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.

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)

1. Rash at site of bite
2. Rashes on other parts of your body
3. Rash basically circular and spreading out (or generalized)
4. Raised rash, disappearing and recurring
   • Head, Face, Neck
5. Unexplained hair loss
6. Headache, mild or severe, Seizures
7. Pressure in Head, White Matter Lesions in Head (MRI)
8. Twitching of facial or other muscles
9. Facial paralysis (Bell's Palsy)
10. Tingling of nose, (tip of) tongue, cheek or facial flushing
11. Stiff or painful neck
12. Jaw pain or stiffness
13. Dental problems (unexplained)
14. Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
    • Eyes/Vision
15. Double or blurry vision
16. Increased floating spots
17. Pain in eyes, or swelling around eyes
18. Oversensitivity to light
19. Flashing lights/Peripheral waves/phantom images in corner of eyes
    • Ears/Hearing
20. Decreased hearing in one or both ears, plugged ears
21. Buzzing in ears
22. Pain in ears, oversensitivity to sounds
23. Ringing in one or both ears
    • Digestive and Excretory Systems
24. Diarrhea
25. Constipation
26. Irritable bladder (trouble starting, stopping) or Interstitial cystitis
27. Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
    • Musculoskeletal System
28. Bone pain, joint pain or swelling, carpal tunnel syndrome
29. Stiffness of joints, back, neck, tennis elbow
30. Muscle pain or cramps, (Fibromyalgia)
    • Respiratory and Circulatory Systems
31. Shortness of breath, can't get full/satisfying breath, cough
32. Chest pain or rib soreness
33. Night sweats or unexplained chills
34. Heart palpitations or extra beats
35. Endocarditis, Heart blockage
    • Neurologic System
36. Tremors or unexplained shaking
37. Burning or stabbing sensations in the body
38. Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
39. Pressure in the head
40. Numbness in body, tingling, pinpricks
41. Poor balance, dizziness, difficulty walking
42. Increased motion sickness
43. Lightheadedness, wooziness
    • Psychological well-being
44. Mood swings, irritability, bi-polar disorder
45. Unusual depression
46. Disorientation (getting or feeling lost)
47. Feeling as if you are losing your mind
48. Over-emotional reactions, crying easily
49. Too much sleep, or insomnia
50. Difficulty falling or staying asleep
51. Narcolepsy, sleep apnea
52. Panic attacks, anxiety
    • Mental Capability
53. Memory loss (short or long term)
54. Confusion, difficulty in thinking
55. Difficulty with concentration or reading
56. Going to the wrong place
57. Speech difficulty (slurred or slow)
58. Stammering speech
59. Forgetting how to perform simple tasks
    • Reproduction and Sexuality
60. Loss of sex drive
61. Sexual dysfunction
62. Unexplained menstral pain, irregularity
63. Unexplained breast pain, discharge
64. Testicular or pelvic pain
    • General Well-being
65. Unexplained weight gain, loss
66. Extreme fatigue
67. Swollen glands/lymph nodes
68. Unexplained fevers (high or low grade)
69. Continual infections (sinus, kidney, eye, etc.)
70. Symptoms seem to change, come and go
71. Pain migrates (moves) to different body parts
72. Early on, experienced a "flu-like" illness, after which you have not since felt well.
73. Low body temperature
    
74. Allergies/Chemical sensitivities
    
75. Increased effect from alcohol and possible worse hangover
    

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.

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?

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.

Thanks, Sherry.

I think that's a great idea! I also think some testimonials would be good for the thread.

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.

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.

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.

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.)

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.

Thankyou!! And thanks for your words of encouragement.

Micah

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

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 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.

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.

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.

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 (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.

Thanks for sharing your stories, Donna and Carla.

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.lymenet.org 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. 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.

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

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.

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!

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

Hi Bob! Good luck with the testing.

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

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.

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!

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

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.

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!

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.

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.

I'm surviving right now with the TENS machine, Requip, Halcion & Ambien. Just waiting about a week for GI & MRI results, then I'll move on to the next step, whatever that might be. At least the scopes showed that my insides "look" good for 45. My buddy of 20+ years and I were talking the other day - we figured I'm at about 70% (maybe) of what the "normal" me functions like. It just plain old sucks no matter how you slice it, except I eat like a pig and stay skinny . Bob

I know what you're saying ... my teenage daughter and hubby have to be crazy with me eating all the time (with no appetite, it's just because I need to take meds and they force feed me), while they both have to watch their weight.

