Lyme Disease and Ulcerative Colitis

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jsandman001
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/19/2011 9:17 AM (GMT -6)   
Hello,

I have Lyme disease (Igenex positiive) and Ulcerative colitis. I am on prednisone and am prednisone dependent so my GI doc wants to move me to Immuran or Remicade. Both highly Immunosuppressive.

I went to a lyme doctor a couple months ago who didn't want to treat me because of the prednisone saying that it would do no good to give you antibiotics taking steroids.

I have an appointment with a new Lyme specialist on Aug 16th.

Questions are :

Have any of you been treated for Lyme and Ulcerative Colitis and are doing better now ?

Can I only treat one disease and not the other ?

The GI doc is telling me I need to get off of the high dose of prednosone I am on because it has failed to keep the diarrhaea away but the Lyme doctor said that steroids and biologics (immuran and remicade) will not all the lyme disease therapy (high dose antibiotics) to work.  

So confused, please anyone with any information at all please help me out with this.

James


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35723
   Posted 7/19/2011 10:10 AM (GMT -6)   
Hi James,
Welcome to the forum! I'm sure you will find us to be a caring, helpful and understanding group! I am sooo sorry to hear that you have both Lyme and UC! Do you know if you have any other tick-borne infections along with Lyme?

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts.

There are some researchers that believe that Lyme can possibly lead to UC. Here is a link to one of the many articles about this: www.canlyme.com/crohn%27s.html

It is known that steroid use allows the Lyme infection to spread wider and deeper into the body, as it lowers the immune system.

I would suggest that when you get to your new LLMD's (Lyme Literate Medical Doctor) appt, that you ask him/her specifically about how to treat with both conditions. We also have a UC forum here on Healing Well, maybe you could pop over there and ask them too?
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, which makes long paragraphs very hard to read.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 7/19/2011 8:22 PM (GMT -6)   
I agree with Lymster. There is some evidence to suggest that Lyme can certainly mimic IBD (UC, Crohn's). See http://thehumansideoflyme.net/viewarticle.php?aid=62 for more info on how Lyme can mess up the gut.

I disagree with the person who told you taking abx while on steroids was wrong...this is often done for IBD (example: Flagyl and Prednisone) and seems to work for many (including myself - I was put on Flagyl and Pred. when first dx with Crohn's-Colitis as a teen; now it is thought that I actually had a combination of a parasitic infection and Lyme and not Crohn's, but the jury is still out on that one...).
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube; on TPN cuz my Gastroparesis is flaring...
Meds: Ceftazidime, Zofran, Claritin, Singulair, Solu-Medrol, homeopathy, etc.

jsandman001
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/19/2011 9:00 PM (GMT -6)   
Thank you for the replies and the links. I do not know if I have any of the other tick borne infections because I was told with the Igenex Lyme test that if I am positive it is best to treat for all the tick borne illnesses anyway. It looks like I am not the only one with Lyme disease and Ulcerative Colitis. I was diagnosed with Colitis before Lyme disease hence the reason I am on the prednisone in the first place. The GI doc I have currently said I have been totally mismanaged with the prednisone and it seems like that alone is going to cost me.

The Lyme doctor I am seeing in August is in my home state (Illinois) and I am hopeful he will not turn me away as there are not many people who will treat Lyme disease let alone someone who has Lyme and Ulcerative Colitis.


I am still looking for a person or two that has them both and either is being treated for both or has been treated for both.

James

UC&LymeGirl
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/31/2012 10:03 PM (GMT -6)   
Hi James. I have both UC and Lyme. I have had the UC for a few yrs now and just recently found out about my Lyme. I have an apt with a LLD on Oct 3rd and she will be treating me for both diseases. I think she is taking new patients at this time so I will post her info for you below.


I would love to keep in touch with you on your treatment plan and what seems to work for you if you are interested.

Good luck to you.

Post Edited By Moderator (Traveler) : 9/1/2012 8:39:01 AM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35723
   Posted 9/1/2012 8:38 AM (GMT -6)   
UC & LymeGirl- this is an old thread - from a year ago, and we haven't seen James since, but thank you for posting!!

I did have to remove the link from your post, as the sharing of doctors contact info isn't allowed here for a couple of reasons. The main reason is that any doctor who treats Lyme patients that isn't an Infectious Disease doc, is under heavy scrutiny and possible action from the AMA, so we like to protect our docs as best as we can. If you wish to share doctors contact info, we encourage you to enable your email address here, so that others can contact you off the board. We have email addresses here that are available to members if they don't wish to share their personal email addresses.

Please do read through our "New to Lyme? Start here!" thread that stays at the top of the forum, it has a ton of really great info in it, as well as things such as symptom lists and a list of questions to ask your LLMD!

We are glad to have you, as this forum is what it is because of our members!! So thanks for joining!!
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name!

Moxie17
New Member


Date Joined Jun 2014
Total Posts : 9
   Posted 6/27/2015 4:13 PM (GMT -6)   
I had Lyme for over a year without treatment because I tested negative. Finally got doctor to prescribe doxycycline for three weeks. UC developed while on the doxy. They put me on canasa for the UC. I have been in remission for Lyme over a year but feel it may be returning. I don't know if my colon can handle another round of doxy.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35723
   Posted 6/27/2015 4:21 PM (GMT -6)   
There are some abx that are harder on the digestive system than others, but you can bypass the digestive system with IV med or injections - so don't give up hope!!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 24595
   Posted 6/27/2015 4:29 PM (GMT -6)   
Hi Moxie - Wow only three weeks of doxy after having lyme for a year!

If your colon can't tolerate doxy, you could try different antibiotics.
Or since you have the UC, maybe an herbal protocol may be better for you.

Do you have a LLMD?
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

Moxie17
New Member


Date Joined Jun 2014
Total Posts : 9
   Posted 6/27/2015 4:40 PM (GMT -6)   
Because I have a doctor who doesn't know Lyme. My primary care doctor retired. He screwed up though before he retired by not treating me clinically. I had fevers, chills, aches, headaches, stiff neck, ringing in ears, etc. The tests were negative and he went by that. I didn't know anything about Lyme. A friend who has bad Lyme told me I could have it. She told me about Dr. Horowitz' book. I did some research and found out you could test negative for a lot of reasons, inept lab, not producing antibodies, etc. It should be a clinical diagnosis. I went to the doctor a few times complaining about virus symptoms. Tested me for Lupus, RA, etc. Went to an infectious disease specialist who told me I could not have Lyme because I tested negative (can you believe that one?) Finally got the new doctor who took over my primary care's office to prescribe the doxy over a year later. He really didn't think I had Lyme. He still thinks I'm nuts. I herxed each week on the doxy. After that, no real symptoms, but I got the UC. I think they waited way too long to treat me and fear it coming back again. My right ear still rings. I'm getting stiffness in joints again and achy legs during the nite at times. I doubt very much I can go back to this dude if I relapse when he doesn't even think I have it. I can't believe doctors in CT know very little about Lyme when it all began here. I don't have a LLMD. A friend who I think has Lyme (who also has been to these doctors) says she got a name of one but you have to pay $600 to get in the door. Can you believe she had a bullseye but tested negative and they didn't treat her?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 24595
   Posted 6/27/2015 5:07 PM (GMT -6)   
A bullseye rash is a symptom of lyme...it should have been treated. That is so frustrating!

You really should go to a LLMD and get clinically diagnosed...that will at least help you accept it...and not question it, right?

If you absolutely can't afford a visit....then maybe trying an herbal protocol...might be the best for you...but with the ulcerative colitis - you do have to be careful...and ideally being under Dr's guidance would be best.
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015
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