Should I Start Full Lyme Treatment?

Messages
21
Likes
11
Hi everyone,

I've been in CFS and mold illness mode for years and recently saw a Lyme doc who treats based on symptoms. He believes I'm a typical Lyme case and wants to put me on a load of long-term antibiotics.

Can anyone offer their perspective on issues like safety, Herxing, and whether any of the specialized testing (LDA or PCR) is worth doing? I'd love some guidance on whether taking on a heavy long-term treatment protocol is appropriate and worth it.

Thanks!
 

Carl

Senior Member
Messages
218
Likes
198
Location
United Kingdom
I would not use antibiotics they destroy the digestive system and can and do fail to resolve lyme. It sounds like that lyme doctor just wants to take your money IMO. Have you had any tests to show any signs of lyme? Without that I would never even consider taking antibiotics because of the damage that they will do.

There are natural treatments for lyme which are worth looking at. Stephen H Buhner has a number of books about treating lyme and co-infections which might be worth looking at. I have a couple of his books which are fairly good even though I do not agree with all he says. Online some people have had success using liposomal essential oils.
 
Messages
24
Likes
42
The problem with Lyme tests is finding the things at all; if they are not in the blood, PCR etc is negative. Organ biopsy is unfortunately extremely difficult.

Have you already taken (much) antibiotics?
If not, it could really help. Because then there are probably no resistances and the antibiotic can kill some pathogens, not only Lyme disease but also others, a person with ME often accumulates a lot.

Do you have intestinal problems? If so, antibiotics could kill harmful bacteria here, then of course probiotics may be necessary!

Tinidazole worked wonders for me, unfortunately only for a short time because I could not convince a doctor to prescribe it for me in the long run.

Do you have problems with tendons or ligaments? This is what Lyme often shows itself to be.

Herxheimer is of course sometimes violent, depending on how bad it is reduce the dose or continue. If you don't react to the antibiotics at all, that would be a bad sign.

What antibiotics would he prescribe?
In my opinion at least two would be necessary.

The big question, of course, is why many Lyme sufferers never get rid of themselves.
Is Lyme just a co-infection of a larger infection that weakens the immune system? Yes, Lyme seems also weaken the immune system (CD57).

For example, ME can be diagnosed on the basis of a lack of NK cells, not all Lyme patients have these values and are therefore perhaps really only Lyme victims.

Translated with www.DeepL.com/Translator
 

ChrisD

Senior Member
Messages
367
Likes
751
Location
East Sussex
I've had ME for two years and CFS/Fibro before for one year before that. I suspected Lyme all along due to slightly different symptoms to others with ME, but still I had PEM/OI/POTS so classified as ME under NHS. Any way recently I tested with Armin labs and found Lyme and co infections - I believe it despite the noise around Armin labs.

I'm just now in the process of seeing a private doctor and potentially starting Oxygen therapy and Herbals for the infections. I didn't really want to use ABx as my gut is already very depleted.
 
Messages
21
Likes
11
I've had ME for two years and CFS/Fibro before for one year before that. I suspected Lyme all along due to slightly different symptoms to others with ME, but still I had PEM/OI/POTS so classified as ME under NHS. Any way recently I tested with Armin labs and found Lyme and co infections - I believe it despite the noise around Armin labs.

I'm just now in the process of seeing a private doctor and potentially starting Oxygen therapy and Herbals for the infections. I didn't really want to use ABx as my gut is already very depleted.
I actually have a hyperbaric oxygen machine and didn't know Lyme was anaerobic until today! Will work on using it more.
 
Messages
21
Likes
11
The problem with Lyme tests is finding the things at all; if they are not in the blood, PCR etc is negative. Organ biopsy is unfortunately extremely difficult.

Have you already taken (much) antibiotics?
If not, it could really help. Because then there are probably no resistances and the antibiotic can kill some pathogens, not only Lyme disease but also others, a person with ME often accumulates a lot.

Do you have intestinal problems? If so, antibiotics could kill harmful bacteria here, then of course probiotics may be necessary!

Tinidazole worked wonders for me, unfortunately only for a short time because I could not convince a doctor to prescribe it for me in the long run.

Do you have problems with tendons or ligaments? This is what Lyme often shows itself to be.

Herxheimer is of course sometimes violent, depending on how bad it is reduce the dose or continue. If you don't react to the antibiotics at all, that would be a bad sign.

What antibiotics would he prescribe?
In my opinion at least two would be necessary.

The big question, of course, is why many Lyme sufferers never get rid of themselves.
Is Lyme just a co-infection of a larger infection that weakens the immune system? Yes, Lyme seems also weaken the immune system (CD57).

