LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Suspect Possible Lyme's

 - UBBFriend: Email this page to someone!    
Author Topic: Suspect Possible Lyme's
bryguy27007
Junior Member
Member # 39761

Icon 1 posted      Profile for bryguy27007     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello everybody. I feel that Lyme's disease may explain my current situation. A little background. In 2009 I started showing severe symptoms of gluten intolerance but didn't realize what it was until 2010. I went on a gluten free diet starting early 2010, and dairy free later that year. After going on the diet my symptoms diminished but I still ingest trace amounts of gluten in my diet. I currently work at a pizza place where there is flour all around and it is impossible to avoid ingesting trace amounts into my system. I guess I can't rule out only having gluten intolerance until I leave the pizza place and eliminate all traces of gluten in my system for an extended period of time.

It is much worse when I eat gluten but I have severe mind fog often, to the point where I can't really carry on a conversation or read or comprehend anything. I also have occasional tinnitus that causes me anxiety. I have been dealing with pretty severe anxiety and depression since 2009. I also feel like my joints ache a deep, deep ache that is a really awful feeling, and that my muscles are really sore and I feel like they are not able to do even simple tasks sometimes, even though they can.

All of these symptoms are much worsened by accidental gluten ingestion (even a tiny amount). I haven't noticed a connection with gluten and the tinnitus yet but I also haven't been looking for a connection there. I have heard that these symptoms are often times present in cases of Lyme's disease. I am in the woods a lot and have had a lot of ticks on me in my life, some attached and some not. I have noticed only wood ticks, not deer ticks, not to say I couldn't have been bitten by a deer tick.

My question to you guys is, does this sound like enough pertinent information that I should go see a doctor that specializes in Lyme? I am not quite sure what the next step is for suspected Lyme. I see people here posting test results but I am not sure if they are ordering those from home, from a GP, or from a Lyme specialist (there is a 4 letter acronym here that I am forgetting). It sounds like "Western Blot" is the preferred test to diagnose Lyme's. Would the test still provide an accurate result if the bite could have been years ago?

I found this website: IGenex but I'm not sure if that is the best route to go.

I'm sure I forgot to provide a lot of important information so I will post here if/when I think of it or if anybody has any questions that I can answer to shed more light on my situation I would greatly, greatly appreciate it.

Posts: 8 | From Minnesota | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, it definitely sounds like you have lyme and company. You should see a lyme literate physician (LLMD). The western blot is just a test. It has a considerable false negative rate, which is why you should see a lyme literate specialist.

The correct diagnosis for lyme is a clinical one anyway. Go to www.lymediseaseassociation.org and go for the ILADS docs (International Lyme and Associated Diseases Society) They are cutting edge in this field.

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

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
RC1
LymeNet Contributor
Member # 31923

Icon 1 posted      Profile for RC1     Send New Private Message       Edit/Delete Post   Reply With Quote 
You are spot on for the testing, Igenex is the best Western Blot.

I might be completely off base here but after reading your post it really reminded me of my life prior to getting Lyme disease, I had mold illness (I had no idea what was going on with me at the time) and I had it for a very long time prior to my tick bite.

I was so familiar with the symptoms that it didn't occur to me that something was terribly wrong as my symptoms were getting more intense, because now I had Lyme too.

What I'm getting at here is the symptoms of Lyme and Mold can be the same. I went gluten free a long time before I got Lyme and it really controlled my symptoms.

It could totally be Lyme and I think you should test. I'm just sharing with you the way things unfolded for me.

[ 12-28-2012, 03:55 PM: Message edited by: RC1 ]

Posts: 845 | From Northeast | Registered: May 2011  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Lyme (as well as certain other infections) can CAUSE gluten troubles, either by the damage to the gut by infection - or by triggering dormant genetic celiac disease.

Celiac, alone, can cause all kinds of troubles, even with neurological damage (and even in the absence of digestive woes.

You might want to look over the symptoms list for lyme - and in the "what else to consider" thread, see the links for CELIAC.

