Buying antibiotics for Lyme online

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How did u get tested for it? Aren’t there no tests for it?
hi, if you mean "how did I get tested for Lyme disease"
I think it best to start by stating what the research shows regarding testing.
This is a deep subject in itself - but there are some fundamentals that I believe are now established beyond useful debate namely that:
there are many tests that can detect Lyme disease.​
however, none are 100% sensitive (or even above around 80% sensitivity in the real world)​
many factors impact on the ability of the test to detect the disease in infected patients​
there are many strains and species of Lyme causing borrelia - and not all produce the antigens that the tests look for evidence of (mosts tests were developed using lab strains like B31 or only some species)​
the organism also adjusts which proteins it presents on its outer surface over time to fool the immune system -​
and people's immune systems are also different - meaning that its a bit of a crapshoot as to whether any one patient is producing the antibodies the tests look for at any given point in time.​
it has also been demonstrated that around 20% of patients never produce recognisable antibodies at all​
the basic tests offered by most primary care physicians are demonstrated to be somewhere around 50% sensitivity (+/-20% depending on which study you read)​
as a result, diagnosis is supposed to be achieved by clinical symptom picture according to all international guidelines I have read.​
however, in practice, primary care physicians will very very rarely do this without a black and white test result(which, per above, does not exist) - or more recently - a stereotypical bulls-eye rash​
there are more specialist tests, although none of these are really fully proven to be much better in terms of sensitivity (and insurance companies and state health systems seldom recognise these).​
this is therefore clearly a complex disease which is challenging to diagnose.​
however, a panel of tests including a range of different tests using different technologies together with the history and symptom picture can be used to give high % confidence of diagnosis.​
I was tested by Armin labs in Germany, and tested positive for Mycoplasma as well as Lyme disease, and also had a very low cell count of a specific white blood cell count "CD57+ cell count" (very low, or occasionally CD57+ counts, are often found in chronic Lyme disease).
Together with the history of how my partner and I became ill, the symptom picture we both developed, including many supporting test results for biomarkers etc were also consistent with Lyme disease - this gave me sufficient confidence to move forward in this direction.
For anyone reading this, however, it is important to state that there is no black and white diagnosis in such complex diseases, unless perhaps you happen to be in the few who light up all the tests positive, for the majority it is likely to be a careful consideration of all the possible differential diagnoses, reasoning your way through based on evidence, and all the while guarding as best you can from confirmation bias.
 
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Rlman

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hi, so far I have been taking only doxycycline 100mg 2x a day - for around 13weeks. I have some significant improvement, especially in energy, which was my most profound symptom, and had been debilitating for around 5 years - so the most significant change since getting ill.
That's great to hear @Garz .
How soon did you start feeling better after starting doxy?
What was your activity level pre abx?
Do you have any side effects from doxy?
Thanks
 
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That's great to hear @Garz .
How soon did you start feeling better after starting doxy?
What was your activity level pre abx?
Do you have any side effects from doxy?
Thanks
I started to notice improvements in mental and physical energy after around 1 month but this was initially only in what had been the best part of the day for me, from after lunch to before dinner. Other people noticed I had more energy, made more conversation etc before I did. however the mornings and evenings were worse initially for about the 1st 6 weeks or so - groggy, more slowed down and aching than had been the norm previously. Later the mornings and evening also started to gradually improve.

It's hard to quantify chronic illness, but prior to ABX my energy levels and generally sore head and ill feelings had limited my life to the point where I could look after myself and do most basic tasks, like shopping, cooking etc - but would often have to sit down and rest between even small jobs. Every task, even small ones took lots of effort and will power and then would often take a physical toll on me. It's my nature to try to push through challenges and obstacles with effort and determination, which had worked well for me most of my life - but with this illness that absolutely did not work and would rapidly make me sicker until I had to lay in a dark room till it passed - which could take days. so I had to be very measured.
Now I am automatically finding myself starting tasks earlier in teh day and often doing several tasks in a row, rather than resting in between and doing light duties after dinner - which has not happened in a very long time.

it's a significant step, and I'm sure anyone who has suffered any chronic life-limiting illness like this will appreciate every little step forward is to be celebrated, but I want to be balanced in my report here as I am far from cured at this stage and still have a very limited lifestyle. so I am continuing on this path for at least another 3 months.

