25 May 2018
Author
tuftyone
Title

GP not entirely supportive

Body

Hi, I just received a letter back from my GP after sending him information from David's website. He says that his theory seems to be very much a one-man theory and that I should seek neurological treatment options. I told him that I wanted to do an Elispot test offered by ArminLabs (i know it's not 100%) that I would finance. He has offered to take the blood but will not prescribe the antibiotics without a Neurologist's opinion frown

Comments

Sarah

25 May 2018 03:32 pm

Tufty, unfortunately this 'theory' has been accepted since before your doctor will have been trained. In the nineteenth century. MS was widely thought to be caused by an infection and on into much of the twentieth century, but Cpn had not even been discovered. 

You could try by giving him much more Vanderbilt evidence, but maybe if you started by buying the stuff yourself, if he saw some improvements after six months, he would be willing to start prescribing.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

tuftyone

25 May 2018 03:52 pm

Thanks Sarah, I will absolutely fund this myself but how would I get hold of the antibiotics?? This is my life, not my GPs!

Diagnosed RRMS 1999. No DMDs or other meds. Have done TMJ correction, Candida protocol, CCSVI venoplasty procedure.

Sarah

25 May 2018 03:56 pm

I think I have just managed to send you a private message:  look under 'My Account.'

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah

2 Jun 2018 10:57 am

Tufty, I get the message 'access denied!'  If you look at my art website, you will find my email address, so use that instead.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Barcelona

28 May 2018 06:10 am

Hi Jane! 

Hopefully you get evth sorted out. 

It took me a lot of time to find a GP which would prescribe me the antibiotics... finally an ultra motivated GP took a moment to listen to me... and this made it so much easier. 

I tried to let them know that there is no other option but my own choice of treatment if they could not offer a better solution. 

In my last neurologist appointment, and after waiting for it during more than a year, we ended up discussing about my Flora, and not my Brain. 

My partner asked if they knew sth about MS with antibiotic treatment. They treated the theory as if it would be a one man shot to the Moon, showing no interest on it nor so ever. 

It frustrated me... God! that was frustration... they took 8 tubes of blood before to release me. (I felt like a little mouse). That room was full of people sort of doing a dialisis... later on, Google said they were on some sort of Plasma division/cleaning process.

I am not sure this would be an option I would choose... I am too much of a wild spirit as to live connected time to time and forever to a machine. 

I have been 12 months now on Doxy and Azithro. Both pretty bearable. My favorite antibiotic is the Metro though... God! This one opens the maze, closes it back and plays with your brain (and your guts). 

I am on the 5th pulse right now (I made a mistake on the dose, so I started it later...). The Metro became much easier to bare, though this time it is sort of an external moving headache, pain on the back of my eye in recovery, and some feelings in my ear... no more tears after a roller-coster of emotions. ?

I feel I am getting better, now it is just a matter of time and patience. 

 

 

 

 

Gisel·la

Started the Protocol: 01/06/2017

MS Diagnosed: 21.IX.2016

 

Barcelona

28 May 2018 06:28 am

By the way... it did not help when I read that the tratment the neurologists were proposing me costs 1.000e per box (one month), and the company is in Trial as per Patent issues... 

I am not sure what sort of trust would that create... ??

 

Gisel·la

Started the Protocol: 01/06/2017

MS Diagnosed: 21.IX.2016

 

tuftyone

28 May 2018 09:35 am

Thanks Barcelona

I have never intended to take any drugs based upon an old unproven theory. I never have and i'm doing better than most MSers I've known. So seeing a neuro in September will just keep me in the system and massage his ego, and make my GP happy :)

I struggling to make the decision to order the Abx, as going it alone is kind of scary and I worry about developing resistance. Also I'm sure I read that Stratton deduced that CPN is only present in about 20% of patients.... did I understand that right? ...and this will be the complete opposite to the anti-candida protocols i ws previously following :/

 

Diagnosed RRMS 1999. No DMDs or other meds. Have done TMJ correction, Candida protocol, CCSVI venoplasty procedure.

Barcelona

28 May 2018 10:09 am

Mmmmm... (thinking mmmm)

I know what I would do, but I agree with you, it is a really personal decision...

