Beaver gets Lymed. (Trimethoprim, Plaquenil?)

[beaverfury]

For God's sake! Just got this back from Infectolabs.

Doctor wants to start me on three months of Trimethoprim and Plaquenil.




Borrelia burgdorferi antibodies (immunoblot)
Borrelia-Blot-IgG-antibodies + positive Bands: OspC +,p41 +, p83 +
Borrelia-Blot-IgM-antibodies negative
The specific Borrelia burgdorferi-IgG-antibodies are an indication for a humoral
immune response against Borrelia burgdorferi.

Borrelia burgdorferi Elispot LTT
Borrelia burgd. Fully Antigen + 6 SI < 2
Borrelia OSP-Mix + 4 SI < 2
Borrelia LFA-1 + 7 SI < 2
The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for an
actual cellular activity against Borrelia burgdorferi.


Results = 2 SI (borderline) or > 2 SI (positive) mean a specific response of the Tlymphocytes
regarding the different antigens in the Elispot-LTT. The higher the result of
the SI, the stronger is the T-cellular immune-response in general.


Also positive for Erlichia and chlamydia pnuemoniae.
My DNA PCR test came back negative.

I wasn't very interested in having Lyme.
Authorities insist Borrelia burgdorferi doesn't exist in my part of the world so i can only think that tick spit has other nasties in it.
I got bitten on the belly and the leg about two years before falling ill while working in timber plantations.

I was a fence sitter on the Chronic Lyme debate. I really don't like the sound of long term antibiotics, or their success rate. Nor does the CDC and NIH.
Now i'm starting to take the stance that as horrible as some of the pharmaceutical treatment sounds, the case studies and post mortems on lyme victims sounds worse!
It is one nasty bitch of a bacteria that seems to elude treatment very effectively.

Does the CDC's Post infectious lyme autoimmune explanation make more sense?
I don't know...but one could die waiting for definitive answers.

Should i believe the testing and the doctors verdict?.. Well, i don't know. But i have to make a choice, Yay or Nay very shortly.

Sidestepping all the controversy of testing and treatments, my question is... Has anyone else
taken Trimethoprim or Plaquenil long term?

What sort of side effects can i expect?

I am a bit confused as to whether other drugs will be added later. Neither Trimethoprim nor Plaquenil are antibiotics, so maybe they are preliminary treatment for Erlichia and suspected bartonella, babesia, and other antibiotic treatment comes later for Lyme. I will indeed ask before i subject myself to them.

 

[Ema]

I took Plaquenil for about a year with no problems. I did have a baseline eye exam though and a follow up at 6 months even though I stayed well below the "safe" threshold. I took it along with azithromycin because it is supposed to shift the cellular pH and make the Azith work better. It is supposed to have some anti-spirochete activity on its own as well as being anti-inflammatory.

I've only ever see the trimethoprim along with another sulfa antibiotic in a combo called Bactrim. I've never seen it used as a solo agent though it is supposed to be good for erlichia (at least when used along with another antibiotic there we fewer relapses seen than with the antibiotic alone).

Usual first line antibiotics include doxycycline/cefuroxime or other related antibiotics in those classes along with a macrolide antibiotic like azithromycin. Cyst busters like Flagyl or Tindamax are also common.

There are as many combinations of ABs being used though as doctors that prescribe them. Everyone seems to have their own twist on what is best. But I am a bit curious about why you would start on the two you mention rather than a more standard combo.

Ema

 

[vamah]

I was a fence sitter on the Chronic Lyme debate. I really don't like the sound of long term antibiotics, or their success rate. Nor does the CDC and NIH.
Now i'm starting to take the stance that as horrible as some of the pharmaceutical treatment sounds, the case studies and post mortems on lyme victims sounds worse!
It is one nasty bitch of a bacteria that seems to elude treatment very effectively.

My understanding, from a friend who has successfully treated lyme for many years, is that the reason why the success rate for long-term antibiotics doesn't look good is that these studies don't go long-term enough. They will say, for example, that 6 months of treatment is no more successful than 6 weeks. But they stop there. They don't go on to see if what you really need to get rid of lyme is a year of antibiotics. Or two years. Or 5. The advice I would give is to take the antibiotics and keep taking them for a long time.

 

[sianrecovery]

I totally understand why you were less than anxious to get a lyme diagnosis - on the other hand, it can provide a fruitful avenue to explore. There are alot of discussions on the lyme forums of things other than abx you can do, so dont feel that's all there is to it.
I am allergic to Trimethorprim, and didnt do great with plaquenil. I've always understood plaquenil as an anti-protozoan drug, rather than bacterial, but maybe I'm missing something. Fry uses it alot with doxy, but I also hear it is known for increasing cyst formation, which is not really what you want with those bacteria. I am not familar with those two drugs combined as suggested, so maybe its worth asking your doc his rationale, and also trying to get feedback from as many lyme patients as you can about what worked for them.
I have never tested for lyme - only protomyxzoa - but I will at some point. I think you are doing the right thing to pursue this. Maybe have a look at Garth Nicholson's stuff? And Jenna's Lyme blog? I am also going to try and upload the latest thing I had from Burrascano.

 

[aquariusgirl]

If you are low in BH4, trimethoprim can be a problem...something to do with interfering with DHPR or DHFR.

 

[Sushi]

sianrecovery

Thanks for the Burrascano PDF. I see the date on the title page is 2008. Do you know if the contents have been updated since then?

Sushi

 

[sianrecovery]

No, no idea, sorry - I would assume not. I thought it might be helpful for some basics. He has done a number of conferences since then, and produced- I think - a DVD, will post on the lyme forum I on and ask.
Might be worth checking the betterhealthguy website to see if Scott has posted more up to date conference notes as well.

 

[sianrecovery]

here's some old stuff from Nicholson. It wouldnt let me upload the conference file I had, said it was too big. Will try and compress it.

 

[sianrecovery]

it wont let me upload the other thing. Am happy to email it on if you send me your email address. Its nothing that exciting though.

 

[sianrecovery]

another paper

 

[anniekim]

Beaver, good luck with your treatment. I hope it helps.

I did some testing with infectolab recently and don't know what to make of my results (been ill for 14 years, currently bedridden). I had no igg antibodies to borrelia but did have igm ospc to borrelia garni and band 41 (which I know is not specific). My LTT elispot was negative.

I read in the burrascano literature that sianrecovery kindly attached above that you can have reactive igm's/repeatedly igms in late Lyme which then makes it impossible to differentiate between whether it is an early or late infection. Does anyone know if you have reactivating late igms as mentioned by Burrascno, would you then not have iggs? Are they mutually exclusive so to speak? Many thanks in advance.

As the LTT is negative and I only have two igm bands, my suspicion is that I don't have an active infection, but clueless really. Am wondering whether the igm is a false positive cross reacting with something else? Any thoughts most appreciated.

 

[heapsreal]

For God's sake! Just got this back from Infectolabs.

Doctor wants to start me on three months of Trimethoprim and Plaquenil.




Borrelia burgdorferi antibodies (immunoblot)
Borrelia-Blot-IgG-antibodies + positive Bands: OspC +,p41 +, p83 +
Borrelia-Blot-IgM-antibodies negative
The specific Borrelia burgdorferi-IgG-antibodies are an indication for a humoral
immune response against Borrelia burgdorferi.

Borrelia burgdorferi Elispot LTT
Borrelia burgd. Fully Antigen + 6 SI < 2
Borrelia OSP-Mix + 4 SI < 2
Borrelia LFA-1 + 7 SI < 2
The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for an
actual cellular activity against Borrelia burgdorferi.


Results = 2 SI (borderline) or > 2 SI (positive) mean a specific response of the Tlymphocytes
regarding the different antigens in the Elispot-LTT. The higher the result of
the SI, the stronger is the T-cellular immune-response in general.


Also positive for Erlichia and chlamydia pnuemoniae.
My DNA PCR test came back negative.

I wasn't very interested in having Lyme.
Authorities insist Borrelia burgdorferi doesn't exist in my part of the world so i can only think that tick spit has other nasties in it.
I got bitten on the belly and the leg about two years before falling ill while working in timber plantations.

I was a fence sitter on the Chronic Lyme debate. I really don't like the sound of long term antibiotics, or their success rate. Nor does the CDC and NIH.
Now i'm starting to take the stance that as horrible as some of the pharmaceutical treatment sounds, the case studies and post mortems on lyme victims sounds worse!
It is one nasty bitch of a bacteria that seems to elude treatment very effectively.

Does the CDC's Post infectious lyme autoimmune explanation make more sense?
I don't know...but one could die waiting for definitive answers.

Should i believe the testing and the doctors verdict?.. Well, i don't know. But i have to make a choice, Yay or Nay very shortly.

Sidestepping all the controversy of testing and treatments, my question is... Has anyone else
taken Trimethoprim or Plaquenil long term?

What sort of side effects can i expect?

