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» LymeNet Flash » Questions and Discussion » Medical Questions » EM rash that never went away - could it still be LD?

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Author Topic: EM rash that never went away - could it still be LD?
MI1991
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Hi there,

23/F. So I've been sick off and on with flu like illnesses for about a year now. The frequency increased as the year progressed, from once a month to every other week and days at a time.

January hit, and all hell broke lose. My fatigue went from mostly manageable to completely debilitating. For 8 weeks I had severe nausea, vomiting and diarhhea causing me to lose 30 lbs.

Two ER visits for dehydration, tons of walk ins, and no results. Scopes done, perfectly fine. Abdominal ultrasound revealed sludge in gallbladder and fatty liver despite not drinking, and having a clear ultrasound a year or two ago. Immunologists tests were also normal and healthy.

For the past 4 or so weeks the GI symptoms have improved, yet I'm still so sick and am essentially housebound. I have barely been able to keep up with a student job with my university by working from home, but aside from that I had to drop all of my courses, and even short grocery shopping trips will mess me up for days.

Thankfully my partner has a full time job and has been so supportive but my health is really adding so much stress in our lives and with no sign of any answers, Im becoming more and more frustrated.

My Aunt recently suggested I should be tested for Lymes because of a msyterious rash I have but I will get back to that later. My current symptoms are widespread and include:

Moderate to Severe Fatigue - worse with activity for days

Nausea off and on

Constant fever of at least 99.5, for over 3 months now

Complete lack of appetite

Weight loss (this and above are being managed with mj, would be losing 5+ lbs a week otherwise and am still struggling with appetite)

Insomnia for weeks upon weeks, even when resisting urge to nap, sticking with same bedtime routine, etc.

Swollen lymph node under armpit for months

Muscle weakness with occasional numbness and tingling in extremities. Leads to difficulties getting up stairs (we live in a townhouse condo eith three flights) and pushing self leads to burning muscles and worse weakness. Used to be REALLY strong so very scary for me...

Hives for months

Itchy skin in general, worse at night

Sensitivity to light and sound

Brain fog

Pain attacks (thought was gallbladder attacks, having a HIDA scan on Monday to investigate further)

Difficulty thinking of common words, dyslexia/garbled writing, difficulty with concentration (this is really distressing, I was an avid reader before getting sick and am still struggling to keep up with writing for pleasure and work purposes - I feel like I'm losing my intelligence...only thing that helps is my OCD in editing and re-editing to avoid embarrassment)

*New random blurry eye attacks, usually for 10 to 20 minutes

*New back pain, moderate to severe for 6 weeks now

*New joint/bone pain, migratory for hours, days or weeks. Not symmetrical. Sometimes swelling and redness but not always. So far knees, ankles, elbows, hips, and wrists have all been affected, both sides. Left thumb and femur have also been affected. 6 weeks now.

*Worsening coordination (always was clumsy, but this is ridiculous)

And for as long as this list is, Im pretty sure Im forgetting a few but hopefully this paints a picture of my suffering.

Now for the rash... It looks identical to a non-bullseye rash. The catch? Ive had it for over a year. Originally it did look like a bullseye, but it eventually faded.

I thought it was ringworm, doctor prescribed anti fungal, didnt work. Next doctor didnt know what to think and prescribed steroid cream. Seemed to fade for a few weeks before coming back stronger than ever and it has been months since then. Didnt pursue further because dealing with all the flus and what not took my mind away from it. The rash is on my left arm.

It is entirely possible that a tick could have bit me. Live in Southern Ontario and am in fields/wooded area about 2-4 times a month visiting family. Have always attracted bugs and even with spray, gets tens of bites every visit - even 50 wouldnt be a stretch.

My concern is that my current doctor has been very rude about my illness and all the normal results so far. I would like to be tested for Lyme but I havent been able to find anyone else with a rash that lasted like mine. I feel like Im going crazy [Frown]

Ive otherwise been a healthy person, only other struggle is with C-PTSD from a rough childhood, but have cut out abusers and have a much healthier and happier life. I do not feel that my mental health is playing a part especially with the sheer severity of my symptoms.

Currently live in Toronto would appreciate ANY thoughts. Will attach picture of rash. Thank you!

................................................

Breaking up the post for easier reading for many here -

[ 04-23-2015, 04:19 AM: Message edited by: Robin123 ]

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MI1991
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That picture's lighting isnt the best. Rash is clearer in the middle, redder along the outside. Used to have red circle in middle but that disappeared after the first month or so. Occasionally gets a little irritated, kind of burny feeling but usually dont even notice it.
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dbpei
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My goodness, your symptoms and rash sure seem like Lyme to me. Welcome! You will get some support and guidance here. I wish I knew of a doctor in your area to help you.

