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Misdiagnosed Lymes Disease

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Old 09-07-2011, 10:19 PM   #1
Join Date: Sep 2011
Location: vancouver,wa,USA
Posts: 4
bethlany88 HB User
Exclamation Misdiagnosed Lymes Disease

For 12 years I was in a litteral HELL! I suffered with Chronic fatigue, brain fog, memory problems, joint pain, bone pain, panic attacks, leg jerks, shortness of breath, blurred vision, vertigo, dizziness, sleep paralasis, mild sleep apnea, muscle weakness, ow blood sugar, mood swings, phobias,etc.

I searched online constantly and must have visited over 20 DR.s and had testing upon testing to figure out was wrong with me, of course I usually got what alot on her got "Its all in your head." :P

Then I read about lymes disease and i went ah ha, these people have ALL the symptoms I myself have suffered with and I knew I had been bitten by a tick on the scalp when I was a child. So I got a test done. Lyme titer came back positive and western blot only showed 40 or the 41kd band and one other band so was determined to be an indeterminent Western Blot. Dr. was unsure if I really had it or not due to this but treated me with a month of IV Rocephen as well as follow up abx. I did not get better, so once again it was all in my head.

Finally on a whim, because my kids were a bit underweight, I had my two children tested for Celiac Disease, an auto immune disease against wheat/barley/rye/spelt/kamut/n often oats. One tested positive the other just under the cut off. So I tested and myself just under the cut off. However Celiac is genetic and their father perfectly healthy his whole life so being sick as I was and knowing my father bloated terribly too eating breads etc. I was sure I was actually positive. The test is only 75% accurate in the first place.

So after going gluten free my symptoms began to melt away. The sever panic attacks I had had for over 17 years *POOF* disappeared, the fatigue, brain fog, fatigue and all the symptoms slowly began to lift as well. I was released from a nightmarish prison.

I know not everyone her with negative lymes test, or positive tests have Celiac as I do, however I am CERTAIN there are a few who do and if I can help just ONE person be free from prison? Well thats why I am writting this.

One thing though, if you are diagnosed positive or close to positive (ask for the test values!) it is HARD to get out all gluten and people who THINK they are eating gluten free and see no results thus giving up, may have missed their chance for freedom. Gluten is in so many food people do not realize!

Even crosscontamination will keep a Celiac sick, meaning if you are eating something like lays potatoe chips that have no gluten ingrediant you will still get 100-3000 ppm of gluten simply because the product ran across the same belt. IT ONLY TAKES 50ppm to KEEP you sick! So do the research and find out how to go TRULY Gluten Free, not even ONE bite intentionally.

Also most DO go through detox so to speak and you often get sicker the first 1-3 months before you get better.

Celiac is often diagnose easily when you have the typical symptoms...bloating, gas, diahrea, but some of us dont ever present with these symptoms.

I pray at least one person who actually has Celiac Disease passes by this thread and reads it finding freedom from prison as I have. <3

God Bless!!!

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sarahp1975 (09-21-2011)
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Old 09-14-2011, 02:59 PM   #2
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Join Date: Sep 2004
Location: Canda
Posts: 103
Jacquie23 HB User
Re: Misdiagnosed Lymes Disease

well it all comes down to diet right? The proper diet can improve any condition and in my opinion. The 2 diseases you are talking about, are very similar in symptoms, as well as very similar in diets; and really the only way to ever improve lyme is to improve your diet, and the only way to improve ciliac is to improve your diet; and BOTH you have for the rest of your life. so there is no cure, but diet can help improve.

I too thought I had lyme when I was younger, all though unlike you I was never bitten by a tick that I know of. But I was sure it was lyme; as my body was falling apart, and like you.. i was told it was all in my head, the strings were wearing thin and it wasnt until things started breaking, and I started getting diagnosed with everything, then cilac was discovered.

Now that I know the truth I look back at all the problems I have that will probably not change but could have prevented if I was on a gluten free diet as a child. And I know now that this was the cause of my mothers early death. you are VERY lucky to have discovered this in your children as they are so young and they usually dont know its ciliac until its almost too late.

i have seen such HUGE improvements and they don’t really know the cause of ciliac yet, so I have got my husband on this diet too even though he does not have it in hopes to help him gain more weight, and I know lots of people who are going gluten free even though they do not have cilac and it seems to be really benefiting them too. If you don’t know what you have, both the diet for Lyme and ciliac are good, I fyou are underweight I would say follow a ciliac diet, if you are obese, maybe try the lyme diet first.

Last edited by Jacquie23; 09-14-2011 at 03:05 PM.

Old 11-20-2011, 06:58 PM   #3
Join Date: Aug 2011
Location: rexford, mt usa
Posts: 5
marti484 HB User
Re: Misdiagnosed Lymes Disease

Thank you for your post. I was recently clinically diagnosed with Lymes, but tested twice (once w/ Igenex) and had negative results. I received the diagnosis because I have all the symptoms and was in an area known for Lyme just prior to the symptoms. I was quickly given a rx for doxy for 2 months. However, my symptoms did not all go away. I can relate to the "it's all in your head" diagnosis from the doctors. I think my MD thinks I am on the internet and making myself sick. However, I have been extremely healthy and a runner for many years. I have been told that I took enough antibotics and now I should be well. I was advised to take zanax and Librax and wait it out. I did receive a diagnosis several years ago of IBS. I have treated it a few times for no more than 6-12 months with Librax. I never have diahrrea, but have a slow digestive system. I have had 2 colonoscopies. Once with a biopsy of stomach, small and large intestine. Never any mention of Celiac Disease. After talking to my daughter and reading your post I am wondering if I have some intolerance to Gluten. Could feeingl like you have the flu with body aches every day as well as nuerological problems be symptoms of Celiac? I am just now looking into this and would love some input. No family history of Celiac. Thank you.

Old 11-30-2011, 10:08 AM   #4
Join Date: Sep 2011
Location: vancouver,wa,USA
Posts: 4
bethlany88 HB User
Re: Misdiagnosed Lymes Disease

Sorry for the late response, just did check my email. I guess it depends on what you mean by flu like symptoms. For me I would occasionally get fevered or flushed, I felt like the walking dead with ZERO energy, I had nausea, bone and joint pain, brain fog, anxiety, irritability etc. I think I would actually rather have had the flu! lol My celiac test was negative, or rather just a little below the cutoff point, however both my son and daughter were positive, and its genetic so I treated myself with a very strict gluten free, and cross-contamination free diet and began to see some real changes after 3 month, more noticeably at 6 months and began to feel like myself at the year mark. Antibiotics always made/make me sick. I was told it was from "die off" when I thought I had lyme. In actuality the body recognizes yeast/candida similarly like gluten thus the sickies I got/get on abx wasnt die off but overgrowth of candida no surprise. What are your main symptoms?

Old 04-12-2012, 10:07 AM   #5
Join Date: Apr 2012
Location: new jersey
Posts: 3
thegymprincess HB User
Re: Misdiagnosed Lymes Disease

I've been gluten free forever. Recently I got many of your symptoms but they didn't go away. Lyme means you are reactive to gluten products. If you get these symptoms again out of the blue, I recommend you get re-tested. Going gluten free in today's world is supremely impt for optimal health. I recommend it too. I am so happy the madness is over for you. It is terrible when you feel ill all day. Koodos for finding your own cure!

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