I also do not want anyone to think that antibiotics are a miracle cure for this illness. I have in fact been making very small and gradual improvements for around 9 months now - very very small ones at first. In order to achieve this I have had to completely overhaul my diet, lifestyle, sleep, attitudes, stress management, supplements and followed a pretty comprehensive herbal protocol based on Buhner etc - mainly focussed on anti-inflammatory and antioxidant herbs and liver function and detoxification. I am pretty sure antibiotics have helped but I am equally sure that without optimizing my underlying lifestyle as a foundation, they would be pretty much ineffective.

The paradigm that I believe fits the situation best is the one proposed by Dr Richard I. Horowitz in his "MSIDS" theory. Here he likens 16 areas/causes of systemic inflammation in the body, that need to be addressed to resolve chronic illness, to a person with 16 nails in their foot. Removing one or two nails does little to ease their suffering - not until all of the nails are removed do the symptoms resolve.
 
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I was once able to buy doxycycline online, so I tried it for 6 months taking a high does. I felt mildly worse while taking it then went back to normal illness level after giving up.
 

Pyrrhus

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helios

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"Mildly worse" is generally to be expected with doxycycline, as doxycycline mildly impairs mitochondria:
https://www.ahajournals.org/doi/10.1161/atvb.39.suppl_1.656

Hope this helps.
I actually felt a lot worse when I took Doxy (2 tabs a day) + Plaquenil + another ABx I cant remember just now.
I had to stop them at the 3mth mark I just felt too rotten, and it was then that I started to feel good, then really good. I was also doing biofilm busters, herbs, and a limited clean diet to suit plus anti-fungals. I did a comprehensive approach. Since I had been unwell so long I decided to do more cycles of ABx, alas it didn't work so well the next times, however in the subsequent cycles I wasnt as gung ho in doing all the other support treatments + I forgot to take Diflucan + with my good health I hit the gym and over did it in hindsight : (

I have had some great health spells with ABx but they only last a few months and then I tend to do worse than before, and I think a big factor in that was I typically never got an anti-fungal to follow up with. Taking probitoics is not good enough imo.
 

Judee

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Anyone that is on abx or has tried them, did you get a fever when you were on them?

Every time I cycle one, I start to run fevers.

Just wanted to know if that's a sign that something is working.

Edit: I would be interested in anyone posting if they noticed they got fevers with any herbals as well and what the herbal was, if you remember.

Edit #2: I probably should clarify that fever for me isn't what the medical establishment considers a fever. However my temp has been going higher than my normal very low temps and feels the same, so I loosely count it as such. I feel lousy when I have them but right now I am very encouraged they they are occurring. I think it means I am giving my immunity fire power that it didn't have before.
 
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Judee

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here was also a study on a drug called desloratadine ( actually an already FDA approved antihistamine ) that had been shown to be bactericidal to lyme spirochetes in high concentrations killing them outright.
Now, lots of things do that, but what was of more interest was that even in lower concentrations it seemed to interfere with the organisms ability to form viable cyst forms
Do you or anyone else know if Loratadine works the same or similarly to desloratadine for lyme spirochete?

hi, so far I have been taking only doxycycline 100mg 2x a day - for around 13weeks. I have some significant improvement, especially in energy, which was my most profound symptom, and had been debilitating for around 5 years - so the most significant change since getting ill.
Can you give an update on how you are doing with your situation? Did you continue to experience improvements?
 
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Do you or anyone else know if Loratadine works the same or similarly to desloratadine for lyme spirochete?

it does - acc to the same study - just with a less potent effect/requires much higher concentrations.
In general, it is very hard to get even near the blood concentrations of either used in the lab trials - and so the more potent desloratadine is favored


Can you give an update on how you are doing with your situation? Did you continue to experience improvements?
definitely doing better thank you - the improvements I achieved during ABX therapy have remained and i have in fact built on them significantly in the subsequent months.

the ABX were: doxy with desloratadine then added azithromycin and then rifampicin ( i chose those because they are all active against Lyme and Bartonella which fit the symptoms picture best )

