Beaver gets Lymed. (Trimethoprim, Plaquenil?)

[Sushi]

Just got my Infectolab LTT and it is not positive! Kinda blew me away.

Sushi

 

[PhoenixBurger]

"Infecto-labs" ?

Is that one of those "Lyme doctor" labs because the lyme doctors wont use universally recognized labs for their blood work, because of a "conspiracy" story that everyone is out to get them?

 

[Sushi]

"Infecto-labs" ?

Is that one of those "Lyme doctor" labs because the lyme doctors wont use universally recognized labs for their blood work, because of a "conspiracy" story that everyone is out to get them?

It is a lab in Germany that is well respected in Europe (and now apparently in Austrailia). I'd guess that the name of the lab--Infectolab--comes from German and therefore sounds a little odd in English: http://www.infectolab.de/index.php?id=22&L=1

Their LTT test seems more accurate than most. Beaver's results were very positive, mine were not:

Borrelia Elispot-LTT (LymphocyteTransformationsTest)


The Elispot-LTT method has been approved by the FDA in May 2011 for M. tuberculosis (Not ITT or MELISA) !!!
The FDA argues in this paper:
"... A positive result (in the Elispot-LTT) suggests that an infection is likely, a negative result that an infection is unlikely..."
"... Results (of the Elispot-LTT) can be available within 24 hours ..."
A Borrelia infection does not only activate the humoral immune response, but also activates T-lymphocytes at the same time. Once Borrelia bacteria are not active anymore, the T-cellular immune response is not present.
It is not possible to test the treatment success by Borrelia antibodies, because the 'titer" or antibodies can be measured in the blood over years. Furthermore, Lyme infections in Stage I (e.g. 'bulls-eye rash' or 'summer flu') only show antibodies in the blood after weeks and sometimes do not show them at all.
The Borrelia Elispot-LTT eliminates these problems. The test reflects the actual, current Borrelia burgdorferi activity of chronic and also acute Lyme infections. The Elispot-LTT is highly sensitive and can detect even one single Borrelia-reactive T-cell in the blood. The Elispot-LTT is very helpful when monitoring a chronic or acute Lyme therapy. The Elispot-LTT should usually become negative about 6 to 8 weeks after completion of an effective therapy.

 

[PhoenixBurger]

It sounds like an X-Man

 

[neptuna]

I suggest the new ALS Lyme culture with the PCR and Eurofins sequencing option. It appears to be the best test to determine an active infection and does not suffer from the multitude of indirect tests:

see: Improved Culture Conditions for the Growth and Detection of Borrelia from Human Serum

Read the paper. Its very solid evidence. More validation is coming.

http://www.ncbi.nlm.nih.gov/pubmed/23470960

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3590594/

LHCTom....The new ALS (American Lab Services) borrelia test you described does sound promising. At present, it runs ~$450 if I'm correct -- so pretty pricey..

Here's a link that I found interesting discussing a bit about the test validation (and of course the inevitable controversy): http://lymedisease.org/news/lymepol...s-igenex-the-c6-and-the-new-culture-test.html.

 

[beaverfury]

Well, it actually turns out that the combination that you have been prescribed is a standard protocol for Lyme...just not in the US where I am because roxithromycin isn't available here. It's called the Gasser Protocol and seems to be more popular in Germany.

Here is a thread that cites some studies:

http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=33

So long as you aren't allergic to sulfa drugs (like me!), I would probably give it a shot. Looks like there has been some success with it.

Learn something new every day!

Ema

Excellent. Thank you so much for that link, Ema. That is exactly the information i have been wanting to read.

Only just saw your reply as i rarely have net reception lately. That gives me some peace of mind to know that the protocol i am on is for dealing with lyme. I had thought it was a preliminary treatment to deal with other co-infections first, and i don't have the patience to deal with months of that.

I haven't started the treatment yet. Still weighing everything up.

I will let everyone know how i go.

 

[beaverfury]

Just got my Infectolab LTT and it is not positive! Kinda blew me away.

