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The Lyme Disease Thread


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#1 CarlaB

 
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Posted 09 July 2007 - 11:59 AM

Scott asked me to start a separate thread on Lyme Disease a few months ago, but I didn't because quite honestly, I was too sick. I could post, but I wasn't up to being creative enough to start a thread. After 6 months of treatment, I'm finally up to the task.

I get at least one PM per week from someone on this message board wanting to know more about Lyme Disease, so I thought it was time to have a place to post these questions ... not because I don't want to answer them, but because the questions are always the same ... so I thought more people could benefit from a thread whereas only one person is benefitting from a PM. (Still feel free to PM me about it if you prefer).

One thing I want to say up front is, there is no known connection between celiac disease and Lyme Disease.

So, why is it discussed here so much? One reason is that both diseases are common and underdiagnosed. They have similar symptoms, in fact, my LLMD (Lyme literate MD) tests everyone for celiac to rule it out in his differential diagnosis.

Another reason is that it is very common for someone with Lyme to also be gluten intolerant.

I know it's easiest for me to read posts that are broken up, so my next post will be a symptom list.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

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#2 CarlaB

 
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Posted 09 July 2007 - 12:01 PM

This symptom list is copied from www.canlyme.com. If you have 20 or more of these symptoms, you should be tested for Lyme.


Symptoms of Lyme Disease
  • The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
  • Rash at site of bite
  • Rashes on other parts of your body
  • Rash basically circular and spreading out (or generalized)
  • Raised rash, disappearing and recurring
    • Head, Face, Neck
  • Unexplained hair loss
  • Headache, mild or severe, Seizures
  • Pressure in Head, White Matter Lesions in Head (MRI)
  • Twitching of facial or other muscles
  • Facial paralysis (Bell's Palsy)
  • Tingling of nose, (tip of) tongue, cheek or facial flushing
  • Stiff or painful neck
  • Jaw pain or stiffness
  • Dental problems (unexplained)
  • Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
    • Eyes/Vision
  • Double or blurry vision
  • Increased floating spots
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light
  • Flashing lights/Peripheral waves/phantom images in corner of eyes
    • Ears/Hearing
  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sounds
  • Ringing in one or both ears
    • Digestive and Excretory Systems
  • Diarrhea
  • Constipation
  • Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
    • Musculoskeletal System
  • Bone pain, joint pain or swelling, carpal tunnel syndrome
  • Stiffness of joints, back, neck, tennis elbow
  • Muscle pain or cramps, (Fibromyalgia)
    • Respiratory and Circulatory Systems
  • Shortness of breath, can't get full/satisfying breath, cough
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Endocarditis, Heart blockage
    • Neurologic System
  • Tremors or unexplained shaking
  • Burning or stabbing sensations in the body
  • Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
  • Pressure in the head
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness, difficulty walking
  • Increased motion sickness
  • Lightheadedness, wooziness
    • Psychological well-being
  • Mood swings, irritability, bi-polar disorder
  • Unusual depression
  • Disorientation (getting or feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Too much sleep, or insomnia
  • Difficulty falling or staying asleep
  • Narcolepsy, sleep apnea
  • Panic attacks, anxiety
    • Mental Capability
  • Memory loss (short or long term)
  • Confusion, difficulty in thinking
  • Difficulty with concentration or reading
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Stammering speech
  • Forgetting how to perform simple tasks
    • Reproduction and Sexuality
  • Loss of sex drive
  • Sexual dysfunction
  • Unexplained menstral pain, irregularity
  • Unexplained breast pain, discharge
  • Testicular or pelvic pain
    • General Well-being
  • Unexplained weight gain, loss
  • Extreme fatigue
  • Swollen glands/lymph nodes
  • Unexplained fevers (high or low grade)
  • Continual infections (sinus, kidney, eye, etc.)
  • Symptoms seem to change, come and go
  • Pain migrates (moves) to different body parts
  • Early on, experienced a "flu-like" illness, after which you have not since felt well.
  • Low body temperature
  • Allergies/Chemical sensitivities
  • Increased effect from alcohol and possible worse hangover

  • 1
gluten-free 12/05

diagnosed with Lyme Disease 12/06

#3 CarlaB

 
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Posted 09 July 2007 - 12:09 PM

If you think you might have Lyme, you will want to be tested by IGeneX. It's the only lab that does a complete Lyme test (Western Blot) and since all they do is test for Lyme, their tests are more sensitive than the local labs who don't do it as often. I called IGeneX and had a test kit sent to my house. I took the kit to my doctor and asked for the test to be done (it's a blood draw). Then my doctor sent it to the lab.

