What if it's not Lyme

Has anyone been treated for Lyme, but then told something else???

I was just doing some of my own research, and found that both the 41 Kda & 66 kDa are also bacterial parts for H Pylori? I had 41 & 66 positive on IGM.

Even though my H Pylori tests are negative, I'm wondering if this could be a false negative. H Pylori are spirochetes, just like Lyme.

And maybe my 31 & 39 IND could be something else. What do you think???

I was just wondering. I have been going by symptoms too, for Lyme. But have been reading about chronic H Pylori symptoms, and many of them resemble some Lyme symptoms; such as: chronic GI issues, weight loss, nausea, headache, muscle pain, flatulence, fatigue, etc.

PeteZa,

You're right...like I said, I was just curious because H Pylori is also a spirochete. All of my original symptoms started as GI involvement. H Pylori drills into the stomach lining, so could it, too, hide from testing??? I have had the blood and stool tests for H Pylori, but they were negative. I'm wondering if the breath test is any better.

I notice that you started antibiotics last January. For my body 1 month of antibiotics showed GI issues. Are you still on antibiotics? Maybe it is doing something to your insides? Maybe it is time to switch to some other protocol and give your tummy some time to heal.

Just guessing here. I hate to see you destroy your gut. It is so essential to our health.

PeteZa,

I started Amoxy for the Lyme at the end of this Jan, not last. The Amoxy didn't seem like it was doing anything. I'm seeing a new LLMD for the Lyme, and he doesn't want me to take anything until he runs more tests.

Krimpet,

Quest does do the H Pylori breath test. I actually just did one this afternoon. They said they don't do the blood test any more as it is too unreliable.

I questioned H Pylori due to it being a spirochete bacteria, and the fact that my GI was where I had the first symptoms. I had the severe GI issues well before starting any meds.

Beeperoni it has been my observation of many lyme patients here that lyme goes for our weak spots. Mine was my brain and I ended up having a CT scan and going to a neurologist and test after test because they thought I had a tumor. Nothing!!! Just good ole lyme.

Maybe you need to take extra care for your stomach. I honestly do not think that your Igenex test saw H. Pylori and got it confused with lyme. That would be a very inept laboratory scientist.

Now with that being said, you definitely can have both h. pylori and lyme. Your test says you have lyme and you may also have h. pylori. I do not believe that you do not have lyme but have h. pylori instead. I am so sorry.

Hey...I also had SEVERAL h-pylori tests come back negatve...Ive never heard h-pylori being a spirochete...very interesting because I ALSO have a troubled root canal...

FOR YEARS my 1st and only symptom was severe upper left stomach pain, chest pain, etc. I was told between 1996-2010 that it was GERD. I used prilosec, nexium, mylanta, gaviscon. Then in 2010 I had an extensive food intolerence test come back positive for gluten, & dairy, and all the foods Id been eating basically. Well, the diet correction only slightly helped because I STILL had severe bouts of sudden sharp incapacitating pain that resulted in a compacted gall bladder.

My nurse sister, my hubby, doctors and I all concluded that the Prilosec/Nexium products likely destroyed my gall bladder. So since having the gall bladder removed in 2013=that specific stomach pain IS GONE, however I STILL got (past tense) a vague queasy, squeezing stomach sensation that was accompanied by air hunger, and chest discomfort-those have been alleviated w/doing a strong Chinese herbal antimicrobial...

Post Edited (sweetpeaisme) : 5/4/2016 10:06:30 PM (GMT-6)

Also, theres a class-action law suit for patients who were wrongly prescribed omeprazole products believeing they had too much acid production when it was acually bacterial infection...overuse of omeprazole results in the bodies INability to absorb magnesium=magnesium deficiency.

Its the absence of stomach acid that PROMOTES growth of the helicobacter so taking omeprazole products HELP the bacteria

I've shared parts of this story before so I apologize if it's repetitive

My first major bart symptom was GI distress (about 7 yrs ago). I was in so much pain all the time that I was practically starving myself because it just felt better not to eat. And when I didn't eat, my viral load would soar. So, I was constantly sick, weak and hungry. I was on a liquids/soup diet for over a year (and no, I didn't lose a single ounce of weight... don't get me started).

Anyway, I knew nothing about lyme at the time, I knew almost nothing about anything regarding health or a more natural approach to healing. But I did know how to google LOL and found an interesting ND who specialized in thyroid, gastro and stress issues (wwooaaaahh! who knew these were related???) and she got me started on thyroid meds, neurotransmitter rebalancing and a diet to deal with my leaky gut.

One of the things she suspected was that the pain from eating was due to low acid and my body trying to digest solid food. So, she had me take hydrochloric acid (HCl) capsules, starting with one before each meal and working my way up to a dose that triggered acid reflux. I was so deficient in acid, I was taking 9 HCl capsules per meal.