Unfortunately, I had to stop around 4 months after adding the rifampicin as my liver enzymes were starting to go up - a problem i have had on and off for some time - due I am sure to the underlying condition ( around 70% of Lyme patients have liver issues according to the most respected Lyme literate Doctor - Richard Horowitz )

i don't think this was long enough to deal with such difficult and long-standing infections - ( both Lyme and bart form persister cells which are almost totally resistant to all commonly used antibiotics, they also form biofilms that protect them further from ABX - the result is extremely difficult to treat infection )

i have continued with all of the diet and lifestyle-related interventions and in particular the herbal protocol following Buhner's latest book on Lyme - Healing Lyme 2nd Edition - and stepped this up a couple of notches when i could no longer tolerate the ABX - I am continuing to improve.
i can walk faster and for longer
i have been able to run short distances and even sprint for about 100yards occasionally ( this used to feel like sandbags were strapped to all my limbs - but i have some power back in my limbs
i am able to exercise 3x a week now
people who know me say i am noticeably more lucid in my thoughts and conversation and my humor is returning
i can drive around 1.5hrs now before getting adverse symptoms - headache, light sensitivity etc
i can typically do 10-12 small tasks or chores each day now - as well as making all my meals from scratch and the basics of existence etc - (a way of measuring progress objectively to guard against confirmation bias)

i am not out of the woods yet and progress is slow and steady - but i do feel like i at least know what i am dealing with and have a good idea of what works and what I need to do to get my life back - which is HUGE!
 

ChookityPop

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I
I have had some great health spells with ABx but they only last a few months and then I tend to do worse than before, and I think a big factor in that was I typically never got an anti-fungal to follow up with. Taking probitoics is not good enough imo.
Do you have any tips on anti fungals?
 

ChookityPop

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the ABX were: doxy with desloratadine then added azithromycin and then rifampicin ( i chose those because they are all active against Lyme and Bartonella which fit the symptoms picture best )

!
How much did you take of each of these per day if I may ask?

Very encouraging read btw, congrats on the progress!
 
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hi,
i did a lot of research on what many of the best known and well-respected Lyme doctors were using ( people like Richard Horowitz MD, Joseph Burrascano MD, Marty Ross MD, and others and drew up a large list of possible antibiotics)
then i looked into each one for its effectiveness in more detail but in particular, is adverse reactions, i ruled some out as the side effects could be life-changing and permanent, and came up with those three as about the best best for me.
the doses were pretty standard
doxy - 100mg 2x a day ( some LLMD's use 2x 200mg per day)
Azithromycin - 250mg 2x a day ( some go higher) Clarithromycin may be a better choice for Lyme/Bart
Rifampicin - 2 x 300mg a day ( some LLMD's use 600mg 2x per day )
 
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Do you have any tips on anti fungals?
i haven't used antifungals
thus far i haven't considered it a problem for me - especially as i follow a ketogenic diet with very very low total carbohydrate - around 20g a day ( this has had as big an effect on my health as the antibiotics - possibly even greater )

that said - there is some new research showing some azole anti-fungal drugs have good activity in killing Bartonella persister cells ( something that most conventional bartonella drugs have been shown to be quite poor at doing)

so if i continue to have issues that do not resolve i may at some point in the future try an antifungal regime including an azole antifungal like itraconazole as a multipurpose approach - but would probably test first via an organic acid test to see if i actually have excess metabolites of fungal species in my body before putting more chemicals in the mix.

in lyme patients - antifungal regimes are often based on Nystatin and an azole drug in combination.
the supplier i used for abx also carries several azole antifungals - but for some reason not nystatin.

if anyone finds a reliable source online please post up below:

ps if you are suffering from Lyme disease or suspect that you may be you may wish to join the community on healingwell. com - its about the best lyme support forum i have found and they will support you with questions from diagnosis, treatment or finding a LLMD near you.
 
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Anyone that is on abx or has tried them, did you get a fever when you were on them?

Every time I cycle one, I start to run fevers.

Just wanted to know if that's a sign that something is working.

Edit: I would be interested in anyone posting if they noticed they got fevers with any herbals as well and what the herbal was, if you remember.