When you get the results, you need to ask for a copy of them. The CDC has set standards for tracking purposes, but they were not intended to be used for diagnostic purposes. The problem is that so many doctors are inexperienced in treating Lyme that they use the CDC standards.

For diagnosis, you will need to see a Lyme specialist. There is a lot of information on www.ILADS.org.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#4 mftnchn

 
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Posted 09 July 2007 - 11:10 PM

Great thread, Carla!!

I had 13-15 of these symptoms when I was diagnosed in 2000. Perhaps we could also post some of the treatment approaches?
  • 0
4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#5 dlp252

 
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Posted 10 July 2007 - 05:51 AM

I had 45 of the 75 listed at one time or another! Lyme was discovered for me back in April. I haven't started agressive treatment yet...so far just supplements and some herbs, but I have other issues the doctor wants to address first I think. Currently I'm taking the supplements to strengthen my immune system and my body's ability to detox so we can begin some kind of treatment for one of these things. :P
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#6 CarlaB

 
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Posted 10 July 2007 - 06:27 AM

Great thread, Carla!!

I had 13-15 of these symptoms when I was diagnosed in 2000. Perhaps we could also post some of the treatment approaches?


Thanks, Sherry.

I think that's a great idea! I also think some testimonials would be good for the thread. :)
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#7 mftnchn

 
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Posted 10 July 2007 - 05:24 PM

My story prior to diagnosis and treatment:

After many years of symptoms that started in the early 1980's, I was diagnosed with lyme disease in 2000. I had a tick bite back then in the Taiwan countryside.

My symptoms are primarily fatigue, brain fog, and muscle/joint pain in the back and extremities. The pain moved around. The initial episode was a horrible bout with shoulder/neck pain that a doctor friend finally medicated with prescription pain meds and muscle relaxants that made me out of it totally. But through the fog the pain was still intense. It lasted several days. After that it was never so severe but would flare every once in awhile. Over time, I developed morning stiffness, achiness all through the day, with different joints and muscle groups effected. By the time I was diagnosed, there were days I could hardly go down or up a few stairs. I was living on aspirin, 4 at a time, sometimes every 4 hours around the clock. The pain was always worse at night. I could carefully swim a few mild laps in the daytime and feel okay after, but have it flare horribly at night.

In the mid to latter 1980's I went to a rheumatologist who did a whole battery of tests and even a bone scan. The diagnosis was possible rheumatoid arthritis. The medication he gave me didn't help.

In 2000, I went back to the rheumatologist. He said it was not rheumatoid arthritis, but he didn't know what it was. My diagnosis was polyarticular joint pain or some such.

Fortunately, I also went to see a doctor who I knew treated chronic illness. To my great surprise he said he thought I had lyme disease. My test through Bowen Labs was positive for borrelia, babesia and erlichesia.
  • 0
4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#8 mftnchn

 
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Posted 10 July 2007 - 05:34 PM

My treatment story:

I was on a series of different antibiotics, 6 weeks or so of each. I started with peniciliin shots, and also did IV rocephin (sp?), and the rest were oral. I had die-off reactions, which was the only sign we were on the right track.

Both the doctor and I had doubts after several months of treatment, but kept going. It took eight months before my symptoms started to really show a clear improvement.

I remained on ceptin and biaxin for a couple of years, pulsing flagyl as well. In addition there were lots of other supplements and things to support my body through this treatment. Eventually I was just on azithromycin alone.

After a couple of years I was stable, however, if we cut back the antibiotics I would immediately become symptomatic.

About 3-4 years into treatment he started me on Cat's Claw. I herxed on this, so had to build up gradually. Eventually I was on 20 drops a day. With this, I was able to cut back antibiotics over a two year period and finally went off altogether in February, 2007.

I did well for several months but the lyme began to recur in May, 2007. about a month after I went gluten free.

So, I am currently back on antibiotics, and trying to figure out how the lyme and celiac have interplayed and how to successfully defeat the lyme without having to live on antibiotics.
  • 0
4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#9 mftnchn

 
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Posted 10 July 2007 - 06:12 PM

Okay, last section of my story: Co-existing issues.

