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Crohn's Disease Forum » General IBD Discussion » Lyme Disease and Crohn's Disease


04-28-2011, 04:22 PM   #1
SoTired
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Lyme Disease and Crohn's Disease

I've been struggling with Crohn's Disease for more than I care to remember at this point. For the most part, all the traditional treatments haven't done much for me. Has anyone here ever taken a step back and pondered if their unresponsive Crohn's Disease might actually be Lyme Disease that was misdiagnosed? As I've begun to look more into Lyme Disease, many of the symptoms certainly fit and I know i've been bitten by more ticks than there are in Colorado. I've also read that the actual cases of Lyme Disease may be 10x more than reported but many get diagnosed as other diseases.

Has anyone ever pondered this at all or been tested for Lyme?
04-28-2011, 05:32 PM   #2
D Bergy
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There are people that have Lyme Disease that then develop Crohn's, or intestinal problems that are a result of Lyme or a co-infection. One of the more common co-infections that bother the GI tract other than Lyme, is Bartonella.

My wife has Lyme Disease, and I treat her, so I have researched Lyme more than any other disease. It is a difficult disease to treat, unless you kill it off immediately.

If you have questions about Lyme Disease, this forum is a good one to check out. I post there as well on occasion.

http://www.lymenet.org/

Dan
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05-01-2011, 02:00 PM   #3
SoTired
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So it has been proven that Lyme can CAUSE Crohn's Disease?
05-03-2011, 12:59 PM   #4
JsMominVA
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Hi SoTired,

I was just recently diagnosed with chronic lyme in March. I was diagnosed with crohn's disease in the summer of 2000. My holistic doctor tests all her autoimmune patients for lyme and my cd57 level was ridiculously low.

From some research I've found, it seems to me that lyme can cause crohn's disease symptoms. I used to have mild crohn's, but after my son was born it became moderate. I do believe that I can heal without drugs, but right now am having a difficult time. I am on asacol - 9 pills total. I just came off Entocort completely 9 days ago and now I am flaring.

I have a little boy with apraxia and autism who was born without an immune system as I believe I've had lyme for at least half my life.

I hope I can post this, but someone told me about a fantastic nutritionist located in PA. She apparently has healed a lot of people with lyme and has experience with autoimmune disease. I am hoping she can help myself and my son. If you are interested in the name, email me.
05-03-2011, 01:41 PM   #5
D Bergy
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It can at least cause Crohn's like symptoms. It is hard to know if the Lyme and co-infections are causing Crohn's that is identical to what people without Lyme have, or a temporary result of a severely suppressed immune system. It probably involves both.

A poorly functioning immune system allows a host of pathogens to set up shop in your body, so it is largely a matter of what you are exposed to, and what your body cannot effectively fight off. I do not even think Crohn's has a single cause, which is what makes it hard to treat.

Oddly enough, LDN is one of the treatments for Lyme, and I use it for Crohn's as it boosts the immune function. I believe LDN is also used as a Autism treatment.

Having Crohn's does not mean you have Lyme, as I know I do not have it, but Lyme can create a favorable environment for developing Crohn's and other autoimmune diseases.

Lyme is far more common than Crohn's, but many people never get properly diagnosed. They state that for every confirmed case of Lyme there are ten that are not diagnosed. I think that is even way too conservative.

Dan
06-29-2011, 02:57 PM   #6
davers2005
 
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hi sotired. ive just posted a thread on here regarding this subject. ive had crohn's for about 8yrs now. had a re-section 5yrs ago. now its back again.
i was just reading up on crohn's, as i do most nights. i came across an article about lyme and crohn's. it just clicked! i had the rash before i was diagnosed. about a year previously. then i remember getting a horrid skin rash all over my hands and arms. it was like scabies. but not! i had to soak them in boiling water to relieve the irritation. i saw doctors and specialists, was never diagnosed with anything. now i have crohn's! it would explain alot. as the genetic link doesnt work for me, as none of my family has anything like this. i did blame milk (dairy) at first as i used to drink it by the gallon. every day. i will be seeing my doc next month. i'm gonna ask for the blood test for this lyme
03-08-2014, 05:09 PM   #7
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I had lymes disease years ago , and often wonder if that caused me to get crohns? I remember taking cipro, I often think if those pills destroyed all the good bacteria in my gut.
07-21-2015, 07:55 PM   #8
Dana g
 
