Is it just me or are the sickest people the ones who don't test positive to western blot?

Well, I was infected for 40 years the first time - and also had many bouts of severe bronchitis, appendicitis, gall bladder infected, tonsillitis and many other infections where I was placed on multiple rounds of heavy duty abx - but until the treatment was specifically aimed at Lyme, I never had any improvements.

That's a lot of years of treating miscellaneous infections with no overall symptom improvement.

I didn't heal with the abx for Lyme even though I was on them for a full year - the herxing was just too severe and I had to stop. Seizures and a steady decline until I was completely bed ridden.

I had to stop the abx, detox for years and then restart treatments with herbs only (back when herbs were scoffed at for treating these infections), and I healed every infection I had in only 2 years of treatments.

Yet I had completely negative WB's the whole time, until I had that full year of abx - then I was "suddenly" fully CDC positive.

The thing is, not everyone is going to heal with pharma abx only, not everyone is going to heal with herbs only, not everyone is going to heal with Rife only and so on. Many of us have so much more than just Lyme going on (& I know that's part of your point, but you seriously can not separate out Lyme from the other infections) - other infections, other conditions in the body and the need to work for many puts so much extra stress on the body at times that it can get in the way of a person healing.

You seem to have quite a bit of your information backwards. These doctors lay a LOT on the line to treat Lyme patients (those that actually treat it appropriately and are reputable), they won't risk treating someone for Lyme that doesn't actually have it. We loose at least 5 LLMD's a year right now due to sanctions and their losing their licenses due to not treating by IDSA treatment standards.

Do you have examples of people staying in constant treatment for 10 or 20 years? I know that I have been working on my health for the last 9 years, but that includes a 2 year break from these infections and only dealing with adrenal and thyroid issues - and that doesn't take into consideration all the breaks I've had to take from treatment these last 2 years.

I never tested positive either. I was early disseminated, just 2 months into the infection and had started the "standard" abx (100 mg Doxy twice day). But it took nearly 5 months of pulsing abx to get me well. But I did get well, if you want to call it that.

I'm susceptible to lots of infections and it seems I just don't shake them off like I used to. My elbows and arms still hurt, periodically. That never went away. Damage, I guess. But when I did test, even though negative, the one band that would have made it a positive, was 'indeterminate'.

I know I had borreliosis, which is what I prefer to call it.

I'd like to add, my CD-57 did not even indicate low NK cell count; it was at 119. Then I had the CD-57 again in 2 years, and the number was LOWER: 109. So there you have it.

Studies and papers that back up seronegative Borrelia (Lyme disease)
www.ncbi.nlm.nih.gov/pubmed/3054554


www.thelancet.com/journals/lancet/article/PII0140-6736(90)90606-6/abstract
Many people are now denied the WB because they got a negative on the ELISA/IFA


jama.jamanetwork.com/article.aspx?articleid=408467


www.anapsid.org/lyme/lymeseroneg.html


/www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/14407142

julymorning said...
"But treating Lyme, and for years and years with no evidence of an infection is probably going to end in more pain and illness with no solution."

You have that backwards for most people. Most of us had no clue about Lyme and were treated "for years and years" for all manner of disorders with medications we took dutifully that not only did long lasting damage to our bodies, but did no good whatsoever in treating what was causing our problems, they were merely throwing drugs at the symptoms.

At a point, those of us that suffered with no clue, eventually run into something and the proverbial light bulb goes off in our head. Eureka! That's me! That's what I've been going through!.

We get enough of this 'pooh-poohing' from the medical community if not about Lyme or any number of the tick diseases, but also about our symptoms. This group is here to give support and suggestions, it's not fair to try to undermine the hope of these people that come here often times as their last stop.

No, you're making the same point as I am; treating something that isn't there is not the way to go. Whether that's lyme, fibro, MS, etc. It's about seeing every specialist in the book to find the cause. If you've tested everything out there, and want to fall back on lyme when everything else turns out negative, fine, but if you don't exhaust everything before assuming it's lyme, you may be missing the culprit.

As for the support part, what's more supportive than trying to help people find the actual cause of their illness? I'm not just going to blindly believe everyone has lyme when they may well not, and say "attack that lyme!" I'm going to say, "you should be testing for lots of other things in case its NOT lyme!"

Like the person who treated "chronic lyme" for 26 months with abx then went to mayo where they said you do not have lyme, but you've done a lot of damage to your system, and they died the next day from infection due to abx overuse. Or the person who had pancreatic cancer which had reached stave IV by the time they caught it, and died weeks later. Those people I'm sure wish they had more real "support," so they could find their real diagnosis and get better, not end up dead.