Allergies went crazy about the same time as the lyme symptoms started. Foods, chemicals and inhalents. I was a universal reactor. We thought the pain symptoms were also allergy problems. My allergist said he thought something had hit my immune system hard, but we didn't discover what. He did discover parasites: ameoba and protozoa and treated those which helped. Allergy injections and avoidance has helped.

Celiac is a recent discovery--and I don't have the gold standard diagnosis due to where I live. Since April 2007 I have been gluten free and casein free. Main symptom is constipation, which goes way back to probably childhood.

Metal toxicity is also an issue, which my LLMD determined at the same time lyme was diagnosed. Had all amalgams removed in 2000 by a regular dentist. Have been gently chelating, but haven't gotten the levels down very much.
  • 0
4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#10 Guest_micah_*

 
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Posted 10 July 2007 - 06:47 PM

Thankyou for this thread. I have approx 28 of the symptoms. I have been bitten by ticks here and there in my lifetime, but don't remember one when I got sick in 1998. It felt like something attacked my brain and I could see spinning floaters in my eyes, millions of them. I didn't see a tick, but did have a raised rash at the time on my arm - but no bullseye, so...I don't know. It sounds so complicated to get it treated and my infectious disease specialist flat out refused to test me for it when I asked him. But maybe if I come with test in hand, my primary care doc might do it. it might not even be Lyme, I'm grasping at straws at this point. I've all but given up hope that I will ever have a day of wellness again.

Micah

p.s. how did your doctor discover parasites: ameoba and protozoa? I've never been tested for any of those things as far as I know. I've had routine blood tests and mRI's (showed "bright spots of unknown etiology" and "pansinusitis" which amounts to "nothing wrong" in my doctor's eyes.)
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#11 mftnchn

 
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Posted 10 July 2007 - 07:00 PM

I've all but given up hope that I will ever have a day of wellness again.

Micah

p.s. how did your doctor discover parasites: ameoba and protozoa? I've never been tested for any of those things as far as I know. I've had routine blood tests and mRI's (showed "bright spots of unknown etiology" and "pansinusitis" which amounts to "nothing wrong" in my doctor's eyes.)


Hi Micah,

I have been there too. Please hang in there and keep persisting. Your experience with your doctor is not unusual. The floaters are really a common symptom for lyme.

Re parasites. The usual stool specimen doesn't work because ameoba for example disintegrates if exposed to oxygen. Its been a long while since I tested. The first test required a doctor to get an internal swab--you have to get the mucous. Then a special medium. The second time I did it, you could do it yourself, but I forget the process. Only a few labs are very good at this. I've forgotten which I used. Perhaps someone else has a more current experience? Maybe it was Great Smokies lab, now known as Genova.
  • 0
4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#12 Guest_micah_*

 
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Posted 10 July 2007 - 08:00 PM

Thankyou!! And thanks for your words of encouragement.

Micah
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#13 mftnchn

 
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Posted 10 July 2007 - 09:25 PM

Thankyou!! And thanks for your words of encouragement.

Micah

You are very welcome. Are you diagnosed with celiac or just considering that possibility?
  • 0
4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#14 CarlaB

 
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Posted 11 July 2007 - 07:34 AM

Micah, oddly enough, infectious disease doctors are the least likely to diagnose Lyme Disease! :blink: There is a controversy over treatment due to the fact that they've only known that bacteria is the cause of Lyme since the '80's. You can read an explanation of the controversy at www.ilads.org in the FAQ's section.

If I were you, if your primary doc won't do the bloodwork, then I'd go to an LLMD. It sounds like a distinct possibility for you. An LLMD doesn't just test for Lyme. He will do a differential diagnosis that tests for diseases with similar symptoms (like celiac) and for diseases that co-exist with Lyme. It will be a comprehensive workup that will find what's wrong with you.

Half the people diagnosed with Lyme do not remember a tick bite. I remember tick bites, but never had a rash.

I plan on including my story here, but will have to do it later. :)

Thank you, Sherry, for including yours. :)
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#15 dlp252

 
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Posted 11 July 2007 - 09:14 AM

Never in a million years would I have thought I could have Lyme disease. To this day, I cannot pinpoint when I got it or how. I do not remember a tick bite, a rash or anything out of the ordinary. I do remember once when I was very sick with bad flu like symptoms for over a week, but can’t say that was from the Lyme.

