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» LymeNet Flash » Questions and Discussion » Medical Questions » My story - is this clear-cut Lyme?

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Author Topic: My story - is this clear-cut Lyme?
lymeandceliac
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About six years ago, I had a bulls eye rash. I thought nothing of it as I never am around tall grass, and obsessively avoid contacting any vegetation whatsoever because of allergies. I spend little time outside for the same reason. The thought of Lyme never crossed my mind until years later.

I did the IgenX test last month, for igM, I was
34+
41+
23-25 IND
31 IND

IgG
41++
39 IND

I've had severe fatigue, brain fog, aches, trouble concentrating, general malaise, equilibrium issues, and insomnia since about the time of the rash.

Complicating things is a spring 2013 celiac diagnosis. While Lyme can lead to celiac, what I now recognize as celiac symptoms started around 2008 and worsened until going GF. As celiac presents with many similar symptoms, the onset of Lyme symptoms was not obvious.

So...is this clear cut Lyme, or could something like a second autoimmune disease cause false positives?

Thanks!

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me
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In my non-medial opinion, it sounds very much like Lyme. "IBS" was the 2nd of many symptoms to follow as Lyme made its was around my body unbeknownst to me at the time. I have a negative autoimmune response to gluten and casein.

Have you seen a LLMD yet?

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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me
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I recommend you start educating yourself about Lyme. The movie, "Under Our Skin," gives a more "quick" overview of Lyme and is very eye-opening. For deeper education, Dr. h's book, "Why Can't I Get Better?" and Pamela Weintraub's "Cure Unknown" are great resources.

Welcome to Lymenet. We will help you the best we can.

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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lymeandceliac
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No, I just got results back Friday, and I've identified a likely doctor about four hours away. As overnight hotel stays are all but impossible because of worsening chemical sensitivities (too many scents in hotels these days for me), distance is important! I was unable to reach them today but will try again tomorrow for sure!
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lymeandceliac
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Thanks for the welcome!
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me
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Have you checked around with people who have Lyme and reputable Lyme support groups to see if this doctor is Lyme literate and highly qualified? This is imperative.

Some doctors claim to treat Lyme and either give you a lecture about why you "don't have Lyme" or give you 3-4 weeks of antibiotics. Compounding the situation, if you do have Lyme and a doctor tells you that you don't have Lyme, it can be confusing and can also lead loved ones to doubt a future Lyme diagnosis if this is what you have.

A competent LLMD will make a differential diagnosis, meaning he or she will do tests, etc. to rule out other causes and/or find concurrent medical issues.

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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lymeandceliac
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Yes, it was a doctor recommended by PM here and I've researched reviews and his website. He seems quite good - not sure what protocol is on mentioning location, but he's commutable as a day trip for me, which is very key!
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me
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Okay, glad you got someone from here to make a recommendation.

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Judie
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A bulls-eye rash is 100% diagnostic. I'm glad you could find a doctor.

The chemical sensitivity could be related to the Lyme and co-infections.

I was told that my immune system was attacking everything from all my infections (I tested positive for something like 13).

The doctor said that once the infection load is down, my body will stop being so reactive and my allergies/chemical sensitivities would calm down.

Good luck! I hope you feel better soon.

Also, if you've taken cipro, levaquin or any of the fluoroquinolone antibiotics (even one pill), they can cause chemical sensitivity and IBS, along with a host of other problems long-term (even after you stop taking them).

It's something to consider with your history and I'd avoid those medications even if the LLMD recommends them.

FYI, both times I got infected I was not by tall grass. Two of my friends who live in NYC (who never go into nature) chalk it up to them getting infected by petting dogs all the time when they went on walks. Ticks probably transferred that way to them.

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lymeandceliac
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Pretty sure I've never had those three. I'm familiar with those three, and I think I'd recall having them.

What I'm still puzzled is - can ticks fly? Or could I have picked it up from something other than vegetation - could a tick be transferred from a person to a chair to another person, etc? I'm really obsessive about not brushing vegetation - to the point I probably irritate people LOL but there's really basically zero chance I picked it up brushing against vegetation. That's the puzzle for me!

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lymeandceliac
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I should also add - I'm very allergic to most animals, I haven't touched or brushed against a pet since, oh, the last millennium, I'd say. So that's very unlikely too.
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bluelyme
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Coulda been a mosquito, spider,louse, or horse fly....band 31 is very specific...ind is slight positive...band 41 means flagella. ..many bugs have flagella just not good ones

there is papernof some ones mast cell disorder clearing up after parasite meds...lyme reduces immunity so things like giardia and ascaris were having hayday with me ...

parasites is part of puzzle...blood born and larger helminith. ..reg docs cant test either they call them polyps or label as ibs,sibo..

i confirmed spirochettes infection with regular microscopy at 1600x ..can see em plain as day ...see thread here

--------------------
Blue

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hopingandpraying
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The bull's-eye rash is definitive for Lyme.

