• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

2 questions... Herxing and UK options

Skippa

Anti-BS
Messages
841
Hi all,

I am suspecting Lyme for various reasons (including having a couple of bullseye rashes during my lifetime).

Anyways, firstly, I thought I'd get some Samento and see if I herx. I'm scared of herxing. Does it last long? Will I crash? Do I continue Samento if I herx? Do I get my ass straight to a doctor?

Secondly, what are my options re diagnosis and treatment in the UK? Will I have to travel? Will it cost an arm and a leg?

Thanks :)
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Yes you will have to travel for a Dr - Breakspear are not that great in my opinion and not treating aggressively anymore. You could test through Armin labs - they also offer treatment advice, but going it alone like this is not easy.

If you don't want/cant afford to travel then you could try alternative practitioners in the UK who are familiar with Lyme such as bio resonance, herbalists, homeopaths etc. Lyme Disease UK Discussion Group on FB has a lot of info on Drs and practitioners.

Otherwise for a medical Dr there is the states or KDM in Brussels. Dr Myhill is treating for Lyme now, but not taking new patients.

Herx - I think it depends on how much you take and how high your bacterial load is. You may not herx staright away - no idea how long a samento herx will last for. I wouldn't mess around, but would go straight to a Dr. My leaving it for so many years has resulted in MCAS which now makes it very hard for me to treat and I have become much siker as a result. Don't leave it - get tested or get to an LLMD.

Back to herxing. I herxed very hard on immunoglobulin therapy and was floored and very ill for three weeks, but I think that is because it takes three weeks for the product to leave the blood stream. It is dangerous to herx this hard and for long as it means you have a lot of inflammamtion going around the body. I was told to reduce the dose until I didn't herx. But obviously this is a different drug.
 

Skippa

Anti-BS
Messages
841
Ah crap, thanks for the inputs.

I guess I'm on my own then.

Oh well... I'm fairly sure I have MCAS, I'm permanently on anti-histamines, glands are up and sore at the moment in fact, been ill for a looooong time.

Can't trust herbalists and I won't patronise homeopaths or give them any $$. Just as well visit a medium.

Can't trust doctors either though.

Psshhhh. Bums.
 

Skippa

Anti-BS
Messages
841
I guess being in the UK the outlook is bleak regardless of getting a positive diagnosis or not.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I guess being in the UK the outlook is bleak regardless of getting a positive diagnosis or not.

Not really if you can afford to pay for it - it's the treatment that is the problem not the DX. If you go through the NHS then their Lyme test is going to be a hit and miss affair.From the experience of people here, more miss than hit.

You can however, get your blood drawn and sent to Armin labs or somewhere else for testing.

It's the treatment that gets difficult if you need in particular drugs that administered by IV.

However people are finding ways through all the difficulties

As an example see this thread for someone who has found a clinic in London offering infusions. You still need a prescription. May be able to do that with a trip abroad in Europe somewhere after you have paid for tests and have the results. Cut down on time and number of tests needed

http://forums.phoenixrising.me/index.php?threads/iv-clinic-for-lyme-treatment-in-london.43526/