Sushi

Confusing. Where do you go from here, Sushi ?

At the same time as me having uneqivocally positive results, the West Australian authorities insist that borrelia burgdorferi doesn't even exist in WA! It does give pause when considering the efficacy of testing.

I live in a rural culture where men spend a fair amount of time in the bush, yet i have never heard of a local contracting lyme disease.

It seems the immune response involved in me/cfs is the common denominator whatever the infection or trauma. Be it lyme, EBV or whiplash.

In any case, i am going to take my pills like a good little boy and see what results. It's a gamble.

 

[Sushi]

Confusing. Where do you go from here, Sushi ?

At the same time as me having uneqivocally positive results, the West Australian authorities insist that borrelia burgdorferi doesn't even exist in WA! It does give pause when considering the efficacy of testing.

I live in a rural culture where men spend a fair amount of time in the bush, yet i have never heard of a local contracting lyme disease.

It seems the immune response involved in me/cfs is the common denominator whatever the infection or trauma. Be it lyme, EBV or whiplash.

In any case, i am going to take my pills like a good little boy and see what results. It's a gamble.

Yes, take your pills like a good boy! Did you test by PCR as well? I have that pending, but it will probably also be negative. I am also waiting for PCR on Bartonella, C. Pneum, and HHV-6. Then we'll see what to do.

Sushi

 

[beaverfury]

Yes, take your pills like a good boy! Did you test by PCR as well? I have that pending, but it will probably also be negative. I am also waiting for PCR on Bartonella, C. Pneum, and HHV-6. Then we'll see what to do.

Sushi

My lyme and erlichia PCR tests come up- 'not detected'. I wish i hadn't wasted $900Aus, as the treatment regime goes ahead anyway, based on positive immunoblot and ELISA.

I'm starting to get excited about treatment and am anticipating getting better. (Which might be pure folly and could end in bitter disappointment, but if feels good now ) .

Start tomorrow

 

[GcMAF Australia]

My lyme and erlichia PCR tests come up- 'not detected'. I wish i hadn't wasted $900Aus, as the treatment regime goes ahead anyway, based on positive immunoblot and ELISA.

I'm starting to get excited about treatment and am anticipating getting better. (Which might be pure folly and could end in bitter disappointment, but if feels good now ) .

Start tomorrow

there is WA Lyme fb group
I am not sure how Dr Derham views the group information ??
But they seem to have a high regard for him
and some of the information seems to be quite good
Lyme protests coming up in May in Perth and all other cities.
Certainly there are some success stories with improvements starting to appear.
&
I think some of the PCR tests are not all inclusive at the moment.

 

[Lotus97]

One of the problems with Lyme is the spirochetes are able to find hiding places from both the immune system and antibiotics. This is common with other pathogens. If the Lyme spirochete is stopped with antibiotics before it widely disseminates, its not difficult to kill. Think about the Herpes 1 and 2 models. Once the Herpes virus gets inside your nervous system, its virtually impossible to kill since neither the immune system nor antivirals can get to it. The immune system and antivirals can stop an ongoing infection but then it returns later from its hiding place in the nervous system. The Lyme model is similar but with many hiding places and the more time the more disseminated. If you have not been treated in a while, the spirochetes come out of hiding and cause the immune system to cause inflammation causing a variety of symptoms depending on where the spirochetes go. When you take antibiotics, it typically kills all the accessible spirochetes. This results in an improvement in symptoms. But some hide waiting to return. So you stop the antibiotics and out they come. Until persistence is shown to be real, there will be no research searching for ways to address each hiding place. Persistence studies are badly needed. Different antibiotics are effective to varying degrees in extracellular places, the many intracellular places, pass through the Blood Brain Barrier kill Borrelia in forms without cell walls - the so called L-Forms, Cysts etc.. There has been some recent research that Borrelia may hide out in the Biofilms of other bacteria already in your body. If the spirochetes are able to hide inside Biofilms which are quite common in other pathogens, that's yet another hiding place. This is basically why so many antibiotic protocols are tried. One common sense based theory says that if you don't attack all the hiding places at once or in close proximity, you will never kill all the Borrelia. It may be possible that there are hiding places as in Herpes 1 and 2 that will never be cracked. This may be why its so hard to cure Lyme. It all depends on what hiding places are invaded. Getting to Lyme early minimizes dissemination to the many hiding places. Waiting till its highly disseminated is not good. That's why the lousy CDC 2T test the resistance to persistence studies is doing great harm. Write your congressman about forcing the NIH and CDC to revisit culturing - the gold standard and in human persistence studies using a culture. Until that happens, this nightmare will continue.