Hopefully you will get some responses to your post in "seeking a doctor".

Check below for local support group info:

http://www.lymenet.org/SupportGroups/Canada/

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Lymetoo
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So you haven't had any treatment for this at all?

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Opinions, not medical advice!

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MI1991
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Hi dbpei - thank you for your welcome. I hope someone will have a doctor suggestion too, I can't handle how this doctor I'm currently seeing. She has literally walked out of an appointment with me when I haven't even been able to get my symptoms out or even ask any questions. I'm a very polite and patient person, but I'm at my limit!

Hi Lymetoo - no, I haven't had ANY treatment. My GI specialist just prescribed something on Monday to help with bile, but I haven't started it yet as my GI symptoms have been more manageable and the side effects don't seem worth it for how many symptoms I'm already dealing with right now.

But other than that, I've been given nothing. I've just been suffering since the beginning of January and using mj to treat the nausea and lack of appetite and the pain when it's at it's worst. Far from an optimal solution. The doctor even commented and said she doesn't want to see me until I've seen the other specialists (which has now happened) because she doesn't want to send me to a "million different doctors". I get what she was trying to say, but her tone was a little bit much. As if anyone would want to make this up and live like this...

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MI1991
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But do either of you happen to know if it is possible to have the Lyme rash this long? I'm just not sure if that rules it out for me because I've had it for at least a year at this point.
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dbpei
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I have never heard of a bulls eye rash lasting that long. I wonder if a dermatologist could help you.

I know that some LLMD's (lyme literate doctors)take skin biopsies for borellia and co-infections. Hopefully when you are able to see a LLMD, that is something you could pursue.

But it may take a while to get your first appointment. Do you have any 'integrative physicians' or naturopathic doctors in your area? Many often see patients with chronic illnesses and it is more likely that you would get support and some appropriate testing. It would be a place for you to start while you are waiting for your initial visit with a LLMD.

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hiker53
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I have a similar rash, but it appeared 10 years after I got lyme was and mostly over the symptoms.

Some kind of eczema skin condition or dermatitis. It gets worse when I get toxic or I eat certain foods.

Hiker53

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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chardbokchoy
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From your description of symptoms and the photo of the rash, it looks to me like it could very well be some sort of tick-borne pathogen that's doing this.

I'm so sorry that you've been dealing with all these issues without any, as of yet, effective professional medical intervention to speak of.

If I were you I would try to find a local LLMD asap. A dermatologist might have helpful insight as well. You've been suffering long enough!

Blessings to you in your journey towards renewed health.

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Keebler
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-
A dermatologist, though, might also cause harm. Be very careful. Most will discount lyme. And most will suggest steroids. AVOID STEROIDS, even creams.

Yes, I do think it is absolutely possible to have a rash for extended time, especially since there has been no treatment.

And, yes, your symptoms / history sound very much like lyme could be the cause but also other tick borne infections, as well.

Of course, there could be other explanations but unless a doctor is thoroughly "lyme literate" they just won't know enough to be able to help much.

Best of luck to you. Take good care of yourself.
-

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Lymetoo
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If it's never been treated then it seems to me that there's nothing stopping it .. so it could last a year .. and then some.

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Opinions, not medical advice!

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TF
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Look at pages 9-10 of the Burrascano Lyme Treatment Guidelines found here:

http://www.lymenet.org/BurrGuide200810.pdf

This is a list of common lyme symptoms. You should find nearly all of your symptoms on this list.

Case closed.

When I had lyme, I got hives very easily and had them for as long as 4 months at a time. That is because your immune system is mixed up so it thinks that common things are "invaders" and it produces hives to many, many things.

I got hives to numerous meds.

Now, 10 years after getting rid of lyme, none of these meds give me hives anymore. I can take all of them and do take them with no problem.

Some people with lyme get hives to many foods or get other "illnesses" to many foods. It is the same thing. It is the lyme.

So, you can blame the lyme for the hives. It is very common. We have discussed it in numerous old posts.

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MI1991
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Hi everyone,

Thank you so so much for your answers and support. I really wish there were some LLMD's in Ontario, but it looks like I'm out of luck. Unfortunately LLND's are a bit out of the question for financial reasons. None of the ones around me offer any sort of sliding scale and I'm only on a student income that is barely keeping the bills paid at this point.

