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Author Topic: Introduction - Bucklandbury  (Read 2250 times)

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Offline Bucklandbury

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Introduction - Bucklandbury
« on: July 03, 2021, 07:11:28 am »
Hello, everyone.

I am a 51-year-old cis male in America.

I got my first COVID vaccine (Pfizer BioNTech) in mid-March, 2021, and my second dose a month later as required. The problem is, I was diagnosed with AIDS in mid-March as well (CD4 nadir was 60). By mid-April, my CD4 count had risen to 258 or so - after starting Biktarvy (and Bactrim). At my first blood draw (12 vials - ugh), my VL was 1.5 million copies per mL.

I am now concerned that I may not have developed antibodies to COVID from my two inoculations, and I have just approached my PCP about the issue. My ID MD seemed to think I would be OK as I asked her point blank earlier last month at my third visit with her (my CD4 had risen to 311 - and I had achieved an undetectable VL).

What got me thinking was this article:

https://www.npr.org/sections/goatsandsoda/2021/06/28/1011043650/the-key-to-ending-the-pandemic-may-be-protecting-immunocompromised-people

How likely is it that any vaccine I received at the time might not have been effective due to my low CD4 counts?

Thank you.
« Last Edit: July 03, 2021, 07:19:49 am by Fagradalsfjal »

Offline Jim Allen

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Re: Introduction - Bucklandbury
« Reply #1 on: July 03, 2021, 08:14:37 am »
Hiya,

Welcome to the forum, sorry to hear about the diagnosis. As you are new to the forum, I have moved your post to work as your introduction thread.

About the vaccine, the result mentioned in the publication was not unexpected. Sometimes, a vaccine does not take in an individual, even when they belong to a healthy group without co-mobilities.

Currently, the effectiveness under the group with low CD4 counts is not explicitly known yet. We know that sometimes this group (may) have a slightly weaker response to certain vaccines, although, it should be expected to provide some level of protection to the group, given what we learned from other vaccines of similar types and vaccination is recommended.

There is already talk of a booster vaccine in the future for everyone. In the meantime, keep your guard up, mask as needed, washing hands, distancing etc.   ;)

Quote
I was diagnosed with AIDS in mid-March as well (CD4 nadir was 60). By mid-April, my CD4 count had risen to 258 or so - after starting Biktarvy (and Bactrim). At my first blood draw (12 vials - ugh), my VL was 1.5 million copies per mL
.

You will get used to the vampires taking your blood and glad to hear you started treatment.

How are you feeling/doing otherwise?

Best, Jim

https://www.who.int/news-room/q-a-detail/coronavirus-disease-(covid-19)-covid-19-vaccines-and-people-living-with-hiv

https://www.aidsmap.com/news/jan-2021/cd4-count-below-350-increases-risk-severe-covid-19

https://www.avert.org/news/emerging-evidence-covid-19-and-hiv-points-increased-risk-those-low-cd4-count



« Last Edit: July 03, 2021, 08:17:58 am by Jim Allen »
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Offline Bucklandbury

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Re: Introduction - Bucklandbury
« Reply #2 on: July 03, 2021, 11:33:49 am »
Well, I will be honest. I thought I might have scraped by without any undue effects, but in the last 3 weeks or so, I am noticing a tremor feeling in my left - and now right foot. Also in twitching in fingers and some numbness. It is pallesthesia, I believe. My hands feel weird as do my feet, and I am pretty sure this is AIDS-related neuropathy of some sort. Probably small fiber. I will do EMG testing soon.

The only OI I seemed to have had was thrush, which my dental hygienist noticed in March. I have been on Biktarvy - and Bactrim/Dapsone since being diagnosed. I asked to be switched to Dapsone as I thought the Bactrim might have been causing the neuropathy, but it has not helped.

In addition, I have inappropriate sinus tachycardia and some sort of as-yet undiagnosed autoimmune condition (I have developed Raynaud's phenomenon in my hands as well). My sleep is not good (I wake up a lot) and of course, I have a lot of weird dreams - and earlier, nightmares. I see a rheumatologist this coming Wednesday. Last week, a Dexa bone scan revealed I have osteopenia in my lumbar vertebrae. Luckily, both hips are good.

I have diarrhea every morning and *explosive* amounts of gas a lot. More than I have ever had before in my life. I have an LSIL spot on my perianal area and had a fissurectomy last month to correct that rectal fissure. I have some anal leakage now as well.

