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Neuro Lyme - Private vs NHS

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Posted 5/24/2018 9:20 AM (GMT 0)
Hi, I was diagnosed as positive for Lyme via a LLMD and Armin Lab tests (Borrelia b OSP Mix 3 weak positive), didn't test for co-infections but EBV, HSV1/2, HHV, Coxsackie virus all showing activity. CD57 is 53 (normal range 100-360)

My LLMD hs recommended 1 month IV antibiotics ceftriaxone 2g, plus 6-8 sessions of IV immune booster in the month, glutathione, alpha GPC, aplha lipoic acid, nutrient 950, atesunate, coQ10, serrapeptase, probiotics, vitamin C, vitamin b, l-glutamine, buteyko exercises.
Plus monthly blood tests for liver and kidneys and consultations to review the treatment. He also wants to test for leaky gut.

This is all a bit mind blowing. The cost just for the supplements and consultation is over £500 a month without even having been given costs of the IV antibiotics yet. I just don't have the money. It cost over £2k just to get to the point of a diagnosis and the LLMD clinic costs me £100 just to get to, I can't go there 6 days a week for treatment.

So my question is - how many of you in the UK have successfully managed to get the NHS to support a diagnosis made by an LLMD based on foreign lab blood tests (i tested negative on ELISA 2 years ago), and did they provide the treatment as recommended by the LLMD? How hard did you have to fight and how did you persuade them? I note that the NICE guidelines have been updated and seem to fall more into line with my LLMD's recommendations. I have an appointment with GP next week to try to fight for them to treat me.

I feel really lost, if NHS wont accept diagnosis and I cant afford private treatment, what do I do?

Thanks
Posted 5/24/2018 8:04 PM (GMT 0)
I also have nuero pscy symptoms. I also can't afford llmds. Its scary and sad that we live in the most advanced world but our thought on medical treatment is barbaric. One thing about Lyme is that it exposes many aspects of our pyscical health but it also exposes humanity as a society that values $ as well. I have talked to many kind and compassionate LLMDs that understand the cost. Based upon many of these locations that some are in if you have $ then you get the treatment and have a much greater chance of being healed.

One thing that bothers me about some of the Lyme physicians is that they are knowledge able about the epidemic and understand the dieses. They also understand that they can make a ton of $ off people.

That's why I respect buhner alot because he see the big picture of the epidemic and has a attempted to create something that is doable for people with little monatry means. Try doing is protocol s until you have some funding. That's my plan. Sorry you have to suffer in the meantime.its crazy how people are kind, compassionate like, and caring when $ is on the line.

Sorry, for the political and critical rant just having a bad day and miss my beain! Dig deep and keep digging.
Posted 5/24/2018 8:17 PM (GMT 0)
Hi, Im from the uk originally but dont live there anymore so cant tell you 100% but unfortunately I think you will struggle to get the NHS to accept the Armin labs results. Even if they do I doubt they will offer sufficient treatment.

If you cant afford the Llmd you can always try the herbal approach, many people have success with this and most of the herbs can easily obtained in the UK. I use a site called Napiers.net and have no complaints.

Take a look at Buhners protocol or cowdens these seem to be the most popular.
Posted 5/25/2018 5:16 PM (GMT 0)
Have you tried oral antibiotics? they are 100x cheaper than IV.

Ask the LLMD to strip down the appointment to the lowest possible cost. Ask for minimal testing. They should be diagnosing based on clinical findings anyways. Tell him you would rather to oral medications instead of IV.

Not sure if the GoodRx app works in the UK, but it has saved me tons of money on my meds.

My first appt with LLMD was $1000 US ~750 UK pounds including clinical evaluation and testing. My meds average $100 US per month.

follow up appointments for me are only $350 US ~262 Pounds.

