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The Lyme Disease Thread


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#16 dlp252

 
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Posted 11 July 2007 - 09:18 AM

Oh, and I just wanted to add that through all those years, I did seek out medical help and was tested for all sorts of things...according to all the blood tests, I was perfectly healthy. I had MRIs, of my knees...they were fine. Had CT scan after CT scan of my head...fine. And yet, I wasn't fine. So, don't give up if you don't get answers right away.
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#17 CarlaB

 
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Posted 11 July 2007 - 10:35 AM

I'm going to do this in stages .... so this will be about how I contracted Lyme and my symptoms through the years. I was infected about 35 years ago, so it's just too much for one post. :)

My mom and step-father moved us out to the country from 1972-1975. I got countless tick bites and all the ticks were removed improperly. Some thought that the best way to remove them was to apply heat to force the tick to let go, so this is what my step-father did.

The proper way to remove a tick is with tweezers. If you use heat, you force the tick to regurgitate any toxins it's carrying into your body. :o

I was always the child who had the most illnesses. Many times I would get sick and no one else in the family would. I was considered to be a hypochondriac with a low threshold of pain, because surely I wasn't any sicker than anyone else.

I had very few Lyme symptoms ... mainly fatigue and sensitivity to heat and sunshine.

When I was in college in 1982, I had several stressful events happen all around the same time. Within a few months I would only get out of bed to go to class. Finally, my roommate was so concerned that she dragged me to the hospital. I did not think anything was abnormal myself, but she could see something was wrong.

The doctor, knowing I was a college student, took some blood tests then told me not to drink so much. <_<

That next summer, I went home, but could not find a job (we lived in another college town and there was just not enough work). So, I had a relaxing summer eating right, hanging out by the pool, exercising daily, and spending a lot of time with a very good friend who really cared.

By the time I got back to school I was back to having minimal symptoms.

The same thing happened again in 1986.

In 1991, it happened again. This time it lasted a little longer, so my doctor did some bloodwork. I was healthy. A few months before I had a mystery ailment that sent me to the ER. I was at a Museum with my sister and her husband. I came down with intense stomach cramping, so I sat down for a while. Finally, I told them we needed to leave .... by midnight, hubby took me to the ER.

They took my blood pressure laying down, then standing up. I had the reaction that indicates dehydration (it also happens with Lyme), so they gave me an IV and sent me home. It took a week to recover.

So, after my doctor had all my bloodwork come back normal, he said it was just some leftover fatigue from the "flu" I had sick months earlier that sent me to the ER. The fatigue was debilitating. It didn't make sense, so I kept looking.

That was not my only mystery ER visit ... I just stopped going after a while because I knew they would find nothing wrong with me.

This was pre-internet, so my research was more difficult, but I finally learned that mercury toxicity can have this affect and so can candida. I would have worse symptoms when I would grind my teeth, so mercury sounded like it could be a big part of the problem.

I found a mercury-free dentist (www.mercuryfreedentists.com) and had my amalgams removed in stages. I took his detox protocol as well to help my body get rid of the metals. After each removal I felt like I had the flu.

I also went on the anti-candida diet and an elimination diet.

After a few months I felt good. I kept eating healthy and took supplements. I was health food nut because I felt better that way. I was always aware of detoxing.

I was fine from 1991-2003 ... I had a few symptoms, but nothing that I thought was out of the ordinary -- neck pain, allergies, lower back pain, intermittent fatigue. Things would get bad when I was pregnant, but I attributed that to pregnancy. Looking back, they were Lyme symptoms.

In 2003 I got an unrelated illness and was under a lot of stress over owning two homes ... one being up for sale for WAY too long. I took 21 days of doxycycline for that illness.

Doxy is one of the drugs used for Lyme, so I think the abx along with the stress stirred it up again.

After the 21 days, I still had incredible fatigue. Within a few weeks, I got knee pain so bad that I couldn't bend my left knee ... if I sat down, I had to prop it up. I also would get pain in my thumbs.

I thought it might be a candida overgrowth from the abx, so I went on a strict anti-candida diet and it did help. Simple carbs also feed Lyme bacteria, so that is probably why.

I just didn't get better. I read in a book that if you eat a food every day, you most likely are allergic to it. So I cut out wheat for a couple weeks. It made me sick when I cut it out, then again when I challenged it.

This book said that after a few months, you might be able to eat the food you are allergic to .... so I reintroduced wheat and had no trouble if I ate it a couple times per week.

