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Very Sick on Antibiotics/Unsure What to Do

Messages
26
I started a Lyme protocol on November and am on azithromycin, amoxicillin, malarone and hydroquinone. As I add more to the regimen I seem to be getting sicker and sicker, crashing one or more times a week and barely able to take care of my basic needs.

Is this something I need to go through to get better, or a sign that I'm just making things worse? I feel like I don't have enough information to proceed.

Diagnosis was made based off symptoms and I have clearer results indicative of mold illness (urine mycotoxin panel).
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I started a Lyme protocol on November and am on azithromycin, amoxicillin, malarone and hydroquinone. As I add more to the regimen I seem to be getting sicker and sicker, crashing one or more times a week and barely able to take care of my basic needs.

Diagnosis was made based off symptoms

I started taking a very low dose of Biaxin (antibiotic) 62.5 mg a day a few weeks ago. I don't have lyme. After 3-4 days, I felt miserable. Antibiotics kill off a lot of bacteria in the gut, both good and bad, which allows lipopolysaccharides from gram negative bacteria to get into the bloodstream and cause an immune system reaction.

This immune system reaction can cause a minor flaring of symptoms to a devastating flaring of symptoms. I'm quite sure this is what was happening to me. Given that your treatment was based on symptoms, I would be very weary of the lyme diagnosis and treatment.

Researchers have established that people with CFS already have significant dysbiosis and increased intestinal permeability (leaky gut). Personally, I wouldn't treat a possible lyme infection. I would need have a definite diagnosis first.
 
Messages
26
I started taking a very low dose of Biaxin (antibiotic) 62.5 mg a day a few weeks ago. I don't have lyme. After 3-4 days, I felt miserable. Antibiotics kill off a lot of bacteria in the gut, both good and bad, which allows lipopolysaccharides from gram negative bacteria to get into the bloodstream and cause an immune system reaction.

This immune system reaction can cause a minor flaring of symptoms to a devastating flaring of symptoms. I'm quite sure this is what was happening to me. Given that your treatment was based on symptoms, I would be very weary of the lyme diagnosis and treatment.

Researchers have established that people with CFS already have significant dysbiosis and increased intestinal permeability (leaky gut). Personally, I wouldn't treat a possible lyme infection. I would need have a definite diagnosis first.

But a definite diagnosis isn't really possible, right?
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
But a definite diagnosis isn't really possible, right?

No there isn't a definite diagnosis yet. I have read in a recent post here that some level of the bacteria that causes lyme can live in people and not cause symptoms. If that's true, even a definite positive test wouldn't mean that lyme was the cause of symptoms.

I personally don't think most diagnosed cases of chronic lyme are lyme. There are many thousands of lyme disease diagnosis made every year in the U.S. There must be many other thousands of people that get lyme but are not treated.

If they were to all go on and develop chronic lyme because they weren't treated. We would have thousands of new cases of chronic lyme every year. I think the immune system clears lyme even without antibiotics. If it doesn't than the problem is with the immune system, not the lyme, in my humble opinoin.:)
 
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pattismith

Senior Member
Messages
3,941
Hi @rijichouno

I don't have lyme,
but I underwent a protocol with antibiotics. (azithro, doxy)

it made me miserable, but it relieved some of my spinal symptoms (hypnic jerks, spine pains), so I sticked to it during 4 months. I was so bad under the treatment that I couldn't take longer, even though I had great benefits from it at the same time.

The side effects I got from it were very serious, (extreme exhaustion and muscle weakness, cramps, etc), and they were still running after I stopped it.

it took me about two years to find drugs that bring me relief from the side effects, but I don't have any regret, as they gave me definitive relief from the spinal symptoms.

These antibiotics have several effects outside killing bacteria, they have some action on some purine receptors, but also impair neuro-muscular junction.

I think if you notice any improvement in any of your symptoms, it is worth taking the chance
 

LINE

Senior Member
Messages
841
Location
USA
This is a tough issue as others have commented. I came down with a pretty serious pathogen that mimicked Lyme and if you look hard enough, you will see that most symptoms overlap. Diagnosis of pathogens is a weak link in medicine, so you find many people guessing at what you have. This can be both a good thing and a bad thing, good that they might be right and bad that it might put you on a wrong path.

Different pathogens can require different approaches (in prescriptive medicine), for instance viruses, bacteria (many classifications of bacteria), protozoa parasites, fungal/mold, and the odd ones such as mycoplasma, l-form bacteria etc. I chose natural antibiotics that cross-kill (that is kill wide varieties of organisms), this would include caprylic acid, neem, black seed etc. I have a more extensive protocol that includes biofilm environments and resistance factors. Let me know if you want more information.
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
@rijichouno I cannot judge at your situation. If you have been diagnosted with an acute Lyme infection I don´t want to say anything.
If you are fighting againt a Chronic Lyme infection, there should be a trick I think, and it wouldn´t be needed to take loads of antibiotics for a long time with uncertain and perhaps (very) questionable success. 2013 an article has been published that found tremendous amounts of manganese in borrelia. There are two other articles, one from 2001 about a lack of iron, and one about manganese and zinc.
With tremendous amounts of manganese, which is completly, you could fight against a chronic Lyme infection by avoiding high manganese foods. Of note would be that iron uptake might be facilitated.
Also of note shold be that taking an antibiotic for Lyme rather would require manganese, because without such important stuff for them (not for other organisms) they would not divide and no antibiotic would enter the bacteria.