Would you try a Lyme disease treatment ?

[Dechi]

i know there is a lot of controversy over chronic Lyme treatment, but let’s do this with respect. I am not saying chronic lyme is a real thing. I am not saying it’s not. I’m neutral.

I have seen a new doctor recently, thinking he would treat me for ME/CFS with a new approach. Instead, he went the Lyme route. Since ME and Lyme symptoms are often very similar, if not identical, I can understand why he thought of it. I also had a child who was bitten by a tick 20 years ago. The tick wasn’t a carrier, but I could have been bitten by one who was since I was present when it happened. Apparently 50% of people who are infected never had the rash or even saw a tick.

Anyhow, this doctor wants to treat me using the antibiotic course. Three antibiotics on top of the other, for a period of 1-2 months to start with. And go from there. The doctor will be available if I have questions or apprehensions (not making money out of it).

This doctor is not doing this for money. His services are paid by medicare, whether he treats me or not. He is very in demand and doesn’t need one more patient. In fact he needs less. The only benefit he might have, and I’m not even sure, is that he might be conducting a study.

Here is my reasoning : even if there is only 2-3% chance that this would cure me, am I willing to miss that chance ? Will I regret it down the line if I don’t at least try ? I have been declining for the past two years. At the rate it’s going, I’m not sure I’ll be able to take care of myself in a few years. I live alone. That would be a nightmare, I don’t know what I would do.

On the other hand, I am hypersensitive to meds and I can react very strongly to them. I also have irritable bowel syndrome, and have occasional « gastric episodes » that leave me in severe pain lasting 12 to 24 hours.

I am asking you, not to create disruption or controversy, but because I respect the opinion of the majority of the people on this forum. And this is a very big decision, with great potential side effects but hopefully, improvement.

Thank you.

 

[pattismith]

I would say that if you have any suspicion of spine problem, azythromycin (usually part of the lyme protocol) is interesting to try for its spinal anti-inflammatory ability.
One study found it efficient at 500 mg/day against Ankylosis Spondylitis (inflammatory spine disease).
This is the dosage that is doing well for me.

The strongest side effect I got from Doxy+azythro was muscle weakness, which I reverted steadily when I started testosterone.

 

[Dechi]

I would say that if you have any suspicion of spine problem, azythromycin (usually part of the lyme protocol) is interesting to try for its spinal anti-inflammatory ability.
One study found it efficient at 500 mg/day against Ankylosis Spondylitis (inflammatory spine disease).
This is the dosage that is doing well for me.

The strongest side effect I got from Doxy+azythro was muscle weakness, which I reverted steadily when I started testosterone.

Fortunately I don’t have any spine problems, other than postural discomfort/pain. I don’t think I will be taking any testosterone soon, lol !

 

[Rebeccare]

I think the most important question is: what are the risks of this treatment, especially given your illness? Is that something your doctor has discussed in depth with you?

Once you have a really good grasp of those risks, then you can think about whether any potential benefits outweigh those risks. If, in the end, you think that it's worth trying, especially given that you're health is declining, go for it! But if you think that the potential for harmful side effects is not worth an uncertain chance of improvement, that's ok too. What's important is that you make the decision that feels right for you.

I'm curious if there are people here who have had long-term antibiotic treatment, either for lyme or other reasons, and what their experiences have been.

I'm glad that you've found a doctor who takes your health seriously and is willing to think outside of the box to help you.

 

[Dechi]

I think the most important question is: what are the risks of this treatment, especially given your illness? Is that something your doctor has discussed in depth with you?

He said that one of his patients caught C difficile, but he thinks she caught it from close family. I have heard other people say the treatment is really hard, and at least one person told me she went from moderate to severe after doing the treatment. She was being treated by KDM I think.

 

[uglevod]

The strongest side effect I got from Doxy+azythro was muscle weakness

Probably a herx reaction - doxy with azithro as a combination is much more potent. Treatment of lyme often includes Bactrim on top of doxy/mino+azithro.

