Lyme after organ transplant

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Ara
New Member


Date Joined Feb 2018
Total Posts : 2
   Posted 2/2/2018 6:11 PM (GMT -6)   
Hi. I just joined and was dx'd today. Wondering if anyone has dealt with lyme after having had a transplant? I am on immune supression meds and started antibiotics today. Having more blood work done and a ct scan next week. I'm reading as much as I can but it's a little overwhelming. Ugh. smile darn ticks. Thanks.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 2/2/2018 6:43 PM (GMT -6)   
Hi Ara, welcome to our community.

Sorry you have lyme, but glad you found us here.

So, with the transplant, you will be on lifelong immune suppression meds?


Did you recently get a tick bite? Or you think you had it for a long time, and the immune suppression drugs have brought on the symptoms?


I don't recall anyone posting about having an organ transplant and dealing with lyme.

But, hopefully someone will have some helpful advice.
Are you seeing a LLMD for treatment?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2122
   Posted 2/3/2018 4:29 AM (GMT -6)   
HI and welcome to our forum,

Glad you have found us but sorry that you are dealing with Lyme and your other health issues.

We encourage all new members to read our"New to Lyme " thread at the top of the page. It has important information on Detoxing, Lyme, symptoms and much more.

Not sure what area you are from but there might be local or regional support groups available. That way you might also connect there with others that have the same situation as you.



There are other good places to check out also like:

ilads.org

Tired of Lyme. com

LymeAlliance


I wish you the best of healing and take care, Jo

gfields
Veteran Member


Date Joined Oct 2015
Total Posts : 956
   Posted 2/3/2018 7:53 AM (GMT -6)   
Just curious, which organ did you get transplanted?

If it was someone who had a history of Lyme disease, they probably had persister cells in the organ already. You may want to read Horowitz' latest book, How can I get better? He talk about a 3 abx cocktail, switching it every 2 months, and then going on dapsone. You may be in a position that the lyme hasn't spread too far. If I were you, I'd get an LLMD who is knowledgeable about the Horowitz protocol and give that a shot.

Ara
New Member


Date Joined Feb 2018
Total Posts : 2
   Posted 2/3/2018 9:44 AM (GMT -6)   
Thanks for the welcome guys.

I had a pancreas transplant after having had both chronic pancreatitis and type 1 diabetes. I will be on immune suppression medication for the rest of my life.

I live in an area that is high risk for Lyme and I have been bitten at least 4 times. The most recent bite was this past August. I've never had a rash from any of the bites, but I have been sick on and off since October and exhausted since the beginning of December. I have not been referred to an LLMD yet. I got a call from my transplant clinic yesterday after seeing them last week.

I read through the New To Lyme thread last night. I'll look through it again in more detail. Thanks for resources. I'm glad I found you guys. ;)
-A

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 2/3/2018 11:41 AM (GMT -6)   
Just wanted to mention that docs don’t refer you to llmd’s - you just call one and make an appt.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 2/3/2018 11:44 AM (GMT -6)   
Hi Ara,
First of all, I'm so very sorry that this has happened to you! It's actually a fear of mine for others - that someone will decide that I should donate my organs. As selfish as that sounds, it's been seen and documented before that someone could unknowingly have these infections (testing is very poor) and then donate an organ and pass these infections along with the donated organ.

As you said you were bit by ticks though, it's hard to be able to know just what happened there. Either way, I'm very sorry, and you should know up front that since you will require immune suppression meds, treating these infections will be very tricky and you will need a very experienced LLMD (Lyme Literate MD).

​​​​​​​​​​​​​​​​​​​For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will​​​​​​​​​​​​​​​​​​ need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​​​​​​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​You ​​​​​​ ​​​​​​​​​​​​can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

​​​​​​​​You can start a new thread titled something like "Looking for LLMD in the ​​(insert the nearest larger city & state)​​ ​​area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​

​​ ​​​​​​​​​​​​​​​​​​​​​​Y​​ou can email ​​​​the​​ ​​​​​​Tick-Borne Disease Alliance at​: medicalinfo@tbdalliance.org
​​

​​ ​​​​​​​​​​ILADS has their own referral system as well:
​​​​​​​​​​​​​​​​ilads.org/ilads_media/physician-referral/

​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme.

Do ask a lot of questions here!! We are happy to help as much as we can, although please do your own research as well. The suggestions here can be very helpful for 'leads' on what to research, and what to do with that information though!
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 set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
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