Denied treatment in the UK need to leave my country again.

[SK2018]

So I might have mentioned before a immunology specialist said that by injecting HSV 2 glycoprotein GD 2 or deactivated virus I could stimulate my body to make correct HSV 2 antibodies and finally process this ignored infection in the hope of calming the B cells down.

It's hard to find this glycoprotein GD 2 any tips ?

In the case I can't find it ,what might work is during a next HSV 2 outbreak (hope it comes soon) "can't believe I just said that" i could collect some of the virus filled pus from the bump and leave it in a test tube for 30 minutes until it is "dead" as HSV can't live outside the body in air for more than 10-15min and then I can inject the dead virus into my bloodstream,this should stimulate the same immune response as a real virus,well not sure as it won't be able to replicate once inside the body so perhaps it's not enough to stimulate a response but it's worth a try.

This might sound far fetched but the logic and theory is sound.

Actually I could inject live virus and get viremia and that would assure antibody production ,..more risky ,but i think my HSV 1 antibodies which can bind to type 2 my tough T cells and some acyclovir antivirals at the same time would negate any risk and the gain would be greater.

This virus caused my autoimmune ME style disease ,it was missed and not processed and antibodys are not being made for it so obviously something is wrong and it's a hidden occult infection that's driving my B cells insane as they can't get to it in the sensory nerve cells.

Well it's time I let them encounter it.
I'm determined to beat this so I'll go to any lengths as long as it's not too risky.

 

[Gingergrrl]

So I might have mentioned before a immunology specialist said that by injecting HSV 2 glycoprotein GD 2 or deactivated virus I could stimulate my body to make correct HSV 2 antibodies and finally process this ignored infection in the hope of calming the B cells down.

@Shawn I have never heard of anything like this and am confused how they know it is the HSV-2 vs. another virus that led to your B-cells producing the auto-antibodies? Do you not also test positive for EBV or other viruses? I wish I knew enough to even have an opinion on this. Nothing like this concept has ever been mentioned to me by any doctor (vs. IVIG, immune suppressants/modulators, Rituximab, etc). Is there any research on this kind of technique? I would be scared to inject the virus into my body!

 

[SK2018]

@Shawn I have never heard of anything like this and am confused how they know it is the HSV-2 vs. another virus that led to your B-cells producing the auto-antibodies? Do you not also test positive for EBV or other viruses? I wish I knew enough to even have an opinion on this. Nothing like this concept has ever been mentioned to me by any doctor (vs. IVIG, immune suppressants/modulators, Rituximab, etc). Is there any research on this kind of technique? I would be scared to inject the virus into my body!

1:my Neuro immune illness started 10 days after getting this "Neuro" dwelling virus
2: my autoimmune symptoms get worse during HSV 2 out breaks
3:my body did not make normal HSV 2 antibodies despite making correct ones for everything else


Speaking of that I am having an outbreak right now ,how ironic after I hoped for it in my previous message.looks like I have a chance to put my plan in action.
My outbreaks are mild just redness and a tiny spot nothing more.


I have had EBV since I was a kid ,great virus for me not even a slight issue ever I was the picture of perfect health with my fully "dormant" non reactivating EBV.Non related

 

[Gingergrrl]

3:my body did not make normal HSV 2 antibodies despite making correct ones for everything else

How did they figure that out? Is there a test that shows if someone is making normal vs. abnormal antibodies? I am really curious about this issue and am not doubting you at all. I just want to learn more!

Speaking of that I am having an outbreak right now ,how ironic after I hoped for it in my previous message.looks like I have a chance to put my plan in action.

How ironic and keep us posted.

I have had EBV since I was a kid ,great virus for me not even a slight issue ever I was the picture of perfect health with my fully "dormant" no reactivating EBV.non related.

I was just using EBV as an example and meant that it could be any virus in theory. I had very severe EBV/mono at age 41 but won't bore you with the details!

 

[SK2018]

How did they figure that out? Is there a test that shows if someone is making normal vs. abnormal antibodies? I am really curious about this issue and am not doubting you at all. I just want to learn more!

REPLY
Well obviously if I have the virus and it's non reacting with standard reactivity tests and coming back "negative" then there are either no antibodies been made to it or abnormal ones.I made antibodies to everything else except this virus

How ironic and keep us posted.

