Author Topic: Demyelination (Read 5461 times)

tryingtostay · « **on:** June 09, 2018, 02:31:50 pm »

Hello all, hope everyone is hanging in there.

Anyone going through Demyelination?

Since march I have been going through a ton of things. It's now early June and I am experiencing severe symptoms of what's been described in MS symptoms. Not saying I have MS but I have an extreme sensitivity to a ton of things, my body burns at the slightest build up of body heat. My brain is going through bad issues. Basically I am in a really bad place. I'm seeing my Dr for my regular CD4 count, etc on the 12th. I've been bombarding him with questions, been to the ER 4 times, etc.

I plan on asking him if my meds are failing, if I have an auto immune disorder, if my liver is ok (had a Blood Urea Nitrogen level of 7 recently, normal range is between 8-22) and if there is Demylenation going on.

I've been Undetectable even before my meds and have been holding steady since. No issues serious issues on them except for the normal side effects. One thing that I am starting to notice that I haven't had issues with before is Anxiety. I really don't want to go on meds for it.

I don't know what could have caused this steep drop in health but everything is looking like Myelin Sheath issues. I know inflammation is a cause, as well as a Virus, which HIV can cause but how can something like this happen at a fast rate? We're talking about a 3 month period.

I have some crazy theories, if anyone would like to entertain them I'd be willing to share.

Jim Allen · « **Reply #1 on:** June 09, 2018, 03:43:57 pm »

Well I am sorry to hear you have been feeling unwell and I hope you feel better soon.
Hopefully the doctors can work it out soon for you.

Jim

tryingtostay · « **Reply #2 on:** June 09, 2018, 03:45:36 pm »

Thanks Jim.

tryingtostay · « **Reply #3 on:** June 10, 2018, 11:51:45 am »

Nothing official but I think Demyelination is a result of severe Immune responses. I took a 50mg Zinc tablet this morning and it threw me into those severe symptoms that ended me up in the ER 4 times. My heart started racing, I felt swollen, I got dizzy, my mouth went dry. That sounds like a blood stream suffocation from a flood of immune cells. My last lymph count was 47.9 less than a week ago. What scares me is that this episode was almost as severe as the others months ago but what has helped this time is in the past 2 days I've been supplementing nutrition that supports repairing the myelin sheath, which has shown immediate improvement from the side complication of Demyelenation.

This has never happened to me before. What I did during the past 2-3 months was briefly take a testosterone booster with Cordyceps Extract in it but how does something like an issue from that get diagnosed?

sorry if this seems like a personal blog, sometimes i feel it helps to reflect on my writing to keep exercising my view of my reader/listener audience

tryingtostay · « **Reply #4 on:** June 16, 2018, 11:31:01 am »

I asked the Doctor back in Aug 17' to take my Testosterone level and my result was 250. My range for my age group is 200's to 1000. While I was in the ER mid April 18' I asked the Dr to get another reading of my Testosterone and the results were 160.

Two things. Is this bad and why could it be dropping like this?

I'm kinda wondering why my ID Dr hasn't said anything to me about this, also.

Jim Allen · « **Reply #5 on:** June 16, 2018, 12:32:22 pm »

Testosterone levels are not part of standard screening/checkups at least not in my nation, so it could be your id doc is not checking this.

Testosterone drops for a number of reasons including age and is seen more commonly under people living with hiv

Maybe someone else can add something to this or some insights, I've added two more recent links on the topic

Jim

https://www.verywellhealth.com/hiv-and-testosterone-deficiency-49619

https://www.poz.com/article/low-testosterone-common-among-men-younger-50-hiv-meds

tryingtostay · « **Reply #6 on:** June 16, 2018, 01:08:46 pm »

Thanks for the link's Jim

I have heard that Meds do lower Testosterone levels in HIV + men on AVT. Coincidentally those numbers were drawn after I stopped taking that Testosterone booster with the ingredient that supposedly magnifies the side effect of Meds, according to the Pharmacist. If it does indeed amplify the effect of side effects of the meds then logically it could be assumed that relating matters from AVT would also be effected, thus a drop as shown from my test in April of 160. Does that make sense? Everyone is different but if the average drop rate of testosterone over an 8 month period is less than 100 then it would be safe to assume, no?