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Hi my son was bit by a tick that tested postive for lyme back in 5/2010. He had 2 blood tests but both came back negative for lyme. Five months after he was bit he started to have diarrhea. That December he had a colonoscopy and was then told he had a mild case of colitis. He was put on mild drugs for crohns (Asacol and suppository) and the mild case spread quickly. He was then put on steroids which he did ok on until he weened off then again the colitis went crazy. Bloody diarrhea and more than 20 bowel movements a day. Then they diagnosed him with severe Crohns although every biopsy came back inconclusive. He was then put on Humira, and failed then Remicade and failed, and recently Entyvio and failed. His dr. said to seek a surgeon for permanent colon removal. It was then that we decided to revisit the possibility that he had Lyme and not crohns. His Western Blot test came back negative showing only a weak positive for the lyme antibody. Dr said he would not have the antibody without the disease. We were told the drugs he was on for Crohns were very bad for Lyme and that could be the reason today he is in bad shape. We are 6 weeks into treating for Lyme and the Bartonella virus and are seeing a slowdown in bowel movements but no weight gain yet and he is still very weak. We are 99% on board with this diagnosis but very nervous if we have made the correct move forward with treating the Lyme and no longer treating for Crohns. If anyone has any advice or a similar story they can offer it would really be appreciated!
07-21-2015, 08:33 PM   #9
Lady Organic
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is the treatment for lime a cocktail of antibiotics? if so, antibiotics can help in CD as well.
is your son being monitored by a GI, blood reports, fecal calprotectine or colonoscopy throughout this treatment?

just to let you know, its not unusual that biopsies come back inconclusive of CD or UC. thats been my case for 14 years, and we are positive I have IBD.
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''UC-like Crohn's'' since 2001:
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suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
07-21-2015, 09:01 PM   #10
Dana g
 
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Thanks for your response. No he is not being treated with antibiotics yet. He is on a formula called A Bart. He will start antibiotics once his immune system is built back up. I do understand what you are saying though as he was on Cipro once during the last five years and it actually did help him. For now we have to have some hope that this may be what he has instead of Lyme. Do you happen to know other crohns sufferers that never responded to any therapy? We are not currently seeing his gastro since I know he would never be on board with this. Even though I told him on several occasions that my son had been bit by a tick that tested positive he shrugged it off. We are however taking him for blood work.
07-21-2015, 09:22 PM   #11
Lady Organic
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we read lots of posters here who have tried all options and had to go to surgery unfortunately. I think however there is a very bright near future ahead of us and lots of very interesting clinical trials are going on that we can enroll in right now. There are fecal transplants and SSI vaccine trial for instance. medical cannabis seems a great avenue to explore too and so does dieting or enteral liquid diets and MAP too. has you son tried Enteral diet? From what I read in your inial post, It seems your son has not tried methotrexate, Imuran or Purinethol? How can doctors talk about surgery without trying these options?

does you son blood report include CRP and Sed rate? have they been elevated prior to starting this treatment? How are they now? This could be a way to monitor the intestinal inflammation.
07-21-2015, 09:33 PM   #12
Dana g
 
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Hate to say I am not aware of those levels in his blood work. I will have to find out about that. Thanks again!
07-21-2015, 10:33 PM   #13
D Bergy
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My wife has Lyme but never has produced a positive test for it.

I ended up treating her with an alternative treatment because at that time, even with all the tell tale symptoms, they would not treat with a negative test.

I have Crohns, but not Lyme Disease. I treat myself using the same method but for different pathogens.

Neither of us is cured, but we both are able to live normal lives.

For information on Lyme Disease you might want to visit:

www.lymenet.org

I have seen several people over the years on that site that got Lyme disease and later developed Crohns.

I don't envy you predicament. One of these diseases is tough enough.

My wife also has Bart. Recently it has slowly resurfaced after a couple of years of remission. I have managed to knock it back down again. Nutramedix Cumanda can help with this but I use it as one of two treatment methods done at the same time. That is readily available to anyone.
also hits active Lyme to a degree.

Good luck

Dan

Last edited by D Bergy; 07-22-2015 at 04:51 AM.
07-23-2015, 04:54 AM   #14
Dana g
 
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Thanks Dan for your reply. We are hoping that he has Lymes and never had Crohns. His Lyme Dr thinks all his gastro issues were caused by the Bartonella virus. Looking back he did and does have more Lyme symptoms than Crohns. I have found others that also were misdiagnosed like we believe he may have been. We are seeing very slight positive changes right now while he is treating for Lyme. He is off all immune suppressing drugs and now on the complete opposite type of drug. We are building he immune system back up and his so called Crohns is getting better (slowly) instead of worse. That to me is the most positive sign we have seen in 5 years. I know others have had this same experience and made a full recovery. We are told it may take a couple of years. Here's hoping that we are finally on the right track!
07-23-2015, 09:10 AM   #15
nogutsnoglory
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Some of the Lyme symptoms can mimic ibd but I don't believe Lyme causes crohns unless there is a predisposition to crohns and the stress of illness or antibiotics kick in ibd.