I was just using EBV as an example and meant that it could be any virus in theory. I had very severe EBV/mono at age 41 but won't bore you with the details!

 

[Gingergrrl]

REPLY Well obviously if I have the virus and it's non reacting with standard reactivity tests and coming back "negative" then there are either no antibodies been made to it or abnormal ones.I made antibodies to everything else except this virus

@Shawn Thanks for explaining and sorry for my slow reply. So you had the HSV-2 virus based on symptoms (vs. test results) and then your test results were negative for antibodies vs. other viruses in which you made antibodies? If so, then I get it now.

My case was the opposite in that I never had any symptoms to HSV 1 & 2, and have never had shingles, yet I was testing IgM positive for HSV 1& 2 and to VZV for many years (vs. with EBV, I'd had acute/severe mono in 2012 so was not surprised when I continued to test IgM positive for EBV). It was very strange. And then it all shifted into autoimmune problems and I tested positive for all the weird auto-antibodies. I still struggle to understand it all!

I hope your treatment is going well. Thanks again.

 

[SK2018]

@Shawn Thanks for explaining and sorry for my slow reply. So you had the HSV-2 virus based on symptoms (vs. test results) and then your test results were negative for antibodies vs. other viruses in which you made antibodies? If so, then I get it now.

My case was the opposite in that I never had any symptoms to HSV 1 & 2, and have never had shingles, yet I was testing IgM positive for HSV 1& 2 and to VZV for many years (vs. with EBV, I'd had acute/severe mono in 2012 so was not surprised when I continued to test IgM positive for EBV). It was very strange. And then it all shifted into autoimmune problems and I tested positive for all the weird auto-antibodies. I still struggle to understand it all!

I hope your treatment is going well. Thanks again.

Sounds like another form of immune dysfunction.Have you considered Rituximab to get rid of memory B cells?

 

[Gingergrrl]

Sounds like another form of immune dysfunction.Have you considered Rituximab to get rid of memory B cells?

Yes and I am seriously considering RTX for mid 2017 after I complete the six months of high dose IVIG. My doctor and I will reevaluate everything at that point so too early to predict for sure what will happen yet.

 

[SK2018]

Yes and I am seriously considering RTX for mid 2017 after I complete the six months of high dose IVIG. My doctor and I will reevaluate everything at that point so too early to predict for sure what will happen yet.

TBH I wouldn't waste time side effects and money on 6 months of high dose IVIG ,you seem to have a chronic autoantibody problem it is NOT going to to away with IVIG as IVIG does not address antibody secreting plasma cells or memory B cells or in fact any B cells..

It would be far more prudent IMO to jump straight to RTX in terms of avoiding unnecessary doses of IVIG which carries risks esp if done for 6 months.one 750mg RTX infusion could achieve more than 6 months of IVIG.

Contact Jonathon Edwards if you want a true expert opinion on this ,I am talking from personal experience ,what specialists in the field have told me and my knowledge of the mechanisms about autoimmunity

 

[Gingergrrl]

Thanks @Shawn but I have had more improvements from IVIG than I have had in 3+ years of trying all other treatments all combined. For whatever reason, it is working for me. I cannot explain how or why and I know it is not for everyone but the autoimmune/neuro dosing of IVIG has been amazing for me. Am not trying to promote it for anyone else, it just is working in my own case. I don't see it as IVIG vs. RTX but rather as two things that can be combined together and each play a different role.

 

[justy]

Thanks @Shawn but I have had more improvements from IVIG than I have had in 3+ years of trying all other treatments all combined. For whatever reason, it is working for me. I cannot explain how or why and I know it is not for everyone but the autoimmune/neuro dosing of IVIG has been amazing for me. Am not trying to promote it for anyone else, it just is working in my own case. I don't see it as IVIG vs. RTX but rather as two things that can be combined together and each play a different role.

Hi Ginger, ive purposefully not been contacting you, because I know you are super busy with treatments et, but just wanted to ask - while I wait for your long post that you keep promising us - what improvements you have had. so totally happy to hear its working though. I remember a time when you were ready to give up, but you kept on trying, and kept on researching. you are such an inspiration.