The HCl helped jump start the pancreas and bile production, but not for long because what was really going on, I know now, is that I had some sort of infection or bacteria that was causing everything to malfunction (and I'm a little frustrated w/ the ND that she didn't try to identify that).

So, jump to 3 yrs ago when I was suffering sinusitis and bronchitis for 13 straight months and in/out of MDs offices, who each prescribed about 9 different courses of various abx. Some of these abx are used to treat lyme & co and they stirred up herxes! Of course, at the time I knew nothing about herxes but I did start having enough specific symptoms that I was able to Google and lyme disease kept popping up... and that is how I suspected it and got myself to an LLMD.

One of those herxes was the GI attacks--around midnight, I would have a pulsating cramping in my upper GI, and then also my stomach and then also every inch of my torso and the pulsating would get more and more painful as the hours dragged on. I'd crawl to the toilet and would finally projectile vomit a couple of times then pass out. I've never been in so much pain.

Turns out, one of the abx I had taken was levofloxacin, which is used to treat bart. And after that abx course is when these attacks started, and would continue every 4-5 wks (reproduction cycle?). I didn't make the connection back then but it's now clear that I poked the hornet's nest with the bart in the gut with the levofloxacin and continued poking with the A-bart.

I had no attacks after stopping A-bart and then when I started it again Feb 3, I had another attack Feb 4. That's when I was able to make the connection. I'm pretty much incapacitated during these hours-long attacks and MD told me to head to the ER next time, so I did. It happened to be Christmas Eve. :(

ER is triage. They are taught to look broadly and act specifically, immediately, ask questions later. It's the place I want to be after a car accident or if I'm having a heart attack but it is not a place for health care.

The ER nurse was sure I was having a gall stone attack and the ER doc told me he was calling in the on call surgeon to, you know, go in there and do whatever he needs to do, because he thought maybe the MRI showed a stone, possibly. The nurse was adamant that I needed an acid blocker and got mad when I told him that my problem was too low acid--because how in the world should a patient know that kind of info. I fled as soon as I could.

LLMD started me on vancomycin 7 wks ago, which is a very strong antibiotic used for MRSA and c-diff and other infections that have become resistant to other abx. Within a few minutes of my first dose, I had relief. For the first time in nearly a decade, I didn't feel as if my upper GI and stomach were in a vice every darn minute of the day.

As I've continued the doses, the relief comes and goes. So, my theory is that there is likely another bacteria present that the vanco, which targets gram-negative bacteria, isn't hitting.

Through DNA analysis I learned so much about my mutations that I couldn't process it all... or remember everything, but I do remember that I was born with low "good" bacteria. So that made so much sense to me, given several associated issues I've had. And once I'm done w/ treatment I estimate I've been on abx or antimicrobials for 3-4 yrs.

So, while my Gi situation has improved, I am already thinking very seriously that I have a fecal microbiome transplant in my future. I don't really think I'm going to solve my GI issues until I figure out a way to naturally repopulate. OK---so (finally) getting to my point... as I have done a lot of reading about transplant, the studies, the success stories, it is quite apparent that so many people who have been dx with IBS, SIBO, chron's, gall bladder, pancreas diseases... are also opting to try to repopulate their gut biome.

Gastroenterologists are prevented from doing it for any other reason than previously failed c-diff treatment. So people are doing it on their own. And I am astonished how how many people have relieved symptoms. The studies show its success rate is in the high 90 percentile, which is unheard of. But think about it - all of these people who have as many different diagnoses as possible, really have one thing in common --- an imbalanced gut flora.

One of the ways our guts become imbalanced is our bodies stop producing digestive enzymes and acids. There might be a chicken-and-egg thing or there might be an impact or outside factor like lyme, bart, or some other bacteria we've ingested that starts the fires burning...

Whatever it is, I'm astonished that the GI is so badly understood by the medical industry. Wait, no I'm not.

OK - sorry that was long but I'm too tired to edit! Anyway, there's so much to learn about gut bacteria and I think it holds the key to most GI issues.

-p

My LLMD is exploring for parasites now. He just ordered testing for all co-infections plus H Pylori, Candida albicans, EBV, CMV, etc. He stopped my treatment until results come back; unfortunately, I won't get those til the 25th. He said some things should be treated before the Lyme.

So, I had IGG 31 & 39 IND on my IgeneX. Are either one of these "sensu stricto"?

Yes. While band 31 is controversial, band 39 is very much Lyme specific. It indicates BmpA - Bacterial Membrane Protein "A".

And don't forget, IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands. This is all up to the 'eye' of the lab tech (or automated machine) reading the test as to whether or not it's "dark enough" to be considered positive or not. It's not like a person has a number to go by, it's a matter of just how dark the line is as to whether it's considered negative, IND or positive. You can see an example of this here, about half way down the page: /www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/