My platelets, RBCs, and WBCs are low. My PCP does not seem worried. I am not so sure.

I am now HIV undetectable, but my body does not feel like it used to - even in February before my AIDS diagnosis.

To be honest, I am seriously contemplating retiring early and paying the IRS penalty on my money to do so. Yesterday, my feet and legs hurt a bit, and it really put me off. I have now told my boss's boss I was diagnosed with AIDS. The stress at my job is a lot.

Luckily, my partner of 29 years has stayed with me. We do not have sex - we have not in any form (even oral) in many years.

I know I was negative in Oct. 2017, but as I got HIV in my very late 40s at some point subsequent - and before March 2021 - I realize must be one of the unfortunate quick progressors. I was noticing some fatigue toward the end before my diagnosis, but that was really it. Maybe a sore throat or two.

I read about HIV-related inflamagging, increased epigenetic aging, increased cancers and heart disease of all types, dementia, and I am saddened. My CD4 nadir was 60 as I wrote earlier, and I was diagnosed at nearly 51. Those are not good long-term indicators for immune recovery, I read. I was in great health before - not a single pill other than a multivitamin - a vegetarian since 1990, never smoked or drank. And today I feel frailer than I have ever felt. I am very scared and demeaned. For years, I have walked 10 to 15,000 steps a day.

I wish I could be more upbeat, but there is a lot going on, and I am quite shaken.
« Last Edit: July 03, 2021, 11:45:06 am by Fagradalsfjal »

Offline Grasshopper

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Re: Introduction - Bucklandbury
« Reply #3 on: July 03, 2021, 03:24:17 pm »
I am sorry to read that you are having such a volcanic eruption of complaints/symptoms.
Hope that soon they subside and become manageable/bearable .

Offline J.R.E.

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Re: Introduction - Bucklandbury
« Reply #4 on: July 03, 2021, 04:58:41 pm »
hi,..

Some of the neuropathy type issues you are experiencing, could be the result of Dapsone, and or Bactrim.

In 2003, 18 years after being infected ( and never on HIV meds) , I had 16 t-cells and a 500,000 plus viral load.

In October of 2003 , I was placed on Diflucan, Bactrim and Dapsone, and a couple other meds,  besides being place on Viramune, and at that time separate doses of Epivir and abacavir. ( Epzicom)

It was a very tough period of time.  Sometime around January of 2004, neuropathy set into my hands and feet. It was very painful for about a period of 2 to 3 weeks, to the point where I could hardly push the gas and brake peddles on the car. Somehow, I still managed to work. I don't know how I did it, but did.

The neuropathy, seemed to come on very fast.  And I mean fast.  One day I was fine, and the next day not so fine. Felt as though my feet had fallen asleep. and then then pain started.

Long story short, and only my opinion, I believe it was due to the Dapsone, which also I believe, caused me tinnitus. But that's only my opinion. Or, it could have been caused by longterm untreated HIV infection. Perhaps I will never know.

Here I am 18 years later, I still have VERY, VERY mild neuropathy in both hands and feet. But its not painful, and doesn't restrict me from any daily activities. In fact most days I am seldom aware of it.

But,..... Keep mentioning all of this to your Doctor, to see if any other tests or labs may be necessary.

By the way,, Welcome to the site !


Ray
 

 

Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 5/27/21 tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of May 27th,21,  Viral load remains Undetectable

CD 4 @571 /  CD4 % @ 17 %
69 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

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Re: Introduction - Bucklandbury
« Reply #5 on: July 03, 2021, 05:01:12 pm »
PS,..

Are you off the antibiotics now ?

Ray
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 5/27/21 tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of May 27th,21,  Viral load remains Undetectable

CD 4 @571 /  CD4 % @ 17 %
69 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

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  • Positive since 1985, joined forums 12/03
Re: Introduction - Bucklandbury
« Reply #6 on: July 03, 2021, 05:05:45 pm »
Also,...

As far as the Covid vaccine,.... I would do as Jim stated, and continue to protect yourself when necessary. Best to play it safe !!


Ray

Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 5/27/21 tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of May 27th,21,  Viral load remains Undetectable

CD 4 @571 /  CD4 % @ 17 %
69 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

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  • Positive since 1985, joined forums 12/03
Re: Introduction - Bucklandbury
« Reply #7 on: July 03, 2021, 05:20:34 pm »
Just Curious,...

Did the doctor have you on Prednisone at all, in March ? That was one of the other medications I was briefly on.

