posted
My daughter, who has been treated for late stage LD, is now having more problems, and the GI doctor is leaning towards Crohn's Disease.
This scares me, not only for the seriousness of such an illness, but because I understand that Crohn's is usually treated with antibiotics and steriods.
We know steriods are taboo for Lyme patients, and I'm wondering what stance the GI doc will take on Lyme.
I also know LD can mimic Crohn's, and fear the remission she had, may be over. I can see other old symptoms returning as well. Has anyone gone this route before? How was it treated?
Any suggestions on what to ask doctor? How does one determine if it's Lyme symptoms or truly Crohn's?
Posts: 42 | From Ohio | Registered: Oct 2002
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I had Crohn's symptoms throughout Lyme. I was never diagnosed with it because I stopped going to the GI doc.
I drank a lot of my food and ate foods that I knew didn't give me symptoms. I had lots of smoothies with why protein.
Eating ferments helped, too. Raw sauerkraut, fresh kefir, and kombucha.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Is she seeing a LLMD? I'd ask these questions of a seasoned LLMD. Yes, the literature is full of examples of Crohn's nearly disappearing with full treatment for lyme &/or other tick-borne or chronic stealth infections.
Has she been assessed for the full range of chronic stealth infections. I'll be back with a list about those from Timaca.
Also, I assume the GI doctor has put her on a gluten-free diet long ago. Is she sticking to that? It's really important. But, remember that gluten is hidden in things even like lip balm. Even a trace can send Crohn's symptoms to volcano status.
He has tested her for celiac, I hope . . . and she was on gluten daily for many weeks prior to such test. Otherwise, had she not been consuming enough gluten, the tests would be inadequate.
A genetic test can be of help but, still, with lyme and even without celiac, lyme patients do far better on a gluten-free diet - so much so that many LLMDs require that of their patients. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: -------------------
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I have Crohn's, but do not use immune suppressants or steroids.
I use Low Dose Naltrexone, and it has worked well for me. It boosts or normalizes the immune system, depending on the school of thought. In any case, it does not suppress the immune system.
I would recommend this treatment, if it does turn out to be Crohn's.
posted
Just a quick reply to thank everyone for their posts. I have to go run an errand while the (snow) roads are clear - but will be back later to answer questions.
Thanks so much!
KatieBugsMom
Posts: 42 | From Ohio | Registered: Oct 2002
| IP: Logged |
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
You may want to consider Allergie-Immun Therapie to correct any dysregulations (allergies). Healing is difficult when inflammations persist caused by the regulatory system (DNA). AI corrects the errors in the DNA.
posted
Lyme causes all sorts of intestinal/bowel distress for some patients (including me- i thought I had IBS/Crohns/Parasites/allergies for years).
Is your GI doctor familiar with all the symptoms of Lyme?
Posts: 19 | From Oakland, CA | Registered: Feb 2010
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I also was diagnosed with Crohn's Disease. With proper antibiotic therapy it has improved drastically but I still have Lyme Disease, so I still have some symptoms. I'm working on treatment -- it's a constant process, but that is what happened to me.
My symptoms were crippling and severe. They wanted to do surgery. I refused.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
That's one of my biggest fears - that the Gi doc will want to do surgery, when it's really LD related.
My daughter hasn't seen a LLMD for about 2 years, when she went into a remission, after several years of treatment.
Since then, and once she turned 18, she has dug in her heels about seeing ANY doctor. Finally gave in when symptoms scared her.
Not sure yet how much her GI doc knows about LD, but she doesn't seem to harbor a negative attitude towards it.
Camera results from wireless capsule endoscopy due in a few days. Then we'll hear what GI doc has in mind.
Thanks so much for all the info and links - these will help out so much when a treatment plan is laid out.
Posts: 42 | From Ohio | Registered: Oct 2002
| IP: Logged |
posted
Keebler - in answer to co-infections & sleath infections:
My daughter went to Dr. J in Conn. I know he tested for co-infections - will have to look at testing to see if it included the others.
Altho she tested negative for Bartonella, I'm still wondering about it. She occasionally has odd marks on her skin that look like stretch marks.
Would love to take her back to Dr. J, but with waiting list we went immediately to GI doctor. Hoping GI doc work with him.
Posts: 42 | From Ohio | Registered: Oct 2002
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
This is common traits among those who are sick. Pentasa would probably help curb her digestive inflammation as long as it hasn't become acute.
Treating symptoms while also going after the infection is best. However, treating inflammation is a tricky business. Naltrexone, Pentasa are the first that come to mind if she indeed has inflammation show up through the capsule examination.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
The steroid they use is usually Endocort which is supposed to stay in the gut. Pentasa/Asacol are pretty benign and worth a shot.
IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I never could find if your daughter is on a Gluten-Free diet. My eyes may have missed that in scanning above posts but, if not, that is the number one most important thing to consider - in addition to tick borne infections.
While L-glutatmine can really help repair GI tissue, just be sure to say within the dose range as too much can convert to glutamic acid in the brain and become excitatory. If you notice agitation, just back down the dose a bit.
If your daughter's GI doctor does not understand lyme, get one who does. In addition to a gluten-free diet and attention to tick-borne infections, it might be good to look at a connection with elevated porphryins. More here about that.
My hands just can type anymore to detail my thoughts but there is a lot here to consider especially because symptoms of an acute porphyria attack can be nearly identical to what one may think is Crohn's.
SECONDARY PORPHYRIA: what you should know before starting a CAP (combined antibiotic protocol)
=================
KPU (Kryptopyrroluria) is just ONE type of porphryia that seems to have importance regarding patients with lyme, autism and those who have issues with heavy metals:
posted
No, forgot to answer the gluten free question. Sorry. She is not on a gf diet. Not sure if she was tested for this, but will find out. I imagine she was, but not sure.
I hate being "out of the loop" as she is usually in an agitated mood, and pulling info from her is not as easy as it once was.
She did tell me that wireless camera results did not indicate Crohn's. This is a relief, but makes me more convinced that it's Lyme related.
I have a lot of information to look over (you provided).
Thanks!!!
Posts: 42 | From Ohio | Registered: Oct 2002
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Whether tested for celiac or not, positive or not for celiac, a gluten-free diet can be nearly a miracle to lift mood, calm pain, reduce neuro problems and settle the whole digestive tract.
It's very sad that the Crohn's doctor has not even suggested that. A GF diet been a wonderful help for many with crohns and IBX, and for lyme patients, too. Many LLMDs require that of their patients, that's how important it is and how valuable the benefits.
posted
I second Keebler with the gluten free diet. Some LLMD's want all their patients on gluten free diets. I tried it just to see how I felt on it and it is a major plus for making the immune system function better. When you go to wiki and check gluten free you will see lyme listed as one of the few diseases that it helps. You don't have to test positive for celiac and it is easier then you think to stay on.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic