Very Sick Four One Year

[marielynn22]

Hi my name is marie, i am 22! one year ago i got really really sick..started with diahrea and gas/ bloating...but within a month or two i got really sick, splitting neck/head pain.., numb hands, wierd moodiness, and confusion, also dizzyness, lighheadness, my vision dims like a car light and then back up again, i have been constipated for months, i have twitches all over my body sometimes the last for days and then come back a week later...I guess what im asking is does this sound like a case of lymes to you, i saw the lymes specialist in bc..and he said yes..but my doctor says no, and i cant afford to go on antibiotics unless its going to help because i am already very weak and sick..i basically ache all over, and my heart throbs threw my body, and i am very bad in hot weather. I saw that you have lymes, and was wondering if you have any advice, i have been tested and it was negative but where i am from the specialist said that is it less than 25% accurate here.

well thanks for hearing me out!

marie

[dlp252]

Your symptoms do fit with lyme, but also many other conditions could cause it. Did the lyme specialist do the testing? If not, it probably wasn't very accurate because they probably didn't use the best lab for the tests...the tests are not that accurate anyway, but even less so by labs that do not specialize in lyme.

Your regular doctor most likely will NEVER say you have lyme...they are very reluctant to diagnose it.

Do you still see the lyme specialist? There are some supplements and herbs that he can try first...but it's really a good idea to do that with some supervision.

I'm being tested now for lyme, metals toxicity, mold exposure and a bunch of other stuff...should get my results next week.

[Rachel--24]

It does sound like Lyme....and you could also have Celiac as well (if you are genetically susceptible).

Alot of Dr.'s know even less about Lyme than they know about Celiac...I would definately see a Dr. who specializes in Lyme and not a regular Dr.....and not an infectious disease specialist (surprisingly they know nothing about Lyme).

Its true that the tests are not sensitive at all so you could very well have Lyme as the tests are often false negative. See a knowledgeable Dr. who uses Igenix for Lyme testing. Its the best lab....with the most sensitive tests. Igenix picks up Lyme when most other labs miss it.

Igenix can also be false negative....there is still no test which is 100% accurate but this lab has the MOST reliable testing available at this time.

[AndreaB]

Igenex's website is Open Original Shared Link

Also, I'm assuming you're in Canada. You can check out canlyme at Open Original Shared Link I'm not sure if they have a message board or not but they could point you to a LLMD.

From what others have said a good LLMD will test for many things. So many symptoms overlap with other illnesses so it's a good idea to have checked out with someone who will test for different things it could be.

[CarlaB]

I sent you a PM, please let me know if you don't get it.

[marielynn22]

Hi, thanks so much for the replys. I have seen the ONLY Lymes specialist in BC..but i have to say i wasnt convinced with our meeting. He basically asked me a few questions, and yes i had multiple symptoms matching up, but i also never had a rash..and my sickness started in my stomach. I have been tested for lymes twice. I showed up positive for ricksettia but a very low posistive and even lower the second time. Today i ordered the test kit from IgeneX for lymes so thankyou for that information, i was very surporised they could send it to bc. Does anyone know if it can really affect you mentally, i have been very irritable, but the past two days, i feel very spaced out, and very overwhelmed like im numb in my brain, mentally i feel very confused.

Also i've been off gluten for a week now, does anyone know if you begin to feel better very soon after or does it take months? also can you feel worse at first? im just really confused with the way i feel in my head, such a scary feeling.

thanks

[CarlaB]

YES! Lyme can affect you mentally! I get such brain fog that it's better described as disorientation and mental confusion. I also get "Lyme rage" where I'll get upset over stupid things that normally don't bother me.

I also get digestive symptoms. gluten-free helps tremendously, but not completely.

I also never had the rash ... 50% of Lyme patients never see a rash.

You can feel worse when you first go gluten-free. I did. It varies on when a person sees improvement after going gluten-free ... some feel better right away, others take some time to see a difference.

