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Rachel--24

Omg...i Might Be On To Something

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Georgie, have you checked out the list of symptoms for Lyme? If you just google Lyme symptoms lots of information will come up, sorry, kind of tired right now or I would do it for you.

I can't take the heat or the cold.

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Rachel, the ticks I had were attached and needed to be removed with tweezers, but they say that many people with Lyme never see the tick, so it must not be this way all the time.

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Georgie...heres a list of symptoms caused by Lyme.

I've had alot of them....some have improved....some come and go. Some have disappeared altogether.

Symptoms of Lyme Disease

The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)

Rash at site of bite

Rashes on other parts of your body

Rash basically circular and spreading out (or generalized)

Raised rash, 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 (Bell's Palsy)

Tingling of nose, (tip of) tongue, cheek or facial flushing

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, (Fibromyalgia)

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

Endocarditis, Heart blockage

Neurologic System

Tremors or unexplained shaking

Burning or stabbing sensations in the body

Fatigue, Chronic Fatigue Syndrome, 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

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OMG....you remember that HEINOUS eye pain that I have talked about in the past??? The eye pain that made me wish I was dead during the first year...the pain that was like no other pain I have ever experienced in my life??

The WildCondor girl describes it EXACTLY...

My eyes hurt, they ached from the inside out, my vision went blurry, I could no longer sleep with the blinds down, or the window open. The slightest spot of light in my bedroom sent a violent shock wave through my entire body. It was very painful, the only way I can explain it to a healthy person would be to compare it to not having slept in 48 hours, being punched in both eyes, while having the flu, then drinking a 1 pack of beer, getting smashed, finally going to sleep, after puking, sleeping for 4 hours (while having nightmares of dying) and then someone opens the window, the sun hits your face, and you scream, no!

I needed to sleep with a blindfold on, and wear sunglasses at night.

OMG...that was me!!! I wore a blindfold to bed and sunglasses ALL the time!!

In fact ALOT of what she writes I experienced....but much of it is better now. How could this be?? I took antibiotics several times....could it have helped some?? :unsure:

Could it have gotten better because of taking so many stressors off of my immune system....getting my amalgams out, making diet changes, quit smoking, no alcohol, avoidance of chemicals...etc???

How come the eye pain is not so bad anymore?? It was mainly at the BEGINNING of my illness.

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I have tried to read as much as I can. Lots of it is still to sink in :lol: Fatigue of course and and many other symptoms fit but that could be said for a lot of reasons so can't really find proof for his Dr yet. The hypothalamus going crazy seems to be his most outstanding symptom.

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OMG...I cant believe how much I read that I also experienced...

I went through this pleasant experience too...

I have had some horrifying encounters with doctors. The worst of them all are infectious disease specialists, since the testing for Lyme disease is so poor, many of my blood tests were normal. As a result, two-thirds of the doctors I saw told me I thought I was perfectly healthy on paper, and that I should see a shrink.

Ironically enough, when I finally did see a shrink, it was he who thought I was really sick,

Yeah...but my infectious disease guy wouldnt even test me. :angry:

and yeah.....the shrink was the ONLY one to acknowledge that I was really SICK...that there was something the doctors were MISSING!!

Infectious disease doctors I have found to be among the most heartless, cruel, and stupid of all doctors.

YES to this statement....a thousand times over!!!

I will NEVER EVER forget the words that IDIOT doctor used....I will NEVER forget his arrogance. I had alot of bad doctors but the Infectious Disease Specialist takes the cake. I still cant even COMPREHEND that this guy is ALLOWED to call himself a Doctor. I call him all kinds of stuff....but NOT a doctor.

My new Dr. also told me that all of the Infectious Disease specialists are like this!!!

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What everyone needs to realize is that chronic fatigue, fibromyalgia, and arthritis are not diseases by themselves. Of course, they are real, but they are symptoms, not diseases. If you go to the doctor, and complain of being tired all the time, for 6 months or more, you are probably going to be diagnosed with chronic fatigue. You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense! You need to find out the cause! Lyme disease, and the bacteria b.burgdorferi are the cause of the chronic fatigue. People join chronic fatigue support groups, they go on disability, they tell their family "I know what's wrong with me now, and I have chronic fatigue." I still find it amazing just how many people get sucked into this giant conspiracy and line of thought. None of it makes any sense, yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with an undiagnosed and untreated infection.

