Desperate to find a dr who will help with protocol

Good morning,

I tried looking for my last post on here but couldn't find it. I thought it may be easier for you folks to recconect to who I am with that post in the string of messages. However I am going to post this message on my blog too.

To recap, I have been suffering with chronic fatigue syndromei for over 20 years. Was only diagnosed in 2011 though. After many years of searching I finally found a doctor who was on board with me to start the protocol. However when the time came to start she shyed away and I am now left hanging.

I am desparate because it is so hard to find a dr willing to help and I was very enthusiastic to start my treatment protocol. The disease leaves me dealing with lots of symptoms and minimal functinality and this was my last hope.

I was wondering if anyone on this board can help me to find a dr who is willing to help. I live in Ontario, Toronto area however I am willing to travel.

Please help. I am so desparate.

Anybody? Suggestions?

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

Hey ...

When I first started reading this post, I had no idea where it was from. I am sure that there are lots of advantages to living in Canada. Sadly, being able to easily obtain prescription drugs is not one of them I know.

Last month, I was on holiday in Madeira. I ventured into a pharmacy there and just asked for rifampicin. They didn't have any but assured me they could have some in by the next day. Oh, and for this I'd need a prescription. Not worry, the young lady said, she'd write me one out. The following day, I sent my companion in to that pharmacy. I paid €21.40 for 60 X 300 mg capsules. That was Portuguese territory. If I have been in Spanish territory, it would have been even easier.

I live in the UK. Here it is not legal and therefore not possible to walk into a pharmacy and just buy prescription drugs without a prescription. However, it is perfectly legal for me to buy them abroad and bring them into the UK. It is also perfectly legal for me to purchase prescription drugs from the Internet and import those into the UK.

I know that in some European countries, they can be very strict and prohibitive. That is particularly so in Scandinavian countries such as Norway, Finland and so on. There, they will confiscate prescription drugs at customs.

I don't believe that doing this treatment without the doctor is difficult ... well certainly not if you can purchase the drugs.

I know of one lady that was a regular poster on this site that lives in Canada. She used to have to travel across the border into the United States and have a doctor there prescribed to her. That was very long and arduous journey. I used to weep for her at the thought of it.

Anyway, as I say, anyone that can get hold of the correct drugs, should have no difficulty in treating themselves. Perhaps you would be able to get a prescription from a doctor in Europe whilst on holiday. Just a thought.

I do hope that you meet with some success. I personally find it easier not to have a doctor actively involved in my treatment.

Good luck my friend.

G.

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

―    Abraham Lincoln<

You might try this: Fly to Vanderbilt after getting an appointment, get with one of the specialist there, get started on the protocol with them. Fly back home and after a few months just use the 'evidence' of being on CAPi at that time as being an 'existing' treatment, and with that go to a local doctor approaching them to 'continue' administering your treatment locally - they will be more open to continuing some treatment you were already on rather than be rsponsible for putting you on it in the first place... 

Just buying antibioticsi on some black market or back door scheme, then taking them without any doctor supervision could be dangerous and strongly not advised, no matter how desperate you may feel... there's monitoring tests that need to be perscribed as well.

We find consulations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Hi I buy abxi from the internet, the company was recommended by a member here, in itself nerve wracking, trusting a stranger, but i took a leap in the dark. Although, i was, initially, nervous, i soon realised the abxi and the company were good and not black market! In the UK GPsx are threatened with being struck off, for prescribing abx!j i’ve needed to pay tax, on posted abx, not prohibive, but, annoying, although, for me, preferable and cheaper than flying.  Are you able to receive abx mail oder?

Also,  i have an MSi dxi but not cpni. Do you really need tests, which are, often falsely negative?  Really, thoroughly read, understand, and re-read every single word on this site and make an informed choice for yourself. Risks seem few, but they’re there, so make it your choice.

MSi symptoms began in 2001 DXi RRMSi 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

Hi Janet - and all UK CAPers!

(This only applies to the UK)

No, actually you are NOT liable for Value Added Tax on the drugs that you import. These drugs are zero VAT rated.  HMRC have fleeced lots of money from me over the years. They make things difficult.

I have posted here before about the rules. I know for certain that I am right. All the drugs that I have imported in more recent times, I have been not been charged VAT. No VAT because the correct COMMODITY CODE was clearly printed on the delivery label. For every VAT exempt drug there is a commodity code. If you look in the search box on this website, you will see previous posts of mine where I cite those commodity codes. There is a special department within HMRC that issues commodity codes. I will try and find the email address of that department so that you can ask for yourself if you want.

One final time: prescription drugs are zero VAT rated. You have to get the supplier to put the commodity code along with the address label otherwise Philip Hammond will charge you 20% VAT and the post office will charge you a further £8 handling fee (and you have the hassle of going up to the delivery office to pay and collect).

Smile

G.

