Lyme Disease

[whattodo]

I am just wondering if it is possible for lyme disease to spread from person to person. The reason why i ask is that i have just found out that someone i work close with has had lyme disease and got it a month before my symptoms started.

I have not seem any visable signs of tick bites but have symptoms like, headaches, tiredness, numb face and sore joints.

Thanks

[CarlaB]

It can be spread congenitally (mother to baby). There is debate on whether it can be spread sexually ... difficult to prove either way as people who are that close, are usually in the same tick infested areas. I've been married for 22 years, got Lyme before I met hubby, he does not have it.

You cannot get it from someone at work.

Half the people who have Lyme do NOT remember a tick bite. A very large percentage, including me, never got a rash.

I've thought your symptoms sounded "Lymie" ever since you've been posting here, but the symptoms are so similar to celiac that it was good for you to see clearly how gluten-free works for you.

I'd get tested. The US lab that is accurate is Open Original Shared Link. I'd contact them and as who is in the UK who can test you.

If you have it, you got it from a tick.

[whattodo]

It can be spread congenitally (mother to baby). There is debate on whether it can be spread sexually ... difficult to prove either way as people who are that close, are usually in the same tick infested areas. I've been married for 22 years, got Lyme before I met hubby, he does not have it.

You cannot get it from someone at work.

Half the people who have Lyme do NOT remember a tick bite. A very large percentage, including me, never got a rash.

I've thought your symptoms sounded "Lymie" ever since you've been posting here, but the symptoms are so similar to celiac that it was good for you to see clearly how gluten-free works for you.

I'd get tested. The US lab that is accurate is Open Original Shared Link. I'd contact them and as who is in the UK who can test you.

If you have it, you got it from a tick.

Thanks CarlaB

As you can tell i am getting very frustrated and when i heard that someone if the office has had this, it just made me think of posting it. Especially with the face symptoms i have. Like i have said before i have only been off gluten for a month and maybe not given it long enough.

[CarlaB]

With your celiac tests being negative, which we all know does NOT mean you don't have celiac disease, I'd go ahead and get tested for Lyme.

The symptoms are very similar.

You mentioning your thumb pain really makes me think you should get tested! I've seen people mention that on the Lyme boards but never here on the celiac board. Also the face symptoms. I'd get tested sooner rather than later because if you do have it, the treatment is complicated, and only gets more so the longer you go without treatment.

I'm not saying you have it ... just that I'd get tested. The testing for Lyme is about as poor as the testing for celiac as it also tests for antibodies like they do for celiac disease. Having the right doctor is essential.

If you want to find a doctor who specializes in Lyme, go to Lame Advertisement and post in the seeking doctors section.

I know people from UK fly to NY to see my doctor, so I don't know how much luck you will have, but I also know people from Europe post on that website.

We talk about Lyme a lot on the OMG I might be onto something thread. I'm sure some of them will venture over here, too, but you might want to pop in there to learn more about it. There are about 7 of us who have it on that thread (and all of us are gluten-free as well). If you do go there, just jump in ... for heaven's sake, don't try to read the whole thing! LOL.

[loraleena]

what is this thumb pain you are talking about? What is it like?

[CarlaB]

It's like arthritis in the joint of the thumb. I usually only get it in that one joint on one or both thumbs. Some days its' in my knees instead. One day it will be one joint, the next the other. It's called migrating joint pain. Once in a while I get it in my wrist, but not as often.

[whattodo]

what is this thumb pain you are talking about? What is it like?

Have a look at this illustration i found, it hurts just below where it says thumb sprain

Open Original Shared Link

[CarlaB]

I get it in the other thumb joint, too. One day it will hurt, the next it won't. It's a neuro problem, not an actual joint problem.

[dlp252]

Yep, I get the thumb pain once in a while, but mostly mine is the knee or big toe on my right leg. I had major knee joint pain (both knees) before I went gluten free, and after going gluten/casein free, it cleared up a bit, but the right knee, toe and thumb still get that arthritic type pain. I don't have arthritis.

I've been tested for a BUNCH of stuff and everything has always come out normal. I've had MRIs, CT scans, Xrays, you name it. And, after being gluten free for a whole year. I finally felt I had ruled out enough and decided to rule out Lyme as well. To my surprise, I actually DO have it, and like Carla said, I do not remember a tick or a rash.

I will always remain gluten free because I DO carry a celiac gene, but mostly because I feel better without it, but now that I know what ELSE I'm facing I can treat it.

[whattodo]

Would lyme disease show some sort of irregularity in my blood count? Just asking because mine are fine.

Is there a test kit you can get online to send off for?

[rinne]

One thing to consider is that if someone where you work has been diagnosed with Lyme then it may be an indication the Lyme is in your area. I suppose they might have taken a holiday somewhere and returned with it but chances are it is there. It is everywhere now really.

I agree with Carla and Donna about the testing through Igenix for Lyme, the other labs are not as accurate. Igenix is a world class lab and is used by those who are serious about finding out if they have Lyme.

I would caution you though to not rely on conventional doctors to treat you, you need a Lyme Literate doctor.

It is critical when treating Lyme to detox, it is not a problem that can be treated with just medication.

I am one of the seven Lymies on the OMG thread. Come visit if you like.

[dlp252]

Would lyme disease show some sort of irregularity in my blood count? Just asking because mine are fine.

Is there a test kit you can get online to send off for?