I think I'm going to just cross my fingers and ask the doctor to do the standard Lyme test and then if that doesn't show anything, I will try to get a bit of further testing. The cognitive/neurological stuff in particular is worrisome so I'm hoping she might be open to imaging to investigate further. She also said she might send me to a rheumatologist about my pain so hopefully that will turn up something too.

Otherwise I guess all I can try to do is pace myself as best as I can and try to manage my symptoms. I've already been in this for 3 1/2 months so waiting a bit longer is doable I guess. I'm mostly just worried about my classes in the Fall. I really want to finish up my degree but I know if I'm in anywhere near shape to how I'm doing now, there is no way that's going to happen.

TF - thank you for your comments about hives. The last year or so I noticed I would get a few at a time, just randomly. However the last few months have been ridiculous. I keep getting them on my eyelids. On my face, jawline. Arms. Torso. I even had an 'attack' patch on my thighs one evening. The back ones are the worst but it's probably for the best because I have a hard time resisting the urge to itch. I haven't changed detergents or anything, and the only other thing in my system is an IUD so I have no clue what I could be reacting too except for something going on in my body.

I was actually considering getting a food sensitivity test to see if that might turn something up. If I could eliminate even some of my symptoms, I know I would be able to do a lot more in my daily life. I mean hives in particular aren't really a barrier, but if there is a possibility that something is triggering nausea or worsening my fatigue, there can't be harm in investigating other options in the meantime.

So frustrating!

Anyways thank you again for all your answers. I definitely feel a bit more confident that it could possibly be Lyme, I'm just sad the medical climate in Canada is likely going to prevent me from proper testing/treatment for a while. One of our politicians passed a Lyme-related bill which is going to make our government take a look at their practices and what is being done in the States by LLMD's from my understanding. This has to be done by the end of this year so I only hope that they move things along quickly once they've done their review.

Much love and strength to you!

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TF
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You said "My concern is that my current doctor has been very rude about my illness and all the normal results so far."

This is exactly what lyme patients always report. We get normal test results all the time. Then, the doctors start treating us like we must have mental problems. They become very rude and insulting.

This is all due to their ignorance, but we lyme patients suffer because of it. It is horrible.

So, everything you have said (and of course, the rash) points to lyme disease.

A lyme doctor will do tests that other doctors have never done--tests for tick-borne diseases and various viruses. You will likely be positive on at least some of these.

Sorry to say, even the tests are expensive if you get them done at a good lab. Burrascano always recommended Igenex. It is a tick-borne disease specialty lab in California.

To get a complete coinfection panel of tests probably costs at least $600. A lyme test is $200.

So, get whatever tests you can afford right now, even if they are not the best. Just know that if the tests come back negative, it does NOT mean that you do not have lyme disease.

The tests are not 100% reliable. They may be about 50% accurate, meaning that they miss about half the cases of lyme disease. That's why lyme specialists diagnose patients based on symptoms. Burrascano also says this. See page 7.

So, just know that you really need to try a course of lyme treatment to make the final diagnosis. See this quote from page 7:

"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. . . .

Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment..."

So, I hope that soon you will be able to get to a doctor who understands lyme disease and get some treatment. We have been suffering here in the U.S. for many years. We have many people like you who cannot affort lyme treatment.

Until the majority opinion in medicine changes, things are not likely to change.

Perhaps you have a church or family members who would be willing to pay for the very expensive first visit with a lyme doctor and the appropriate testing. Many have had to ask others to enable them to pursue the lyme diagnosis.

I looked for a diagnosis for 10 LONG years. I really think you have found your diagnosis. Try to get better pictures of that rash. The pictures are invaluable.

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MI1991
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Thanks for replying again TF.

I was able to get the standard Lyme test today from that horrible doctor. I'm not overly optimistic it will show anything but I should hear back in a week and in the meantime I will save up so I can get the proper test through Igenex.

Otherwise I'm going to see about getting a referral to a rheumatologist to see if they can find out the cause of my widespread pain. Lyme is definitely the best fit that would explain all of my symptoms but I just want to try to rule out any other causes and feel like I'm doing something productive in the meantime.

It's been a long four months to say the least...

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Keebler
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A rheumatologist is not going to help if lyme is connected. It's not what they do. They will cover up symptoms, not figure out what causes them.

Find out first more about lyme, find a doctor who knows about lyme and other tick borne infections. If other things are in the picture, it's best that a LLMD suggest the next step.

But lyme can cause just about every symptom that is listed for the kinds of things rheumatologists think they are treating when they just want to pull the covers over their eyes about possible chronic stealth infections.

