Your "MD" declares lyme can't be contracted in your area?

I think if someone in my family suspects lyme disease ie - got a tick bite...or has symptoms consistent...I would have them go to the Dr. and say they had a bulls-eye rash a few weeks prior.


I don't advocate telling lies...but if it's going mean the difference between getting treatment or not...do what ya gotta do...

I really like that approach as well, Girlie. Sometimes, you have to take matters into your own hands. MDs who remain ignorant at the expense of lives are LUCKY not to be sued. At least for now, anyway. In my version of the future, there will be a catalyst and we will see a 180 degree shift in what is going on w/ these MDs.

Cardinal&Gold
I see you're in San Diego next week. I strongly encourage you to contact my LLMD, just outside of San Diego. You will definitely make some progress w/ her. Email me if you would like her contact info.

A good MD will follow up the ELISA with an IGeneX Western Blot and, I also strongly encourage you to provoke a more accurate response w/ either a course of abx or over the counter Olive Leaf Extract. Unfortunately, these serology tests rely upon a well functioning immune system to create a significant volume of antibodies in order for them to be detected by the tests. But, anyone who knows anything about how the lyme infection works, knows it challenges your immune system and attacks red & white blood cells. So, how are you gonna get an accurate test with all that going on?

My ELISA was negative. My LLMD whom I'm recommending to you then had me take Olive Leaf Extract for the duration of the lyme lifecycle abt 6 wks and then she had me take the WB test. BAM! CDC positive. Depending on how long you've been taking the Doxy, you might be ready for a WB. I've heard good things about Dr. N.M. as well. Both are tough to get into and comparable in fees, and both test for confections (which sounds like you have), FYI. But my LLMD does take one insurance plan. So, I had to switch to her plan but coverage has been impressive so far… Email me for more info if you'd like.

p

I've just lost faith in the medical community - and this happened way before lyme...just so many things in my family alone....things ignored, misdiagnosed...having to fight for tests when they were warranted.

I have a list....just not right.

The two biggies: My premature baby not being diagnosed with pyloric stenosis at 5 weeks old - with projectile vomiting. A simple ultrasound was all he needed.

5 years later - My son again - not being diagnosed for Celiac disease - his Ferritin was VERY low and he was sooo tired - Dr. didn't want to even check his iron levels...asked me "Is he tired, or is he just lazy?"

So, if I highly suspected lyme disease in my family members - yup - they had a bullseye rash.

Pirouette - interesting about the GI issues. I assume, since you're proactive with your health that you've been tested for Celiac disease?

My son was finally diagnosed at age 14 for Celiac disease - but the problems started when he was a baby.
He didn't have the usual symptom of diarrhea, but he was constipated....

I read that intestinal surgery can trigger Celiac disease when you have the gene.

Maybe he had gluten intolerance and that triggered the pyloric stenosis.

He had the surgery at 6 weeks old (still wasn't even at his due date...mama was a wreck) - they cut the area (I've forgotten, I think it's the bottom of the duodendum - it's where the contents of the stomach empty into the small intestine).

So, with you, your 'flap' must have opened up to allow the stomach contents to empty?

It's interesting - I bet there is a link.

I've had doctors who ignored my picture of my own bull's eye rash, and if you saw it, your jaw would drop.

I offered to show them the spot where I was bitten, (on my back), which matched the pic, and they declined.

One doc said, "Well so what; you've been on years of ivs, haven't you?," and the funny thing is, I haven't.

I've noticed that some docs, when they see my pic, automatically become dismissive.

On the good side, a few docs were pretty awestruck by my pic, and one said, "Sh--!"

Unfortunately, even an EM rash doesn't always guarantee good results in the med. community, and if your tests are negative, docs will assume you're "cured."

Margaret

P - when they did the ultrasound, my son's pylori muscle (or valve - whatever it is) - was only allowing a little trickle of fluid to go into the small intestine - the narrowing of the pylori somehow causes the projectile vomiting. That was also identified as the cause of his slow weight gain.
So it sounds like it's the opposite of what you had - yours was allowing the food to "dump" into the small intestine.

Well, yes he had constipation early on in his life - and when he got older he would always take a book into the bathroom... Lol
Saw a few Docs about it when he was a baby, but they said the usual - give him more fibre and fluids - which didn't work.
Then when he was five, I took him to Drs because he was tired a lot - and then one day I noticed his nails were chipping and he was losing a lot of hair.
He was finally tested for Iron and put on an iron supplement - but couldn't keep his Ferritin up. I was fed up because the Docs told me he needed to eat red meat and I knew that was not the problem.
Finally at 14 years old (yup - nine years the poor guy went undiagnosed) - a Locum was filling in and she asked if he had been tested for Celiac - that was our answer.
Off gluten - took over a year for his small intestine to heal and his Ferritin to come into range and his gluten antibodies to go down.
He finally got strong and his joints are no longer hyper mobile. I had suspected for a few years that maybe he had Ehlers Danlos.

Eliminating gluten cleared up his digestive issues - no longer constipated.

P - you mentioned gluten allergy. Have you also had the antibody test? You do know that an allergy is different from the intolerance, right? (I just want to make sure you do)
My son had the antibody test to show Celiac.

And I know I keep mentioning this, but - they refuse to give you long-term antibiotics when you continue to have symptoms....BUT they use Rifampin to treat tuberculosis - for many months. My Dr. said it's often more than a year.