Edit #2: I probably should clarify that fever for me isn't what the medical establishment considers a fever. However my temp has been going higher than my normal very low temps and feels the same, so I loosely count it as such. I feel lousy when I have them but right now I am very encouraged they they are occurring. I think it means I am giving my immunity fire power that it didn't have before.
mild fevers are common in people with chronic infections when on antibiotics.
at least many people on Lyme forums will recount this happening to them (many of them with a confirmed lyme diagnosis - some of them clinical diagnosis based on symptoms alone).

there is a phenomenon called a herxiemer reaction - named after the guy who first described it.
in most medical texts this is defined as a period of a few days immediately after abx are given where the symptoms get worse. it can be quite severe and often includes fever.

however, in Lyme disease, this reaction can be much longer-lasting up to several weeks
it is not well understood - but often includes fever also.
in Lyme patients the whole body is changed - inflammation is systemic and the gut is also dysregulated so either of these changes could be involved

any strong antimicrobial herbs cause me to have this reaction. for example
sida acuta
berberine containing plants
houttuynia
if the reaction is strong it may include fever and chills and generally feeling v ill indeed.
the reaction can be so strong as t actually be dangerous - has resulted in people in ER etc
 

Learner1

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@Garz Just curious... do you have an oxalate issue after so much doxycycline and azithromycin, both known to kill off oxalate degrading bacteria in the microbiome? There isn't a good probiotic to replenish them and oxaluria can be a very difficult issue. (I ended up with it after the same 2 antibiotics were given to me in IV form for 4 months.)
 

ChookityPop

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@Garz Just curious... do you have an oxalate issue after so much doxycycline and azithromycin, both known to kill off oxalate degrading bacteria in the microbiome? There isn't a good probiotic to replenish them and oxaluria can be a very difficult issue. (I ended up with it after the same 2 antibiotics were given to me in IV form for 4 months.)
How would you describe the oxalate issues?
 

helios

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Do you have any tips on anti fungals?
Sorry CP, but not really, just that I would take an antifungal now after any longer term course of ABx. I feel the only time I did that (took Diflucan) I came through feeling good. All other times I ended up slumping badly for many months after I stopped taking the antibiotics.
I took tetracyclene ABx in my teens and I am convinced that stated me on my long term health issues. I ended up being prescribed Nizoral I beleive by an immunologist to treat candida as a consequence of the ABx but that was 3 yrs too late. Another time I took Nizoral as a follow up to an anti parasite treatment and had awesome health for 5 weeks which wore off after I stopped taking them. I pestered my doc to try it again a couple of months later but this time nothing. I think there is the risk of the fungal infections become resistant to the drugs.

If you do the anti-fungal route I would also take things like garlic and other herbal anti-fungals to boost your prospects. I dont know if there is any merit in cycling them.
 

ChookityPop

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Sorry CP, but not really, just that I would take an antifungal now after any longer term course of ABx. I feel the only time I did that (took Diflucan) I came through feeling good. All other times I ended up slumping badly for many months after I stopped taking the antibiotics.
I took tetracyclene ABx in my teens and I am convinced that stated me on my long term health issues. I ended up being prescribed Nizoral I beleive by an immunologist to treat candida as a consequence of the ABx but that was 3 yrs too late. Another time I took Nizoral as a follow up to an anti parasite treatment and had awesome health for 5 weeks which wore off after I stopped taking them. I pestered my doc to try it again a couple of months later but this time nothing. I think there is the risk of the fungal infections become resistant to the drugs.

If you do the anti-fungal route I would also take things like garlic and other herbal anti-fungals to boost your prospects. I dont know if there is any merit in cycling them.
Are you thinking of trying more abx with a anti fungal protocol after since you had positive effects?
I didnt know that it is important to take antifungals etc after a course of abx. I will remember that. Thank you!
 
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Did you find the abx worked better for your disease than these did?
hard to define - broadly equivalent i would say

improvements in both cases were slow and only arrived after a period of adverse symptoms
the severity and duration of the adverse symptoms was variable
some of the herbs gave stronger herx like reactions that lasted longer - but this may simply be related to dose
antibiotics tend to be prescribed in standardized dosages - eg 300mg 2x a day
whereas herbs tend to be built up over time - esp is you have adverse reactions at first - had learned this the hard way.
i am now on a slow and long protocol - having learned that short sharp protocols lasting only a few weeks made me so ill i could not function or sustain them long enough to do any real good.

in fact the whole paradigm i started with - ie - "i just need to find out what it is and hit it hard with herbs or abx" has turned out to be false.
i am now working with my body over the long term to, reduce inflammation, modulate the immune system ( per Buhners books ) and support it in every possible way i can think of ( diet, sleep, exercise, stress management etc as per a functional medicine approach) - rather than focussing on any strong antimicrobial or killing regime - as i have learned that this simply wishful thinking and will not work in my case.

i am fairly tough - but i doubt anyone could tolerate the extreme symptoms i was getting for months on end on the killing regime.
this way is long - but it works - and is tolerable