BTW, most lyme literate doctors really want their patient 100% gluten free. It matters that much.

Even in the absence of a genetic celiac, being gluten free can be very important during treatment and into remission. If not a genetic connection, then some gluten may be just fine, in moderation.

For now, the best thing you can do is find another job where you are no exposed to wheat (or other gluten flours flying around).


www.celiac.com & www.celiacsolutions.com

CELIAC Sites

HIDDEN SOURCES OF GLUTEN (each link has detail the others may not):

http://www.glutenfreehelp.info/wp-content/uploads/2011/03/TS-Hidden-Sources-of-Gluten1.pdf

http://www.celiacsolution.com/hidden-gluten.html

http://www.tacanow.org/family-resources/hidden-sources-of-gluten/

http://blog.primohealthcoach.com/blog/bid/74158/Hidden-Sources-Of-Gluten

http://www.practicalgastro.com/pdf/September08/HlywiakArticle.pdf

7-page pdf
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
bryguy27007
Junior Member
Member # 39761

Icon 1 posted      Profile for bryguy27007     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well this is a little scary. I've heard some horror stories about Lyme (not the least of which on these forums). I had a panic attack thinking about this last night. This morning I am still a little scared but also a little hopeful that maybe things can get better if this is the answer to the question of "what is wrong with me?" Maybe I don't need to live with anxiety and depression and live a normal life.

Does it usually get worse before it gets better?

I am going out of town on the 2nd for 2 weeks so it will complicate things a little bit, which is a shame because I don't think that I will be able to get this off my mind.

So is it better to look up a LLMD in my area or order the test from Igenex? Is one much more expensive than the other? I'm guessing insurance won't cover most of this.

Thank you for the links, I was looking over them yesterday, that is what set off that panic attack.

I really appreciate everybody's help so far. I did a search and found 3 ILADS physicians in my area, including one in my city. I suppose I should set up an appointment with them and see what they have to say.

Posts: 8 | From Minnesota | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
I would first schedule an appointment with a LLMD, after reading over some of these links.

You might ask their office which LAB to have do the blood draw, etc. and if they'd suggest that in advance.


The Basics

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease

=============================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What ILADS is & WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
bryguy27007
Junior Member
Member # 39761

Icon 1 posted      Profile for bryguy27007     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had 26 or 27 of those symptoms on the 46 symptom checklist. In my eyes that warrants further investigation. Once again, thank you everybody for your help. This is a really kind community and if I do end up being diagnosed as Lyme positive I will definitely be sticking around and becoming part of the community.

I will give the LLMD a call and set up an appointment.

Posts: 8 | From Minnesota | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Anxiety, depression and panic attacks don't sound like "just" celiac.

As much as possible, let your mind be at peace, knowing you are engaged in finding out the puzzles clues.

Still, if lyme (or whatever else), these symptoms can be very rough, indeed.

MAGNESIUM & FISH OIL are your two best helpers right now, along with some basic ADRENAL SUPPORT. I suggest CORDYCEPS & ASHWAGANDA.

B-Complex vitamins, too (in the middle of a good meal, never on empty stomach).

This should help calm anxiety to a degree.

Avoid ALL food additives, especially anything "diet" and MSG. They can cause anxiety, etc.

True, likely insurance will not cover much of this. Still, you can start with some things within your control.

It's a lot to take it so, as you ease into the "library" take it one step at a time. And take really good care of yourself.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
bryguy27007
Junior Member
Member # 39761

Icon 1 posted      Profile for bryguy27007     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you, that's really what I'm trying to focus on right now. I feel like I am at an advantage having already been eating completely gluten free and dairy free for 2 or 3 years now. I definitely am conscious of what I'm putting into my body and read every label. I was taking magnesium but it was a little expensive so I didn't buy more when I ran out. I will have to go and get more. Is it the omega fatty acids in fish oil that help? Because I get my omegas from hemp seed as I like those better.

I will look into the adrenal support, that sounds like a really good idea. It gets very annoying having your fight-or-flight response constantly activated, I hope those will help.