Jim Allen · « **Reply #7 on:** June 16, 2018, 03:00:56 pm »

Not sure, my understanding is regardless of hiv treatment people living with hiv have higher levels of testosterone issues or that is my personal take away from the studies over the years.

I would say your levels are on the lower total testosterone level side but they were to start with at 250 but even this recent measurement is not shockingly low of course you should talk to your doctor, measure the free testosterone levels.

The good news I suppose is its not the end of the world stuff either way as you should be able to treat testosterone depletion if it is needed .

How are you feeling btw ? Any better since you opened the thread?

Jim

tryingtostay · « **Reply #8 on:** June 18, 2018, 12:22:23 pm »

Hey Jim, thanks again for asking

I am not doing much better, and of course I am researching as much as I can, and things are starting to make sense. I was under 100vl when it was confirmed that I had contracted HIV in early Feb 2014. In OCT 2013 I when it for an appendicitis and during the triage the nurse did a antibody HIV test, and told me I was +. I was in so much pain I disregarded it and basically was in denial. I underwent the appendectomy procedure. Anesthesia and all. Never felt quite right after that. Then in Feb I went for an HIV testing. 3 consecutive tests and the administrator set me up for the Western Blot test. Over a year my VL was Undetectable without meds and my CD4 was 1400-1500 range. I had controllable anxiety and it wasn't debilitating. I accepted that it was from the infection. 2016 I got on meds. Numbers reflecting a very well managed infection. Neurological issues were steady. March 2018 I went in for a minor procedure on my rectum/colon, again going under with Anesthesia. I came out feeling more out of it, and over the past 2-3 months my anxiety has shot through the roof and it's become literally debilitating. I've been researching the complexing issues I've been going through and am narrowing it down to the Anesthesia using up the B12 stored in my body.

http://www.b12-vitamin.com/anesthesia/
https://anesthesiology.pubs.asahq.org/article.aspx?articleid=1949600
https://www.ncbi.nlm.nih.gov/pubmed/8250714

I specifically told the Dr I did not want to go under and we agreed upon a local anesthesia and so a local anesthesia was administered. As the Dr started she told the anesthesiologist to administer me "1" next thing I know I went under. I came out feeling odd (odd means dizzy, weak, anxiety, etc etc.) and my symptoms stem from issues of Demyelination like Anxiety which is now debilitating, generating body heat burns my body, acidic things like orange juice or any type of vitamin C (lemons etc.) will burn my body on the inside, sensitivity to heat, dehydration issues, etc. I am in my 3rd month since this and it doesn't seem to be letting up but now I've started supplementing B12 Cyanocobalamin 2500mcg 2-3 times a day and it does temporarily slightly reduce the anxiety. At night I take one to help me get a full nights sleep. It's been 4hr stretches then I would wake up, with the B12 I can get 8+ when my body needs it.

tryingtostay · « **Reply #9 on:** June 18, 2018, 01:00:04 pm »

Addendum:

The reason I included info about my VL and my CD4 is because early in the first year of my infection I was going through nephropathy throughout my whole body. Neuropathy in people with HIV usually is associated with scenarios none like I have. This brings contrast to the questioning comparison of my HIV infection VS the recent developing issues after anesthesia from my most recent to the Oct 2013 appendectomy procedure. The latter being the most revealing.