I believe there is already a list of abx commonly prescribed for various mild conditions… It should be included in every lyme treatment debate. I'll probably get tomatoes thrown at me for saying this, but it might be a blessing in a way that people are forced to pursue alternative treatments, which I think leads to a more holistic approach to a more successful treatment than "regular (and lyme ignorant) Joe MD" throwing a bunch of abx at the problem, particularly when chronic problems set in due to mistreatment...

Bellyfull LOL
Sounds like a menu at a kid's Halloween party!

G
Your poor son. I hope he's doing better now. Yes, my PS sx were just opposite his. I've read that PS is more common in boys because they tend to eat more. Watching your child suffer for YEARS must have been maddening. Particularly at a time when people didn't have the kind of resources we do now to educate ourselves.

My mom had her hands full raising 3 kids (4 if you count my father) until their divorce then she was on her own. She worked as a medical assistant for awhile w/ tough hours. We learned how to do our own meals, but of course, it was mostly processed "kid friendly" foods. But that was what everyone did. But processed foods back then were not like processed foods today because of how today's grains have been destroyed and everything is now made with GMO soy and corn and sugar.

Knowing what I know now, if I were a new parent, I would have basic medical coverage for emergency purposes (here in the states). But I would take my kids to an ND for health CARE and maintenance. I wouldn't step foot in an MD's office unless I had to get confirmation, second opinion, or specific meds for a serious condition.

Yes, food allergies and sensitivities are different. I probably shouldn't have used the term "allergy test". It was a food sensitivity test, which indicates IgG, IgA, IgE levels. I've been told by a couple of NDs and have read online that your antibodies to foods, just like other things can stay in your body a long time. But for me, even when I've not eaten gluten for a long long time (and there's little chance of it slipping in because I'm literally eating only veggies and chicken… shoot me now…)

You probably know more about CD but my understanding is that it is nothing like a sensitivity or allergy and you have immediate physical reactions to it. I'm pretty sure most of my GI problems as a kid were from y/f overgrowth. I ate mostly cereal and PB&J on Wonder Bread, pop tarts, and fruit salad (I loved fruit salad) growing up. And then switched to pasta and pizza in college up through my 20s. Mostly crap food but I always had a very low appetite (a common y/f overgrowth sx) so at least I never ate much of it. But never had GI issues. And I was always skinny and fit because I was so active.

Maybe I should be tested, but I haven't been because my GI issues never change, even after being off gluten for a year. I think my issue is a sensitivity to grains, in general.

But that's also been hard to determine due to all the damage from leaky gut. With leaky gut, ALL your food leaks through the holes the yeast/fungal damage caused and so you have antibodies to all of it. You should see my sensitivity tests. I just know that I have fewer problems when I eat no grains, no beans, no dairy, no sugar. I hope it's not a lifetime situation, but it might be. But it takes years for leaky gut to heal, particularly with all the abx and herbs I'm piling into my gut.

One thing that cleared up w/ the abx is my extreme cramping and projectile vomiting episodes. I haven't had an episode in 4 months… I'm so happy. ;) WHY, is a little bit of a mystery, since everyone thinks the episodes are palsy of the gut from the Bart, and I don't believe Rocephin is effective against Bart… but the abx is the only likely catalyst.

p

P - The test for Celiac is the tTG - IgA (transglutaminase) - so maybe you had it. If you don't have celiac your antibody number should be <20 - my son's was over 200 (they stop counting at 200 so we don't know how high it was).

My son never had glaring symptoms that pointed glaringly to Celiac all those years - he had constipation - where more people will often have diarrhea soon after ingesting gluten. Then he developed low iron - the little villi in the small get damaged...and flatten out so it doesn't allow for nutrients to be absorbed in the small intestine. Some nutrients are absorbed in the large intestine. So Ferritin is one, and I think B12 is another - absorption happens in the small intestine. His B12 levels were fine though.
He also had flexible elbows and knees (hence - me going down the Ehlers Danlos road) - and when we discovered at the age of 14 he had gluten intolerance (Celiac) - the Docs were adamant that his elbows/knees and general weakness was NOT from the Celiac.

Well, soon after he got off gluten, he had a growth spurt, and he got stronger physically...and his knees/elbows do not bend backwards anymore...

I don't believe that something that is wreaking havoc in your body - to the point of damaging your small intestine...wouldn't make the entire body sick. It's common sense to me...but not to the Docs.

Makes me wonder sometimes.

Editing to add this:
I was scorned because to confirm Celiac, my son was supposed to have a scope into the small intestine to see the damage. But, as soon as the blood test came back, I took him off gluten immediately to allow his poor body to heal. By the time we saw the gastroenterologist - approx 2 months later...he told us my son needed to do a 'gluten challenge' - eat gluten everyday, and then get a scope - so basically redamage his intestines...I said nope, not doing that - he's been sick long enough.

I told the Doctor that my son will be off gluten the rest of his life...and that's it.

I discussed this with my son...and I told him, we aren't doing the test to prove it - but you have to promise me that you will remain gluten free the rest of your life. He agreed - as he was scared to have the scope.

Besides, we have enough - just by the fact that he went off gluten and his antibodies went down to normal...and his Ferritin goes up into range. Even if he doesn't have proof of intestinal damage, we KNOW that gluten is harming his intestines. I don't need to see the damaged villi.