Posts: 8 | From Minnesota | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
These kinds of food additives and processed foods are far too "excitatory" for the nervouse system.

For you, especially also limit your intake of any extra Glutamine / Glutamate. See the post here about that and why:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors . . .
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
bryguy27007
Junior Member
Member # 39761

Icon 1 posted      Profile for bryguy27007     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you for the links. All of the links are links that lead to links that lead to links. I'm going to have a lot of reading to do.

I forgot to add some of my other symptoms:
-Extreme weight loss (got down to 138 pounds at 6 feet tall, people were genuinely worried about me). Right now I'm fighting to hold at 145 pounds which is still too little for my height
-Loss of libido

I also haven't had any soda in about 4-5 years. I avoid natural and artificial flavors because of their possible gluten content, but if the product is certified gluten free I will generally eat it anyway. I will now be more conscious of that.

Ouch, apparently eggs and hemp seed both contain glutamine. I eat 4 eggs with hummus and hemp seed for breakfast every morning. There aren't many foods left that I can eat. I guess I'll have to start looking for replacements.

I already severely limit my intake of aspartame and I don't remember the last time I've had MSG. I'm glad I've been doing a lot of this already. It's too much to take on all at once.

Posts: 8 | From Minnesota | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
byrguy, sorry you have to go through this. It is frightening, we all know. Everyone is different when it comes to this disease, and what works for some may not work for others and vice versa.

You may not need to avoid eggs. In fact, many feel better by eating eggs because of all the nutrition they provide, including Vit D. A great food I discovered that is gluten free and very versatile is quinoa.

You can make it as a porridge for breakfast - or as a starch to have with lunch or dinner. You can spice it up and add veggies to it. It is extremely nutritious. I usually add flax seed to mine.

There is an excellent book that you might be able to get at the library or order through Amazon... The Lyme Diet by Dr. Nicola McFadzean.

Also, there is a great website to get more information about this illness and various treatments at www.treatlyme.net. In January, there will be some Tuesday night Webinars that you can either listen to or take part in that might be of great help to you by that time.

Good luck and welcome!

Posts: 2386 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Eggs (from free-range, organically fed hens) and hemp (which is nearly always organic) should be fine. Indeed, they are both excellent foods.

I tried to specify ADDED glutamine / glutamic acid. What you get in your diet, from food, is likely fine as long as you are not eating a ton of foods that contain lots of this (see Wilson's article in that set).

The ADDED glutamine can cause trouble in certain protein powder or shakes on the market. Some are sky high.

To help heal a leaky gut, though, a very tiny bit of glutamine can be very helpful. Magnesium would help balance it out.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
I mentioned certain supplements that should be of some help now for your symptoms - as you wait for a LLMD appt.

Support only, these adrenal suggestions would not address infection though there are some other supplements that can help in that regard (allicin, olive leaf extract, etc.).

Adrenal support can help balance mood.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP & ADRENAL SUPPORT
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Might you be able to transfer to a different job within the pizza company where you work - going to an office- or maybe a sales team - where there is not wheat flour flying around?
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
bryguy27007
Junior Member
Member # 39761

Icon 1 posted      Profile for bryguy27007     Send New Private Message       Edit/Delete Post   Reply With Quote 
Ok, good. I shop at co-ops and buy local, organic food. So my eggs should be good then.

I probably wouldn't be able to transfer to a different job within the company, although I could ask. We're a pretty small company and the commissary is pretty full I think.

So I mentioned this to my father and he ended up finding an appointment for lab work before we left town on the 2nd. I'm not sure what test they are running except that it is for Lyme's disease. I am getting blood drawn for it tomorrow. If it's not the right now that's ok because our deductible is already paid off so we can try again after getting back.

I'm trying not to think about it or do much of anything about it until I do or do not have a diagnosis for Lyme's.

Once again, thank you everybody for the help.

Posts: 8 | From Minnesota | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Blood drawn tomorrow may not be sent out until Wedneday.