Post Edited (jimmy902) : 9/24/2016 12:28:53 PM (GMT-6)

Occasionally people come here and post a very similar post to this one. (Yawn). And I dont get the point. Lots of he said, she said quotes in replies LOL.

Fact is, many here do or already looked at other or additional potential causes of their ills. My LLMD did too, its only common sense. Some people have several causes, which added together , makes it really complicated.

**That said, I know someone who was positive on western blot, been treating 3 years and still has issues. Yep.**

You know there are a lot of very rare diseases recognized by western medicine but treated by only a handful of Drs in the US. They are "top notch" conventional Drs and treat with best guesses some times, just to narrow down the illness. I know someone who was treated this way for a very rare cancer and is now alive and well 20 years later. He was part of a research treatment which is now a new standard.

Sometimes you take a chance if you dont know for sure what the outcome might be, because miracles can happen.

This type of post has been recycled many times. The OP should just be happy that their situation was not a complicated one, and get on with their life.

All diseases is pathogens .causing ,.whether viral bacterial or fungal..the sooner docs know

Girlie said...

jimmy902 said...

julymorning said...
"But treating Lyme, and for years and years with no evidence of an infection is probably going to end in more pain and illness with no solution."

You have that backwards for most people. Most of us had no clue about Lyme and were treated "for years and years" for all manner of disorders with medications we took dutifully that not only did long lasting damage to our bodies, but did no good whatsoever in treating what was causing our problems, they were merely throwing drugs at the symptoms.

At a point, those of us that suffered with no clue, eventually run into something and the proverbial light bulb goes off in our head. Eureka! That's me! That's what I've been going through!.

We get enough of this 'pooh-poohing' from the medical community if not about Lyme or any number of the tick diseases, but also about our symptoms. This group is here to give support and suggestions, it's not fair to try to undermine the hope of these people that come here often times as their last stop.

No, you're making the same point as I am; treating something that isn't there is not the way to go. Whether that's lyme, fibro, MS, etc. It's about seeing every specialist in the book to find the cause. If you've tested everything out there, and want to fall back on lyme when everything else turns out negative, fine, but if you don't exhaust everything before assuming it's lyme, you may be missing the culprit.

As for the support part, what's more supportive than trying to help people find the actual cause of their illness? I'm not just going to blindly believe everyone has lyme when they may well not, and say "attack that lyme!" I'm going to say, "you should be testing for lots of other things in case its NOT lyme!"

Like the person who treated "chronic lyme" for 26 months with abx then went to mayo where they said you do not have lyme, but you've done a lot of damage to your system, and they died the next day from infection due to abx overuse. Or the person who had pancreatic cancer which had reached stave IV by the time they caught it, and died weeks later. Those people I'm sure wish they had more real "support," so they could find their real diagnosis and get better, not end up dead.

You can never exhaust 'everything' - do you know how many diseases there are?
You know how I know? because i scoured the internet for over a year.
I did go to specialists...and just about weekly blood tests to 'find' something, rule out the usual suspects: ALS, MS, endocrine problems, etc.
A year of this - hadn't even come close to exhausting everything.

But 'exhaust everything'? really...?

You talked about someone dying from infection from abx overuse. That was most likely c-difficile.


People also die from cancer treatments....does that mean we shouldn't be treating them for cancer?

If you're not hear to support or in NEED of support...then why not just leave quietly?

Ok, exhaust *as much as possible*. A lotta people see one or two docs, go to a naturpath, never test positive, settle on thinking they have lyme, and will delay or never find out what they might have that isn't lyme.

Of COURSE NOT! But people should be treated FOR THE THING THEY HAVE. If you have cancer, take cancer meds. What if everyone assumed they had cancer though based on symptoms? And were getting chemo... Sounds pretty bad when you think about it being another disease doesn't it.

I AM here to support. I am supporting people who have not gotten a diagnostic test to show what they have, have been treating lyme to no avail, and think that they're fighting "chronic lyme" when there's so many other things they could have. That's called support.

I think this has gone in long enough. Jimmy, you've finally stated your purpose in this thread, thank you. And I agree ( and so does everyone else) that it should not be taken for granted that a person has Lyme disease, and that they should always be evaluated for possible other issues. But to assume that there are a great number of people that are being treated for Lyme unnecessarily isn't correct either.

So, now this thread needs to come to an end, as it's distracting from the purpose of this forum, which is based on support. So I'm going to lock this thread. Please, let's let this end this discussion.

Thank you.