I was afraid too about the antibiotic resistance, though, I got so many urine infections while working in diving, and took so many pulses of antibiotic to fight it... (it seems in Thailand I was not killing the right bacteria and so it kept on coming back...), that for me it was worth trying. 

I am still in the system (Spain, it is public), and I will let them take as many blood and MRI's from me as they need. Though, I plan on going back to dive, and buying the injections, nor sending them was an option. Anyhow, it seems it reduces 30% of the 'attacks', and it is forever.

To be honest, I did not read Stratton's... (my bad). All my medical history was so accurate with David's site that I guess I felt lazy to go for more. 

If finally you decide to start on your own, keep your GP on your side, or change him/her if possible for one you feel comfortable with. Ask the GP for blood analysis to keep a track on your health and ask whatever question you have in this Forum, there is always someone ready to answer. 

Just think that whatever decision you take, it will be the right one. Just keep on reading about it.

I wish you lots of luck. :)

 

 

 

Gisel·la

Started the Protocol: 01/06/2017

MS Diagnosed: 21.IX.2016

 

Barcelona

28 May 2018 10:23 am

I made this based on my personal experience, maybe it helps:

+ Tools&Tips I : What + ---> 1. What are all these pills and medication?

+ Tools&Tips II : Where + ---> 2. Where do I get these pills and medication?

+ Tools&Tips III : When + ---> 3. When to start? / 4. When to take all these pills?

+ Tools&Tips IV : How + ---> 5. How to start?

 

 

Gisel·la

Started the Protocol: 01/06/2017

MS Diagnosed: 21.IX.2016

 

tuftyone

28 May 2018 10:41 am

that's excellent, thank you

 

... not sure of my GP offering bloods or any other support if I go against him, and admit to buying the meds from abroad. That'll be an interesting conversation

Diagnosed RRMS 1999. No DMDs or other meds. Have done TMJ correction, Candida protocol, CCSVI venoplasty procedure.

JaneK

28 May 2018 10:37 am

Tufty,

i suspect most of us will  recognise your trepidation., but, this is the very best thing i’ve ever done for myself and those around me. My GP is hostile to the CAP, my neuro wants me to do it. He says the resistance won’t affect me. And, which is worse anyway,,  MS or ABX resistance?  I, also, go it alone, and i am not the only one. But alone suggests   no  support The people here will always help you through the difficult times, and cheer the good times.

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

MacKintosh

30 May 2018 09:11 pm

We take two antibiotics simultaneously so there will be NO RESISTANCE.  Good grief, don't these doctors take a science class or two along the way?!?!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

D W

7 Jun 2018 01:28 pm

 

 

Here’s a section from my questions and answers page which may help:

 

Why doxycycline and roxithromycin (or azithromycin)?

Both are oral, both are active against Chlamydia pneumoniae, both are relatively inexpensive. They are relatively risk-free. They act synergically against test strains of the organism; giving both together would be the equivalent of giving a four-fold increase of each drug were it to be given alone. The drugs work on different steps in the bacterial protein synthesis pathway. Combination therapy reduces the chance of the emergence of resistance. Both drugs pass into the brain. Both reach good levels inside cells. This is very important. Both are well tolerated. Azithromycin is an alternative to roxithromycin. They deplete the organisms slowly: this is very important, as the release of bacterial endotoxins should not be sudden.

 

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

tuftyone

30 May 2018 06:14 am

Seeing as my GP has reluctantly offered to take the bloods, I'm thinking of ordering the gG/IgA and Elispot test by Arminlabs. Trouble is, if it comes back with a false negative I'll be back to square one :/

What do you think??

Diagnosed RRMS 1999. No DMDs or other meds. Have done TMJ correction, Candida protocol, CCSVI venoplasty procedure.

supaguy

30 May 2018 10:53 am

One of the best steps that anybody can take is to realise and act on the fact that your GP will not help you and he is not really allowed to help you. I know one exception to this. That's why I always have to refer to one of our members as "Lucky" Irene. Her GP did the lot! That really was the exception. Whatever you need to do, by and large, you will have to get on and do it yourself. It's just easier in the long run.