You need to find out WHAT LAB, WHAT TEST.

Igenex, I hope. Follow the draw, prep and ship directions to a "T"

If not Igenex, wait.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Lab detail, test detail here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease

=============================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What ILADS is & WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
=

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
A blood draw the day before a holiday can slow up shipping and testing. It may be best to wait.

Call Igenex tomorrow and ask (and, again, if it's not Igenex, it's best to just not do it until you see an LLMD).

Hopefully you don't have Kaiser. Kaiser does not to the testing correctly.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
See if you can connect with this group first:

http://mnlyme.com/

Minnesota Lyme Disease Association
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
lost11
LymeNet Contributor
Member # 34607

Icon 1 posted      Profile for lost11     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have a family member with celiac disease. Anxiety was part of it. Blood tests for that real simple. Then its onto gluten free as above posters have mentioned. Very wide range of symptoms with celiac, could very well be the issue. I would not jump to Lyme so quick. Not everyone with odd symptoms has Lyme disease. Deep breathe. :-)
Posts: 267 | From South | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
lost11
LymeNet Contributor
Member # 34607

Icon 1 posted      Profile for lost11     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have a family member with celiac disease. Anxiety was part of it. Blood tests for that real simple. Then its onto gluten free as above posters have mentioned. Very wide range of symptoms with celiac, could very well be the issue. I would not jump to Lyme so quick. Not everyone with odd symptoms has Lyme disease. Deep breathe. :-)
Posts: 267 | From South | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
bryguy27007
Junior Member
Member # 39761

Icon 1 posted      Profile for bryguy27007     Send New Private Message       Edit/Delete Post   Reply With Quote 
Ok, I'm not sure which lab is doing the tests so I am going to wait and schedule something through Igenex. If I'm going to do this I'm going to do it right.

Thank you for the link to MNlyme, that is going to help a lot. It seems like a very valuable resource.

I am not counting my chickens before they hatch so to speak, I'm waiting to hear a positive diagnosis before I take any action. Gluten intolerance explains probably 80% of my symptoms while Lyme's seems to explain all of those plus some more. The blood test for celiacs is inaccurate and you need to be eating gluten for 2 weeks before you can get a (possibly) positive result. Considering what gluten does to me, I am not eating gluten for 2 weeks. Plus there is also gluten sensitivity, which is different from celiacs, and not able to be tested for.

It could just be gluten intolerance, yes, that is true. I am taking 2 weeks off of work for a trip so I will be away from all of that flour for a while. Maybe that will shed some illumination on the situation.

Posts: 8 | From Minnesota | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
As you know so much about gluten already, are you gluten-free? Test or not, considering what you write, this is very important to avoid even a trace of gluten - and avoid being in or eating food from any kitchen where wheat flour flies, so to speak.

It's true, what you say about some tests for celiac, however . . .

Blood test for GENES is better than other kinds of blood tests. You might be able to determine if you have genetic celiac. Of course, various infections can "cause" it, too - or cause "leaky gut" which makes gluten trickier.

HIDDEN SOURCES OF GLUTEN links here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors;

GMO foods that destroy the GI Tract; Gluten; Dairy.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
bryguy27007
Junior Member
Member # 39761

Icon 1 posted      Profile for bryguy27007     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh yes, I've been eating completely gluten free for 2 or 3 years now. Definitely no stranger to the diet. I am also very aware of cross-contamination and bring my own pan everywhere where there will be cooking food. The last piece of the puzzle is work, which this 2 weeks off should shed some light on. I'm in the process of filling out applications to other jobs now.
Posts: 8 | From Minnesota | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
n.northernlights
LymeNet Contributor
Member # 17934

Icon 1 posted      Profile for n.northernlights     Send New Private Message       Edit/Delete Post   Reply With Quote 
if you are essentially gluten free, the celiac tests will be negative.

Note there is this gluten intolerance that can go away after successfull treatment for lyme, and those typically test negative for celiac.
But they must be totally gluten free as long as they have lyme disease.

Posts: 366 | From Europe | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.