I think it's good that you are on the ball enough that you've "only" gotten down to 70% ... I know it seems low ... that's about where I am, and it's frustrating. Once you figure out what it is, I bet you'll rebound fast.

I'm 44 ... it would be easy to blame 70% on age ... but I KNOW better.

What's a TENS machine?

I just figured out the Avatar stuff too - that's me.

TENS = Transcutaneous Electrical Nerve Stimulator, or electric current to mask the pain sensors. It's a $39 machine, but the pads are expensive. For now, I can actually sit at the computer and/or drive without too much pain sensation it's only a short term mask and way better than taking more drugs.

Bob

I am just considering the possibility...after 9 years of being very sick and getting absolutely no help from doctors, I'm striking out on my own to find out how to get better. So far I've found quite a bit of improvement from going gluten and egg free for about 3 weeks. Still hoping for more improvement though.

Thanks for the info on this thread Carla.

Micah

Bob, that's a great pix. Bob and Carla--70% is pretty good, and that's a great shift from 15% Carla. It took me a lot longer those first months of treatment. I think I am 50-70% this past two weeks. Was 30-50% for most of June. ABX are really helping.

Micah, I am glad the diet helps. Have you been strict gluten free?

I am trying to tease out for myself what is celiac and what is lyme related, or something else. Seems like it is a lot of guess and trial and error.

Here's just a couple more thoughts:

I'd be sure you are totally gluten free because some celiacs so super sensitive to the most minute amount even cross contamination and in personal care products. Sometimes more symptoms clear when you are strict enough.

Then there can be other food sensitivities. My allergist said the grains are the most notorious for cross-reacting. So you could try a week or two grain free and see what happens. Dietary trial is far more accurate than blood, stool, skin testing.

The other thing is that a lot of us have candida problems, so cutting sugar and taking probiotics could help.

Keep us posted!

I have sixteen symptoms listed

donna

As far as I know I'm being strict, except for I didn't replace all of my pans, just cleaned them real well. I'm not Dr. Pepper-free , which is my weakness - I'm sure all the stuff in that can't be very good, but it's my favorite thing - lots of sugar though. My only grains are rice and corn. Perhaps I need to cut out those? Probiotics are in yogurt right? Is that enough? At least now I know for sure that gluten is part of the answer for me because I can't believe how the brain fog has lifted and these other weird symptoms of tingling and tremors seem somewhat better - for the first time in 9 years I have a little control yay! I still can't stand or walk very well, but hopeful. I've always been the smallest one in my family and never gain weight. Thanks for the suggestions - do you think I need to replace my pans? - they are steel except for my one teflon-type coated one.

Lyme has been one other thing I have suspected - my doc put me on 6 weeks of doxycycline once for pansinusitis and towards the end I started to feel some improvement in some of my ongoing symptoms and the weakness, but he wouldn't continue past 6 weeks and I quickly got worse again when I stopped the antibiotics.

Micah

Yeah, I can't do any grains, not even rice or corn. Sugar is bad too...feeds all sorts of stuff.

This is not directed to Donna in particular, but I wanted to mention, there is a LOT of overlap of Lyme and celiac symptoms. In fact, candida and heavy metal toxicity, too. So, if you have some of the symptoms, it's a possibility to explore, but it's not a diagnosis. I don't think anyone is taking it as one, but I wanted to point out there are other health problems with similar symptoms.



Candida has a lot of similar symptoms ... plus, sugar feeds Lyme. Artificial sweetners are very bad ... I'd try to find something else to drink. What about Propel to help you transition. It only has 2 grams of sugar per serving but still is quite sweet. It's not ideal, but it's a heck of a lot better than Dr. Pepper.


I would definately suspect Lyme because of this.

Yes, I'm really happy about the 70%. I'm herxing right now and am about 50%, so that's a HUGE improvement! I'm glad you are improving, too.

I am thinking that because I had my amalgams out 16 years ago and chelated, that I don't have as many complicating factors to getting better. I have a little heavy metal toxicity and we are chelating right now.

