In the end it was Lyme

[Allyb510]

Like any Bb species and strains you are likely to experience in Europe, except no ACA.

The party line is that it primarily attacks joints, and it is sorta identified with swollen knees. But that pigeonhole has pretty much been exposed as a definition characterizing the scope of a disease, as opposed to the disease symptoms and etiology qualifying its definition. So, if you can imagine a manifestation, odds are Bbss can deliver.

A growing community of researchers believes that primary manifestations include many that are neurological. In the US, that is disputed by the IDSA Guidelines, which deal primarily with Bb sensu stricto. I'm sure you have heard it has been misdiagnosed as MS, ALS, etc. It also can impact the heart; supposedly, too, eyes, the thyroid...it's a scrolling list. But how can it manifest? If it truly is a systemic infection that can attack tissue, organs, cartilage - singularly or in concert - well, the sky's the limit.

Of course, in some people, it is purported to resolve on its own with no symptoms. Other resolve with IDSA-recommended therapies. Some need much more. Some appear to never resolve.

For some, it may simply act as a trigger for ME/CFS.

Relative to co-infections: As with Lyme testing, testing for coinfections can be unreliable. It took several years of negative tests before I tested positive for bartonella, which I have tested positive for now for four years running. And the first two times I tested for babesia I tested positive, but now I do not, despite never receiving treatment for it.

So, when you go for additional testing after whatever treatment regimen is prescribed, you may want to recheck coinfections as well.

Thanks for that Duncan. I'm in the process of reading Dr. Horowitz's book at the moment and then I plan to study the latest Lyme research.

Due to being untreated for so long I am affected in virtually every system of the body. I will definitely retest Borrelia and coinfections throughout my treatment to determine what's working and what isn't. Have you found anything you've done to be particularly beneficial?

 

[Allyb510]

It really is. I never used to worry about it, and now I don't even want to cut through a thin patch of brush in the backyard!

Yep, my kids love camping and I hate to discourage them from such a wholesome pursuit. Mind you, they probably are already infected through me. Will be having them tested next.

Doxycycline is the main one I've been on and it has been super helpful, and Azithromycin has been useful, too. I was also on Sulfamethoxazole last month and my doctor actually pulled me off it because I was herxing too much! (She takes the slow-and-steady approach and wants me to limit herxing to 1-2 days.)

I also have to mention an herbal combination I've started called Tox-Ease, which, while it does assist with detoxing, also reduces inflammation that the bugs like to hide in, so since adding that I've had to halve my doxy dose most days because I keep herxing! Which isn't a bad problem to have. Plenty more bug-killing to be had here.

I have Lyme (in unknown quantities--possibly almost gone after over six months of treatment), Bartonella, and Protomyxzoa Rheumatica, if that helps any. Other coinfections are unconfirmed.

That is so interesting. Thanks. If Tox-Ease allows you to reduce your dose of antibiotic while still killing the buggers then that has to be a good thing!

Yup, I hope they don't give you any trouble!

Well, knowing the NHS, they'll say to do nothing in late stage Lyme! If so, I won't be listening.

 

[ukxmrv]

Well, knowing the NHS, they'll say to do nothing in late stage Lyme! If so, I won't be listening.

That's good news that you are not going to be listening.

My experience is that the NHS test is used by the GP to be the final arbitrator of infection. I've not known anyone yet to be positive through the NHS test so that leaves patients in sometimes an open conflict with their GP.

The GP won't accept that a test from abroad is as reliable as the NHS one and refuses treatment.

 

[Allyb510]

That's good news that you are not going to be listening.

My experience is that the NHS test is used by the GP to be the final arbitrator of infection. I've not known anyone yet to be positive through the NHS test so that leaves patients in sometimes an open conflict with their GP.

The GP won't accept that a test from abroad is as reliable as the NHS one and refuses treatment.

@ukxmrv Oh dear, that's what I was afraid of. If I'm negative, they will feel justified in neglecting me further.

I've often thought that if I had the energy, I would research how the NHS determines which tests they use. Why do they use the test(s) they do for Lyme and why do they believe these tests are better than other methods for detecting Borrelia? How many patients are false positive and false negative?

And, in fact, how are the reference ranges for the tests determined? The reason I mention this is the GP remarked that some of the reference ranges used by the doctor were slightly different than ours and others were the same. I wonder why that is and if there is any significance?

 

[ukxmrv]

@ukxmrv Oh dear, that's what I was afraid of. If I'm negative, they will feel justified in neglecting me further.

I've often thought that if I had the energy, I would research how the NHS determines which tests they use. Why do they use the test(s) they do for Lyme and why do they believe these tests are better than other methods for detecting Borrelia? How many patients are false positive and false negative?

And, in fact, how are the reference ranges for the tests determined? The reason I mention this is the GP remarked that some of the reference ranges used by the labs in Belgium were slightly different than ours and others were the same. I wonder why that is and if there is any significance?

These are pretty "well trodden paths" that other Lyme patients have been through. Letters have flown for years. Seen some of them.

The most recent news seems to be from John Caudwell but I am not at all up to date with Lyme politics sorry. He's been talking to NICE etc. It may save you some time to have a look at his website.

https://caudwelllyme.com/

Good luck. Hope it goes well with your GP

 

[Allyb510]

These are pretty "well trodden paths" that other Lyme patients have been through. Letters have flown for years. Seen some of them.

The most recent news seems to be from John Caudwell but I am not at all up to date with Lyme politics sorry. He's been talking to NICE etc. It may save you some time to have a look at his website.

https://caudwelllyme.com/

Good luck. Hope it goes well with your GP

Thanks for that. Will have a read.

 

[OhShoot]

Gosh, yes, the testing. I had a positive ELISA but only one band positive on the Western Blot (is it two or three they want?) so the GP went "nope, not Lyme, you're depressed, next."

Of course, antibiotics then worked, and a few months into treatment, I tested positive for a more specific band. But that would still be considered negative!

What a circus this is. Best of luck!

 

[Mel9]

Gosh, yes, the testing. I had a positive ELISA but only one band positive on the Western Blot (is it two or three they want?) so the GP went "nope, not Lyme, you're depressed, next."

Of course, antibiotics then worked, and a few months into treatment, I tested positive for a more specific band. But that would still be considered negative!

What a circus this is. Best of luck!

Happens to all of us but if you have the symptoms and they respond to antibiotics, the uncertainty disappears.

 

[Artorias]

Hi, can you please tell me where you're getting all these tests done? I contacted Breakspear but their initial costs were very expensive. Can I ask for tests on the NHS?