Also, any biting insects not just ticks can transmit Lyme. My son contracted it from mosquito bites.

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lymeandceliac
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Aside from the Bulls eye, does everything line up as Lyme? I don't want to quit looking for further options that may coexist in addition to Lyme and celiac - I don't want to leave out researching all possibilities.

I know I have bacteria in my stool, occult blood in fecal test (although I wasn't aware I was supposed to avoid red meat, so far, I haven't been able to get the test repeated),

and a ttg (celiac marker) that's still in the mid to upper single digits despite being obsessively GF - often a sign of a second autoimmune disease.

There's signs there's something else yet in addition to Lyme and celiac - or can Lyme cause those things as well?

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

(breaking up your post for easier reading here for many people)

[ 08-02-2016, 04:58 AM: Message edited by: Robin123 ]

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me
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The thing about Lyme is that it is really good at imitating many illnesses. A qualified LLMD should look for Lyme AND other diseases/ causes of illnesses. He or she should look at the big picture and peel off the layers to try and figure out everything that is going on, not "just" Lyme.

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Lymetoo
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I never walk across grass anymore.. not even manicured lawns. One day I walked across about two feet of grass and I found a tick on me that night.

It can happen so easily. Tall grasses are NOT the only way to get a tick on you.

Your tests are pretty definitive ... compounded with a bullseye rash.

Here is reliable information on Lyme and coinfections:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88555

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymeandceliac
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Agree, Lymetoo. I'm very allergic to grass and haven't set foot on grass since the last millennium. My yard has no grass.

The last time I touched any vegetation was at least 12 years ago - the avoidance is prompted by allergies. There's literally zero chance I got this from brushing against or walking over vegetation.

Theoretically, nobody on earth should be lower risk than me for Lyme...therefore it makes sense I'd get it...

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

(breaking up your post for easier reading for many here)

[ 08-02-2016, 04:59 AM: Message edited by: Robin123 ]

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Catgirl
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Yes, looks like lyme.

You can pick up a tick on cement. Really anywhere. They even drop out of trees. You can also pick one up sitting in a chair someone else sat in.

I wouldn't worry about where you got it from though. And yes, it looks like lyme to me. Also, there are co infections that come with lyme. Bluelyme is right--IMO parasites are a big part of the puzzle.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Judie
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I've known of people being bitten in their sleep.

I'm still trying to trace when/how I got infected and more possibilities surface the more I think about it.

I just accept that it's an unknown and there will never be a clear answer. Lyme is everywhere.

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Robin123
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A bull's eye rash is definitive Lyme. We can also have other things going on in our bodies besides the Lyme bacteria.

Re your mention of worsening chemical sensitivity, I was able to improve in that department by sweating out in an FIR (far infrared) environment, first on a biomat, and then in an FIR sauna tent.

After 6 months of weekly sweat sessions, I suddenly could handle smells again. It is possible to dump the toxin load that way.

Your symptoms can improve as you discover what treatments and remedies you respond to.

Re celiac disease, there have been a lot of online health summits about intestinal health, like the Gluten summit, Heal Your Gut summit, Gut Balance Revolution and Autoimmune summit that you could purchase if you want to.

Lots of the speakers have websites. I recommend that you look at Dr Tom O'Bryan's website first, as he directly addresses celiac disease. He also hosted the Gluten summit.

Other knowledgeable speakers with websites: Dr Josh Axe, Donna Gates, Dr David Perlmutter, Sean Croxton, Dr Datis Kharazzian, Dr Jill Carnahan and Dr Allison Siebecker.

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TF
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To get your education on lyme disease, I strongly recommend you read and STUDY the Burrascano Lyme Treatment Guidelines found here:

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

I knew a woman who never went outdoors. However, she still contracted lyme. People in apartments in New York City get lyme all the time.

The way they often get it is from mice that come into the buildings. The ticks are on the mice. When I told this to the lady that doesn't go outdoors, her husband remembered that years before they had rented a house that had mice.

He used to kill the mice and he saw the ticks on them. So, that is a way a non-outdoors person can get lyme.

Another way is from a Christmas tree. A woman that used to post on LymeNet said that they brought a Christmas tree into their house and when it warmed up, a tick climbed off of it and bit her.

So, there are so many stories about how this can happen. When you get a positive blood test for lyme, you can trust that you have it. Now, work on getting a great doctor.

You will get rid of these chemical sensitivities once you get good lyme treatment including detoxification. It is not uncommon for a lyme patient to be sensitive to many things including tags on clothing and anything new, going into stores, etc.

Be glad you got your diagnosis. Now, you are on your way to making progress!

You may want to take a look at this old thread that talks about chemical sensitivities that come from mold exposure and how this then can lead to lyme disease:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/112279?#000000

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Keebler
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-
You mention avoiding grass, etc. Consider:

Anywhere birds fly or flitter, squirrels or chipmunks (or their cousins) scamper, pets walk or romp . . .