I was just reading today in Buhner's book about how Borrelia encyst in the spinal area. My relapse started right after getting a few chiropractic adjustments. And both times I had a Lyme rash (2 1/2 years apart) it occurred a month or two after seeing a chiropractor. I wonder if the Borrelia were dormant in my spinal fluid and then the adjustments reawakened them. It would be nice if I could just live in passive coexistence with them. I was making a recovery before that. Working out at the gym was the main thing that started my relapse, but it did get worse after the chiropractor.

 

[helios]

Hey Beaver, I got a positive result for Lyme a few months back. I was a little in disbelief with the outcome. I don't know if I got it after a European holiday or if I got it back in the 80s when I was bitten by something then I slowly developed CFS in the few years after. I was unsure about feeling relieved with the outcome due to all the controversy over this disease (diagnosis & treatment). Anyway for me at least it felt good to be able to tell friends & family that I have a specific condition and not just CFS (which many don't take seriously). I spent the first couple of weeks dealing with parasite issues, and then started on the first ABx. The protocol my doc has prescribed me is Doxy then Bicillin then Plaquenil. No talk yet of how long, but I am expecting at least 3 mths given I have been feeling unwell for 13 yrs. I am also taking nattokinase + some specific herbs.
I had felt well (at times) before when I have been on ABx over the years.

 

[helios]

HR, For PCR testing I was told by Igenex that the patient needs to be off ABx for at least 3 weeks, but for Western Blot test it is not that necessary to quit ABx.

 

[GcMAF Australia]

I was just reading today in Buhner's book about how Borrelia encyst in the spinal area. My relapse started right after getting a few chiropractic adjustments. And both times I had a Lyme rash (2 1/2 years apart) it occurred a month or two after seeing a chiropractor. I wonder if the Borrelia were dormant in my spinal fluid and then the adjustments reawakened them. It would be nice if I could just live in passive coexistence with them. I was making a recovery before that. Working out at the gym was the main thing that started my relapse, but it did get worse after the chiropractor.

At the tick conference in Sydney they talked about Borrellia in the spine.

 

[GcMAF Australia]

Hey Beaver, I got a positive result for Lyme a few months back. I was a little in disbelief with the outcome. I don't know if I got it after a European holiday or if I got it back in the 80s when I was bitten by something then I slowly developed CFS in the few years after. I was unsure about feeling relieved with the outcome due to all the controversy over this disease (diagnosis & treatment). Anyway for me at least it felt good to be able to tell friends & family that I have a specific condition and not just CFS (which many don't take seriously). I spent the first couple of weeks dealing with parasite issues, and then started on the first ABx. The protocol my doc has prescribed me is Doxy then Bicillin then Plaquenil. No talk yet of how long, but I am expecting at least 3 mths given I have been feeling unwell for 13 yrs. I am also taking nattokinase + some specific herbs.
I had felt well (at times) before when I have been on ABx over the years.

Lyme is very common in Europe
You may have a native Australian strain though
all the best

 

[baccarat]

I was just reading today in Buhner's book about how Borrelia encyst in the spinal area. My relapse started right after getting a few chiropractic adjustments. And both times I had a Lyme rash (2 1/2 years apart) it occurred a month or two after seeing a chiropractor. I wonder if the Borrelia were dormant in my spinal fluid and then the adjustments reawakened them. It would be nice if I could just live in passive coexistence with them. I was making a recovery before that. Working out at the gym was the main thing that started my relapse, but it did get worse after the chiropractor.