[marielynn22]

Hey, do any of you with lyme's have troubles in hot weather, i mean i just feel weak beyond belief and exhausted..very grumpy too..i was wondering if this is a symptom of lymes. Im stuck in abit of a rut, because the only lyme specialist in my province is actually in abit of trouble for misdiagnosis i have heard. so other than order the IgeneX tests and wait, i dont know how to follow through with a doctor..Yikes. I am really starting to think its lymes though specially the way i have so many twitches and they keep getting worse and worse and the pain in my neck and head is just insaine...i am worried i will not be able to get better because it has gotten so bad...well thanks for the helP!

[dlp252]

I'm still waiting for my results, but I also never had the rash...still I have about 47 of the 75 symptoms I've seen associated with lyme.

I often get foggy headed and spacey, and I also have the rage that Carla spoke of...lots of digestive issues too which didn't clear up with a gluten/casein free diet. The gluten/casein DID clear up most of my sinus troubles though, so that was very good. And, if this DOES turn out to be lyme, staying away from those two biggies and suger will help a great deal.

I also have the pain in my neck which never goes away and hasn't been helped by chiropractic, physical therapy or other traditional pain management therapies.

The heat issue...yep, I have trouble in the hot weather. Not so much sun related, but definitely heat related. It definitely makes me feel lethargic and weak.

[CarlaB]

I get heat exhaustion very easily.

Don't be discouraged, just try to find out where you can get proper treatment. I'm making progress and I went undiagnosed for 35 years. You do need to proceed with finding treatment because some of the neuro symptoms can become a permanent problem. Don't let that scare you, just let it motivate you.

A lot of Lyme docs have to fight to keep their medical license. It's more convenient for the medical profession and insurance companies if chronic Lyme doesn't exist. That's why I have to fly on and airplane to get to my doctor.

[Clark Bent as Stupor-Man]

Hi, thanks so much for the replys. I have seen the ONLY Lymes specialist in BC..but i have to say i wasnt convinced with our meeting. He basically asked me a few questions, and yes i had multiple symptoms matching up, but i also never had a rash..and my sickness started in my stomach. I have been tested for lymes twice. I showed up positive for ricksettia but a very low posistive and even lower the second time. Today i ordered the test kit from IgeneX for lymes so thankyou for that information, i was very surporised they could send it to bc. Does anyone know if it can really affect you mentally, i have been very irritable, but the past two days, i feel very spaced out, and very overwhelmed like im numb in my brain, mentally i feel very confused.

Also i've been off gluten for a week now, does anyone know if you begin to feel better very soon after or does it take months? also can you feel worse at first? im just really confused with the way i feel in my head, such a scary feeling.

thanks

I never had a rash either, don't even remember getting bit by a tick (aside from 15 years ago when I was a kid)... I was tested for lyme with the standard ELISA screening test in both 2002 and 2006 and both tests came back negative... I tested positive on the IGM WB from Igenex last month and have likely had lyme for years...

lyme can cause a lot of neurological symptoms, which are primarily my symptoms as I don't really have the joint pain/arthritic type symptoms... I've had daily headaches and neck pain/tightness, visual problems (floaters, sensitivity to lights), and the brain fog, confusion symptoms for years, which I feel are all largely tied to lyme...

I also have a lot of trouble with heat in general nowadays... I have a fan at my desk at work on 24-7 and get hot much more easily than nearly everybody else in typical settings... this has become more magnified over the past year or so...

if you can't get an appt with the one specialist to get your blood drawn for the Igenex test, it's possible though unlikely you could do it with a non-lyme specialist doctor if you have one you have a good rapport with... otherwise, I'd try and find the closest LLMD to you and set up an appt with them for the Igenex test...

and don't worry about how you'll recover and whatnot... just focus on what you can control... first off, you might be pinpointing what's going on relatively soon as many people go undiagnosed for much of their lives... I've had headaches every day for 5+ years and have been able to improve a lot of my symptoms even prior to my lyme diagnosis through dieting, supplements, and physical activity... I'm now optimistic that some symptoms that have persisted to a greater extent than others will decrease as I go through my treatment for lyme... you seem to be taking a pro-active approach in figuring out what's going on and that gives you an edge right there...