Ray
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 5/27/21 tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of May 27th,21,  Viral load remains Undetectable

CD 4 @571 /  CD4 % @ 17 %
69 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline Bucklandbury

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Re: Introduction - Bucklandbury
« Reply #8 on: July 03, 2021, 06:51:52 pm »
Hi, Ray.

I am still on the Dapsone. My ID doctor will likely keep me on it until I see her again in October. Like I said earlier, I was hoping the Bactrim might have caused these weird hand and foot sensations, but they have continued with the Dapsone as well. I do think in general I tolerate the Dapsone better than the Bactrim. Bactrim was not easy for me to take, but I realize for people who do tolerate it better, it gets much higher marks than the Dapsone as far as prophylaxis goes.

No, I was never on Prednisone.

It amazes me you could have had HIV 18 years (!) before starting ARVs. Like I wrote earlier, I might have been infected two or three years tops before I developed AIDS. That is very frightening to me still to think about how quickly I progressed.

I never had these weird feelings until I started meds, which is what is so strange. I will tell you that first month or six weeks after starting meds, I had some very weird zap sensations and other things I would rather forget. It was very rough for me, and it was not a mental creation of mine. One morning early on, I distinctly remember some weird stuff on my face. My skin still does not feel normal in places. I have hot hands a lot, for example.

My PCP keeps wanting to put me on Buspirone or Lexapro. I believe she thinks my anxiety is causing these sensations. That is what I suspect at least. But when I cross my legs, I get skin color changes as well. Like there is some sort of vascular issue going on too. Sometime the whole left side of my left foot looks purplish. Yesterday, it felt like the neuropathy sensations were even traveling up into my legs. In bed at night, it feels like my left foot almost has a slight tremor in it.

Thank you.
« Last Edit: July 03, 2021, 07:05:19 pm by Fagradalsfjal »

Offline J.R.E.

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Re: Introduction - Bucklandbury
« Reply #9 on: July 04, 2021, 10:58:31 am »
Hi, Ray.





My PCP keeps wanting to put me on Buspirone or Lexapro. I believe she thinks my anxiety is causing these sensations. That is what I suspect at least. But when I cross my legs, I get skin color changes as well. Like there is some sort of vascular issue going on too.

Hi There,...

Having never been on Buspirone or Lexapro, I can't really comment much.  While those medications may help with some issues, I believe it's pretty clear, that anxiety, would not cause skin color changes, or purple coloring in the feet.

Hang in there, and keep us all updated, let us know whats going on !

Are you checking your blood pressure regularly ? Does your PCP, squeeze your ankles, and check for pulse in both you feet ?


Ray
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 5/27/21 tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of May 27th,21,  Viral load remains Undetectable

CD 4 @571 /  CD4 % @ 17 %
69 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

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  • Positive since 1985, joined forums 12/03
Re: Introduction - Bucklandbury
« Reply #10 on: July 04, 2021, 11:13:22 am »
PS....

Just going to throw a couple other things out there,.... Have you been tested for Hepatitis ?  Have you had a complete STD scan done, and tested for Syphilis ?

I know you are going through quite a bit, so do whatever it takes to stay on top of your health. It sounds as though, you are already on top of things. At one point I was prescribed Amitriptyline, for my neuropathy.

" Amitriptyline is used to treat many types of persistent pain. It is especially good for nerve pain, such as burning, shooting or stabbing pain, and for pain that keeps you awake at night. Amitriptyline belongs to the group of medicines called tricyclic antidepressants that are also used to treat depression."

"These drugs were originally developed to treat anxiety and depression, but when taken at a low dose they can reduce or stop pain. Amitriptyline works by increasing the amount of serotonin your brain makes."


Ray
« Last Edit: July 04, 2021, 11:15:47 am by J.R.E. »
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 5/27/21 tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of May 27th,21,  Viral load remains Undetectable

CD 4 @571 /  CD4 % @ 17 %
69 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

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  • Positive since 1985, joined forums 12/03
Re: Introduction - Bucklandbury
« Reply #11 on: July 04, 2021, 11:18:53 am »


Also want to state that I was on Amitriptyline, for less than a month.  I cant remember the dose I was on.

Ray
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 5/27/21 tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of May 27th,21,  Viral load remains Undetectable

CD 4 @571 /  CD4 % @ 17 %
69 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline Bucklandbury

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Re: Introduction - Bucklandbury
« Reply #12 on: July 04, 2021, 11:21:17 am »
Oh, yes. I got the full gamut of STI tests, and I guess the silver lining was that I was negative for everything else. In fact, I never had any other STI before getting HIV.