(Try typing "commodity code" into the search box)

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

―    Abraham Lincoln<

SG, Oh my God!  As if HMRC hasn’t had enough of my money, already! Dear Philip H, should you read this, if you’re interested in us at all,  NO MORE FREE CASH!

MSi symptoms began in 2001 DXi RRMSi 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

I think Batgirl's idea about Vanderbilt is a good one, but my idea, bearing in mind that both this site and David's< give very clear instructions for treating yourself, is to order the abxi online and just get on with it yourself.  I have bought stuff from many companies in both India and Thailand and nothing ever harmed me.......................Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I think there might be a problem trying to order online if you are in Canada. I know the company I've ordered from don't ship there because the abxi get stopped going into the country.

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Bo, I think you are right: Loulou used to drive from Toronto over the border to pick her order up from a hotel in Buffalo, NY.  She always got back with medication intact though, so that maybe is a possibility....................Sarah

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

Hi again JaneK!

You should already be aware, especially from recent news items, that not everybody pays tax. The payment of tax is normally restricted to the plebs like you and I. Philip Hammond thanks you for your contributions thus far but would really like even more so that others can remain in Paradise.

The email address to make enquiries about commodity codes from the UK HMRC is as follows:

classification.enquiries@hmrc.gsi.gov.uk 

Below are a couple of common examples of commodity codes for drugs that we might use. Sadly, the doxycycline code is not there. You can email them at the address above and get the code for that and any other drugs that you might buy.

Roxithromycin: 3004200000

Tinidazole: 3004900000

Ivermectin: 3004900000

Amoxicillini: 3004100000

If you do order drugs over the Internet to be imported from abroad, I suggest that you put any commodity code in the first line of your address, that way it won't be missed off.

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

―    Abraham Lincoln<

I've never been brave enough to use the commodity codes. I was told by a friend who used to work for HMRC that, in theory, they could ask to see a copy of the prescription when the codes are used, so it would be best to have a copy of the prescription included in the package in case they open it. I realise it's a very small risk, but, as I don't tend to be as lucky as Supa, I've never dared take that risk. On balance, I think it's randomly worked out that about half the packages have got through without further payment anyway.

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Hi Bo!

Well I am not a lawyer or any sort of legal expert. I know that the 1968 Medicines Act makes it illegal to sell prescription medication in the UK without a valid prescription. That same act governs all sorts of things to do with the sale and dispensing of medicines.

I know that it is perfectly lawful to import prescription medications into the UK for one's personal use and for the use of close family members. I don't know of any law that requires me to have a prescription for that medication. As you know, when you are in Spain, you can just go to a High Street Pharmacy and purchase whatever prescription drugs you choose. Provided those drugs are not to be resold in the UK, under single market regulations, there is no impediment as far as I know to bringing them back into the UK ... which is what I am many others have done. This goes without saying that this whole conversation excludes the subject of Controlled Drugs. Those are drugs specified under the Misuse of Drugs Act; namely drugs such as diazepam through to diamorphine.

When I first imported drugs from abroad, I too had heard something about Customs being able to demand to see your prescription. I have never heard of this ever happening. It is true that I had a fall back position whereby I could obtain a genuine prescription from a GMC registered doctor. As it happens, nowadays, nearly all of my medicines are actually purchased at High Street pharmacies using one of those prescriptions.

I am pretty confident that HMRC are only interested in screwing us for any money they can get out of us. So long as you are not involved in controlled drugs or criminal activity (such as reselling the medicine) HMRC will not be involved. They will always be quite happy to take their 20% VAT if you let them.

Smile

G

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

―    Abraham Lincoln<

I agree with everything you say, Supa - as ever! I think that's the thing though - I didn't have a Plan B of any sort, so felt, on balance, it probably wasn't worth me trying, just in case.

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

thanks SG, i’ll use the code after i’ve sent a message  To HMRC, I don’t suppose i can get a refund! But, yes i’m just a pleb. to them!

MSi symptoms began in 2001 DXi RRMSi 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

Not talkin' 'bout the CPni test (false neg's is an issue there...) - talkin' 'bout the blood panels that need to be monitored before you pickle your liver or worse - liver function is important test, but so are the others like WBC, etc...

We find consulations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

...find a dr who...

so, we talking about Tom Baker? (just thought it had to be said - off into the TARDIS...)

We find consulations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

BatGirl,

You're absolutely right, especially about  liver function! I'm  a little blasé about such things, which really is NOT OK or sensible.for everyone. 

Jane

MSi symptoms began in 2001 DXi RRMSi 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

Liver function tests are more critical when using rifampin.  I never had one in six years on doxyi and azith. If anything had been out of whack, or I had complications, tests would have been done.

This is why I don't understand someone 'needing' a doctor to oversee the treatment.  If you don't feel well on the treatment, you're going to go see a doctor and the doctor isn't going to refuse to do tests on you!  Drug addicts, who are doing something highly illegal and harmful to themselves are seeing doctors all the time and getting tests done and receiving treatment.  When I started, I planned to do this protocol without a doctor.  If I'd felt awful, or looked jaundiced, I'd have gone to a general physician. 