There are those who believe crohns doesn't exist and that it's all a manifestation of chronic Lyme but I think that is complete nonsense and just part of conspiracy. Lyme is real and crohns is real and usually there is no relationship between the two but there can be. I have crohns but I may have later developed chronic Lyme.
07-23-2015, 03:42 PM   #16
Ihurt
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I personally think Lyme disease can manifest in different ways. I mean does everyone with Crohn's have lyme disease, No. Not everyone with Lyme has Crohn's either. I do know a lot of people who have Chronic Lyme do not even know it. Lyme disease can cause a whole bunch of health issues, even digestive issues and inflammation. It is actually the co-infections from the lyme disease that can cause diseases and inflammation in other organs in the body. I have lots of health issues that kind of popped up over the last 12 years. I had a lyme test a few years back and it came back as indeterminate. I called the doctor at the lab and asked him what that meant. He said it meant I was probably exposed to it at some point. Most western blot lyme tests are not able to pick up lyme disease if it is not tested for right away after the Tic bite so many people are tested are given false negative results. It is better to use a more advanced lab like Igenex when getting tested for Lyme. They are more Lyme literate.
07-23-2015, 05:15 PM   #17
Dana g
 
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Ihurt my son tested indeterminate from his Igenex western blot test also. The doctor who is Lyme literate said that he feels he has lyme and that where his gastro issues came from not crohns. We are so confused and frightened since we stopped all crohns drugs that did not help anyway. Do you feel you do or do not have Lyme?
07-23-2015, 07:15 PM   #18
Ihurt
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Dana g,

It is so hard to say, but yeah, I definitely think something is going on. I also have other health issues ( Interstitial cystitis, IBS, fibromyalgia, awful gut issues, chemical sensitivities- I seem to be reactive or allergic to most every medication out there, frequent UTI's). My gut issues are worse now then they ever have been. I have not been diagnosed with Crohns. My GI keeps saying I Have IBS. All I know is that I never met another person with IBS that has as much pan as I do.

Does your son have any other health issues besides the gut issues?

For me it seems like different things keep popping up. I started with a odd viral type illness after getting a flu shot back in 2003. Two weeks or so later I got very sick. I had this severe throat burning. I mean it felt like someone was holding a torch in my throat 24/7. I had to stop working because of it. I could not talk hardly due to the severe pain. Went all the way to Mayo clinic( they were utterly useless) for it. They said I was definitely sick but they could not tell me what I had! So that was$10,000 down the tubes. I mean then I had all kinds of upper gut issues where I could hardly eat, I was literally living on baby food. I lost so much weight which I did not even have to lose to begin with. I went Gluten free and that seemed to help my upper gut issues a lot. Then I got diagnosed with Interstitial Cystitis in 2006, but had it since 2005. I still suffer today from this, it is so horrible. For three years I have been having intestinal issues( severe pain all the time). Pain was my main symptom on and off for the last three years. Just two and half weeks ago I woke up with a bout of diarrhea and have not been good since. I literally am sitting with my heating pad all day.

So to answer your question, yes I do think I have Lyme.
07-23-2015, 07:56 PM   #19
Dana g
 
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Thats sounds awful! My son has no other issues and was perfectly healthy up until his tick bite. But because his blood tests (normal not Igenex) came back negative Dr's said it was Crohns. We have never been on board with that but went with it because we were with the best Dr's (so I've been told) at Mt Sinai in NY. But not one medication has ever worked for him. Thats when we revisited the Lyme and got the indeterminate results. When I look up other peoples stories they say those results mean you have it. He does have other signs of the Lyme with a co infection of Baronella. Early on he had the Cat scratch fever rash. We had thought it was poison ivy but it did not itch at all. So much was going on we never addressed by seeing a dr. I don't know where you live but you should really see a good Lyme Dr. You never know. I know lots of people who went years undiagnosed all with different symptoms.
07-23-2015, 08:11 PM   #20
D Bergy
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Lyme and coinfections cause all kinds of symptoms. Until the Lyme and Bart is substantially reduced, you will not know if you are dealing with Crohns or not.

Treating it can bring some pretty severe symptoms also.

You have an LLMD so they should be able to help. My nephew was treated with IV Rocephrin and it worked well for him. I doubt it is eliminated, as I have yet to see a 100% cure, unless treated shortly after infected, but for now he is doing well.

You might want to ask the LLMD about Rife frequency treatments. They generally will not bring up the subject because it can get them in trouble. But, some LLMD's are quite familiar with the method and results and if you bring up the subject, they will generally give you information.

Its what I use sometimes with natural antibiotics if needed.

Hope you make some progress.
07-23-2015, 08:45 PM   #21
Dana g
 
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Thank you D Bergy your words are certainly encouraging. I am going to ask when we go to see the Dr. about those treatments. I do know it is going to take a long time before we know and this part is very scary and painful. As a mother I can only hope we are making the correct decisions. My feeling on the formula (A-Bart) that he is taking now is that it is repairing his immune system which I would imagine would make the Crohns worse if it was in fact Crohns….but it is not. He is having the Herxhemier which they say is good from the formula. We are staying the course. We are just 6 weeks into this new direction.
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