My health was still declining ... I started losing weight, about 15 pounds in 4 months. I was thin already. I went to the GI, and he, of course, thought I had celiac ... it seemed obvious ... I couldn't tolerate wheat and I was losing weight.

All my tests came back negative. I went gluten-free anyway, then casein-free, corn-free, and soy-free. I still didn't get better. I did stop losing weight, but the joint pain, fatigue, muscle aches, etc. did not end and progressively got worse.

I also had air hunger, drenching night sweat, and heart palpitations.

I ended up on the same thread as Donna. That is where I discovered my Lyme Disease.

In the meantime, my doctor told me I had adrenal fatigue and somatization disorder (it was all in my head). I had IGeneX send the test kit to my house and took it to my doctor. She gave me the test, but even with me having over 40 of the symptoms and a positive test, she still told me it was somatization disorder, not Lyme. Doctors are very uneducated when it comes to Lyme Disease.

I found an LLMD in NY to treat me. He said I definately have it and my test shows I have had it for a very long time. I also got a clinical diagnosis of babesia. The blood tests only test for three strains of babs, but there are about 30, so it's a clinical diagnosis, as is Lyme.

I am also having my TMJ Disorder treated right now. TMJ problems are a symptom of Lyme, but for people like me who also have a structural problem, it's still something that needs to be fixed. Some people don't have the structural problem, but just the pain from the Lyme. My TMJ pain was always the worst when my Lyme was active.

More later.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#18 mftnchn

 
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Posted 11 July 2007 - 03:04 PM

Thanks for sharing your stories, Donna and Carla.
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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

#19 Guest_micah_*

 
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Posted 11 July 2007 - 07:22 PM

Thanks. Do you know where I might could find a lyme literate doctor? I live in Tulsa, OK.

Micah
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#20 CarlaB

 
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Posted 12 July 2007 - 05:57 AM

Thanks. Do you know where I might could find a lyme literate doctor? I live in Tulsa, OK.

Micah


Micah, you will probably have to travel as I do. I fly from Ohio to NY to see mine. If you have the attitude that you're travelling anyway, I can give you the contact information for my LLMD.

You can post on www.Lame Advertisement in the seeking doctor section that you're looking for an LLMD close to you. There are people there who have lists of them (I don't) and they will PM you with the name of a doctor.

I wanted to do a post about this, so I think this is a good time.

Lyme Disease was discovered in Lyme, CT in the 70's. It wasn't until the 80's that they even knew it was caused by a bacteria, though they knew it came from ticks in the 70's.

There is still controversy on how to treat and diagnose Lyme. Even though the guy who had tuberculosis on the airplane will be treated with 2 years of antibiotics, they think that someone who has had Lyme for years will be cured by 30 days of treatment. <_< They think that you can treat the disease the same whether you have had it for 1 day or 30 years. <_< <_<

There are doctors, LLMD's, who treat Lyme until the patient is healed. Because they are not treating it the same as the other docs, they are constantly being brought before medical boards to defend their licenses ... even though THEY ARE GETTING PEOPLE BETTER!!! ... and the other doctors are not.

These doctors are risking their livelihood and their reputation for those of us who are really ill. We do all we can do to protect them. That is why there is no public list of doctors treating Lyme.

You will also find us talking in vague terms about our treatment. We don't want to give enough information on a public forum for the witch-hunters to bring charges against our doctors.

So, the choice that was easy for me, will be hard for some. I chose to go with the camp that says they can heal me. I know there is a risk with long-term abx, but the risk is small compared to the risk of not getting better. I believe that the fact that these doctors risk it ALL to treat us makes them like doctors of the past who were there to help their patients. They are courageous people, and I respect them greatly for that.

I AM getting better. One month of abx barely made a dent in my disease. After 6 months, I'm feeling closer to normal than I have felt in over 4 years. B)

Here's a great movie trailer for a documentary on Lyme Disease. My LLMD is the one who says while we're all fighting over this, the patients suffer. http://www.openeyepictures.com/uos/

I can't tell you how validating it was to finally see a doctor who understood I was sick and who told me he'd help me get better. :)
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#21 AndreaB

 
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Posted 12 July 2007 - 08:11 AM

Thanks for posting the trailer Carla. That part wasn't working last time I visited the site.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#22 CarlaB

 
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Posted 12 July 2007 - 08:27 AM

I have recently made a lot of progress in treatment ... this is for the encouragement of those just seeking treatment ...

