Extremely Painful secondary rash, 25 years after first infection

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PJL
New Member


Date Joined Jan 2018
Total Posts : 3
   Posted 1/23/2018 3:11 PM (GMT -6)   
Hi everyone

My best wishes to you all. I know first hand how brutal lymes is and the suffering it can cause.
My mum has been living with lymes now for 25 years. She is ill around 50% of the time with various sympoms from migraines to flebitis. Up until last year she was managing to cope but things have taken a much worse turn in the last 6 months.

After a bout of food poisining she started getting huge red rashes all over her body. One of them covered her whole back. These would appear then disappear, reappear in other places but seem to have been getting worse and spreading more. Along with them comes unbearable pain. Itching internal pain that feels like someone stabbing you repeatedly. She has has this every day for over 6 months now.
At first it was just at night when the lymes came on stronger but now seems to be a lot longer spells in the day time.

Creams do not work, they just make it worse. Its something internal and knowing her body, we know that it is connected to the lymes. When the lymes is at its worst, so is the rash.

We are at our wits end. I was wondering if anyone else has had this problem? The doctors have no idea about Lymes, let alone a secondary rash. Im really hoping that someone out there can help us shed some light on it so at least we can limit her suffering.

Thank you, and kind thoughts to you all.

JP

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/23/2018 5:19 PM (GMT -6)   
Welcome PJL and I'm so sorry about your Mom. To have lyme disease for 25 years is a long time and it is so sad.

I have heard of the rashes appear again and again, but I have not heard of them causing pain.

What does her lyme doctor say?

PJL
New Member


Date Joined Jan 2018
Total Posts : 3
   Posted 1/23/2018 5:28 PM (GMT -6)   
Hey Peteza!

Thanks for reaching out.
We are in the UK and only recently found a doctor that was able to understand lymes properly. We took her to the Infusion clinic in Germany. But they didnt know what was causing the rash. They think that because her immune system was so low, when she got the food poisining the lymes went bezerk and started really attacking her body again. She was vomitting , stomach in turmoil and then a week after that the rash started. First of all covering her whole back and then covering different parts of her body in really large patches. It will disappear then reappear in other parts.

On the first week it was definitely a lymes rash. But then it changed and seems more of a fungal rash.
The worst thing about it is the constant itching. If you can imagine with very extreme psoriasis on their body that is bleeding , thats what its like. Its also on the top of her head.

Shes coping as well as she can and has coped very well with Lymes, but with this constant pain added its become really difficult

Lapis_29
Veteran Member


Date Joined Sep 2017
Total Posts : 882
   Posted 1/23/2018 6:05 PM (GMT -6)   
sounds exactly like herpes zoster to me

https://en.wikipedia.org/wiki/Shingles

has she been tested for that?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33803
   Posted 1/23/2018 6:06 PM (GMT -6)   
Hi PJL - welcome!

Thank you for supporting and helping your mom with this.

Is your mom on a good detox regimen? Flushing out the toxins could help with the rashes.

That along with treating the Lyme and co-infections. (Not just lyme...but bartonella, babesia, etc.)

Is she currently treating with abx or herbs...or?
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

PJL
New Member


Date Joined Jan 2018
Total Posts : 3
   Posted 1/23/2018 7:20 PM (GMT -6)   
Hi Everyone. Thanks again for coming back to me.

She was tested for shingles initially as they thought it was that. But they then realised it wasnt.
She isnt on herbs. We took her to infusion in Germany which is about the only Lymes clinic i know of and they have given her a course of injections and pills to build up her immune system which as u can imagine is really really low after having this for 25 years.
So at the moment its just natural things like vitamins and a good diet. She also had stem cell surgery which seems to have given her bouts of energy at points.
She had the rash around 4 months before we went to infusion and thats really the worst part of the lymes now.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/23/2018 8:15 PM (GMT -6)   
Hi PJL,
Welcome to the community! And I too would like to pass along my sympathies for your Mom. I too have had these infections for a very long time (45 out of my 54 years - I was symptom free for 2 years not long ago, got reinfected) - although I have not had many rashes, other than from Bartonella.

My questions would be does she seem to have a 'sensitivity' to nearly everything? If so, this may be MCAD - Mast Cell Activation Disorder. If this is a possibility, this is the best site that you could go to for information, as this Dr. really knows what he's doing: mastcellresearch.com/what-is-mast-cell-activation-syndrome-mcas/

Was she tested for other possible infections - bacterial, viral, or protozoan? It's more common for more than just Lyme to be passed at the time of infection, than it is to not.

Keep asking questions and if you can bear with us asking questions, hopefully someone will spark a thought that will lead to something for your mom!!
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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