This girl could be my twin. :blink:

We've shared alot of the same symptoms, same experiences trying to get better and we THINK alike. :D

You guys all have your twins and now I found mine....the wild condor girl. :lol::lol:

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OMG...at some point over the last day or so....this thread reached over 10,000 posts!!! :o

Can you believe that??? :blink:

Seeee...if Andrea were here she would have noticed. She would know exactly WHO the 10,000th poster was....and they would get an award or something. :lol::lol:

We are lost without Andrea. :huh:

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(in game show voice) #10,000 went to the fabulous jerseyangel, also known as Patti! Come on down!!!!! :)

:lol::lol::lol:

Good job Laura!! :D

Patti.....CONGRATS!! :)

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Hi All

See everyone is in bed....getting their zzzzzzzz's

<_<

that was to be sleeping but looks like pee-o'd oh well.

I haven't had time to read sorry, got kinda caught up last nite but it's all so above my head now... :blink:

I got this google alert today re: celiac and don't want to do a thread but know you guys will have the answer anyway and might not see it so here goes.

QUESTION--what is the difference in a nut allergy to a nut on the label and the nut protein? Wouldn't the nut allert be enough..what's the reason for both?????

THIS WAS THE GOOGLE ALERT--

OTTAWA, November 24, 2006-The Canadian Food Inspection Agency (CFIA) is warning people with allergies to almond protein not to consume the Schär brand Snack - gluten free chocolate wafers with hazelnuts described below. The affected product may contain almond protein which is not declared on the label.The Schär brand Snack - gluten free chocolate wafers with hazelnuts, a product of Italy, is sold in a 105 g package bearing UPC 8 008698 005286 on the back panel. On some packages, the UPC on the back panel may be covered up with a sticker. These packages have a white sticker on the front panel which bears a different UPC 8 00869 80528 6. Both the UPC are affected. The package contains three individually wrapped 35 g Snack bars. Only the Best before date 21 06 07, lot code L161721 is affected by this alert.

tHANKS IN ADVANCE AS I KNOW YOU EXPERTS WILL KNOW.

NITE AND GO BACK TO SLEEP/

JUDY

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This girl could be my twin. :blink:

We've shared alot of the same symptoms, same experiences trying to get better and we THINK alike. :D

You guys all have your twins and now I found mine....the wild condor girl. :lol::lol:

Rachel- this girl seems to have said very well everything you and I said last night- the idea of not accepting a diagnosis if you do not get better.

I miss Andrea too!!!I hope she is holding up alright!

Miamia

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Judy--

I wonder if it's because the snacks contained hazelnuts anyway, but usually didn't contain almond--and they were warning people who have a specific allergy to almonds. :unsure:

This is the sleepy guy-- -_- and there is another one that I couldn't find--I wonder if they rotate them :blink:

~~~~~~~~

OMG--I am just so proud to have been the 10,000th post! I want to thank my mom, dad, my family here at home, my OMG thread friends, and the members of the academy! This is truly a great honor! :D

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OMG--I am just so proud to have been the 10,000th post! I want to thank my mom, dad, my family here at home, my OMG thread friends, and the members of the academy! This is truly a great honor! :D

:lol::lol:

The more I read about Lyme, the more it sounds like what I have, but it just seems so unlikely... I've had the eye pain too...told my eye doctor about it, but he didn't have any suggestions about it...we did every kind of eye test to find out if it could be something "physical"...fortunately I don't get them often, but when I do it's excruiating! I'm wondering, and I know I've mentioned this before, whether those three years of antibiotics made a difference in the level of severity of my symptoms if I DO have Lyme...I was on nearly constant antibiotics for 3 years... Wondering how that would affect any testing...I've not taken any now in almost a year, so that part is covered. First things first though...got to get my butt into the BioSET lady to see what comes up.

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Judy--

I wonder if it's because the snacks contained hazelnuts anyway, but usually didn't contain almond--and they were warning people who have a specific allergy to almonds. :unsure:

OMG--I am just so proud to have been the 10,000th post! I want to thank my mom, dad, my family here at home, my OMG thread friends, and the members of the academy! This is truly a great honor! :D

That's what I thought about the almonds too. <_<

As to your 10,000th post BRAVO!!!!

:lol::lol:

The more I read about Lyme, the more it sounds like what I have, but it just seems so unlikely... I've had the eye pain too...told my eye doctor about it, but he didn't have any suggestions about it...we did every kind of eye test to find out if it could be something "physical"...fortunately I don't get them often, but when I do it's excruiating! I'm wondering, and I know I've mentioned this before, whether those three years of antibiotics made a difference in the level of severity of my symptoms if I DO have Lyme...I was on nearly constant antibiotics for 3 years... Wondering how that would affect any testing...I've not taken any now in almost a year, so that part is covered. First things first though...got to get my butt into the BioSET lady to see what comes up.

As I understand it yes, the antibiotics would have knocked it back and they may also have given you a better chance to test positive on the Igenex Western Blot if you have it done.

When I look back now I can see symptoms that began nearly twenty years ago but they were very mild, I had been on ABX for an infection just prior to that and I think that is what knocked it back. Then I was on ABX in my mid-thirties for bronchial problems, OMG I had totally forgotten about the winter my lungs hurt, and I think that kept it back also. Dietary changes made a difference about that time too but I was definitely on a downhill slide now that I really look at it. I gained weight too and no matter what I did I couldn't lose it.

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:lol::lol:

The more I read about Lyme, the more it sounds like what I have, but it just seems so unlikely... I've had the eye pain too...told my eye doctor about it, but he didn't have any suggestions about it...we did every kind of eye test to find out if it could be something "physical"...fortunately I don't get them often, but when I do it's excruiating! I'm wondering, and I know I've mentioned this before, whether those three years of antibiotics made a difference in the level of severity of my symptoms if I DO have Lyme...I was on nearly constant antibiotics for 3 years... Wondering how that would affect any testing...I've not taken any now in almost a year, so that part is covered. First things first though...got to get my butt into the BioSET lady to see what comes up.

Donna, I still cant believe I went through that whole "eye ordeal"....I kept going to the opthamologist and the other "seeing" eye doctors.... (cant remember what they're called). They could never find anything wrong except extremeley dry eyes. I was told I would have to live like that....and use eye drops all day long. I did not believe it...I kept going back to the opthamologist and then she told me that "I just needed to "accept" that I have dry eyes....lots of people have it." :angry:

I'm sorry but I *know* people who have dry eyes and they werent dealing with the same things....having excruciating pain, having to wear sunglasses at night, not being able to drive or watch a movie. It wasnt affecting their WHOLE life.....HELLO....how is this *just* dry eyes?? :angry:

Sometimes my vision was perfect and other times not as good....it could change drastically overnight. Sometimes my eyes would just get extremely blurry. I got glasses...TWICE. I never wore them though and I didnt really need them...I didnt want to mess up my eyes by wearing them....plus they made things blurrier and gave me a headache.

The way they tested me to see exactly how dry my eyes were was to stick these little sheets of paper directly into my eyes...the papers would literally hang out of my eyes. Then I would have to sit like that for awhile. The papers would change colors depending on the moisture. It sucked and it was MOST unpleasant having those papers in my eyes. :(

My ex (before we were exes) could not handle watching me having to sit there with these papers in my eyes....was almost in tears about it. No wonder we are exes....that was just the BEGINNING...that was NOTHING. I think some people just cant handle illness very well....they dont know how to deal with it. :(

Donna,