 

[Dechi]

Treatment of lyme often includes Bactrim on top of doxy/mino+azithro.

I believe my treatment would be septra, cefuroxime and rifampin, twice a day.

 

[pattismith]

@Dechi
Rifampicin targets small intestine bacteria overgrowth, it maybe an oportunity if you have this condition?

Probably a herx reaction - doxy with azithro as a combination is much more potent. Treatment of lyme often includes Bactrim on top of doxy/mino+azithro.

I don't buy the Herx reaction, as the weakness didn't stopped after the end of the antibiotic regimen.

 

[uglevod]

I don't buy the Herx reaction, as the weakness didn't stopped after the end of the antibiotic regimen.

abx could kick start immune system - i have muscle weakness which wax and wane with other symptoms

 

[ljimbo423]

Anyhow, this doctor wants to treat me using the antibiotic course. Three antibiotics on top of the other, for a period of 1-2 months to start with. And go from there.

I can only share my experience and what I have learned in the last 12 years of researching CFS and trying many different protocols.

I am absolutely convinced that my CFS was caused primarily from 35-40 courses of antibiotics, taken over many years, a very bad diet, excess drinking and a lot of stress. All of which cause dysbiosis and a possible leaky gut. This lead to a slow decline into CFS.

I was treating my gut,half-heartedly, on and off for about 10 years, which gave me some minimal improvement. In the last 2 years, I've been treating my gut more and more aggressively. Taking the equivalent to 12-14 grams a day of antibacterial herbs, prebiotics, probiotics and a low carb diet, daily.

After 28 years of being disabled with CFS (that's when I got really aggressive and consistent with my gut protocol, 2 years ago). I am now in my 30th year of having CFS and have gone from being severe and mostly bedbound for several years, to mild, by treating my gut and I continue to improve!

Would you try a Lyme disease treatment ?

I personally would not try a Lyme disease treatment for chronic lyme. I think that chronic lyme is caused by an increased level of Lipopolysaccharides(LPS) from the gut, getting into the bloodstream, causing an immune system reaction and symptoms of CFS.

This is what CFS researcher Chris Armstrong believes is causing CFS and I agree. I think what is considered "chronic lyme" is actually often caused by the antibiotics given to treat it (which are often given for months at a time) causing severe dysbiosis.

The antibiotics cause or worsen an already existing dysbiosis, which leads to increased LPS getting into the bloodstream from the gut, causing an upregulated immune response and causing CFS.

Whatever you decide to do, I wish you the very best!!

 

[Dechi]

After 28 years of being disabled with CFS (that's when I got really aggressive and consistent with my gut protocol, 2 years ago). I am now in my 30th year of having CFS and have gone from being severe and mostly bedbound for several years, to mild, by treating my gut and I continue to improve!

Wow, very impressive ! Would you mind sharing how you treat your gut ?

 

[ljimbo423]

Wow, very impressive ! Would you mind sharing how you treat your gut ?

I would love to.

I started by slowing reducing starchy carbs, which are the worst offenders in dysbiosis. Then as I was able, slowly added in probiotics, some antibacterial herbs, then prebiotics. This has all been a slow process, that I have built on, over the last 2 years and 4 months.

Although the time and effort I have put in, in the last 2 years, has brought me from moderate CFS, to mild CFS!

The other thing I've learned is that treating mitochondrial dysfunction and low grade inflammation in the brain(as found by Jarred Younger), greatly minimizes my side effects from this protocol.

Many people make the mistake of giving up on treating the gut because the antibacterial herbs that are needed to kill off the bad bacteria, usually cause a worsening of symptoms.

Which makes sense, if Chris Armstrong is right (and I think he is ) and LPS are causing CFS.

Because when you kill off the bad bacteria, the LPS which are in their outer cell membranes, increase the level of LPS in the bloodstream, which causes a worsening of symptoms. Because it causes an increased immune response.