In an ideal world, we would all find a sympathetic, knowledgable doctor (which I was fortunate enough to do), but it's better to be alive and functional than to wait forever for a physician.

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

Mac, I couldn't agree more!  I know that I am priveliged, being married to David Wheldoni, but I am also intellgent enough to know when I should seek medical help.  Having said this, you have to remember that many doctors are thinking that this is a very strange protocol and will be all too pleased to tell you to stop it.  My own general practitioner, I think, only went along with prescribing for me because she had slipped up in realising what was wrong with me, but she was relieved when I decided to buy the stuff online from India or Thailand.  Consequentally, she retired last year, and since I hadn't needed to see her to get a prescription or anything else, she went off to enjoy whatever she is going to do for the rest of her life, without seeing how well I was doing.

It seeems to me that it is far better not to waste time, so read the instructions carefully on this site and on David's, then go see a doctor when you are feeling better if you want to...................Sarah

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

Hi All!

As I have already stated here, I certainly take the view that doing this protocol is actually easier without a doctor in most cases. Fatigue and lack of energy is one of the things that people in our situation are often afflicted with. Having the last bits of energy expended on fighting with a doctor is the last thing that any of us need. The sad reality is that even if a doctor wanted to support you in your journey on CAPi, their are often professional guidelines prohibiting them from doing so in many cases.

As MacK quite rightly points out, drug addicts are given blood test for all sorts of afflictions. That does not mean that the doctors doing the test are approving or condoning the lifestyle or practices that the drug addicts are involved in. I am "Fortunate

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

―    Abraham Lincoln<

Hello everyone,

I feel privileged that you all wrote to me to pitch in on your ideas. At the same time I am almost in tears to hear your stories. Many of you have the same challenges and struggles that I have, not only in terms of symptoms but also to find doctors who actually believe in you and help. In all these years I felt so alone and isolated dealing with all this.

Unfortunately I know all too well how harsh doctors can be in dismissing you. Many do not care to help and those few who do and would like to help are intimidated by the prohibition to prescribe antibioticsi for not well known conditions. In the end, we are the ones who have to live with the disabling symptoms and not being able to carry on with our lives. My story with doctors and antibiotics is a very long and sad one. It would take pages and pages to explain the whole thing.

Long story short, I did previously travel back and forth from Italy to obtain treatment for another condition that I suffer from and that is poorly recognized by the medical community, called chronic endometritis, where I periodically needed antibiotics. Although I did periodically stock up on antibiotics during my visits there, it would be impossible and prohibitively costly to do that for a continuous use as required by the protocolsi on this site.

I would have no problem to take antibiotics on my own, as I've had to do in the past for the chronic endometritis. But as some people mentioned, it’s not easy to import antibiotics to Canada that are bought online. Once I tried to have them shipped from Asia and they were refused by custom.

The ideas that you provide are good ones and I believe I may have to follow the avenues that you describe, i.e. going to Vanderbilt or across the boarder to obtain treatment.

I will keep you in the loop.  Many thanks and hugs to all.

- Chronic Fatigue Syndromei since late 1980's - diagnosed in 2011 -

I sent a private message.

I have replied and will ive info in private email

Hi,

Does anybody have info about the P3 clinic in Toronto? It is an integrative medecine practice and I  heard that there are a few medical doctors that are open minded about treating CF with antibioticsi.

I am willing to give it a try but becasue they require $ 900 dollars right off the bat for medical testing and consulting, I would like to have some certainty that I won't be denied time and again.

At that point I would rather spend my money elsewhere and where I have more certainty that I will be helped with this treatment protocol.

Thanks for your inputs.

- Chronic Fatigue Syndromei since late 1980's - diagnosed in 2011 -

Hi ontariouser

Are there any doctors/clinics in Canada who treat Lyme? I think going down the abxi route to treating chronic illnesses usually requires approaching them as chronic Lyme even you've never had a tick bite etc.  

I couldnt see any clinics after doing a quick Google search but i wonder whether the Canadian Lyme Disease Foundation might be able to provide details of doctors willing to test for pathogens?

https://canlyme.com/about/<

There's also an Ontario-based support group which I think is a branch of the first.

It may also be worth you doing a Google search for Lyme literate doctors in Canada - I think search results from Canada might be more fruitful - I was still getting adverts for British doctors. 

There are certainly Lyme Disease clinics in the USA. For example: https://maureenmcshanemd.com/testing-for-lyme-disease/ in upsyate NY. They do testing for chronic bacterial infectionsi<

Sorry if this something you've already tried. Wishing you all the best with your search for a happy, healthy life. 

H

Also, I know it's the wrong part of Canada but there's a naturopathic clinic in Richmond, BC which I saw on another forum has treated patients with abxi<

http://www.pannaturopathic.com/<

I sent you a private email - just protecting docs is all

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