?

Good luck!

 

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

D W

30 May 2018 11:54 am

There’s a lot of truth in SG’s comment. GPs and hospital doctors are nowadays expected to follow the NICE guidelines. Acting outside these guidelines can result in reprimand. (Guidelines of this nature are a substitute for thinking.)

 

As to serology for C. pneumoniae, false negatives are very common, probably because it is an intracellular pathogen. (Interestingly, titres can rise with antibiotic treatment as bacterial remnants are scattered throughout the body.)

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

D W

30 May 2018 02:58 pm

I have no personal experience of Elispot tests. In our laboratory we used SeroCPquant IgA: it is made by Savyon Diagnostics, Israel. It is excellent and sensitive for extracranial chronic Cpn infections. I guess with MS the pathogens are inside the brain, and are therefore inside the blood-brain barrier, as well as being intracellular. Serology in MS is poor. This is surely one of the reasons why Cpn has been so neglected as a pathogen in MS.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

tuftyone

30 May 2018 04:10 pm

That’s interesting David. Personally I have never believed it was a ‘brain’ thing, with lesions appearing as a result of bad CSF flow and which never seem to correlate with disability. I’ve always felt it was more muscular, or about poor blood flow. I seem to solidify when sitting or I’m static for any length of time.

Diagnosed RRMS 1999. No DMDs or other meds. Have done TMJ correction, Candida protocol, CCSVI venoplasty procedure.

boadicea

31 May 2018 04:52 am

Tuftyone - my experience and observation, over quite a few years now, is that many do get a positive Elispot, which is looking at T-cell activity, despite negative antibody testing. ArminLabs believes that Cpn, like borrelia, is a bacteria which can suppress the immune system, which is likely another reason for negative antibody results, especially in those who have been ill a long time.

I think the important question is why are you wanting testing and what do you feel it will achieve? Unfortunately, positive private tests results are unlikely to get you adequate treatment from a doctor. They just don't have the understanding of what it takes to treat these infections and they are too scared to work outside their guidelines. I don't know what country you are in, but NHS doctors here are very reluctant to accept private test results in any case. I did do private testing, but deliberately did not involve my GP, as I did not want to risk a negative result on my records, as they would have used that as further evidence of me being a crazy one!

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

tuftyone

31 May 2018 12:42 pm

to be honest, testing would be just for myself to confirm I'm doing the right thing. Although I can see there's more sense in just trying the protocol and seeing if there's any improvement. Thank you

Diagnosed RRMS 1999. No DMDs or other meds. Have done TMJ correction, Candida protocol, CCSVI venoplasty procedure.

Markus83

31 May 2018 06:49 am

I would not send to Arminlabs and other so called special labs, because it seems that they are producing a lot of false positives (I say that as a german). There was a report on danish television about that. I would rather use antibody tests (IgG, IgA) and if they turn out to be negative, I would try therapy (for example Wheldon protocol) and see how far I come.

 

Sarah

30 May 2018 12:31 pm

I might add here that David himself might have been chased for not following NICE guidelines, but escaped because of the hundreds of solid references given in his website: http://www.davidwheldon.co.uk/ms-treatment.html

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

tuftyone

31 May 2018 12:51 pm

I'm going to order the Abx soon.

I'm also convinced I fit the profile of someone with CPN...

- A scaly unexplained skin rash at aged 13

- NAC test induced a occasional headaches, a general unwell feeling, and small amounts of mucus

- presence of CCSVI

- Rosacea

 

 

Diagnosed RRMS 1999. No DMDs or other meds. Have done TMJ correction, Candida protocol, CCSVI venoplasty procedure.

Sarah

2 Jun 2018 10:48 am

Glad to hear this, Tufty!!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah

2 Jun 2018 01:59 pm

So please check in your spam folder if you want to read what I said...…………….

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

tuftyone

2 Jun 2018 02:41 pm

Hi sarah nothings come through and I’m not sure my Mac will let anything get through! 

Diagnosed RRMS 1999. No DMDs or other meds. Have done TMJ correction, Candida protocol, CCSVI venoplasty procedure.

25 May 2018
tuftyone