 

[uglevod]

I believe that a [leaky] gut is a constant source of systemic bacteria reinfection creating an endless loop of chronic inflammation(immune response). Maybe there is a reason why some people are running so good on a carnivore diet - by reducing bacteria favorite source of food(starch and fiber) to zero they finally break the circle.

 

[Dechi]

started by slowing reducing starchy carbs, which are the worst offenders in dysbiosis. Then as I was able, slowly added in probiotics, some antibacterial herbs, then prebiotics. This has all been a slow process, that I have built on, over the last 2 years and 4 months.

Thank you, is there a specific protocol you followed, specific brands you found more useful ?

 

[ljimbo423]

Thank you, is there a specific protocol you followed, specific brands you found more useful ?

Your welcome.

No specific protocol. I just started with lowering carbs because I knew that gave me the least amount of "die-off" symptoms from LPS getting into my bloodstream.

I had been taking probiotics fairly regularly, so I just slowly increased my dosage of them. Then added in the antibacterial herbs, knowing that I would get significant side effects from them.

Knowing what I know now, I would have started taking supplements to support my mitochondria and lower brain inflammation, before starting my gut protocol.

What works for one person isn't always best for the next. What is helping me the most with my mito. and brain inflammation(BI) is, high dose fish oil-(epa/dha) for BI. High dose BCAA's, coq10, B-1 and alpha lipoic acid for improving mitochondrial function.

These things make it MUCH easier to tolerate the side effects of increasing the level of LPS in the bloodstream, from killing off the bacteria in the gut.

So, if I might, my suggestion would be to start with these things first, to improve your mito. function. Then move on to treating the gut.

As far as brands go, I haven't noticed any one brand being better than another. Having said all that, if you do this, you will find what works best for you along the way.

Also, feel free to PM me if you feel a little lost, overwhelmed or just have questions. I know I did, quite often but I just wasn't willing to give up!

 

[Tammy]

I personally would NOT do a Lyme treatment protocol with anti-biotics

 

[Dechi]

I personally would NOT do a Lyme treatment protocol with anti-biotics

Thank you for your opinion. Can you explain why ?

 

[Tammy]

Thank you for your opinion. Can you explain why ?

I honestly don't believe in Lymes diagnosis. However, I think a tick bite can trigger an underlying pathogen/virus that was already there. Also..............I have read about too many people's experiences with long term antibiotics for Lymes...........that only made them worse.

 

[Shoshana]

Hi, @Dechi
I would personally , for myself, fear more, the risks of significant negative effects from doing such long-term doses of the various antibiotics involved, so I personally wouldn't do it.

Especially considering that they do not seem to have a definitive way to assess if we did or did not have lyme.

Nor do they have any way to guess which patients are more or less likely to have any positive results from this treatment, which has a big impact on functioning and on health, whatever amount of health we have left.

Nor do they have a way to assess or to guess, which of us, is more likely to have terrible worsening effects from it.
And I know many people have suffered terribly, during years of that treatment, as well.

I am personally not comfortable with that choice for myself.
However, i fully support each person choosing which treatments to try for themselves!
Including this one!

It is very difficult for any of us to be in this position, where i am as well, a very severe case, and worsening, and wanting to try something else,
yet, i still do not want to do something i am not comfortable with, so i don't take a treatment, like that one, from either my desperation, or from my hopes, unless i truly feel there is both, very good reason for hope, that the specific treatment might help me, and strong reasons for me to think it is not harmful and not going to cost me even more of my minimal health.

I believe it is a very personal decision. Because we do not have enough facts, on which to base a more informed, educated, dependable one.
Just sharing my own thoughts.... which you asked for, i think, Dechi.



P.S.........How would c-diff or some other possible serious infection be treated, if that resulted from those treatments? And are you comfortable with those as well? That would enter into my decision, if i were you making one, presently. (I did not personally tolerate the preferred med for those, the time yrs ago, I was given it)

 

[Shoshana]

I am looking forward to reading all of the posts on this thread, at a different time when I am able to.