Life doesn't change that much in a 3 month period to be called 'getting older' imo this definitely has something to do with the anesthesia.

tryingtostay · « **Reply #10 on:** June 19, 2018, 10:25:49 am »

In-case anyone is reading this searching for answers, what I came to was something called Pernicious Anemia aka Addison's Anemia: https://pernicious-anaemia-society.org/symptoms/

The first 3 sections of symptoms I have every one of them, gastro 2 of them (not the diarrhea) 'other reported' slight hair loss, vision problems, and incontinence. The last one, which is not diagnosed but symptoms described in Diabetes 1) I've had a sweet smelling urine on and off months before my minor procedure.

Hopefully I can turn this around within a few months time. I might have to get shots the rest of my life but ? B12 ? it's better than anything else I would imagine. Currently, without a diagnosis, I have been supplementing B12 as I've mentioned before and it's working. The first day I didn't have serious depression spells.

Jim Allen · « **Reply #11 on:** June 19, 2018, 10:35:34 am »

Well i'm glad your feeling better regarding the depression.

I would continue to work with your doctor, deficiencies can be checked and treated accordingly and its important to get any issues down on record. Also the dangers of self-diagnosis jump to mind.

Take it easy

Jim

mecch · « **Reply #12 on:** June 19, 2018, 11:03:28 am »

Hello

I'm reading alot in this thread about you researching ant suspecting and self diagnosing tentatively etc etc, and not so much about you going to doctors and what they are doing and investigating and what they say you have as health issues. Has any doctor diagnosed any of these things you are suspecting?

Some of what you are describing through your own words sounds so serious and painful and worrying, that the absence of your reporting to FORUMS what doctors say about all your theories - leads to the question.

What have doctors confirmed, and on the other hand, what have they specifically said you do not have?

If you are this sick, I would hope you are seeing a doctor all the time. What do they say?

tryingtostay · « **Reply #13 on:** June 19, 2018, 12:42:06 pm »

Thanks Jim & mecch.

I am going to continue to work with a Dr about it, I'm going to talk to a GP about this in July. And then I have another appointment with a GI Dr 3 days later. Honestly if the GP doesn't diagnose it I am content knowing that the B12 is helping now. What I'm milling over is how do I walk into the GP office and tell her what's going on? Do I do a brief history of events? Do I walk in and say 'Hey I think I have Pernicious Anemia' I've told my ID Dr about most everything in the first 3 sections of the symptoms that are listed and he said "You're all over the place" Remember I didn't know about Pernicious Anemia and it's symptoms until yesterday. He jumped on the Dizzy symptom and did a test laying down and standing up taking vital readings. I told him about the urine smell a while ago and he said "I don't know." That is literally what he told me on some of the things I've been asking him about. Hence why I reached out on here.

tryingtostay · « **Reply #14 on:** June 19, 2018, 01:49:05 pm »

The required type of B12 is the Methyl kind, for B12 Deficiency.

mecch · « **Reply #15 on:** June 19, 2018, 03:08:41 pm »

tryingtostay - you can make a list of questions. Keep a diary of your daily health concerns. Keep it very brief. Bring these when you see a doctor. Do not expect them to to answer every question at the first meeting.
If your doctor said you are all over the place, my interpretation of that, is perhaps you are over investing in self-monitoring, research and self diagnosis.
Really I would encourage you to dial that all back down and just keep a diary and write down your questions. You are not a doctor or a scientist, are you? Why not save these questions and suspicions and ask a doctor. They are qualified to answer. Also, when they answer, try to have confidence in their expertise.

It is important to advocate for yourself with health care providers but also keep a balance because they are the experts and they are authorised to diagnose, or not diagnose, and treat, or not treat. All your research isn't going to mean much to the experts, who have this power.

tryingtostay · « **Reply #16 on:** June 19, 2018, 05:44:03 pm »

Thanks mecch

Yup, I did keep a log of the things I was going through that I brought up to the Dr. and I will continue doing so.

harleymc · « **Reply #17 on:** August 02, 2018, 09:05:33 pm »

One of the issues that comes up regularly is that we are non experts but that we get tempted to rely on Doctor Google, instead of our health care professionals.