Not sure how many good LLMD's there are in the UK, but I have to think you could find one that is reasonable.
Posted 5/25/2018 8:20 PM (GMT 0)
I have had no support from the NHS! In fact if I listened to my nhs GP my EM rash was just a normal rash as lyme isn’t common here!! I’m doing an all herbal protocol. Which llmd have you been seeing in the UK?
Posted 5/25/2018 9:18 PM (GMT 0)
I am doing the herbal route right now as I have to wait two more months until my appt with LLMD (we did oral antibiotic a few months back but yeast issues halted things). I am doing the Cowden Protocol. Ive been told it is a little pricey but I do have a coupon code and also, with my severe neuro symptoms (brain fog, confusion, headaches, memory loss) Cowden gives you a written out schedule book so you are not confused and can check off what you took. I don't know if you have the issue with forgetting if you took something or not after just a few minutes....I do so this is a life saver for me.
Posted 5/26/2018 5:47 AM (GMT 0)
I had zero support from the NHS and some of my extended family are GP's - they also had no time for 'lyme co' and repeatedly told me that as I had taken doxy and amoxicillin for a couple of months that it was impossible I was still ill from a tic bite and it must all be in my head or something else that was wrong with me. Thank goodness I learned about the herbs and healing on this site.
Two years ago I started Buhners lyme protocol and then 6 months later added in Bart and I am 95% better and back working full time. You can get the herbs in the UK from either Napiers, Bristol Botanicals or Herb Active. I use Bristol Botanicals.
Posted 5/26/2018 7:53 AM (GMT 0)
Suzee do you take your herbs 3 times a day?
Posted 5/26/2018 9:17 AM (GMT 0)
Hi Szabo, when I first started the herbs I took them 4 times a day and now I take them just once a day in the evening.
I found the Gou Teng Cat's Claw the most helpful with the neuro symptoms, it was as if I couldn't always pronounce some words correctly and slurred slightly sometimes, since adding that in I haven't had that or the awful depersonalisation feelings/symptoms.
Posted 5/26/2018 9:34 AM (GMT 0)
Thanks Suzee, I’m taking cats claw but haven’t tried gou teng I will look into that. That’s great that you’re only having to take the herbs once, Iven not been working as I got bit during my maternity leave and never went back but I am looking into getting a job now and often wonder how I would juggle the herbs/ supplements etc
Posted 5/26/2018 10:10 AM (GMT 0)
When I was taking the herbs and supplements 4 times a day as I started to feel better I went back to work 2 days a week and on those days I would take my first dosage in the morning and I always took a water bottle with pomegranate juice and herbal tinctures mixed into that - I did enough to last a couple of days and would take some mid morning and mid afternoon then take my last when I got home.
Posted 5/26/2018 10:21 AM (GMT 0)
That’s a very good idea. I would feel like a plonker getting my 15 bottles out! Which brand of pomegranate juice do you buy? I’m just mixing with water at the moment

Post Edited (Szabo246) : 5/26/2018 5:03:07 AM (GMT-6)

Posted 5/26/2018 2:56 PM (GMT 0)
I know exactly, couldn't possibly take every individual herb and supplement in to take in work smile

I get the 100% Pomegreat juice from Waitrose, its the only store I have found it in not from concentrate, only certain Waitrose stock it and Buhner recommends Pom juice. If you email Waitrose they will let you know your nearest store that stocks it. I can email you a pic of the label if you like.
Posted 5/26/2018 6:58 PM (GMT 0)

Spanish said...
Hi, Im from the uk originally but dont live there anymore so cant tell you 100% but unfortunately I think you will struggle to get the NHS to accept the Armin labs results. Even if they do I doubt they will offer sufficient treatment.

If you cant afford the Llmd you can always try the herbal approach, many people have success with this and most of the herbs can easily obtained in the UK. I use a site called Napiers.net and have no complaints.

Take a look at Buhners protocol or cowdens these seem to be the most popular.

NHS will NEVER accept BCA or Armin lab results. They are based on a re-purposed Tuberculosis test approved in 2011, called Elispot-LTT. BCA/Armin repurposed this into testing Borrelia response of the lymphocytes , instead of TB. It is essentially the same technique but with different pathogen. But it is not widely accepted.

I personally found these tests very reliable. My symptoms were always in line with these tests. When i felt the worst, my lymespot IFG were way out of range (+30), normal below 2. When i started to improve, these dropped. When i was asymptomatic during abx treatment, they dropped below range to 0-1, so i became negative in terms of lyme immune response. When i started to have little symptoms again, they were weak positive with 2-3 (positive starts at over 2).

i do not know why these are not approved. probably other big fish wants to take the big chunk of market and prevents them from being recognized internationally...

but i think it's the only reliable chronic lyme test that is now commercially available, that can show disease activity so u can get an early warning of an incoming relapse for example....

There are many others now under development across the world, esp in the US, there will be many options in the next years.
Posted 5/26/2018 7:44 PM (GMT 0)
Igenex has something similar now to the Ispot and the Elispot.

Two new tests.
Posted 5/26/2018 7:48 PM (GMT 0)
Thank you all for your responses. I’m not sure I’m allowed to name the LLMD on here so I won’t. He did say that if IV wasn’t an option, one called cefuroxime (I think) as he said doxy isn’t great on nice sunny weather (I reacted badly to sunlight when using it as an anyimalarial some years ago).

I’ll admit to being baffled about herbal vs antibiotics. Should it be one or the other or does doing both help. I need a simple ‘for dummies’ guide to lyme! There is so much information even in the top post thatvits hard to know where to start.

I’ve had to stop 2 of the supplements he recommended as I think I was OD-img on b vitamins, I’ve had a really upset stomach since starting them.

My symptoms are purely neuro, brain fog, extreme headaches and neck pain, confusion, memory loss, inability to remember certain tasks some days, like typing. I’m having a really good day today, which feels amazing!
Posted 5/26/2018 8:06 PM (GMT 0)

AprilHope said...
Thank you all for your responses. I’m not sure I’m allowed to name the LLMD on here so I won’t. He did say that if IV wasn’t an option, one called cefuroxime (I think) as he said doxy isn’t great on nice sunny weather (I reacted badly to sunlight when using it as an anyimalarial some years ago).