I'm pretty sure three years of antibiotics could have held the Lyme back.....at the same time though.....3 years of antiobics is a LONG time. Being on antibiotics for that long can be really damaging to your gut. If you werent taking probiotics this could have caused leaky gut, candida, etc. I dont know if you noticed a worsening of symptoms related to your gut after all the antibiotics but I know that longterm antibiotics w/out probiotics can cause some damage. Antibiotics also supresss the immune system.

I'm wondering if its something like that for you....with the antibiotics causing a candida overgrowth and then because of the toxic buildup....mercury also became an issue. These symptoms can all occur without Lyme being involved. The BioSET lady said there are people having all of my symptoms but NOT having Lyme...but they do have candida, heavy metals, maybe virus or parasite, etc.

I guess you will find out more when you see her. I'm betting on candida showing up in her test because of all the antibiotics you were on. :(

But...you must have been sick before that?? Thats why you were on the antibiotics?? Something must have been happening to begin with...maybe Lyme? Maybe Celiac? :unsure:

OK...now I'm really anxious to hear what the BioSet lady comes up with.

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Donna, apparantly there is lots of Lyme here in CA. :unsure:

There was a thread on the Lyme board asking if anyone in CA had Lyme and where they got it. I was pretty shocked but ALOT of people who responded were in the Bay Area. :blink:

I am from California, and would like to know if anyone else is from here, especially the bay area.

I told my family I think I have Lyme and they said....thats not something you can get here.

I am from the bay area. Id like to know what area you are in, if you tested positive, and if you remember the rash/bite...cuz i really dont. THANKS!

yes--I live in the CA right now. didnt aquire lyme here, but know MANY MANY who have.

Northern California has Lyme risks equivalent to many areas back east.

Most of the Lyme doctors in California are in northern California so you are lucky in that regard.

Hello from San Francisco

Oh yes, we have Lyme in California. There is a state brochure with a map of CA counties showing the almost-total state exposure.

About me -- I was bit in 1981 in Big Sur on my foot -- went to a clinic a week later -- they said it was a tick and removed it. Didn't tell me anything about tickborne diseases.

I had NO -- that's ZERO -- symptoms at the time. Everyone does not get a bull's eye rash right away or symptoms.

My symptoms started two months later with sore shoulder muscles, followed by a very stiff neck and then full-blown muscle pain that was called fibromyalgia, and no one knew what that was. I never connected any of my symptoms to a tick bite.

I was only informed this year online by a nurse in Virginia, almost 25 years later, that my many symptoms were Lyme disease, and then I tested positive for it.

I am in CA as well and was infected here. San Jose. My site is www.BetterHealthGuy.com if you want to read more about my story. Feel free to contact me via the site as well with any questions.

This is the guy who appears in magazines, newspapers, he will be in the Lyme documentary "Under Our Skin" and he was diagnosed first by my favorite BioSET lady and then Igenix. I believe he still goes to Bioset for treatments. I am gonna try to contact him at some point.

I am in Calif. I may have been bitten in Tahoe but not sure. I had no bullseye rash etc.

Hi. I live in New York now, but got sick with Lyme and co-infections while living in the Bay area of San Francisco. There are ticks and Lyme in the Bay area for sure. I lived in the hills of El Cerrito and Montclair. Very woody, deers roam, etc.

I'm in the bay area too. My husband and I

both grew up around here and we both have it.

Definitely have gotten the "oh, but it's not

on the west coast" thing from people.

From Another Cali Grrl w lyme (Bay also)...many positive W Blots via Igenix and Stonybrook, Including CDC positives. Many positive Igx and MDL positive Barts. One positive MDL babs.

The East Bay Regional Park district with beautiful parklands stretching from Sunol to Pinole all have posted signs about lyme ticks. No question you can get it here!!

Im in the Santa Cruz Mountains and got it here in my basckyard, I live on 2 1/2 acres. Others here in Bonny Doon and other parts of santa cruz county have it also.

I'm from the South Bay, Los Altos....I and two of my kids have lyme. My dog has had lyme. We were all bitten in Los Altos...a suburb, no deer, wall to wall houses, with yards, and the usual small mammals that carry the ticks and the bugs.

I have lyme and babesia WA1, my son has lyme and bartonella, my daughter has lyme, ehrlichia, and babesia microti...

You bet your boots it's in the Bay Area!!!

I worked in Los Altos for about 8 years. There may not be deer where she lives but in Los Altos Hills there are deer, mountain lions and everything else you would expect to find in the hills. The hills are right there...just a hop, skip and a jump away. The deer ticks could easily get a ride into the neighborhood.

I am in Aptos, home of 17.8% minimum infection rate in adult ticks (that's right- don't believe the hype about CA being 2%!!!)in Santa CRuz County and there is SO MUCH LYME IN CALIFORNIA*)!

Forgot to mention that we have a recent tick bite infection report in San Francisco in the Monterey/Plymouth area near Glen Park towards the southern end of the city.

Just goes to show that everyone, no matter where you are, needs to start learning about Lyme disease and coinfections and how to best protect yourself.

By the way, I am so sad to be reading all these entries. Having grown up here, and very happily hiked and camped etc, it just feels so tragic what is happening.

So these are just some of the posts from people in CA...obviously its here in the Bay Area. Other places that seemed to be hot spots were Sonoma County, San Diego and a place called Ojai???