I am not questioning your symptoms but wondering how you are drawing conclusions,
" My heart started racing, I felt swollen, I got dizzy, my mouth went dry." you came to a conclusion but that cluster of symptoms is often associated with anxiety / panic attacks. So immediately jumping to another cause without any evidence is uncalled for. Just note symptoms and let your health professionals deal.

tryingtostay · « **Reply #18 on:** August 02, 2018, 10:17:46 pm »

I had surgery back in March, and the pain has been very bad. There are a multitude of issues that I'm having from it. The pain and stress was giving me tachycardia, my electrolyte balance was extremely sensitive, I had inflammation that went up into my stomach that is putting pressure on my liver. This threw my body off pretty bad. I'm still going though it. I can't sit on a hard chair for more than 15 min before the stress starts to hit me again and my heart races. My heart hasn't hit tachycardia type numbers since June but if I strain myself I can be stuck to laying on the couch or my stomach like I have been the past week.

I believed there was an issue from the anesthesia. I didn't research anesthesia enough but all the while I was requesting what was used on me for the procedure.. it was a 'twilight' so no Nitrous Oxide was used. I dove really deep into the Nitrous Oxide 'Laughing Gas' info and came across some pages that discussed Pernicious Anemia, B12 deficiency, etc. It took 4 months until I learned it was a twilight, and a GP told me and explained to me the results of the blood test readings and what result looks for abnormally large blood cells, my blood was normal with no abnormally large red blood cells which is megaloblastic anemia. My ID Dr explained things. So after that I started looking back to the surgery. The dizzyness occurs when the pain and stress hit me, it drives me into anxiety further. I do have mild anxiety from the pain and stress from the surgery but it hits me hard when things are aggravated. Simple things like walking is enough to aggravate the area.

What my ID Dr told me was anxiety but he was contributing it to the HIV which I know hasn't been the issue cause all my issues started right after the surgery. I personally do not want to get on anxiety or depression meds. For a while like late June early July I've been doing 5 miles a day, walks, and they have helped in the areas of anxiety and depression. But my ID Dr didn't mention anything about the surgery causing pain still, didn't explain that if there is any aggravation or bruising to that area that symptoms could last anywhere from 6 months to a year. I went to a GP and she told me that. I also seen a GI Dr. The GI Dr said if any nerves are aggravated the pain won't always be localized but can shoot anywhere throughout the body. Those two Dr visits helped me alot.

I believe there are other issues going on but I'm going to wait a full year or until the pain and stress stops to narrow it down.

bocker3 · « **Reply #19 on:** August 02, 2018, 10:45:21 pm »

Exercise can do wonders to help with anxiety, but something else that might help you would be to STOP looking for things on the internet to explain your symptoms.

You are looking for things and finding them because symptoms can be caused by many things. Generally, they are not caused by rare things like pernicious anemia or megaloblastic anemia. For the record -- "abnormally large blood cells (I'm assuming you mean red blood cells) do not automatically mean megaloblastic anemia -- in fact, they generally mean something else besides that, as it's rare. I worked in a clinical hematology lab for many years, so I'm speaking from experience. I'm also not sure why you think your ID doctor should be the one telling you what to look for from a back surgery??

Take a break from trying to self-diagnose your ills and try to live your life. Google and the internet are such double-edged swords -- they can be so helpful and also can be downright dangerous.

I'm not a doctor, but I agree with harleymc - alot of your symptoms could be caused by anxiety. Then worrying about all these other "what ifs" could be making that even worse. Anxiety is a medical issue -- if it is impacting your life, why would you not want to try medication? There is a saying I learned in AA -- "if you keep doing what you've always done, you'll keep getting what you've always gotten."

I hope you can sort this all out, with your doctors, and I hope it is not anything serious, but you really do need to do yourself a favor and take care of yourself. Staying away from Google, might be a great first step!!

Hugs,
Mike

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Author Topic: Demyelination (Read 5461 times)