I’ll admit to being baffled about herbal vs antibiotics. Should it be one or the other or does doing both help. I need a simple ‘for dummies’ guide to lyme! There is so much information even in the top post thatvits hard to know where to start.

I’ve had to stop 2 of the supplements he recommended as I think I was OD-img on b vitamins, I’ve had a really upset stomach since starting them.

My symptoms are purely neuro, brain fog, extreme headaches and neck pain, confusion, memory loss, inability to remember certain tasks some days, like typing. I’m having a really good day today, which feels amazing!

You can use initials for the LLMD's name here.
Cefuroxime (Ceftin) is a good antibiotic for lyme.
Hopefully it will be paired with a second antibiotic..

You can start taking probiotics now..if you aren't already.
Posted 5/27/2018 6:39 AM (GMT 0)

Suzee said...
I know exactly, couldn't possibly take every individual herb and supplement in to take in work smile

I get the 100% Pomegreat juice from Waitrose, its the only store I have found it in not from concentrate, only certain Waitrose stock it and Buhner recommends Pom juice. If you email Waitrose they will let you know your nearest store that stocks it. I can email you a pic of the label if you like.

Thanks Suzee, I will pop in to my local Waitrose today if I can’t find it will let you know, thanks for all your advice smile
Posted 5/27/2018 7:04 AM (GMT 0)
Hey you're welcome Szabo, the info, help and advice I got on here is what got me on the road to recovery. Just wanted to let you know as well that isn't a typo, it is called pomegreat juice and its only available in 500ml bottles.
Posted 5/28/2018 6:45 AM (GMT 0)

Missouri said...
Have you tried oral antibiotics? they are 100x cheaper than IV.

Ask the LLMD to strip down the appointment to the lowest possible cost. Ask for minimal testing. They should be diagnosing based on clinical findings anyways. Tell him you would rather to oral medications instead of IV.

Not sure if the GoodRx app works in the UK, but it has saved me tons of money on my meds.

My first appt with LLMD was $1000 US ~750 UK pounds including clinical evaluation and testing. My meds average $100 US per month.

follow up appointments for me are only $350 US ~262 Pounds.

Not sure how many good LLMD's there are in the UK, but I have to think you could find one that is reasonable.

Could you please send me your Llmd?
Posted 6/1/2018 6:26 PM (GMT 0)
Hi. I am looking for a good LLMD in North London. Any recommendations ?
also wanted to ask if its worth trying the herbal protocols before taking ANY antibiotics?
I'm completely new at this and would appreciate guidance..smile
Posted 6/2/2018 12:06 AM (GMT 0)
Hi MumHKS - welcome to our community!


I do have some options in England - one is near London. Not sure if I know of one in Northern London.
Hopefully someone from England will be posting soon.

I also have some support groups listed.

Send me an email if you'd like the information.

Certainly no harm in trying herbal protocols before antibiotics.
Is this a chronic infection? If it is an acute/recent infection, then I'd push for antibiotics a.s.a.p.

We encourage our new members to read through the information contained in the thread: "New to Lyme?..Start Here!" It's packed full of useful information.

Please feel free to share your 'story' here with us - you can start a new thread.

good luck!
Posted 6/2/2018 9:23 AM (GMT 0)
Hi MumHk I’m from the UK. Feel free to email me, I have seen an llmd on the outskirts of London (Hemel Hempstead) I’m doing an all herbal protocol which he supports, I see him every 3 months or so for a review, in all honestly though most of my best advice has come from this forum and burners book.

I get my herbals from Bristol botanicals they do the full range for lyme and co’s.

Please feel free to get in touch I know how overwhelming it can all be.
Posted 6/4/2018 7:48 PM (GMT 0)
Hi again, thanks for the replies. As expected, my GP looked at me like I was stupid and asked how the LLMD had come to the conclusion that it was lyme disease, and that lyme was very difficult to diagnose (like that's a reason NOT to diagnose it?!) and that the foreign tests were not reliable. He admitted that the UK tests are also unreliable and so im not sure what his point was! (this is the same GP that tried to say i had anxiety and to give me anti-anxiety medication, which i refused to take as i refused to accept his diagnosis). He has at least referred my LLMD report to the infectious diseases department at the hospital, to get their opinion. But who knows how long that will take.

My LLMD's initials are C.I., I found him through a nutrition clinic in London (there's a hint on where to google!)

I'm still torn between trying the herbal route vs the antibiotic route. My neuro stuff is fairly deep rooted in that it's 2.5 years since infection, but I don't get a lot of the other symptoms people talk about like joint or muscle pains, its all head and neck and brain for me. Im worried that if I tried the antibiotic route and couldn't afford to keep going for the full duration until healed, that I would have negatively impacted my gut/liver/kidneys without resolving the problem, whereas rightly or wrongly it feels like herbal is a less damaging way to go?

Szabo, which LLMD did you find?
Posted 6/5/2018 8:18 AM (GMT 0)
I have been seeing Dr M at the Breakspear Clinic in Hemel Hempstead.

As for going with abx or herbs it’s hard to say, my doc said herbs were a slower but gentler approach. Saying that some of herbs are potent!
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