I am a bit confused as to whether other drugs will be added later. Neither Trimethoprim nor Plaquenil are antibiotics, so maybe they are preliminary treatment for Erlichia and suspected bartonella, babesia, and other antibiotic treatment comes later for Lyme. I will indeed ask before i subject myself to them.

Can u tell us abit more about testing eg cost of getting blood sent overseas from australia etc.
Was it a drama getting it all sorted??

 

[Sushi]

Can u tell us abit more about testing eg cost of getting blood sent overseas from australia etc.
Was it a drama getting it all sorted??

From what I've heard, it might be cheaper to send your blood in its own sterile container (your body! than to courier it.

To send mine from Brussels to the lab in Germany cost 66 euros, so not cheap even from that distance.

Sushi

 

[heapsreal]

From what I've heard, it might be cheaper to send your blood in its own sterile container (your body! than to courier it.

To send mine from Brussels to the lab in Germany cost 66 euros, so not cheap even from that distance.

Sushi

Dont know how accurate a test would be for me as im on antibiotics most of the time for sinusitis. Might be cheaper just to treat it?

 

[Sushi]

Heaps, don't know how the abx would affect the testing. Probably someone else does. Maybe GcMAF.Aust? He has talked to the Infectolab people.

Sushi

 

[beaverfury]

I took Plaquenil for about a year with no problems. I did have a baseline eye exam though and a follow up at 6 months even though I stayed well below the "safe" threshold. I took it along with azithromycin because it is supposed to shift the cellular pH and make the Azith work better. It is supposed to have some anti-spirochete activity on its own as well as being anti-inflammatory.


There are as many combinations of ABs being used though as doctors that prescribe them. Everyone seems to have their own twist on what is best. But I am a bit curious about why you would start on the two you mention rather than a more standard combo.

Ema

Thanks, Ema

I have also been prescribed Roxithromycin and Ampicillin alongside the Plaquenil and Trimethoprim.

I think the rationale is to knock down Erlichia and suspected bartonella, babesia (tests not in yet).
Ampicillin for enterococcus overgrowth.

I am also confused why there is no conventional lyme antibiotics in there yet. I need to ask more questions.

Great to hear you had no problems with Plaquenil. I am anticipating it giving me nausea, depression and hair loss from other anecdotal reports.
I will get the eye exam soon.

 

[beaverfury]

My understanding, from a friend who has successfully treated lyme for many years, is that the reason why the success rate for long-term antibiotics doesn't look good is that these studies don't go long-term enough. They will say, for example, that 6 months of treatment is no more successful than 6 weeks. But they stop there. They don't go on to see if what you really need to get rid of lyme is a year of antibiotics. Or two years. Or 5. The advice I would give is to take the antibiotics and keep taking them for a long time.

Hi vamah

I am getting the sinking feeling that I may have to take antibiotics for a long time.

The reports of relapse after treatment tells me that Lyme is harder to kill than Jean Claude Van Damme!

 

[LHCTom]

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/

 

[beaverfury]

I totally understand why you were less than anxious to get a lyme diagnosis - on the other hand, it can provide a fruitful avenue to explore. There are alot of discussions on the lyme forums of things other than abx you can do, so dont feel that's all there is to it.
I am allergic to Trimethorprim, and didnt do great with plaquenil. I've always understood plaquenil as an anti-protozoan drug, rather than bacterial, but maybe I'm missing something. Fry uses it alot with doxy, but I also hear it is known for increasing cyst formation, which is not really what you want with those bacteria. .

Cheers Sian

Yea, if lyme proves to be the lynchpin of my illness then I may be very grateful for the diagnosis soon.
Not feeling it yet though Bit distressed and confused by the whole thing.
Maybe my fluctuations in symptoms over the years really can be put down to the course of the infection. Just don't know

My doctor talked about Plaquenil flushing ...stuff...out of the vacuoles of cells which helped the action of trimethoprim. Not sure what that ..stuff..is. (there was too much for my brain to take in).
He also said Plaquenil was anti-inflammatory.

Thanks for the Burascano, Nicholson links.

 

[beaverfury]

If you are low in BH4, trimethoprim can be a problem...something to do with interfering with DHPR or DHFR.

Yes, i'm not sure whether to keep taking methylfolate to counter that.

Though wiki says , 'Trimethoprim's affinity for bacterial dihydrofolate reductase is several thousand times greater than its affinity for human dihydrofolate reductase'.
Bacteria are unable to take up folic acid from the environment (i.e. the infection host) and are thus dependent on their own de novo synthesis. Inhibition of the enzyme starves the bacteria of nucleotides necessary for DNA replication causing, in certain circumstances, cell lethality due to thymineless death.'