A doctor who is not LL will simply not be equipped to properly assess you.

Really, you have the classic rash, you have the classic symptoms. Lyme is where you start. Not with doctors who refuse to see what is going on.
-

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Keebler
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While not ideal, of course, if you can't find a LLMD or LL ND, you can still do some things for yourself.

Start here, though:

http://canlyme.com/

CANADIAN LYME DISEASE FOUNDATION


Books & articles here offer various options.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Herbal Safety considerations & reference books; etc.


Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:

Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;

knowing which supplements have direct impact, which are only support and which are both.

You can compare and contrast many approaches with links to articles, books, methods . . .

BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)
-

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MI1991
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Thanks for sharing Keebler. I have decided to put the rheumatologist on hold after reading what you wrote. A close family friend also connected me with a good friend who successfully beat Lyme and is living out of Toronto so I had a nice talk with her this morning and learned more. I'm beginning to realize more than ever how good of a fit Lyme is to my symptoms and at the very least it is worth investing in the Igenex test if my ELISA results come back negative.

She said she started getting treatment in Canada when there were still a couple doctors willing to treat it and both recieved warnings from the government and one was actually shut down! She ended up having to see a doctor in the States just like everyone has been saying and told me to budget around $5000 if the Igenex tests end up confirming it.

Can hardly believe how expensive that is, I will definitely have to reach out to some family members. I know I will be able to pay them back in the next couple years if I get better and if I don't, I'm not going to be able to finish my education and work more than 10-15 hours at most a week at minimum wage which is really frustrating because I want so much more for myself and my partner, there is no way He and I can start a family when I'm this debilitated [Frown] So I guess I will swallow my pride and silence the voice in my head that doesn't want to be a burden and just keep in mind that I know I will pay everyone back when I'm well and that it will be worth it in the end. For now I'm just going to wait on that ELISA test on the off chance I get a positive and if not, I will be making an appointment with an LLND who has the Igenex kits ready to go out. One step at a time, it's so frustrating, but at least it's something... I've only had to deal with this for four months so I really feel for the others who have been struggling with this for longer [Frown]

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Keebler
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MI1991,

At an appropriate transition point in this discussion, it would be of help if you start a whole new thread.

This one is so wide (some photos and some longer links do that) and then all posts that follow are just as wide. It can be hard to read for some with smaller screens.

So, when you have a new "thread" or discussion question, you will have more be able to read, follow and reply.

OR - if there is some way to edit your photo to normal size, the entire thread will go back to normal. But I don't know how to even "do" any photos so can't help there. Others may, though.
-

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Ellen101
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I wonder if youcould be dealing with a histamine intolerance
http://www.mindbodygreen.com/0-11175/everything-you-need-to-know-about-histamine-intolerance.html

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Robin123
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Someone I met lifted up his shirt, showed me the biggest bull's eye rash I'd ever seen, stretching across his entire belly. I asked him how long he'd had that, and he replied eight months. That's getting close to your year.

You're describing Lyme symptoms here, but also your specific presentation needs to be figured out in terms of what all is going on with you.

You're going to need to be patient as you find out your answers. Hopefully you can get some funding.

I'm pming you -

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Robin123
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Couple comments - you said you had ER visit for dehydration. When we have Lyme disease, it throws off our thirst mechanism and we don't know we're thirsty. Just know you should be drinking water throughout the day.

Re blurry vision - I drink mangosteen juice which, for me, stops all Lyme eye inflammation. You can find juice versions in health food stores and online. I like the Mango-Xan version as it's the most tart. I drink 1 oz/day. Be careful in the beginning - it can be powerful. We're all different in terms of how remedies affect us.

I personally take 25mg benadryl to go to sleep, and up it to 50mg if needed. Lyme messes up the sleep cycle.

For itchy skin, I've used baking soda in water and just rub it on my skin - takes down itching. Also any cream with borage in it is good.

You can get tested for T3 thyroid hormone - if it is low, you can take thyroid supplements like Armour or Naturethroid, both of which can ease brain fog sometimes for folks. When I started on Armour, I felt much more connected again, as my metabolism was working better.

It's a little-by-little change operation here, to start restoring your health.

Good news is you will feel better as you discover your answers. And hopefully family and friends will give you some money to go see a doctor.

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randibear
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could it be ringworm?

--------------------
do not look back when the only course is forward

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Lymetoo
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MI1991 .. would it be OK with you for us to delete your photo now? That way the thread will be easier to read. It will go back to its normal size.

Thanks.

[ 04-23-2015, 01:04 PM: Message edited by: Lymetoo ]

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