For example, ME can be diagnosed on the basis of a lack of NK cells, not all Lyme patients have these values and are therefore perhaps really only Lyme victims.

Translated with www.DeepL.com/Translator
I'll be going on azithromycin, amoxicillin, and minocycline. Also malarone and plaquenil.
I did antibiotic treatment for MARCONs and a few months for mycoplasma pneumoniae. Otherwise I haven't done many antibiotics as an adult.
 

mrquasar

Senior Member
Messages
351
Likes
1,312
Location
Houston, TX USA
This is just anecdotal evidence, but I also have a friend who's convinced she has "late-stage Lyme." And yet after more than a year on antibiotics as well as other Lyme-directed treatments, she is no better. She also has frequent attacks of vomiting which may indeed be from all the antibiotic use.
 

Learner1

Administrator
Messages
3,372
Likes
5,836
Location
Pacific Northwest
My daughter was on 8 months of 2 antibiotics with Lyme which we thought was caught early, but still had it 2 years later and got appendicitis as her gut was so screwed up from the antibiotics. After talking with someone who had done 10 pass after trying everything else for years, it seemed the most effective way to go, and she's had a goof outcome with it.
 
Messages
15
Likes
13
First off, I'm not sure why people are jumping the gun to suggest 10-pass, when the OP is asking whether or not to start treatment, whether or not to spend money on specialty labs, and what kinds of safety issues would be worth consideration.

Also, to the OP: I would caution you against reading too much into any of the personal anecdotes posted here. This is primarily a CFS/ME forum, and it's going to have an inherent bias. I could list a number of Lyme-specific forums where if you posted your same thread, you would have hundreds of people shouting at you that you obviously have Lyme disease.

And yes, I'm biased too: I achieved remission in the past by treating Lyme, and I'm currently in treatment again due to a relapse. But I've also seen CFS docs, and explored much of that world as well. I've also done 10-pass ozone, for whatever that's worth.

To answer OP's specific questions:

- Specialty labs can be useful tools, but they're also not the be-all end-all. You also don't mention what lab tests you've already had.

- As for whether or not to start treatment, I don't think we have enough info to provide an informed opinion. What are your symptoms? What is the proposed treatment? Have you had any reaction (good or bad) to antibiotics in the past? What do your labs look like? Do you have any gut issues? How bad are your symptoms, and what amount of risk are you willing to take? Taken at face value, a Lyme diagnosis offers a lot more "hope" than CFS. After all, many (most?) people with Lyme Disease, even late-stage/chronic, are able to achieve remission.

- The primary risk of antibiotics will be to your gut. My doctor requires that you supplement with two different brands of probiotics, as well as S. boulardii.

- As for herxing, it's a temporary reaction that's over in a number of hours. Don't worry too much about it yet.
 

mrquasar

Senior Member
Messages
351
Likes
1,312
Location
Houston, TX USA
The primary risk of antibiotics will be to your gut. My doctor requires that you supplement with two different brands of probiotics, as well as S. boulardii.
Not to seem pedantic, but recent surveys of the gut microbiome have demonstrated that the strains in most commercially available probiotics, including S. boulardii, aren't even well represented in the healthy gut. Genera such as Bacteroides dominate the gut. So you're really not even replacing the strains that are getting killed off by the antibiotics.
 
Messages
7
Likes
7
I use Buhner's herbal protocols for Lyme, babesia, and bartonella, coupled with antibiotics during flares. The body and immune system has to be healthy enough to fight the infection on its own, without that leverage antibiotics have limited value, or must be taken indefinitely or in IV concentrations. It's critical that all loose ends are tied up before antibiotics, Horowitz's MSIDS model covers the most common causes of treatment failure.
 

Mel9

Senior Member
Messages
830
Likes
2,179
Location
NSW Australia
I have a different experience with antibiotics.

I found that they were essential for stopping the agonising Lyme symptoms. (Pain all over, severe malaise, floaties in eyes prevent proper vision).

The worst of these symptoms lifted within four days of antibiotics: clarithromycin, Zinnat with Biofilm Defense daily.Tinidazole weekly.

I now still have the POTS and ME symptoms and am working on those but life is much more liveable without the raging Borrelia infection.
 

Wolfcub

Moderator
Messages
1,001
Likes
2,565
Location
SW UK
One other option would be to consult a qualified medical Herbalist, and use a herbal antibiotic treatment which could be effective in your case and much gentler on the system, plus could be continued for quite some time, with maybe a few tweaks here and there.
However there may possibly, still be some "healing reactions" as the herbs did their work. But it may be worth considering as an option.
But even with a herbal antibiotic treatment, it would probably be necessary to take a suitable probiotic. But the Herbal practitioner could advise.