Christmas trees or holiday (or any seasonal) greenery decorations / décor pieces . . .

trees or bushes can provide jumping off points for ticks, too, as can surfaces where they can crawl and /or move from one mode of transportation to another.

Bird feeders, etc.

Mosquitoes and other vectors can also carry lyme.

These other modes are not at all to create unease as I'm of the mind I just still be part of the natural world - in some ways. Being mindful while enjoying nature is important, too.
-

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lymeandceliac
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Thanks for all the replies and support!

The mold thread, I will read for sure.

I'm really obsessive about all vegetation. My yard has no grass - it's all concrete, artificial turf, crushed rock. No Christmas trees as they're a big allergen for me. I just don't go out in nature at all,

I can actually recall the last time I brushed vegetation - it was 2004, and caused a reaction for me.

Everyone in my house showers first thing when coming inside on advice of an allergist, have for more than a decade. New house, definitely no pest problems. But it can indeed happen anywhere -

I'm probably the lowest risk person on the planet for Lyme as I'm totally a non-outdoors, non-vegetation person, so if it can happen to me, everyone should be very, very aware it can happen to them!

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

(breaking up the post for easier reading for many here)

[ 08-03-2016, 11:17 PM: Message edited by: Robin123 ]

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lymeandceliac
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So if I follow - the theory is Lyme disease can develop simply from mold exposure and not a tick bite? Despite the rash that I remember as Bulls-eye, I wonder if that happened to me....

I actually had milder symptoms of much of the same things when living in a place where outdoor mold levels were high, then moved to a dryer climate and got better. I moved here about a year before these symptoms started - although I was already suffering from what I now recognize as celiac symptoms.

I've hypothesized that the bacteria could have formed also as part of the very significant problems I had related to celiac...total hypothesis though.

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Keebler
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Q: "the theory is Lyme disease can develop simply from mold exposure and not a tick bite?" (end quote)

No. Lyme cannot develop simply from mold exposure. Absolutely not.


Lyme is an infection that (when present) is transmitted to a host

by the bite of a vector,

possibly through intimate / sexual relations,

possible through blood transfusions, organ transplants, other blood products / needle pricks, shared needles, and the like

or in gestation to a fetus if the mother is infected - and perhaps the father might have some connection as borrelia has been found in sperm (but that's a whole other conversation and more work for scientists to explore).

[Treatment of the mother prior to and during pregnancy is advised.]


However, for someone who might not know they have lyme, mold exposure (or other stressors) can certainly send their health into a downward spiral, though and bring lyme to the forefront if they have been undiagnosed.
-

[ 08-03-2016, 10:14 PM: Message edited by: Keebler ]

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lymeandceliac
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Makes sense. My mold issues would have been years before Lyme onset, so it's probably not the case for me. Still interesting though!
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Keebler
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By the way, for anyone ever diagnosed with lyme or other tick borne infections such as babesia, etc.

Never donate blood. For life. Never donate any blood borne products. Find other ways to support the American Red Cross and similar organizations but do not donate blood.

Do not donate ANY bodily tissue at all after death. Be certain all family members are aware of this. It's so very important.

If you have an organ donor card, be sure to change it yet your "next of kin" and anyone else who might change that after you die must know not to do so.
-

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lymeandceliac
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Keebler - why is that? I've actually been advised (prior to Lyme)to donate blood as a way of bringing down very high ferritin levels, but I haven't done that yet...
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Keebler
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Transmission issues not just regarding lyme but also other TBD. If anyone has ever had Babesia, they are barred for life from donating but lyme is also something that can be trouble. None of us would ever wish this on anyone else, ever.

But the blood and tissue banks are not yet considering all this because the IDSA / CDC / NIH are so out to lunch on the matter. But we know and we have to prevent any possible transmissions to others.

Once you get a proper assessment with an ILADS educated LLMD, you can discuss the details with them.

Referring to my previous rough post:

Lyme is an infection that (when present) is transmitted to a host

by the bite of a vector,

possibly through intimate / sexual relations,

possibly through blood transfusions, organ transplants, other blood products / needle pricks, shared needles, and the like

or in gestation to a fetus if the mother is infected - and perhaps the father might have some connection as borrelia has been found in sperm (but that's a whole other conversation and more work for scientists to explore).

[Treatment of the mother prior to and during pregnancy is advised.]
-

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dal123
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Lyme and Celtic get checked for MTHFR. If you are positive and get treated with deplin and methyl B12 injections your ferritin will normalize. It won't be so high. The MTHFR mutation causes abnormally high ferritin levels. I am one of those.
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Robin123
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The 23andme saliva test can show any methylation gene defects. Then a knowledgeable Lyme doctor can help boost the missing cycle(s) with appropriate supplements.
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