When all this started, I couldn't read a newspaper article, yet I used to love to read Victorian novels with all their large words and flowery language. I also didn't understand humor ... at all.

Just within the past couple days, I've been able to pick up books again and read a chapter at a time. This is a HUGE change. The brain is definately working better.

So is the body ... I don't spend nearly as much time lying down as I used to. Even the monthly Herxhemer reaction (the killing off of the bugs cycles and monthly you get significantly sicker as the bugs are killed in greater quantity) has lessened significantly. I used to need help walking during a herx ... now I can go about my normal days, with an increase in symptoms, but still somewhat functional. I need a lot of rest, but I used to be bedridden by them.

I encourage all of you to look for what's wrong, it's just not normal to be sick, no matter how normal your doctors try to convince you that it is. The fact is, they think you're exaggerating.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#23 Mtndog

 
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Posted 12 July 2007 - 08:33 AM

Great thread- I am another celiac Lymie! My story is basically this.

My mom passed away in April 2003 and almost immediately I became lactose intolerant. Two months later my hubby and i went hiking/camping in ME. We hiked a good, long one on a hot day and when I got down, I didn't feel so good.

That entire week after I was in bed with the "flu". On the 4th of July of that year I went to the ER where I was treated for dehydration and they did a Lyme titer but it came back negative.

As time went on, I began to sleep during the day more and more- that summer I would sleep 12 hours at night and need a 4 hour nap during the day! Very depressed but I attributed a lot of my symptoms to grief.

I also had BED SOAKING night sweats. As the year went on, I began to lose weight and get "the stomach flu" often as well as joint pain (which I was diagnosed with arthritis). Finally, in january of 2005 I was down to 120 pounds (skinny for me) and had some bloodwork. I went gluten-free right then and there.

So, I was gluten free for 2 years and developed other food intolerances (dairy, soy and legumes) and seemed to get glutened VERY often. I kept thinking that it just took time to heal.

Finally this past January I crashed. Over Christmas break I was too tored to get out of bed for Christmas Dinner. I was told between january and March that I had a mono relapse, a stomach virus, a relapse of the another virus but uhmm....that wasn't making sense to me. :huh:

Made an appt with a LLMD and saw him in May. Blood work was positive even by CDC standards :angry: . He also did a celiac disease 57 which measures how badly your immune system is being impacted by the Lyme. A good range is 200-300 but above 60 isn't bad. i was a 32 :o

So I started abx 6 weeks ago and it has been up and down but my good days are definitely better!
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***************************
Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.
Albert Careb


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#24 Cruiser Bob

 
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Posted 12 July 2007 - 10:39 AM

Thank you Carla, I've been having a hard time keeping up with all of you on the OMG thread, but I've learned a ton of things and feel like I know all you.

So, I'm at 30 of the symptoms previously listed. Currently waiting for lab results from Endo/Colon. Preliminary results are minor Reflux 39-40cm down. I'm also going in for an MRI on my shoulder Saturday to start to figure out the reason for the incredible pain I've got. I thought is was carpel tunnel in my wrist, but Xray showed perfect wrist, PT just moved the pain up to my shoulder.

So, if the GI docs say nothing interesting (the expected result) and the MRI shows nothing special, I believe I'll be talking to my Nuerologist about Lyme testing.

Seven years gluten-free, 5 DF/Egg free, 4 nightshade free and still have all the digestive issues, sleep problems, body pain, limited concentration skills - at least limited from what I expect of myself.

Time will tell, over the next couple weeks. Bob
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#25 dlp252

 
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Posted 12 July 2007 - 11:19 AM

Hi Bob! Good luck with the testing.

Oh, did I mention the incredible insomnia I have, lol. Terrible, and nothing seems to help.
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#26 AndreaB

 
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Posted 12 July 2007 - 11:38 AM

Hi Bob! I didn't realize you had so many limitations as you haven't posted that on the OMG thread.

I don't have lyme but I hope you guys don't mind if I hang around. :)
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#27 Mtndog

 
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Posted 12 July 2007 - 12:57 PM

Hi Bob- Welcome! I had "tennis elbow" (uhm? I don't play tennis) so badly i couldn't use JUST my right hand to hold anything even remotely heavy (like a skillet). It started in january and strangely enough....first thing to just COMPLETELY disappear since I started the abx.

Good luck with the testing!