I know my previous PCP told me my foot pulse was nearly a second later than my heartbeat. That was a frightening revelation. I also now have a lot of palpitations. That's why she put me on the Metoprolol - at least in part.
« Last Edit: July 04, 2021, 11:28:20 am by Fagradalsfjal »

Offline J.R.E.

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  • Positive since 1985, joined forums 12/03
Re: Introduction - Bucklandbury
« Reply #13 on: July 04, 2021, 11:28:04 am »
That's why she put me on the Metoprolol - at least in part.

I was on metoprolol as well . Not any more though.  I was also on Lisinipril, (sp) ,  until I was getting a bad reaction from it. I was getting a persistant cough that some get from Lisinipril. It was driving me nuts. So when I stopped taking it, the cough went away.


Ray
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 5/27/21 tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of May 27th,21,  Viral load remains Undetectable

CD 4 @571 /  CD4 % @ 17 %
69 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

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  • Positive since 1985, joined forums 12/03
Re: Introduction - Bucklandbury
« Reply #14 on: July 04, 2021, 11:32:27 am »


I just checked my records,  the Metoprolol was used in replacement of Lisinipril.

Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 5/27/21 tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of May 27th,21,  Viral load remains Undetectable

CD 4 @571 /  CD4 % @ 17 %
69 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline Jim Allen

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Re: Introduction - Bucklandbury
« Reply #15 on: July 08, 2021, 04:36:36 pm »
Hiya,

Sorry to hear that you are feeling unwell. It's not uncommon with OI's & low counts and having to be on those antibiotics to feel worse before feeling better.

It's going to take time to heal and for things to settel.

About the diarrhoea & gas, prehaps trying to apply some of the old BRATT diet might help settle things a bit for now. https://www.poz.com/basics/hiv-basics/nausea-vomiting-diarrhea

I had similar chronic issues though, nothing worked on or off meds, switching meds, diets. I just figured it was damage that never really healed. However, for other reasons, I started to include 500 grams (17 oz) of probiotic yoghurt in my diet and no issues since.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056109/#R6
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Bucklandbury

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Re: Introduction - Bucklandbury
« Reply #16 on: July 08, 2021, 07:28:20 pm »
Actually, Jim, the foot buzzing is what concerns me the most. Plus my hands feel hot a lot. I am not sure what to think of it. The paresthesia is annoying as hell. I am not sure if it is a mild tremor or some sort of neuropathy. I can tell you I did not have these foot and hand feelings before being diagnosed - and starting Biktarvy. My skin changes color with the slightest pressure now. Again, that all started after I started the ARV.
« Last Edit: July 08, 2021, 07:32:06 pm by Fagradalsfjal »

Offline Jim Allen

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Re: Introduction - Bucklandbury
« Reply #17 on: July 08, 2021, 07:41:31 pm »
Look about that one, keep working with your doctor to diagnosis it.

Neuropathy, if there is nerve damage and it could be from HIV itself and if it's bothersome then there are treatments to help manage it. 

Peripheral neuropathy is a health problem I live with myself. It's not too bad for me, it varies from having molten lava poured down the inside/bone with stabbing sensations, and on the lesser scale pins & needles with patches of skin & tissue that I have no or diminished feeling, it took a while to learn to manage and live with.
« Last Edit: July 09, 2021, 02:16:23 am by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Bucklandbury

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Re: Introduction - Bucklandbury
« Reply #18 on: July 26, 2021, 05:05:15 pm »
So the buzzing that was in my left foot is now in my right, and at times while I am sitting, I get a burning tightness that travels up both my legs from the feet.

I had done some research, and I think my height is definitely not a good thing. I am 6' 4" (193 cm). I had read that tallness is a major factor in neuropathic pain in HIV/AIDS. Of course, you recall I also have AIDS, although my CD4 was up to 311 at the very beginning of June.

I have also noticed a major increase in tiny muscle spasms all over my body. And I feel I am becoming depressed. I have thought of things unrelated conditions like MS - not that I want that either. But I think the most likely culprit is the advanced HIV in my case.

I wrote my PCP to see what she thinks. I didn't have this buzzing and pain until June. I started ARVs in mid-March.

