Bull’s Eye Rash

[Kim]

Michelle, your pics look pretty textbook to me too. 😕 Good job finding a few more pieces to the puzzle ~ you’re like a dog with a bone when it comes to your mom’s health. 😆

Take care…..kim

[Trudi]

Hi Michelle–
I had the identical rash on my right calf. Wow!! Unfortunately, mine got very big and stayed with me for over a year–I said it was a reflection of my bacteria load. This past Spring it started to fade and there is just a hint of it now. I’m really pressed for time–I’d love to post a picture of my BIG rash–I did in the past but the search just isn’t working for me–anyway–Maz–if you still have a copy of my rash–can you post it?
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Kim]

Hi Trudi,

I remember your rash and it was “remarkable” as they say in the medical profession. 😉 Is the fact that your rash is fading a correlation in how you’re feeling……………..fingers crossed 😉 I sure hope so. You have hit more walls than the average bear and kept going deep to figure out something else. I so hope you’re on the up-side of things. 😕

Take care…..kim

[Maz]

@Trudi wrote:

I’d love to post a picture of my BIG rash–I did in the past but the search just isn’t working for me–anyway–Maz–if you still have a copy of my rash–can you post it?

Hi Trudi….with pleasure, my friend. 🙂

[mkbeeliever]

@nspiker wrote:

Michelle,

Let us know how you and your mom feel about the possibility of lyme…… 🙄
nancy

Welllll….lets see, how do we feel about the possibility of Lyme??
I’m just going to do what I sometimes do on my Facebook status….it’s what I call a brain dump:
1. Scared
2. Somehow weirdly relieved
3. Pissed that there aren’t any LLMDs here in GA and pissed about the whole Lyme cover up and lack of knowledge in general.
4. Nervous
5. Overwhelmed – A whole new thing to study and get knowledgeable about…A whole new adventure when I thought we just finished one.
6. Full of “what if’s” and “if only’s” because a beautiful woman has had to suffer what she’s suffered unnecessarily. Her body is wrecked.
7. Hopeful
8. Shocked but not really
9. Dazed and
10. Confused

I had written a while back about not pursuing a Lyme diagnosis because we wanted to “coast” a bit. Things had been so out of control that we just wanted to “be” and relax a bit after all she’d been through. I also said that Lyme in my mind = more pain and sickness because the treatment could be tough for her. We talked today about it and I think what we’re going to set our sights on is a trip to Missouri in July. I go to St. Louis normally every 4th of July to visit my family and friends. Columbia, Mo is not that far from there. SO I think we’ll go see Dr. C.

She told me today that she remembered bulls eye rashes (yes plural) on her chest probably 35-40yrs. ago. What that means I do not know. Could she have been infected way back then? Mom’s only 67.
Then I can’t help but think, Should we put her thru what might be a painful treatment? Is it worth it at 67? She asked what the treatment would entail. So i think the best thing would be to go see Dr. C and see what he has to offer. Then she can make her choice. I am behind her all the way. The sad part is the damage has been done. I know it could be worse, but her body is really messed up. She uses a walker in the house and a wheelchair when we’re out. She’s so unsteady, she’s had one knee replaced and needs the other one done. She’s had a shoulder replaced and needs the other one done.

Is it absolutely necessary that we get the testing done? On Dr. C’s website I think I read that he really didn’t put much stock in the testing.

Thanks guys…I appreciate you!
Michelle

[Maz]

Gee, Michelle, you just summed up all the feelings of everyone visiting the Lymelands very well. Sorry to say this, but welcome to the club. 😥

There is no doubt that your Mom will likely have to take a very carefully planned approach to treatment with her kidney issues, but have no doubt she will be in good hands with Dr. C.

Yes, very possible for Lyme to remain “latent” for decades. With strong immune function, a person might just have a mild, passing flu-like illness and then it goes into remission until a later date. Lots of variables with this, but the usual triggers are anything that places stress on immune function (the zookeeper) and, when the stressor comes along (cage door opens), the infections grab hold (zoo animals are released). These variables might include things like simply getting older, surgery, shock, accident, unrelated illness, etc. Sometimes an additional tick bite (or other means of transmission) just adds to the existing pathogen load and the apple cart topples. There have been studies with park rangers that demonstrated that multiple tick bites equate to greater chronicity and severity of illness. There are also over 100 strains of borrelia in the US, so one might get a less virulent strain and handle the infection perfectly well until a subsequent infection is added to the mix with a more virulent strain and/or coinfections and then the cage door is opened. Of course, none of this is within the realm of certainty and must remain in the realm of speculation until we have more studies to confirm these hypotheses.

Every LLMD works differently, but a confirmed EM rash is definitive evidence of infection, regardless of what labs may say. Lyme is highly immune-suppressive and usually the sickest patients can’t produce enough antibody for a positive test. So, tests are only useful when diagnosis is uncertain and significant antibody bands show up to point to infection. What may be more helpful in your Mom’s case might be to have coinfection testing run, as these would require separate treatment…and just speculation on my part, but treatment for any additional coinfections would likely need to be carefully approached due to your Mom’s complicated history.