 

[Gingergrrl]

Hi Ginger, ive purposefully not been contacting you, because I know you are super busy with treatments et, but just wanted to ask - while I wait for your long post that you keep promising us - what improvements you have had. so totally happy to hear its working though. I remember a time when you were ready to give up, but you kept on trying, and kept on researching. you are such an inspiration.

Thanks, @justy and I absolutely do not mind if you contact me! I feel bad that I have not been able to post a detailed update and still plan to. My next cycle of IVIG is this Th, Fri & Sat and I've been wanting to post a thorough update explaining the whole process, what has 100% improved, what has partially improved, and what has not yet improved at all, etc.

I've been wanting to find a block of time to write about it and just have not had a chance. I don't want to derail this thread b/c I want to keep the focus on Shawn and also want what I write to be easily findable if someone did a site search of PR. But am happy to share via PM until I get a chance to write it all out. I've been dealing w/another issue (separate from IVIG) that has been extremely time consuming/challenging and have not been on PR as much as I used to although I still try to check it every day or as much as I can.

 

[Leopardtail]

Beating on sick people when you know they are sick is a hate crime. The media and police may both be interested. Its a shame you were not in a state to report it immediately.

I would suggest he pick up the phone and report it on 111. The video footage may only be kept for a week, depending on the system and hospitals do 'lose evidence' when it's convenient.

 

[Leopardtail]

Dear Shawn,
I can understand your anger but I thin it may be sensible to consider the other side of the argument before wasting money on legal fees. Legal redress for assault does seem appropriate but there is no point challenging your medical care.

Remember that the NHS is simply a compulsory universal insurance system. Everyone pays in on the assumption that money will be used to pay for treatments of demonstrated benefit. If money could be used on a free for all try this or that on a whim approach the system would obviously collapse. The British people have opted for this sort of insurance. If people want something else they have to pay for it, just as in China.

It looks from the discharge sheet that it is accepted that you may have an illness due to NMDA antibodies. If that is the case then within the NHS the right thing would be for you to be treated by an expert in the field and you have been referred to such an expert of Queen Square. So I think it is hard to suggest that you have been denied treatment - you are being offered what is likely to be the one of the best opinions in the world.

I agree that a month delay in the appointment is unacceptable, but that reflects the British public's decision to pay less into the NHS than it needs. It is not the fault of people in the NHS I can assure you - they all want to be able to see people quicker. I agree it may be the fault of politicians who refuse to put up taxes despite the people wanting more money to go to the NHS but that is still not the fault of the people actually providing the service.

I think it is worth considering the options in detail. You have been offered some prednisolone, which seems reasonable as a stop gap. I would certainly not recommend using cyclophosphamide as it is carcinogenic. If you have an NMDA antibody associated illness the chief aim is to deal with it long term. Immediate therapy might be relevant if there was evidence of ongoing tissue damage, but from what I can see that is not the issue. The issue is your symptoms. Plasmapheresis is a quick way to deal with ongoing damage but is totally impractical as long term management so it would seem to me not to be a sensible thing to persist with. Moreover, it seems that you are still very unwell, suggesting that the plasma exchange you have had has indeed had no lasting benefit.

Rituximab might be a logical approach to a long term solution in this situation. However, it sounds as if you have had rituximab within the last three months and have got worse recently rather than better. To work out what that might mean one would need to look at B cell numbers and have familiarity with rituximab usage. Very few physicians understand this so referring to Queen Square seems very much the right decision.

So in short I agree that a month wait is unacceptable but I doubt it will make a lot of difference to the long term possibilities and it is long term management over a period of years by a world expert that you need, not tinkering by someone ready to sell you this and that. The Oxford lab is the best in the world, as is the clinical expertise that goes with it, which overlaps with Queen Square. If there is good reason to think that you would benefit from long term management with something like rituximab you would get it from this service - and for free. It would be cheaper than plasma exchange anyway.

I take on board your argument about resource allocation. Looking at the tone of that discharge sheet, the spelling errors etc. To me it looks like it was written by somebody in a rage. The behaviour of the security guard stregthens that suspicion.

I also noted the ownward referral and that a fair number of scans had been offered.

For him to dismiss the conclusions of doctors who'd spent real time with a patient having spent moments with him is not professional. It would likely be negligent in many countries but is an all too common arrogance in our country. Sadly Britain does not have effective legal protections against medical negligence hence I agree it is likely to be an expensive waste of time.