 to 1.

In my search of the web I found 1 article that stated that if it were not for HIV...Lyme Disease would be the #1 world wide concern.  This disease is spreading rapidly and many in the field feel that thousands of people have been living with it for years w/o knowing it...that too many doctors either don't test because they are under the false impression that it only occurs in certain areas and others dismiss it based soley on one or two tests that have at best a 65% accuracey rate.

Not sounding the chicken little alarm here...but doing a little research on the web has really opened my eyes first ...to how wide spread and how much worse this disease than I thought and secondly...so many of the associated symptoms are going on inmy life or have occurred that I feel compelled to explore it a bit further.  Of the 100 known and associated symptoms I have experienced or continue to experience on a serious level at least 25...   On the other side of the coin....many of those issues that i have experienced or continue to experience are what many on here normally associate with crohns.

 


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


imagine4dreams
Regular Member


Date Joined Oct 2005
Total Posts : 22
   Posted 3/10/2011 5:44 PM (GMT -7)   
I just came across your post as I was researching "lyme and crohn's disease."  I was just diagnosed with lyme disease on Monday.  My primary care doctor has found that the majority of patients with autoimmune disease also have tested positive for lyme disease.  I was shocked as one of the tests checks your antibodies to the particular lyme bacteria and should be between 60-360.  I am actually at 7!  Yikes!  I didn't even have lyme in my radar.  So that means that I have chronic lyme disease.  For as long as I can remember I have been sick, probably since my teens and I am now in my thirties.  I had an episode in college where I had a rash on my neck and suffered with flu-like symptoms, but it wasn't a bullseye rash so I don't even know if it's related. 
 
I have been researching a ton this week and am definitely coming across a correlation.  No two cases of lyme are the same;  there are so many different types of symptoms that I read lyme could be misdiagnosed as 300 different diseases!
 
I did contact my GI as I am mostly likely going on antibiotics (and then hopefully following an herbal route) and he was fine with that.
 
   

Dazey88
Regular Member


Date Joined Jun 2011
Total Posts : 35
   Posted 6/18/2011 12:21 AM (GMT -7)   
*bump*

This is very interesting as my symptoms are becoming more neurological by the minute. I was bit by something on a trip to Mexico that made my leg swell up and had to go to the ER. Since then I have been having symptoms -brain fod and fatigue. And I get hit with joint pain and eye pain, D, and a lot of other weird sensations. My doc is already on it but I will definitly bring this up.

phantomskiss
New Member


Date Joined Jun 2012
Total Posts : 1
   Posted 6/2/2012 12:24 AM (GMT -7)   
My daughter was diagnosed with Crohn's in 2010 and after a year on various meds, abx and steroids, developed fistulas, small bowel obstruction, and a very inflamed ileo-cecal valve. She had to undergo an ileostomy last Summer and had a reversal in Dec of 2011. She is now doing fine and recently started Remicade.....So far so good.

She has a history of Lyme, bartonella, erlichia, and anaplasmosis. (all tick borne diseases) G.I. Dr. did biopsies for Lyme and Bartonella but were negative; which does not rule it out. She is no longer undergoing any treatment for lyme or coinfections, but always felt better while on antibiotics.

Having started a lyme support group in 2004 we have many that do have severe g.i. issues and are diagnosed with various g.i. conditions.....

Here are some abstracts on g.i. Issues that were found in children and adults with Lyme disease. This may beuseful info. I have found many g.i. Drs to be totally ignorant of the connection.....

http://www.healthydays.info/nutrition_prefessionals.html

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 2827
   Posted 6/2/2012 5:21 AM (GMT -7)   
along with several other diseases and illnesses, such as MS, Parkinson's, Lupus, ALS, Gout, Hep, Rheum. arthritis...

And don't forget Alzheimer's. I am not trying to be sarcastic. There is speculation that Lyme disease can be chronic and only cured by years of antibiotics given intravenously. And it can be manifested thru many different symptoms.

Check out this documentary. I noticed that screening dates were discussed on the Lyme disease forum whenever available on PBS. But I found this copy thru Hulu.

www.hulu.com/watch/268761/under-our-skin
Male/60 DX ulcerative colitis Feb08, or maybe Crohn's colitis.
No Meds, allergic to Mesalamine. Remission since Mar10. Psyllium seed mixed with VSL3 is very helpful. Food journal instead of SCD.

Lots of fruit & vegetables (but no plums, kale, or carrots), no soda, no gluten, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, few processed foods, no carrageenan.
Probiotics, fish oil, multivitamin, extra D3, K2, high gamma E, phos choline, magnesium, boswellia, curcumin, glutamine.
Nature created all of the locks, therefore Nature has all of the keys

dancergirl1495
New Member


Date Joined May 2016
Total Posts : 1
   Posted 5/10/2016 9:49 AM (GMT -7)   
I've been doing reasearch on the same. I have confirmed LYME with coinfections. The best way to determine if you have gastrointentinal LYME is to have your gastroenterologist sample healthy mucosa during your next colonoscopy and send the sample for PCR testing looking specifically for LYME, Erlichia, Bartonella, and Babesia. These bugs can reside within the biofilm in your gut. Hope this helps.

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3226
   Posted 6/11/2016 8:23 AM (GMT -7)   
I was dx in 2009 with chronic Lyme and have been on antibiotics since. I got tested and mayo clinic last year. And again this year, negative now. My Crohn's did not improve, but I got my energy back and I don't have the feeling I was dying but that went away over time. I have never ever ever been in remission in 11 years! I too had a rash , but on my left butt check, but more of a shingles thing and not Lyme tick bite, I have been sick since my late teens with being tired, terrible smelly gas all the time!! Joint pain especially neck. I had to sleep most days to have two hours of energy . Now I'm managing my Crohn's with asacol hd and antibiotics. Steroids give me horrible gas and bloating. I wish I could report going from positive to negative for Lymes In a 7 year. Span and numerous antibiotics and diet changes would make it all heal up, it hasn't :(((
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Took rafaximin for SIBO, worked awesome! Taking asacol HD.
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