My health really started to decline around 1995. I had a series of stressful events happen that I think pushed me over the edge. I had a lot of dental work done and started noticing I was getting bronchitis fairly often, then in 2001, I had a major surgery.

By 2002, I was sick nearly constantly with flu like symptoms…aching, stiff neck, joint pain, my sinuses were horribly congested all the time. I started seeing an allergist who tested me for environmental allergies and found I was allergic to just about everything. That was odd because I’d never had allergies before.

I started treatment for allergies (Zyrtec and allergy shots). I did that for three years, but never improved and in fact during that three years had an average of 1 sinus infection every 5-6 weeks. I’d be put on 10 days of antibiotics and prednisone, be well for a week or two then it would start all over. My joint and neck pain increased a lot during that time as well. My allergist thought I could have Candida or have a thyroid issue and we tried trial runs of meds for that.

My diet was basically low carb and I had been on a strict anti-Candida rotation diet for 6 months. While on the diet, my sinus infections seemed to clear up, but I still had the other symptoms. In 2005 my allergist retired and around the same time I went on a cruise, where I sort of lost my mind and started small amounts of breads…by the second week, it was like I couldn’t get enough and I was eating full slices of bread, etc. I bloated up—gaining 10 pounds in just a week. This led me to think that I might have a problem with gluten, lol…

I am fortunate to work with several Celiacs, so got the name of this website from them along with a lot of other info. I started on the diet immediately and sent for a test kit from Enterolab. I felt some small improvements right away…the biggest improvement was noticing that my sinuses were getting (I should also note that I started seeing a new allergist and started on a different system of allergy shots) clearer.

After about 6 months on the gluten-casein free diet, my sinus infections were gone, but I still had those other lingering problems. Last year was especially bad, with extreme dizziness, extreme low blood pressure, extreme fatigue, brain fogginess, heart palpitations, diarrhea, a feeling like my head was disconnected and floating around in my head, skin feeling like it had a bad sunburn but no sign of redness or rash, etc. etc. I noticed a thread where a group of people who had not gotten better on the gluten free diet were discussing possible reasons why…I joined.

That led me to a group of doctors who tested me for some things and found that I had adrenal fatigue, bacterial overgrowths, H.Pylori, etc. We started treating those, and while I felt a bit better, still had most of those symptoms. I started physical therapy/chiropractic care at this same place, even most recently getting trigger point therapy for my neck. They put me on an elimination diet, but I didn’t get far with that because I never stopped reacting.

That led me to my next practitioner who did electrodermal testing. Through that testing I learned that I was sensitive to all the “safe” foods that were on the elimination diet. I followed the suggested food list that she gave me and started to feel a bit better. It was found that I am also very chemically sensitive, mold sensitive, and have a problem with metals, etc. She put me on a lot of supplements which did seem to give me a bit more energy.

Someone mentioned the possibility that I might have Lyme. I really didn’t think that could be it, but had the electrodermal testing done to be sure…they couldn’t find any sign of Lyme so I went back to my original theory that Candida and mercury were my main issues. I mean, I live in California and that is not exactly known as a hotbed of tick activity (although since then research has shown me that we have our fair share for sure).

I continued to feel bad and decided to try a form muscle testing. I was not expecting to hear Lyme and in fact told the guy that I thought my problems were Candida and mercury. He found those but he said my main issue was Lyme!

Now, I have an open mind about “alternative” testing to a point, but I wasn’t so sure I could accept this. So mostly to prove it wrong, and to just basically rule Lyme out, I went to see a LLMD. He tested me for a BUNCH of stuff including Lyme. It was found that I have mold toxicity, vitamin/mineral imbalances, metals issues, and LYME! I was shocked to say the least. This was all confirmed by blood testing.

We have not begun to treat the Lyme aggressively YET. My doctor thinks that I would not be able to handle the treatments. I have that horrible 3-year history with antibiotics and with the mold and metals issue, well, he thinks my body will be overloaded. So, we’re trying to supplement my imbalances, and use herbal and other supplements to strengthen my body. I think he’d also like me to find and fix the source of the mold toxicity before we begin. :(
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