Thanks.
« Last Edit: July 26, 2021, 05:31:35 pm by Fagradalsfjal »

Offline Texland

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Re: Introduction - Bucklandbury
« Reply #19 on: July 27, 2021, 05:45:55 pm »
Fagradalsfjal 

Dapsone is a weird drug that can cause a variety of side effects. Some of things you list could be caused by Dapsone. Talk to your doctor to see if there is a better medication you could be taking. It might be worth trying Bactrim again without Dapsone.

Offline Tonny2

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Re: Introduction - Bucklandbury
« Reply #20 on: October 13, 2021, 02:39:56 pm »
I will trade your myalgia/arthralgia for my neuropathy. I am not sure which is worse. 8-)

==

I never get tired of hearing Larry Kramer's "plague" speech. It still sends chills up me to hear it.

https://twitter.com/nowthisnews/status/1265846003627745281

https://www.pinknews.co.uk/2020/05/28/larry-kramer-dies-dead-hiv-aids-speech-1991-plague/


             ojo.           Hi there!Öare you dealing with neuropathy?, I havenít followed your story but, it seems to me you are a newly dxíed member. Was your initial VL too high?. Eventhough we all react differently to meds and hiv also causes neuropathy (no treated it), I wonder if your neuropathy is indeed that bad. Are you taking any med to treat it?ÖIíve been living with neuropathyís pains (get neuropathy and you know all kinds of pains there are) for many years, itís so bad that I even have drop foot and drop toe, both feet, but, I donít take meds for the pain anymore, I have learned to live with it, sometimes it gets so painful that I have to take Vicodin, opioid, but thatís only when I canít handle the painÖI hope you and our Argentinian friend, can find something to easy your pain because, if it is neuropathy, itís here to stay with you.

As far as pharmaceutical companies, if it not were for them, we wouldnít be sharing experiences on here, and letís not forget  there are still lots of people whom donít have access to life saving. MedsÖhugs

Offline Bucklandbury

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Re: Introduction - Bucklandbury
« Reply #21 on: October 13, 2021, 03:00:11 pm »
I don't mean to hijack this thread. I will write you privately, tonny2.

Thank you!
« Last Edit: October 13, 2021, 03:07:39 pm by Bucklandbury »

Offline CircularNatural

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Re: Introduction - Bucklandbury
« Reply #22 on: October 13, 2021, 03:28:36 pm »
I will trade your myalgia/arthralgia for my neuropathy. I am not sure which is worse. 8-)

==

I never get tired of hearing Larry Kramer's "plague" speech. It still sends chills up me to hear it.

https://twitter.com/nowthisnews/status/1265846003627745281

https://www.pinknews.co.uk/2020/05/28/larry-kramer-dies-dead-hiv-aids-speech-1991-plague/

Sorry to hear about your neuropathy. Is there anything you're doing that helps? Have you tried duloxetine / pregabalin ?

That speech is definitely moving, thanks for sharing it so I can listen to it again :)

Big hugs
🇦🇷 "Hope is the only thing stronger than fear."

Offline Bucklandbury

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Re: Introduction - Bucklandbury
« Reply #23 on: October 13, 2021, 06:45:50 pm »
Sorry to hear about your neuropathy. Is there anything you're doing that helps? Have you tried duloxetine / pregabalin ?

Thank you, CircularNatural.

No, I am not on anything for it. I just suffer through it for now.

I am leery of taking pills, I will be honest. I don't want the weight gain, and I don't want to lose my wit. I also have an addictive personality, so I will decline certain things outright for fear of getting hooked.

Interestingly, I also believe parts of my autonomic system are affected. Weird sweating, strange pulses, odd blood pressures, orthostatic pressure drops, weird gastric and bowel things. I figure my doctor will figure it out - or not - and that there's little that we can do. It's not like a heart defect, is it? We get one CNS for our whole life.

I could go on and on, but I would sound like a hypochondriac, so I will stop here. I really try not to dwell on it. I feel for people in chronic pain. I can see how it changes personalities.
« Last Edit: October 13, 2021, 06:53:58 pm by Bucklandbury »

Offline CircularNatural

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Re: Introduction - Bucklandbury
« Reply #24 on: October 13, 2021, 07:12:47 pm »
Thank you, CircularNatural.

No, I am not on anything for it. I just suffer through it for now.

I am leery of taking pills, I will be honest. I don't want the weight gain, and I don't want to lose my wit. I also have an addictive personality, so I will decline certain things outright for fear of getting hooked.