The same thing happened to me years ago. Got sick after a chiropractor fixed a dislocation in my lower back which other four or five chiros and osteos couldn't fix. The following year I had a major replapse after seeing him for the same problem.

I personally don't think the Borrelia ever goes to sleep, it also depends on how strong the immune system is. I have a supsicion that manipulating the back may cause a release of stored toxins which then make us sick.
Also the reason lyme make us sick is due to the toxins released by the bugs, if I'm not mistaken, and people who don't get better are the ones who are more reactive to such toxins and can't get them out their system for genetic or other reasons.

 

[baccarat]

[quote="helios, post: 348759, member: 3409" I spent the first couple of weeks dealing with parasite issues [/quote]
When you get bitten the vector passes on not only borrelia but with it a whole range of other parasites which live in symbiosis with it. It took me a long time to deal with all of that.

 

[Lotus97]

The same thing happened to me years ago. Got sick after a chiropractor fixed a dislocation in my lower back which other four or five chiros and osteos couldn't fix. The following year I had a major replapse after seeing him for the same problem.

I personally don't think the Borrelia ever goes to sleep, it also depends on how strong the immune system is. I have a supsicion that manipulating the back may cause a release of stored toxins which then make us sick.
Also the reason lyme make us sick is due to the toxins released by the bugs, if I'm not mistaken, and people who don't get better are the ones who are more reactive to such toxins and can't get them out their system for genetic or other reasons.

Since I've never been tested for Lyme due to the possible inaccuracies of many tests, this worked out really well for me since those were the only times my rash appeared. Awhile back I was doing a Google search to see if other people with Lyme had the same problem and what I found instead were several chiropractors' websites saying that adjustments would be good for Lyme. I don't know enough to say whether sometimes adjustments can be helpful, but I'd be cautious.

 

[xks201]

Most of what this guy does is Lyme treatment. He appears to have a huge success rate. http://floridadetox.com/

 

[beaverfury]

Hey Beaver, I got a positive result for Lyme a few months back. I was a little in disbelief with the outcome. I don't know if I got it after a European holiday or if I got it back in the 80s when I was bitten by something then I slowly developed CFS in the few years after. I was unsure about feeling relieved with the outcome due to all the controversy over this disease (diagnosis & treatment). Anyway for me at least it felt good to be able to tell friends & family that I have a specific condition and not just CFS (which many don't take seriously). I spent the first couple of weeks dealing with parasite issues, and then started on the first ABx. The protocol my doc has prescribed me is Doxy then Bicillin then Plaquenil. No talk yet of how long, but I am expecting at least 3 mths given I have been feeling unwell for 13 yrs. I am also taking nattokinase + some specific herbs.
I had felt well (at times) before when I have been on ABx over the years.

Hey Helios

You sound similar to me. I wasn't sure whether to be pleased or not.
Fortunately, people have responded much more sympathetically when i say i have lyme. They just go quiet when i say i've got cfs. It seems to be more legit to them, and takes some burden off me.

This may be in part the work of 'Today tonight' in WA, which gives lyme lots of air time and scares the heck out of people.

I've been on my regime for about a week and a bit. I'm slowly building up dosages.
It's been a bit nasty some days, with yet more downtime to deal with. But so far it's do-able.

One thing that surprised me was pain that started in the area of my upper right wisdom tooth, jaw and ear two days in. The very tooth that was infected and had to be removed the same week i got the precipitating virus all those years ago. (3.5 years)

Now my little lyme brain is suspecting that a part of my onset may have been from anaerobic bacteria in in the tooth cavitation.

Connie Strasheim's book, Beyond lyme disease suggests just such a thing with some folk with lyme.
The plot thickens.

Anyway, whatever the pain was from, it has gone. Today i felt relatively strong and mowed my front lawn with no problems. Time will tell.