OMG--I am just so proud to have been the 10,000th post! I want to thank my mom, dad, my family here at home, my OMG thread friends, and the members of the academy! This is truly a great honor! :D

:lol::lol::lol:

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One thing that I noticed about the Wild Condor story is that not once did the girl mention diet. I may have missed it but it didnt seem like she made any changes in her diet.

I'm thinking that the diet changes I made totally saved me from getting to the point she got to. I started out with the same severe symptoms she described....but I got better when I changed my diet.

There is alot of talk about diet on the Lyme board....I think its *key* for recovery and luckily all of us have a head start as far as that goes....even if its not Lyme we're dealing with. :)

Here was one post I read...I edited it to leave out the posters personal story.

This is so important to me that I can't say it enough.

No matter what your symptoms or your treatment protocol, you must also change your diet.

Lyme depends on a clinical diagnosis. Lyme, Yeast and Rheumatoid Arthritis share the exact same symptoms, so how does a clinical diagnosis differentiate between them?

No matter which diagnosis, diet is an essential part of the healing process. Especially if you take abx/NSAIDS which are very damaging to the gut.

I do not think any one diet is the correct diet for all. Each of us is different and must determine which foods our body needs. One thing for sure, none of us need sugar and processed foods. Poison to us all!!!!

For some, meat is bad. For some, carbs are bad. For some, gluten is out (many more of us than we realize). Diary is bad for many.

Diet is absolutely #1 treatment no matter what your diagnosis and/or your symptoms and should be done in conjunction with any other treatment. Especially important if you are on abx because the abx are so damaging to the gut. Of course, probiotics are a must as well. Probably need enzymes (mega) and many other things. Each of us will have specific deficiencies that need to be addressed.

Until we do, we won't get well no matter whose protocol we follow.

It is no fun to think you have to deny yourself your favorite foods, but it is necessary in order to get well. A recent post here at lymenet linked us to a research study on AIDS that found the virus lurking in our gut. That study determined 70% of our immune system is in our gut.

You have nothing to lose by changing your diet (except fat of course) For those of you who struggle to retain weight, nuts are an excellent snack.

A good simple rule of thumb and I steal this quote from Susan Powder "If it didn't grow that way, don't eat it!".

The statement about most of our immunity being in the gut is true....our GI tract is where almost our whole immune system resides.

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wow, rachel, i read the link of that guy and i am amazed...i think he is your twin.

Laura....this kind of jumped out at me when I read his story.

In summer of 2005, I started a new therapy to help with the severe food allergies called BioSET™. At this point, I was unable to eat milk, cheese, yogurt, eggs, soy, wheat, oats, barley, or rye

To me it sounds like he has Celiac....probably triggered by the Lyme. Maybe he recovered the first time he was ill from Lyme because he had done ALOT as far as treatment and supplements to build back his immune system....even though he didnt know he had Lyme.

Its alot like me....I got ALOT better from making lifestyle changes...even though I didnt know I had Lyme. Like him...I still suffer from the allergies though.

I've read all of what he was doing as far as diet and supplementation and it was impressive....so he reagined his health for 4 years....until it happened again.

I'm wondering if possibly Celiac was triggered when he became ill the first time and then slowly over the four years it took its toll on his immunity and the Lyme came roaring back??

I think its significant that he says he couldnt eat wheat, rye, barley and oats. That sounds like Celiac to me. <_<

He has never mentioned Celiac in any of his articles. I cant imagine he's not *aware* of it....but quite possibly he's been tested and was negative....because hes on a restricted diet anyway??

Hmmm....maybe he doesnt know about it?? :unsure:

If you read about his diagnosis you can *meet* my BioSET lady. :D

http://www.betterhealthguy.com/index.php?o...6&Itemid=58

I think if he has a Celiac gene and was having all of these things trashing his gut (parasites, Lyme, co-infectants, candida, medications, etc) he obviously got leaky gut....which he states he *did* have....so that leaky gut would have allowed for gluten to leak out and the immune system would then start reacting to it. If he has a gene I would bet that he has Celiac now. <_<

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OMG......I *still* havent taken the time to ask Igenix about those titer results....my "positive" Lyme test. The one that came back like this 1:160.

I guess I dont need to ask them now because I just read this in that guys story.

My Ehrlichia (HME) IgG titer was 1:160 which is high.

So....even though he's referring to the results of his co-infectant test. I'm sure the values have the same meaning. So its not actually 1:sixteen....but...1:one hundred sixty. This means that my Lyme test was VERY positive because anything over 1:80 is positive. So I am positive by twice the normal amount. :o

There still is a 20% chance that the positive is due to cross-reactivity to another bacteria or a virus. 80% chance its positive due to Lyme Disease.

Rinne....did your Dr. give you the results to the IFA test?? You should have gotten this test too. It comes complimentary with the 2 western blots. Igenix didnt send me the results to the IFA but they sent them to my Dr. I wouldnt even have known anything about it had my Dr. not mentioned it and gave me a copy of the positive test results.

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