Andrea- You can hang around but NO LYME FOR YOU! :P
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***************************
Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.
Albert Careb


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#28 CarlaB

 
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Posted 12 July 2007 - 02:17 PM

Andrea, you are our cheerleader! How could we get through a herx or even a blood test without you? Or remember our doctor appts???? :lol:

Bob, be sure that if you get tested for Lyme that your doctor uses IGeneX. Don't be surprised if your doctor brushes off the idea ... but insist on it! I also didn't know you were having unresolved issues ... I hope you get to the bottom of them soon.

Most of my joint pains have also disappeared early in treatment. It's only when I'm herxing that I have them now.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#29 CarlaB

 
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Posted 12 July 2007 - 02:40 PM

Thanks for your story, Bev!

Okay, I'll post about treatment ...

I found out that a friend of mine had just been diagnosed, so I called and asked her who she was seeing for treatment. It's a doctor in NY ... I actually made the appt. before I got my test results back.

I got my test results back and my doctor here told me I didn't have it even though the test was positive. <_<

I finally got to see Dr. H on Jan. 20th. He asks how I'm doing on a % scale -- 0 being dead, 100 being perfect. I told him I was 15%.

He also diagnosed me with babesia because of the night sweats, heart palpitations, and air hunger.

I started on anti-protozoals for the babs and abx for the borrelia (Lyme). Immediately I started feeling about 20-25%. About every 24 days I have a herx ... in the beginning the herxing wasn't much different from "normal" bad ... but now I notice a significant difference.

My first herxes left me unable to walk without assistance. Sometimes even the Lyme would cause that, too.

One of the scariest times for me was when I went to the grocery and got so disoriented that I had to call my husband on my cell phone ... he told me to buy what was on my list, check out, and go home ... yes, I needed those simple instructions. That happened right before treatment, and from then on until I was a couple months into treatment I never left the house alone.

Borrelia exists in three forms, spirochete, cell-wall deficient, and cyst. My LLMD treats all three forms at once ... not all LLMD's do it this way.

A big concern is fungus/mold. It's very easy to get an overgrowth of yeast being on so many meds for so long. I take Nystatin to prevent problems and keep to a sugar/yeast/alcohol-free diet.

My LLMD is holistic ... he says if he could treat Lyme naturally, he would. He does have an herbal protocol, but he said I would need to get my bacterial load lowered before it would be effective for me.

He has me on a lot of supplements for various things -- probiotics to keep up the good bacteria in my GI tract, immune-building herbs, vitamins, minerals.

Right now I am also chelating heavy metals. It's very common for a Lyme patient to be heavy metal toxic. I'm on a gentle protocol because my metal load was low since I've been through this before. I am feeling better since starting this treatment.

I also recently found out that my bacterial balance in my intestines is off -- lots of bad bacteria and NONE of some of the good stuff. This is most likely what has been causing my GI problems for the past four years. My doc changed one of my abx temporarily to take care of this problem and has me on VSL#3, a VERY strong probiotic.

I do many things to aid in detoxing. I have a far-infrared sauna that I use about 5 times per week. I also do coffee enemas (yeah, gross, but Google them, they've made a HUGE difference!!!). I drink lemon or lime squeezed into water ... and I drink a lot of water. I've recently started taking undenatured whey several times per day. All these things have helped me.

Other things I'm doing to heal is exercise, plenty of rest, and eating right. Dr. B's guidelines say exercise is essential to healing from Lyme. It's important in the beginning when the stamina is low to do strength training rather than cardio. I lift weights. I recently added 20 minutes of cardio IF I'm up to it that day. I go to the gym whether I "feel" like it or not ... I actually never feel like it! :D

I have blood work done monthly to be sure that all my levels, including liver enzymes, are within range.

Last month I told my doctor I was 70% and this month, I'll say 75%. I'm about 60% today, and I'm just getting to the last part of my herx.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#30 mftnchn

 
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Posted 12 July 2007 - 03:13 PM

Great to see you all here and read your stories. Andrea, we NEED a cheerleader!

One more thing about lyme as I understand it: There are various strains of borrelia and the other co-infections. This could explain the variation in symptoms. At least one of the co-infections is a protozoan I believe. So "lyme disease" may refer to a cluster of illnesses caused by a group of infections.

I don't seem to have much predictability to when I herx, except a few times a major one a month after starting something different. It does follow the meds though. (Like when taking penicillin shots early on, flu like symptoms the second third and fourth day after the shot). Now it follows the pulsing of the Flagyl I take.
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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




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