11 Jun 2019
Author
tuftyone
Title

Good news ...and not so good news

Body

Well I’ve had a positive result for CPN. I convinced my gp to take the bloods for me to send to a German lab. He said last year that he wouldn’t be able to prescribe the abx for me if it turned out positive though and I’m due to see a different doctor who may be more open to things (the practice manager lives next door to me and suggested this doctor). 

The problem I have is that I’m becoming increasingly sensitive to all chemicals and this would explain the tachycardia I experienced last year when taking the abx from India.

Comments

Markus83

12 Jun 2019 04:57 pm

I wouldn't take ABx from India. You don't know for sure what is in it. Don't you have Lyme doctors in UK? They often are familiar with long term combined ABx.

Sarah

12 Jun 2019 07:10 pm

Markus, many abx prescribed in this country are made in India.

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.

Markus83

14 Jun 2019 12:11 pm

Sarah, I know this, as most medicine in the pharmacy comes from countries like India. But it goes the "right" way with quality checks and so on. I think self-buy pharmacies might deal with illegal stuff and poor or no quality checks. I suppose self buy pharmacy is illegal in our countries - isn't it?

I told tuftyone the name of my doctor in Germany. From London it's per flight 1 hour or so and then from the airport to the doctor 1,5 hour. So if he saw the doctor once, he would do the follow up via email contact in the future. I would prefer it this way. But you need money for flight, one night in hotel and money for the doctor and maybe for additional labs. So tuftyone has to make his own decision if that's worth for him.

Sarah

14 Jun 2019 02:50 pm

Markus, some do, I know, but I only give addresses from Kosher places. In both my country and yours, I thought, we can buy stuff online and we receive it on payment of customs checks, which wouldn't happen with illegal stuff.

That aside, I am very glad that you gave Tufty the doctor's address, so that he can decide which way to go.  May I point other people in your direction for the same information?

Sarah

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.

Markus83

14 Jun 2019 03:20 pm

Sarah, I'll write you a PN with the address of my doctor, so you can give it to whom you want. He's specialised in Lyme and co-infections and very often uses the Wheldon protocol anyway (although he has probably never heard of DW, but came to the same conclusions like David regarding persisting infections). My doctor has many patients from different european countries. Once I met a patient from London in the waiting room, it seems not so a huge travel, if you take one night in Germany. Some stay for weeks to do iv-antibiotics for the first and later switch to oral. That's useful in Lyme disease but I think you don't need it in case of Cpn.

Maybe interesting to know, we have a very good lab in Germany for immunological and infectious stuff called "IMD Berlin". You can send blood from other countries as well, that's were tuftyone did his testing (and his test came back positive - he showed me).

If someone thinks to go to my doctor, you can contact me via PN or email. I can point you to a cheap hotel (50 €/night) right next to the city hospital. I can tell you also how you come from the airport to the doctor.

neenavyas

14 Jun 2019 04:43 am

Dear Markus,

I live in India and use India made medicines. Let me assure you for whatever it is worth, India made antibiotics very safe. Our pharma industry is top class and our medical facilities also world class although with this big populatipon everything in short supply -- doctors hospital beds and so on.

Sarah will also tell you many have done the Wheldon protocol using antibiotics from India and as far as I know from this site, no one had any problems with the quality of the medicines.

Of course if you can get the stuff you need locally, nothing like it.

Neena

 

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

boadicea

12 Jun 2019 05:10 pm

No, Markus, unfortunately we don’t have Lyme doctors who prescribe abx in the UK.  People have to travel overseas, or self treat, or try alternative treatments or remain ill.

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

tuftyone

17 Jun 2019 01:23 pm

 I’m very grateful to Marcus83 for helping me obtain the tests from the lab he recommended. I’ve switched gp now and have an appointment tomorrow morning, I doubt he’ll be able to prescribe the abx, but at least I’ll have had a conversation about it and he’ll know if I choose to get them from India and maybe monitor me, especially if my pulse goes through the roof again 

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

tuftyone

18 Jun 2019 08:45 am

Just had my first appointment with my new GP. Very refreshing! He is very open-minded and we actually had a very good conversation. He has prescribed the antibiotics for me! 

 

 

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

neenavyas

18 Jun 2019 10:15 am

Tuftyone

wow that should solve your problem related to sourcing of antibiotics. Congrats and best

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Sarah

18 Jun 2019 11:20 am

Tufty!! What good news! Do you know what pushed him/her in that direction?

Even when David first started this, very few GPs would go along with it.  Mine did for a while, but eventually annoyed me to much when she queried if I was sure that I needed a new prescription of roxithromycin.  Then I started to source stuff from India or Thailand.

I'm guessing that maybe there has been such bad news recently about Lemtrada/Campath, with one of the possible side-effects now being death, forward thinking doctors ae realising that something has to be done.

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.

ElizabethAnne

19 Jun 2019 04:03 am

That's interesting, Sarah. Yesterday I got in touch with an old friend from NZ whom I'd lost contact with. She's a neurologist.

She asked how I was, and I told her I'd started antibiotic treatment and the effects were excellent. I was playing it carefully - haven't seen her for 20 years and didn't want to freak her out.I didn't mention CPn or CAP or Wheldon protocol.
She replied saying that was wonderful that I was trying the 'new' treatment and hoped I'd have years of relief.  
I wonder what 'new treatment' she was thinking of? She didn't pick up on the fact I'd said antibiotics. Was it Lemtrada maybe?

Cheers,

Lizzie
 

Elizabeth Anne

Sarah

19 Jun 2019 11:38 am

Lizzie, if she is a neurologist the first thing that springs to mind is that it is Lemtrada, although since he news came out in October about bleeding into the vein, strokes and death with a few people, I don't think anyone is now prescribing it.

On the other hand it could be the Redhill trial in Tel Aviv which does involve antibiotics, but these tried and tested abx have been combined into a new mix, taken all in one go, as one capsule.  Effectively a new medication so more money for big-pharma.

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

18 Jun 2019 01:51 pm

I think he’s slightly rebellious and has been a doctor for so long he feels able to use his own judgement. I have a clear diagnosis and like he says, there’s no reason to not see if the abx work. 

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

Sarah

18 Jun 2019 03:43 pm

Speaking as a former member of The Tufty Club, I think you have found an excellent GP! A pity a few more of them don't think that way!

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.

11 Jun 2019
tuftyone