The Lyme Disease Thread

[CarlaB]

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.

[CarlaB]

This symptom list is copied from Open Original Shared Link. 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)
  

1. Open Original Shared Link at site of bite
   
2. Open Original Shared Linkon other parts of your body
   
3. Open Original Shared Linkbasically circular and spreading out (or generalized)
   
4. Open Original Shared Link, 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 (Open Original Shared Link)

[*]Tingling of nose, (tip of) tongue, cheek or Open Original Shared Link

[*]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, (Open Original Shared Link

• 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

[*]Open Original Shared LinkHeart blockage

• Neurologic System
  

[*]Tremors or unexplained shaking

[*]Burning or stabbing sensations in the body

[*]Fatigue, Open Original Shared Link, 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

[CarlaB]

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 Open Original Shared Link.

[mftnchn]

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?

[dlp252]

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.

[CarlaB]

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.

[mftnchn]

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.

[mftnchn]

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.

[mftnchn]

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.

[Guest micah]

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.)

[mftnchn]

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.

[Guest micah]

Thankyou!! And thanks for your words of encouragement.

Micah

[mftnchn]

Thankyou!! And thanks for your words of encouragement.

Micah

You are very welcome. Are you diagnosed with celiac or just considering that possibility?

[CarlaB]

Micah, oddly enough, infectious disease doctors are the least likely to diagnose Lyme Disease! 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 Open Original Shared Link 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.

[dlp252]

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

[dlp252]

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.

[CarlaB]

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.

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 (Open Original Shared Link) 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.

[mftnchn]

Thanks for sharing your stories, Donna and Carla.

[Guest micah]

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

Micah

[CarlaB]

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 Open Original Shared Link 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.

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. Open Original Shared Link

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.

[AndreaB]

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

[CarlaB]

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.

[Mtndog]

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.

Made an appt with a LLMD and saw him in May. Blood work was positive even by CDC standards . 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

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

[Cruiser Bob]

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

[dlp252]

Hi Bob! Good luck with the testing.

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