My blood counts have been fine for several years...in April, I had a low lymphocyte count, but my regular doctor said nothing about it. I don't believe it had anything to do with the lyme though...I think I had some kind of virus at the time. Other than that, I have never had an abnormal blood workup.

Carla ordered her Igenix kit on her own then took it to her doctor who was willing to sign off on it and draw the blood. I went to a lyme literate doctor who ordered the kits and drew the blood and also was familiar with reading the reports.

Conventional doctors are not taught about lyme, they have a very basic knowledge...kind of like most doctors have a basic knowledge of celiac, but in both cases that is usually what they were taught in medical school, which isn't necessarily how it really is as we have mostly all learned.

[SunnyDyRain]

It's like arthritis in the joint of the thumb. I usually only get it in that one joint on one or both thumbs. Some days its' in my knees instead. One day it will be one joint, the next the other. It's called migrating joint pain. Once in a while I get it in my wrist, but not as often.

My mom gets that, she says it's her "Fibro pain". I used to get smaller aches...nothing too painful, just an ache in a joint and it would move hour by hour around my body.

That has stopped mostly scince going gluten-free. My mom says she was like me for years before the fibro really hit home.

My mom STILL won't get tested for Celiac.

[dlp252]

My mom STILL won't get tested for Celiac.

Mine won't either...she has many of the gastro symptoms I have and I got the gene from SOMEONE, lol, but she won't go get tested.

[CarlaB]

Would lyme disease show some sort of irregularity in my blood count? Just asking because mine are fine.

Is there a test kit you can get online to send off for?

As someone said, IGeneX is the best. I don't know how it would work from Europe ... but I would contact them via email and ask for their recommendation.

My blood work has ALWAYS been normal except for occasional anemia.

My mom gets that, she says it's her "Fibro pain". I used to get smaller aches...nothing too painful, just an ache in a joint and it would move hour by hour around my body.

That has stopped mostly scince going gluten-free. My mom says she was like me for years before the fibro really hit home.

My mom STILL won't get tested for Celiac.

I think anyone with fibro should be checked out for celiac AND Lyme. Fibro has a cause ... doctors just usually don't find it.

[CarlaB]

Lyme symptoms from www.canlyme.com.

I also recommend Open Original Shared Link, Open Original Shared Link, and www.Lame Advertisement.

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

[chrissy]

carla, what test kit did you order from igenex? after my neurologist fiasco, i have kind of forgotten about asking to be tested for lyme. since i went back to our orthoped to treat my pain, i am thinking i might be able to get him to test me for it. when my oldest son was having some problems and i mentioned that some of the other kids had been diagnosed with celiac. he offered to run a celiac test on my son, even though he didn't even know what test to run---he was willing to run whatever test we told him.

i just noticed on the symptom list you posted that they mention carpal tunnel. i am having a nerve conduction test next week.

my 2 oldest boys both have such emotional problems and i am struggling to figure out how to help them. it just dawned on me that they both have been bitten by ticks. my 18 year old has been bitten twice----and both times we had to take him to the ER to get the tick removed because kevin could not remove them doing the "normal" things that you usually do. one of the ticks was so swollen with blood that it was almost unrecognizable----like a flat blimp with little hair-like legs on the sides.

maybe i am just grasping at straws here, but i am feeling so desparate and helpless as i watch my boys (and myself) struggle with physical and mental problems for no apparent reason.

sorry for highjacking the thread a bit.........

[dlp252]

Oh Chrissy, yes, definitely I think you should have your boys tested and yourself too! Especially remembering the tick bites...

I can't even pinpoint when I might have gotten bit.

[chrissy]

oops

[happygirl]

chrissy: at the least, you need the IgG and IgM western blot for lyme.

[CarlaB]

Yes, at least the Igg and Igm. I got the complete panel.

You don't have to tell IGeneX which tests you are ordering when you have the test kit sent to your house, it's the same kit no matter what. You choose the test on the paperwork that goes along with the kit.

[chrissy]

is this something that insurance will cover?

[dlp252]

is this something that insurance will cover?

My insurance paid for the test. Igenix is out of network I believe but my insurance company paid the entire thing. Normally I pay 30% for out of network, but they paid the whole thing much to my surprise. I had to pay up front though, but got reimbursed.

[happygirl]

chrissy: i'm waiting to be reimbursed, i'll let you know.

[Mtndog]

Interesting that you mention the thumb thing. I'm one of the Lymies too- just diagnosed and the last two days those areas on my thumb have been swollen.

It really is crazy what Lyme can do. They call it the "great imitator".

You wouldn't have contracted it from someone at work, but if you are in the same area.

Igenix is the ONLY way to go.

Chrissy:my 2 oldest boys both have such emotional problems and i am struggling to figure out how to help them. it just dawned on me that they both have been bitten by ticks. my 18 year old has been bitten twice----and both times we had to take him to the ER to get the tick removed because kevin could not remove them doing the "normal" things that you usually do. one of the ticks was so swollen with blood that it was almost unrecognizable----like a flat blimp with little hair-like legs on the sides.

You should all definitely be tested. Especially if you KNOW there was a tick bite! I was reading an article that a significant number of children with autism/autistic behaviors are positive for Lyme. Also a friend of mine is a teacher who worked with students with serious emotional/behavioral disorders.

One of her students had unbelievable behavior problems for 9 years (often needed to be restrained at school ). They finally diagnosed her with Lyme, treated her and four years later she graduated from the public school with honors and is now headed to college.