[Krys]

Michelle, I’m so, so very sorry it is such a humangous load you are both carrying. There is a possibility that even if you decide not to go into intense Lyme treatment, the realization that it is Lyme that is behind all of that, while being painful and bringing lots of feelings of regret, may also bring some feeling of closure, and then some peace with it.
It did for me when I realized after starting doxy that I had had Lyme many years ago. It finally gave explanation to health related issues that were devastating for me and that no tests ever accounted for, like premature births and miscarriages. Lyme and co-infections can do that. It doesn’t make it OK but now I understand the “why”. And there is some closure.

You have both done so much and are so inspiring to all of us.
I wish I could help you in any way.
You are both in my prayers. May the perfect for your mom decision arise naturally and feel good and right. And whatever you both decide, may the good days keep stretching into even better ones non-stop!

[Kim]

Michelle,

Dr. C. will be the perfect doc for your mom. He definitely will scale it back and work just as hard to strengthen her as going after the infection(s).

Santa needs to bring Kathy a sauna! One of those portable dome models that she can lie down and take a little nap would give her so much joint relief, improve her circulation, kill some bugs………need I go on? 😉

Hang in there, Michelle.

Take care…..kim

[lynnie_sydney]

Gosh Michelle, you certainly have more to think about now and can sooo understand your very mixed feelings, especially with everything your Mom has been through to get this far. You have some great wisdom on this from Maz and a potential good way to proceed from Kim. Sounds like Dr C. would be a very safe and wise choice as you step into this new phase. Sending you both love and hugs. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[mkbeeliever]

Mom showed her rash to her kidney doctor this morning while she was having her dialysis, he took a picture of it and seemed concerned, interested and is taking it seriously. He commented to her that they would draw the blood and send to Meridian and Meridian would send it to the lab we choose. I don’t know about that one. I did try to find the test I needed to order from Igenex and I can’t seem to locate that information. Would one of you give me that info? Thanks!

[Kim]

@mkbeeliever wrote:

Mom showed her rash to her kidney doctor this morning while she was having her dialysis, he took a picture of it and seemed concerned, interested and is taking it seriously. He commented to her that they would draw the blood and send to Meridian and Meridian would send it to the lab we choose. I don’t know about that one. I did try to find the test I needed to order from Igenex and I can’t seem to locate that information. Would one of you give me that info? Thanks!

Michelle,

Igenex test #188 and #189 is the basic Western Blot and should cost around $200. My doc says the tests for the co-infections are not that good so he doesn’t order them. Good luck.

Take care…..kim

[mkbeeliever]

Thank you Kimmie and Maria (PM) – I appreciate you!
Here’s a pic of my mom and dad in Savannah this past fall. We took a weekend trip and went on a “Paula Deen Tour.” We had a blast!

xxoo

Uploaded with ImageShack.us

[Trudi]

Hi Trudi….with pleasure, my friend. 🙂

Thanks, Maz–it would have taken me forever to figure it out on this new format 🙂

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Trudi]

@Kim wrote:

Hi Trudi,

I remember your rash and it was “remarkable” as they say in the medical profession. 😉 Is the fact that your rash is fading a correlation in how you’re feeling……………..fingers crossed 😉 I sure hope so. You have hit more walls than the average bear and kept going deep to figure out something else. I so hope you’re on the up-side of things. 😕

Take care…..kim

Hi Kim–
I really wish that my fading rash would be a correlation of how I’m feeling–not so!! I have been back on doxy 100 mg a day since the beginning of December. I’ve also been on Teasel root and Lyme HP (but have stopped it). I have the regular severe joint pain–I can’t straighten up all the way to walk 😥 ; my blood pressure has been sky-high and I have had to go back on meds. Unfortunately, they are not keeping the BP steady. I see the doctor on Thursday. Hope he can take care of some of my frustration. I’ve decided to stop taking the doxy over the holidays in hopes that I get some relief!
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Patti D]

Darn,
I wish I could get the picture of my rash. yeah it’s all about me now 😆 😆 😆 No, Trudi has seen my rash. I have now had the itchy thing for 2 years. Mine is very red 2 inches across and about 4 inches long. It gets really dry and flaky and then goes right back to red and raised. Looks like a cat scratched as it has huge lines. I think you guys thought I should get it checked for bartonella. Well 4 doctors later and 2 plus years and all I get is a lot of grunts 😕 and no action from the doctors.

So sorry Michelle. I horned in again. Such a little princess I have become 😆 😆 😆

Merry Christmas sweet friend!!!! Your Mom is so lucky to have a sweet daughter like you!
Sending well wishes your way!!
Patti

[Author]

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