I also was aware of proper detoxification for the past 16 years, which I think helps because my body is capable of getting rid of the bad stuff. I've been using my far-infrared sauna since before I was diagnoses, as well.

It's funny, much of my day is focused on healing -- exercise, sauna, coffee enemas, etc. Plus, the regimen of supplements, meds, probiotics, chelators, etc. I also try to go on long walks after dinner.

It's not just getting rid of bugs, it's getting healthy.

You said somewhere that lyme is a "clinical diagnosis." I'm wondering, what is it in the blood test that suggests lyme? Is it not just a positive or negative test? Is it possible to have a negative test and the doctor still diagnose lyme?

Micah

Micah,

I don't have lyme but from what I understand is you can have negative WB's and still have lyme and have it diagnosed as a clinical diagnosis.

The blood test is a Western Blot. If you have one done, it needs to be done by IGeneX.

There are several bands they check ... both IgG and IgM. The tests require interpretation because some bands are Lyme specific and some are not.

Some people who are very sick with Lyme will have negative tests because their immune system is too tied up to have antibodies show up on the test.

Many (probably most) doctors don't really know how to read the Western Blot, so it's important to take it to an LLMD.

Okay, thanks....now this may sound dumb, but who interprets the WB - my doctor or IGENX?

Micah

As I understand it, the reason lyme is a clinical diagnosis is that the blood tests are still not totally reliable. So you need an LLMD and he looks at your history, symptoms, testing, and response to treatment to confirm the diagnosis.

Yes, as Sherry said, you need an LLMD to interpret. You can post your results here and we can tell you what they mean, but you need an LLMD for diagnosis.

Would you mind if I ask how much money it costs? I am disabled and on medicaid which doesn't give me lots of options - and if my doc doesn't use that lab and I take the kit in to him, I would think I would have to pay for it myself - which I'm willing to do, but do you have a ballpark of the cost? I have been sick so long and without any support from doctors (they ruled out the obvious things but then dx me with CFS which is meaningless), I'm just taking my health into my own hands as much as I can and I think I at least need to know what I DON'T have, if that is possible. It has taken me 9 years to even come up with ideas of what could be wrong. It has been so hard having this invisible thing disabling me and I don't even know how to fight it.

Thanks,
Micah

Micah, I do not know if Medicaide will reimburse you for the lab expense. You do have to pay up front.

The cost is $190 for the two Western Blots. There are other tests that you can get, but the essential ones are the two Western Blots (yes, it has to be both, they test for different things).

If you yourself cannot afford it, maybe there is someone else who is willing to pay for it for you. If you've been disabled this long, I think there's a good chance Lyme could be what's wrong.

There is a message board on www.lymenet.org ... there might be someone there who knows about IGeneX and medicaide.

Keep us posted!!

Thanks,

I actually have a little bit to spend on this...I'm carefully trying to weigh where I'll get the best information for my money. I'm trying to decide if I need to get any or all of the tests at Enterolab or if I should just trust the dietary response. I know I am at least intolerant to gluten now (whether it is celiac or not I don't know), and I think egg, but unsure of anything else so far. I may be barking up the wrong tree, but at least I have a tree to bark up now! I'm starting to have hope - and I haven't had that for a long time. I'm like a pioneer! This may take me a little time because I'm thinking I've got to get an appt with my doctor to ask him if I can bring the kit to him - at least I won't have to pay for the doctor's visit then. I probably won't be able to go to a LLMD though so I would have to figure out the interpretation process. My doctor is a nice person and I think I might could convince him to treat me with longer term antibiotics if I had a test that would back me up somehow. I don't know if I'm chasing an impossible dream here though. I'll check out that website. It's hard having to become my own doctor and I don't even get a degree out of all of my research! LOL

I would sure appreciate any advice.

Thanks so much,

Micah

That's really hard, Micah. I think it would be worth seeing if there is an LLMD in your area, and then discuss the financial issues with him. Hopefully he could have some options that would not be so costly.

There are a number of auxiliary issues to treating the lyme, not just antibiotics. So from my experience, I'd say that finding a good doctor is a key.

I am glad to hear that the gluten free is helping you, and hope that you will soon find more answers.

Just one more thought, there is a thread here on the forum of celiacs with mostly neurological symptoms. Have you seen that thread?