Interestingly, I also believe parts of my autonomic system are affected. Weird sweating, strange pulses, odd blood pressures, orthostatic pressure drops, weird gastric and bowel things. I figure my doctor will figure it out - or not - and that there's little that we can do. It's not like a heart defect, is it? We get one CNS for our whole life.

I could go on and on, but I would sound like a hypochondriac, so I will stop here. I really try not to dwell on it. I feel for people in chronic pain. I can see how it changes personalities.

Hmm yeah I understand and it's totally respectable to want to avoid pills.
I'm a psychiatrist myself, so I'm more acquainted with the medications to treat mental health issues than the average guy, which also might make me more prone to suggesting them as a solution.

There's a lot of research that points to mindfulness practice as a way to improve well-being and alleviate generalized anxiety / health anxiety / chronic pain. You might want to try it if you haven't already. I participated on a mindfulness course and group practice as part of my training and found it useful (but it was easier to practice participating in a group rather than continuing on my own).

Kind regards,
🇦🇷 "Hope is the only thing stronger than fear."

Offline Bucklandbury

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Re: Introduction - Bucklandbury
« Reply #25 on: October 14, 2021, 09:16:46 am »
Sorry to hear about your neuropathy. Is there anything you're doing that helps? Have you tried duloxetine / pregabalin ?

So I have researched this one before. Maybe newer studies shows benefit? I am disinclined to try it.

https://pubmed.ncbi.nlm.nih.gov/20124207/

Quote
Classification of evidence: This Class II trial showed that pregabalin is not more effective than placebo in treatment of painful HIV neuropathy.

Seems like I have read similar things for duloxetine - "Cymbalta" here in the U.S. - but I cannot now find that study. I cringe when I see the side effects:

https://www.drugs.com/sfx/cymbalta-side-effects.html
https://www.reddit.com/r/cymbalta/

And, yes, I know the manufacturer has to list all possible side effects.

Nonetheless, thank you for the suggestions! I will see what my PCP wants to do.

If she wants a skin punch, I am going to laugh at her since she wasted my time with the neurology consult who only did half the EMG test to determine I did not have large-fiber neuropathy. I knew that going in! Sadly, seeing that neurologist was a total waste of time and money. I didn't need to rule out what I knew going in. (Horses not zebras.)
« Last Edit: October 14, 2021, 09:44:08 am by Bucklandbury »

Offline CircularNatural

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Re: Introduction - Bucklandbury
« Reply #26 on: October 14, 2021, 10:47:00 am »
I have read the thread more thoroughly and have a few comments.

To Bucklandbury:
I believe that things will get better with time with you, as Jim Allen and the rest well said. You are recently diagnosed and are probably panicking (like I am doing since I also got my dx just a few months ago). Anxiety is known to amplify feelings and sensations, it's also normal to feel hyper-aroused and over-attentive to your body for now. I'm sure that as you go through this rough first part of your treatment, it will get better, especially once you don't need any of the prophylactic antibiotics and extra medications.

Have you read or tried accupuncture? It might help with pain issues.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5359694/

Also, you might want to read about capsaicin creams. These have spicy red pepper extract (capsaicin is the molecule which provokes the heat reaction to this kind of spicy spices), and they are also used topically to help with paresthesia and such.
https://www.webmd.com/pain-management/what-is-capsaicin

In my case, I'm finding help with pregabalin at 150mg/day (2 capsules separated by 12 hours) mostly for generalized anxiety disorder and health anxiety (I suffered from these before and they have evidently worsened after the dx). In the US, pregabalin is not approved for anxiety issues, but you could probably get a prescription for other related issues such as chronic pain / neuropathy / fibromyalgia which are valid indications.
Pregabalin is thought to act by blocking calcium channels that are related to various neurotransmission routes, diminishing their hyper-activation / overstimulation / by raising GABA (the inhibitory neurotransmitter by excellence).
In normal doses, it is not known to cause any serious side effects, maybe a little sedation or light dizziness which is dose-related. In my case, I can feel myself a little bit hazy right after I take the pill, but it also alleviates my nervousness / slight panicky feeling, so it's desirable up to some point.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7174704/

Hope things turn out better in a few months from here (I'm sure it will!)
Take much care and try to take it easy for a while, maximizing relaxation activities and anything that might improve your well-being for now, "one day at a time".

Big hugs!
🇦🇷 "Hope is the only thing stronger than fear."

 


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